The traditional teaching about the role of the cerebellum has typically been that it coordinates movements and “fine tunes” them. It provides balance when walking, and stability of a hand when reaching for a glass of water. When the cerebellum sustains an injury or is malfunctioning, then the result may be gait disturbance, falls, dizziness, or tremor.
The cerebellum is featured in red in this image. Image credit: http://www.brainhealthandpuzzles.com
The ideas above are what I learned in high school biology, in anatomy, and in physiology. Even throughout my neurology residency training, I largely thought of the cerebellum as a structure that provided balance and fine tuned movement.
It has interested me during my time in clinical practice to witness the fallout from cerebellar stroke, particularly in the younger stroke population, because it is often far beyond balance and movement. Yes, the symptoms mentioned above are often present in some form when the cerebellar stroke occurs, perhaps along with a headache and/or nausea. However, the patients who struggle with recovery for months or years following a cerebellar stroke often complain of symptoms that do not fit with the traditional concepts of what the cerebellum is supposed to be doing.
Some of the complaints I have heard from numerous cerebellar stroke patients are as follows:
– Many struggle with the same cognitive symptoms that patients with strokes injuring the frontal or parietal lobes experience, such as difficulty with focus and multitasking, and because of this, they complain of difficulty with short term memory retention.
– Other cognitive symptoms may exist as well, such as feeling overstimulated, or having difficulty following a conversation in a group of people.
– Difficulty with language fluency (aphasia) has afflicted cerebellar stroke patients in my own experience, and their frustration after being denied disability benefits is palpable.
– Some cerebellar stroke patients express that they are unable to dream any longer, or that when they close their eyes to picture a scene – being at the beach on a breezy day, or running through a field of grass and flowers – they are unable to mentally visualize such a thing.
– Sometimes their significant others claim these patients have demonstrated changes in their moods or personalities, and that their relationships seem different since their strokes.
MR images of Jonathan Keleher’s brain (A and B). The black diamond-shaped void in images A and B reveals Mr. Keleher’s missing cerebellum. The images on the right demonstrate the presence of a cerebellum in the space in a normally developed brain. Photo credit: Massachusetts General Hospital, courtesy of Jeremy Schmahmann for use on NPR.org
Last month, as I was driving home from work one evening, I heard this segment on National Public Radio’s All Things Considered, and I thought – yes! I have to share this on The Stroke Blog with readers! This piece summarizes the complexities of the cerebellum so well for the public, and I hope those of you who read this will take a few minutes to listen to the segment if cerebellar injury is of interest.
The piece features Jonathan Keleher, a 33 year old man who was born without a cerebellum. In the segment, it is explained that Mr. Keleher struggles with emotional complexity, language, and other cognitive tasks beyond imbalance and impaired motor skills. However, because he received intensive physical and speech therapy at a young age while lacking a diagnosis, he was able to demonstrate the wonder of neuronal plasticity – the ability to utilize other parts of the brain to accomplish tasks normally dependent on the cerebellum. He walks independently, and he works in an office environment. He lives independently.
We like to believe that each function is neatly packaged within a certain compartment of the brain. Patients often ask: “If my stroke was here [pointing to a specific part of the brain], then what problems should I expect to have?” While some structures in the brain correlate more or less with certain functions, it really is not that simple, as evidenced by the complexity of the cerebellum, and by what a young man who lacks one has been able to accomplish in its absence. The brain is a large community of cells, an interdependent network that makes us who we are, and which enables us to survive from one second to the next.
Update on November 14, 2017:
When I published the above blog post on cerebellar stroke in 2015, I never dreamed that it would become the most frequently visited page on The Stroke Blog day after day. The comments readers have posted in response to it, and the emails I have received from patients and their loved ones, have underscored the need for more resources about cerebellar stroke. I have heard you, and am working currently to create such a resource beyond a blog post. Stay tuned.
I have also received many emails from patients who have been diagnosed as having vertebral artery dissections believed to have caused their cerebellar strokes. Until recently, there was no largely comprehensive resource for patients struggling through the aftermath of vertebral dissection, but a few months ago, my speech language pathologist colleague, Amanda Anderson, and I published a book for vertebral and carotid artery dissection survivors (click here for more information) and their families in hopes that it would provide badly-needed answers to lingering questions. If you are a vertebral artery dissection survivor, I sincerely hope you find the book useful, and that it at least somewhat helps to validate your “new normal.”
Cerebellar stroke can be more difficult to accurately diagnose because the symptoms frequently don’t scream “Stroke!” the way that weakness on one side of the body or a facial droop may. I have seen cerebellar stroke patients in the acute setting diagnosed with migraine, benign forms of vertigo, intoxication, and substance abuse. When diagnosed early, situations leading to cerebellar stroke can be successfully treated with better outcomes for patients. Awareness of cerebellar stroke in both the community and amongst medical providers is critical for earlier diagnosis and more optimal management.
108 comments
dean reinke says:
Apr 14, 2015
Former PT Amy Shissler explains her experience with her cerebellar stroke quite well.
http://mycerebellarstrokerecovery.com/2015/03/16/cerebellum/
Diana Grimm says:
Jul 22, 2015
My daughter is 27 years old she did not have a stroke her cerebellar is shrinking and has all of the symptoms that was mentioned
michael clayton says:
Apr 14, 2015
It is very refreshing to read you comments on effects of cerebellar stroke as I have been recovering from a massive cerebellar stroke for the last 7 years.
I was 38 years old, in good health, and a busy practicing hospitalist (internal medicine training but working exclusively in a hospital) when I unexpectedly had a huge, idiopathic cerebellar stroke. I was intubated for several weeks after significant cerebellar swelling led to a decompressive sub-occipital craniectomy. Excuse the medical talk – basically I had the back part of my skull taken off so my swollen brain had room to swell.
When I woke up slowly in the inpatient rehab of the hospital where I used to work the process of healing began in earnest. As a hospitalist, I had taken care of many patients with acute strokes but didn’t have an appreciation of how plastic the brain is and how healing can occur. At first, I couldn’t roll over in bed, swallow, speak and was completely incontinent. Many things got better over the first few months. I left the rehab unit in a wheelchair but able to speak, feed myself, was fully continent.
I remember distinctly the mismatch of my doctor’s understanding of what I was experiencing and the life I was living. I had profound difficulty multitasking and my short term memory was pathetic. For example, I wasn’t able to hold a phone number in my head long enough to dial it. I would need to reference one digit at a time. In this state I returned for followup with the neurosurgeon who had taken off part off my skull and he was wondering why I wasn’t back at work already and even wrote so much in his notes confusing the ongoing disability evaluation.
As you state, I recall that for months I couldn’t take part in a conversation in a group of people and even to this day have difficulty with large groups of people. Fortunately my wife is a saint, and supported me even though she is now married to someone with a different personality.
I will unlikely ever go back to work doing what I was before but fortunately I have a good quality of life now and am very grateful for each day.
Like I said, it is very refreshing to read your blog as it confirms that much of my experience is typical for damage to the cerebellum.
Susan says:
Nov 6, 2017
My sentiment exactly. This is quite a struggle. You’re lucky to have a supportive wife.
Susan says:
Nov 6, 2017
My sentiment exactly. This is quite a struggle. I had 2 small cerebellar strokes since 2015. It took six months to recover the first time. I struggled every day with dizziness, weakness and having trouble multitasking. Someone drove me to work for first 2 months of recovery. Did my best to cover it up at work. The second time was worse as I couldn’t walk independently, had vertigo, confusion, left sided weakness and could not process my environment. Although I have never been on an acid trip, thankfully, this is what came to mind when trying to explain to others what I was going through. I looked fine on the outside but it was like being in a funhouse with all those distorted images reflected in mirrors. Anyway had my cavernoma resected followed by hydrocephaly which necessitated a ventriculostomy. Ended up with a meningocele too which finally resolved 3 months later. I was never informed of the encephalomalacia when I was discharged. I now suffer from more headaches and migraines as time goes on. Is there anything you can tell me about this condition. I have found very little info and the neurologist I saw only said it could get worse.
kathryn Crater says:
Dec 4, 2017
Michael, my name is Kathryn. I had cebererllar strokes both right and left. right being primary. I suffer from tremors in the right hand, major major headaches. I now have softening of the brain. I am very scared as I read all the literature on it. what will happen when this softening occurs and lays on the brain stem? will I not be able to walk/ I currently walk and do well for myself. my strokes where found 5mths late, by myself through a second opinion. I have had two stints of inpatient rehabs. I worry for my future and what to plan ahead. as you have figured out, my neurologist just hasn’t answered this for me. I clearly see this as an yes or no question. I’m no doctor, but only I know how I feel. the softening is occurring per MRI on the right side currently. Does/will this change. I just found your blog today. appreciate any feed back, I’m 53.
Michael says:
Aug 18, 2018
Michael, Interesting story. I am a 68- year old anesthesiologist and had a vertebral dissection and aneurysm clipping 2 years ago. I have returned to work, full-time, and have recovered almost entirely except for some ataxia. Supposedly I have Wallenberg’s syndrome which can accompany strokes like I had. There is a nice rehab facility in Louisville where I spent some time, Frazier Rehab. Are there any good places that you have become familiar with over the last few years, specifically with regard to overcoming some of the effects of ataxia, specifically with regard to learning to run again? Regards, MFH
Krista Shroyer says:
Dec 28, 2019
Michael, Krista here. I know you posted this awhile ago but thank you for taking the time to post your story.
I was training for a half marathon when a distracted driver hit me. Because of that I was in the hospital for two months and early on during that time I had an ischemic cerebellar stroke. There is very little research on having a stroke due to trauma. Both hemispheres of my cerebellum were mostly removed (70%) because they didn’t immediately diagnose my stroke and things looked bad. My husband realize something was wrong, but they didn’t take in account that I was having a stroke because of the trauma. Like you, I also left the hospital in a wheelchair. Like you I also had to relearn how to walk, talk, swallow. It was a long time before I could eat regular food again, the hospital was very nervous. I had to have many tests. I also had a trach, and a feeding tube.
I also suffer from short-term memory problems, and balance issues. The technology on the phone is my very good friend. I also get slightly disoriented when several people are talking, I have to focus on what one person is saying I can’t follow the whole group if there are several people. Several of the things the blogger mentioned as being reported problems of a cerebellar stroke resonate with me. Like you, I am very lucky to have my husband to help me. I would also if possible like to go back to work. I was 34 years old when that happened. I am a little over a year out now.
Yes, this was a refreshing read.
Samantha says:
Apr 14, 2022
I understand all that you’re saying and thensome. In 2008, I had two infarcts involving the left PICA along with an intracranial hemorrhage in that general area. I did return to work as an ER/trauma RN fortunately; however, as the years have passed the cognitive deficits have become more pronounced causing an extreme increase in frustration and an intense struggle to feel understood. Most people in my life believe that since I was discharged from the hospital all of those years ago that I am fully recovered without deficits because I “look normal.” I’m blessed with a very patient and understanding husband; however, the struggle to be understood as my brain is now is seeming impossible. I feel as though I am perceived as unintelligent and completely socially incompetent and awkward. I don’t know what to do or how to communicate to those in my life that I am cognitively damaged and my fight to overcome the latter has been unsuccessful and ultimately very lonely.
Amanda Anderson says:
Apr 15, 2015
For stroke survivors who have trouble with word finding, reading comprehension, writing and describing, see speechtherapyaphasia.com for resources and information how to improve communication Stroke books to help with recovery.
Amanda Anderson says:
Apr 15, 2015
http://www.speechtherapyaphasia.com/
Ron hugll says:
Jul 21, 2015
I two suffered fom a stroke 3 yrs ago it’s been a long ass process a lot of Rehabbing,physical & occupational by it’s getting better still have issues with my hands picking up things with my right hand but i have to concentrate more to accomplished things & i don’t walk as fluid as i once did so it looks like i need more therapy just want to get off this s.s.i & get back to living the life i m used to . any suggestions?
Monica Hughes says:
May 9, 2017
YES, I TOO HAVE SUFFERED, STILL IN A WHEELCHAIR, FOCUSING ON WALKING.
DO THE BEST YOU CAN! METRNOM THERAPY HAS HELPED ME A GREAT DEAL!!
Isobel Standen says:
May 24, 2016
I had a stroke in 2007 age 58, no reason could be found why. It was in my right cerebellum I do not have dizziness my brain sways like being on a boat, I have falls without any warning, I bend over and get stuck in that position. The worst for me is falling backwards which leaves me completely limp. I have trouble walking my brain feels heavy.&strange, I sleep 4 3 days . This problem is happening more often. I have other issues you have already addressed and some more.
Katherine Conde says:
Oct 28, 2016
My husband had a blood clot to the cerebellum and when the brain swelled his left side became paralyzed. To date he still suffers from dysphasia (cannot swallow) aphasia(cannot be understood when he speaks), however his left arm and leg are starting to move. How long does it take to recover and how much physical, occupational and speech therapy does he need on a daily basis? He has speech therapy three times s week. The physical and occupational therapy was stopped due to insurance issues but we still work with him at home. How many hours a day do we need to work with him on his therapies?
Michael clayton says:
Jan 8, 2017
Katherine,
I think I am uniquely qualified to address your question. I too had a cerebellar stroke about nine years ago. I am a doctor (internal medicine) and went through the experience from an experience of awe for all the things which were never taught in medical school but I was experiencing. I had a massive bilateral cerebellar stroke that caused severe swelling which required me to have a partial craniectomy for me to survive. When I became aware of the world again in when I was in inpatient rehab, I couldn’t roll over in bed, speak, swallow, was completely incontinente and had a wife and two small children at my bedside wondering what next. When I finally went home two months later I was paralyzed in on my right side, was in a wheelchair, and had severe cognitive and speech problems. All of that got better. The brain has power to heal far beyond what I ever understood when practicing medicine. So yes, the traditional teaching about the cerebellum is overly simple. Any brain scientist call tell you that but by t the ideas still pervade practice. As for a timeline, it took me years to get back to a relatively normal life. As for therapy, the most important thing is to engage yourself and participate as much as you can and in daily life. Feel free to contact me as I would be happy to share more of my experience with you
Lynn says:
Jan 29, 2017
Hi Michael,
It’s nice to see how articulate you are in your comments – gives me hope. My husband had an ischemic cerebellar stroke a week ago while we were vacationing in AZ. It looks from your picture like you may be in the southwest. Our maybe it’s a vacation photo!
I know every case is different but thank you for showing what’s possible and shedding light on continued difficulties.
Michael clayton says:
Jan 30, 2017
Hi Lynn,
Sorry to hear what you’re going through. I’m in San Diego and send you good thoughts as your husband recovers. The brain is an amazing thing.
lynn says:
Feb 4, 2017
Thank you – he’s getting better – and I’m sure we’re in for many surprises, not least of which is how amazing the brain is.
Jeannie says:
Feb 8, 2017
Hi Michael,
My 37 year old daughter had a severe cerebellar stroke on Dec. 3, 2016. She had received her first round of chemo for DLBC lymphoma 8 days prior to the stroke. She is in acute rehab at Johns Hopkins. I think she is going to be discharged next Monday. Her father and I will be taking care of her at our home following her radiation here at Johns Hopkins. She will be receiving outpatient rehab here too until she is finished with cancer treatment. Then we will be traveling home to South Dakota where we live. She is doing great but I want to be able to help her the best I can. Is there anything you would suggest?
Michael says:
Feb 10, 2017
Jeannie, I am so sorry as your situation sounds very difficult. You are already helping her tremendously by taking care of her through this difficult time. The only suggestion I can make is probably a bit counterintuitive. Assuming she is progressing and doing well, I would avoid the impulse to do basic things for her (within reason) and let her struggle with those things herself. Much of the healing in the brain comes from the process of relearning basic activities and it can be hard to resist the temptation to just do whatever the loved one is struggling with. Also, if she is able, I have found yoga to be very helpful with movement, balance and coordination. My thoughts are with you.
Kirby Dingcong says:
Feb 10, 2017
Hi can you email me back. I have a lot of questions. My wife is going through a cerebral stroke right now and it’s rough. Thanks
Angela Perry says:
Feb 22, 2017
My fiance tired to.commit suicide in November of 2016. He overdosed on Morphine, went into.cardiac arrest 3 times and suffered 2 major strokes in the cerebellum.
He is home and has recovered fully with his mobility. His coronation is still off a bit, but what I notice the most is the personality change and flat affect.
Jodi Dodds, MD says:
Mar 8, 2017
Hello. Unfortunately, I cannot give medical advice specific to individual cases on the blog. It is intended to provide information for young stroke survivors and their loved ones. If there are a lot of lingering questions, you may want to search for a vascular neurologist in your area and schedule an appointment to discuss your wife’s stroke. I wish you both the very best as she recovers.
Hunter B says:
Mar 26, 2017
Very interesting to come across this blog posting. I incidentally had a large benign cerebellar tumor removed 4 years ago and still have a long ways to go. I think I can relate to certain aspects of what everyone here is going through. Luckily things have improved somewhat over the course of 4 years.
My primary issues are dizziness, vertigo and nausea. I also have issues reading more than a few paragraphs and listening to conversations. I am trialing a low dose of Effexor as some people that have migraine related vertigo find it helps. Not sure if that is an option for the folks on this blog but I thought I would mention.
K Mcintyre says:
Sep 6, 2017
Mr. Clayton,
My husband’s experience was similar to yours. However, he was locked in with vertical eye gaze. He has since unlocked. Would it be possible for us to connect and speak in person?
Nadine Frees says:
Dec 31, 2017
Michael, my heart goes out to you and your family. Thank you for sharing your experience.
My 34 year old daughter just had a cerebellar and bilateral stroke on Dec 22 2017 during a chiropractic visit having her C2 and (C1 or C3 can’t remember) adjusted (she is a RN scheduled to enter the LPN program this week). (Not going to happen short of a miracle). She questioned the adjustment in her head, but still allowed it. She immediately started going numb on one side and paralyzation on the other side with nausea, headache, impaired vision and vertigo. She was taken to the hospital immediately and given clot buster in good time. The numbness and paralyzation went away within a couple of days. The nausea is subsiding and they finally are treating the headache. Now, December 31, 2017, she is in rehab. Insurance is limited to 7 to 10 days of rehab. We are very pleased with the progress that she has made in such a short time but also concerned that she may never walk or drive again. Has anyone ever complained of the chiropractor causing a stroke? Also, how long will it be until we can expect to know if her vertigo, vision and headache are going to be permanent?
Thanks for the support.
Nadine Frees
Jodi Dodds, MD says:
Jan 1, 2018
Nadine – I set this up as a forum for patients and their families to discuss stroke without my interference, so I rarely comment on the blog’s comments. However, I feel compelled to do so here. My co-author and I address the issue of chiropractic manipulation and dissection/cerebellar stroke in the book we published on carotid and vertebral artery dissections this past August (Carotid and Vertebral Artery Dissection: A Guide for Survivors and Their Loved Ones). This section was included after I had been asked this same question dozens of times. There is actually even a scientific statement from the American Heart Association/American Stroke Association on the association between especially vertebral artery dissection and chiropractic manipulation. You can click here for more information. Wishing your daughter, and all of the cerebellar stroke survivors here, the very best with recovery and stroke prevention moving forward.
Russ M says:
Jan 1, 2018
I can trace my stroke back to a neck massage, which led to my left vertebral artery dissection.
Do not ever let anybody touch your neck whether it be a masseuse or a chiropractor. If it is sore, then ice it or put heat on it and take an Advil.
Dr ky danladi says:
Apr 3, 2018
This is awesome.the information has widened our medical knowledge and hence will impact positively on the quality of care to cerebellar stroke patients. There is inadequate knowledge and treatment for stroke patients. There is dare need for cutting edge treatment for stroke patients. There is too much hopelessness for stroke patients.
Dr ky danladi says:
Apr 3, 2018
Thank for the post,being a medical doctor in the military and having a serious challenge with bilateral cerebellar stroke is very very frustrating. There is inadequate knowledge and treatment for brain injuries. More research work needs to be done.
nora jaeger says:
May 24, 2018
had cerebellar stroke in 2015 still have severe occlusion in r mid basilar. went thru 6mos of vestibular rehab for extreme dizziness, actually felt worse, do you think this sensation of freefalling from empire state building will ever stop my quality of life is down the toilet
MB Edwards says:
Feb 22, 2017
Your article has been very helpful. I had three cerebellar strokes in June 2016. People look at me and think I’m the same, but my brain is not the same. I can no longer interpret piano music quickly with the result being many more wrong notes peripheral areas limited in playing. After 3 mo of double vision, I can drive but too much traffic is a challenge. I no longer sing in the choir because it’s difficult processing the music amidst so many voices, instruments, cd and director. Yesterday I experienced extreme frustration and confusion hearing multiple conversations within a lively room with much activity all around. Throughout all of these situations I’ve come to realize that overstimulation, especially visual and aural, is something I can no longer handle. Your article addresses this and I am grateful. I’ve always had a good sense of direction and now this is a challenge along with short term memory and remembering words. I simply get stuck. Thank you. MB Edwards
Natleigh says:
Feb 25, 2017
Hello,
Reading the connects, I related with yours. I had a cerebellum stroke after brain surgery s little over a month ago. I have a disconnect in my eyes and see double. Sounds like you have experienced double vision?
Allison says:
Nov 6, 2017
MB Edwards, reading about your experiences confirms my suspicions about why my daughter is struggling so much with frustration. She had a hemorrhage and subsequent cerebellar stroke in January. She was incredibly moose sensitive in the rehab hospital but it did improve over the months. Now she’s back at school and really struggles with the noise in the classroom. She works so hard to suppress her emotions at school and then loses it nearly every day when she gets home. She can’t articulate all this but I figured it was all stroke related. Now I’m sure.
Barbara Clark says:
Mar 26, 2018
I read your reply to the article. I had a cerebellar stroke in July of 2017. Then I had another TIA in February 2018. The second episode made me feel more anxious than the first. I too feel alot like you described in your reply. Too much traffic makes me get a headache as well as multiple conversations can be confusing and frustrating. Thank you for your reply. I play piano and it helps but is more of a challenge sometimes. Overstimulation is an issue. I would love to talk to you more.
Barbara says:
Jul 30, 2018
I had a cerebellar stroke and all you’ve mentioned I experience too – and some das I wake up and my speech is back to me but thenin just a little bit when Istart focusing on other things or maybe if someone calls me then there goes my speech all over again and you can’t understand me again – I am also very anxious and start feeling like something is wrong / like my heart or timing in my body gets off time and my speech goes crazy – does this make sense? I really appreciate you sharing.
Barbara
Jesse Ritz says:
Mar 18, 2017
This forum is very helpful to me, providing hope and encouragement. I suffered a right hemisphere cerebellar stroke seven weeks ago. Since the atypical symptoms were missed by the ambulance crew and ER, the ER doctor pushed 3% saline to the site of the infarction for ten days. I became aware after that and spent three weeks in a Post-Acute Rehab unit; I have no recollection before that except for the moment when I had the stroke which left me lying on the bathroom floor vomiting into a bowl. The therapists were highly trained and experienced, providing nothing but encouragement, so important for someone recovering from a stroke. I use a walker at night and upon arising. During most of the day I stumble through the house without assistance. I put grab bars by the toilet and bath tub and am happy to be able to sit in a tub full of water to bathe. I picked that tub 45 years ago because it has wide flat horizontal surfaces on both sided which aid in getting to a standing position. We have intercoms with loud call buttons throughout the house that are reachable from bed, bath, toilet, my recliner, etc. Besides vertigo, I discovered some cognitive impairment, but I expect others to help me deal with that. Family and friends sent me cards and visited me in rehab; the blessings of so many people who care about me and prayed over me cannot be overemphasized. The hospital chaplain is a man whom I volunteered with at scout camp for many years. I received get well cards from three American Legion posts signed by every officer and many members of those posts. Those were important at the time and will be cherished mementos as the years pass. I mention these things, not for stroke victims, but for family and friends who read this forum. I cannot overemphasize how important you are to those recovering from a stroke. My wife visited me every day while I was in the hospital and rehab… a solid month. I left complimentary reviews of those who cared for me in and after rehab. I have tears in my eyes recalling those on whom I depended and now depend; they make life sweet.
ROBERT MCNAIR says:
May 14, 2017
I experienced a cerebellar stroke, possibly, due to heparin (HIT) during back surgery fusion in 2007.
Still have dizziness, vertigo, am on antidepressants and antivertigo drugs.
Still doing rehab to try to gain balance and coordination in lower limbs.
Feet feel like I am walking on a floor of marbles.
Still trying.
Thanks so much for the info and comments.
Will keep trying.
Tampa, FL
Shilinda McKnight says:
Jul 6, 2017
I been in bed since Nov. From this sugrey I been having problem like my feet sweat a lot my chest hurts my Han shakes my leg do to sometimes no headaches thank God
Lisa rose says:
Jul 11, 2017
Stroke:Cerebellum Clot. Er and then life lighted. 75 years old. No food or drink for 4 days. Lost weight. No rehab..sorry nurse and a fall they did not help me with. This was a large trauma center in Houston. This was not a caring or warm and fuzzy place. 7 1/2 weeks now and I use walkers and wheelchairs. Spent 4 weeks in an ok rehab center. Thank God for my home and caring family. Was it my age that prompted them to transfer me? Do not know. Medicare dictates. P ladies are great. I have another 2 weeks. I am weak, headachey, off balance and scared. I am ok when I lay flat and am sitting. Prior to stroke I had swallowing problems. Did not know why. Pre-stoke, perhaps. Saw a neurologist. Put me om neurontin. No help. He said I have Wallenberg’s syndrome. Hubby is hoping I do get better. Paronoid me thinks differently.
Felicity says:
Jul 19, 2017
Hello, thank you very much for writing this …reading it, and the comments from all the readers has been very helpful to me. Now I don’t feel so alone! In 2003, when I was 40, and my children were young, all of a sudden I had a stroke in the cerebellum, could not move, sit, or stand, the head pain was shocking, weeks of projectile vomiting and loss of vision, …but the medical staff took weeks in the hospital to work out what was going on as they thought it was a bad migraine and kept sending me home with pain killers..even when still vomiting! Finally a specialist happened to be visiting the hospital and was able to direct a course of investigation and treatment that saved my life. Did an MRI and turns out the stroke was as a result of CSF leaks, low CSF pressure, dural ruptures, intracranial hypertension, sub-arachnoid hemorrhage, cerebellitus infection in the meninges, lesions and brain sagging. Was in hospital for 4 weeks, took a year to walk properly. Since then, it has been a very lonely 14 year path of recovery largely due to the loss of cognitive powers and memory and lack of medical guidance. Unfortunately the local neuro doctors (and I have seen about 10 of them) still think the cerebellum only controls movement and coordination, and cannot understand why I can walk but have lost cognition and focus as a result of a cerebellar stroke…so they say I am depressed and take anti depressant medication as they don’t know what else to do. Damned if I take antidepressant medication. I am not depressed, it is the cerebellum stroke that has caused loss of cognition, memory and focus. I was working full time before in a high paid job, but now I now live 50% resting in bed, drink lots of weak coffee to keep up the CSF levels, no stressful activities, avoid stimulation, I can read slowly and just take one day at a time..and am thankful I am alive!!!
Anne says:
Aug 7, 2017
I had a stroke in the right side of my cerebellum in Jan 2016 I was 31, the doctors are unsure as to why I had this however I am now taking blood thinners pendropril and statins for life and these meds come with there own illnesses I am recovering well although I struggle with dizzyness and weakness, amongst the rest of what you said!
faye mieczkowski says:
Sep 12, 2018
I had a stroke in the back of my cerebellum 3 weeks ago. I felt dizzy and got up to walk but couldn’t walk. No known cause, no clots, no plaque. I do struggle with dizziness off and on. Taking aspirin and Lipitor. I worry about getting another stroke.
Robin says:
Sep 10, 2017
I had a bilateral cerebellar stroke this year at 34. I was lucky the ER doctor recognized my symptoms as stroke and gave me the TPA. But the hospital neurologist insisted it was an inner ear issue and that I was too young and too healthy for a stroke. This went on for 3 days until my symptoms (couldn’t walk, nastigmas, vomiting, headache, double vission) didn’t improve and that’s when he ordered another scan and confirmed it was indeed a stroke. He had refused to listen to the nurses, ER Dr, or PT when they were all saying it was a brainstorm stroke. I wish people would stop assuming that being young is a disqualified for a stroke.
I’m glad you mentioned the cognitive effects post stroke. I’m a phd student and although I’ve made a great recovery, the cognitive fatigue, attention issues, and memory problems are making school extra, extra challehening. Whenever my body or brain fatigue, my symptoms return and I’m forced to stop reading or writing and just lay down. I really hope doctors will remeber that recovery is about more than just the physical gains and start pushing for more research to better understand and treat the cognitive fatigue.
Agustin says:
Oct 17, 2017
I had a cerebellar stroke 6 months ago. I am 43 years old, healthy, mountain biker, no toxic habits. I suffered dizziness, difficulty to walk, hoarseness, difficulty to focus at work, to talk in a group, driving with too much traffic, feeling confusion when hearing a lot of people, or walking in a mall where lightning is intense and hallways are very wide.
It took 2 months to diagnose it properly because the synthons where not severe. And one month more to find the root cause: spontaneous vertebral arteria dissection (no trauma). At first it was a release because I was constantly wondering “what did I do to suffer a stroke?”.
4 months after the first episode I felt worse because a little journey to the beach, the inertia of my head on the car (it was like it weighted 50 kg), the sun (even under the umbrella), the walks… and then I felt depressed because instead of improving my health I was feeling very dizzy even more than the first days.
1 month later, I got used to dizziness, I tried to be accompanied by friends and family, and I got well. I came back to work after a lot of highs and lows. I still have problems when getting up quickly, starting to walk or talking to fast and loud. Patience and more Patience is the only way.
Thanks for the blog and all the stories that help to understand the condition, the rehabilitation and that there are really a lot of strong survivors!
Jodi Dodds, MD says:
Oct 17, 2017
Thank you for leaving a comment. I have been amazed that the post that consistently receives the most hits each day is, hands down, the post on cerebellar stroke. Clearly cerebellar stroke survivors are seeking more information in order to understand the aftermath.
Amanda Anderson, a speech-language pathologist, and I published a book specifically for patients with vertebral and carotid artery dissections in August, attempting to answer the common questions patients have about both VADs and their aftermath. It is available through Amazon, if you are seeking an additional resource.
Agustin says:
Oct 19, 2017
I forgot to mention that I am “joint hiperlax” (a lot of ankle and knee twists, and several shoulder dislocations until I went to the OR). No pathology, but inherited laxity. Neurologists told me that is related to cervical artery dissection.
I’ve already ordered the book on amazon. I’m looking forward to read it. English is my second language, I’m spanish, but I think I’ll manage.
Thanks again to shed light on this topic. We don’t feel so alone 😉
Agus
Sue Bertsch says:
Dec 1, 2017
Hi Agustin, You probably have some version of Ehlers Danlos syndrome, a group of connective tissue disorders. You can research this online. You may have the vascular form of this syndrome, classical, or hypermobile. Try chronicpainpartners.com. Sue Bertsch
Agustin says:
Sep 13, 2018
Update after 18 months vertebral artery disection and cerebellar stroke
(44 years old, Male)
Hi,
after 18 months of my vertebral artery dissection and cerebelar stroke I’m feeling very well, just some dizziness
if I sleep less than 8 hours for 5 days in a row or if I over exercise. My artery didn’t heal because I was
diagnosed 2 months after the first symptom and I didn’t take aspirin during this time except for the first 5 days when
I felt a strange and new pain in the lower back side of my head. Now, I try to sleep 7-8 hours from monday to thursday but it is not
easy when I get up early to work, then I sleep on the friday evening about 4 hours (a long nap) and 9-10 hours
at night. My fitness training is now pilates 2 days/week and some spinning (around 25 min/week) under
80% of my max. heart rate. 4-5 days later I feel just mild dizziness very easy to stand. The good news is that I’m able to do a short
hike in the mountains even at very steep paths. I’ve been traveling by plane, visiting cities and noisy places. I still feel a little
confused when walking in mall corridors or brightly lit rooms where the vertigo triggers are always present (a lot of light and noise)
My conclusion is that is very important to rest as much as possible and to move the head slowly to avoid sickness and nausea,
but the tangible improvement is real even 18 months later. I hope it will be a huge encouragement for everyone.
Regards
Allison says:
Oct 17, 2017
My daughter (9) suffered a massive hemorrhage in the right hemisphere of cerebellum in January due to an AVM rupture. This is considered a hemorrhagic stroke. She is making a good recovery but was incredibly sick and disabled for months. Bleed compressed her brain stem so she Needed a tracheostomy, Gtube, couldn’t talk for 5 months. She received excellent inpatient rehab until August. She still needs a walker but slowly is able to take some steps. She’s now back at school but is having trouble with filtering noise and distractions and keeping frustrations in check. Definitely much more going on than just balance issues. We are so thankful to have her. She came very close to dying.
ryan jones says:
Nov 1, 2017
It was very nice to find this article because I have all of the issues listed in it. I think I may have found it before, but my memory sucks now and I don’t really remember. Anyways, I was in the Army and I had two strokes in July of 2013. I had my first strokes that was a cerebellar stroke at night before bed. I couldn’t walk, I was seeing weird colors and shapes and I had jet engine noises in my left ear. I went to bed after throwing up and what not thinking it was a weird migraine. I was in great shape and I was only 31. I drove from Dallas, TX to Waco, TX the next day for some Army training (recruiting) and attended classes all day. That night I went to sleep and woke up to a second stroke sometime during the night. I remember it waking me up and then I passed out again. I guess I wasn’t in my right mind at all because I woke up to my alarm, shaved and got my uniform on and drove from my hotel to training. I couldn’t see at all because I had bad tunnel vision. I am surprised I didn’t wreck. later than night someone finally took me to the hospital finally and I was told I had two strokes. I spent a week there and after being home for a week I had a hemorrhage somewhere and a near hemorrhage in my right vertebral artery that was complicated by the coumadin and lovenox blood thinners. Because of that they decided to sacrifice my right vertebral artery because it was about to fail. They did a coil embolism or something. Anyways, from all of that I developed epilepsy, I am blind on the right side in both eyes, I have a daily headache with migraines a few times a week, memory issues (diagnosed as mild neurocognitive disorder), I can’t do beyond basuc math on q calculator, major depressive disorder and other stuff. I also get long winded at times lol. Anyways, thanks for the article
Ryan Jones says:
Jan 1, 2018
Adding to my comment from November…I was reading through my medical paperwork a couple of weeks ago while I was dealing with seizure recovery. I though I only had two strokes, but I actually had three. I had one on the left side of the cerebellum, right side of the cerebellum and one in the occipital/parietal lobe area. It was weird because I didn’t have the droopy face stuff, paralyzed side and my balance was barely different. I did have and still have problems with judging distance and things like that along with all of my other issues I got from my strokes like blind on the right side in each eye, epilepsy, mild neurocognitive disorder, major depressive disorder, migraines and a headache that has not gone away since 2013. It get dizzy and fuzzy headed a lot if that makes sense. I also get weak and tired often. It is hard to tell at times if it is just from the strokes or from epilepsy or other things like panic attacks and so on. All of my strokes stemmed from a dissection in my right vertebral artery that they ended up sacrificing with a platinum coil. It was never determined how that happened though. I was in the Army and had some hard landing on parachute jumps sometimes and I was in an accident two years before my strokes and fought 4 years before my stroke, but they ruled all of that out because of the timeframe. I went to the chiropractor, but he never adjusted me neck. I guess it could have just been a weird thing. Who knows. It is nice to read this blog and know that I am not alone. I do wonder though if I had made it to the ER faster if if would have stopped me from having so many complications since the strokes. I didn’t go to the ER until almost three days after my first strokes and a day and a half after the occipital stroke that took my vision.
I have noticed that since the strokes though that I randomly drop things when holding them in my right hand. I never did that before.
I think this blog is good and I do think that the general public needs to be aware of all of the signs of a stroke because nobody would take me to the ER while I was at a training event while in the Army because they thought my symptoms were something else. If they had recognized them I maybe would have less disabilities today. Even the medics just said I had a migraine or something because I was 31 and in great shape. At the time I couldn’t see on the right side at all (still can’t), had a horrific headache at the base of my skull and everywhere, I was acting weird (I don’t remember much from then or for 18 months following the 3 strokes and hemorrhage), I kept falling asleep and I wasn’t making a lot of sense when I talked to name a few things. I think I am rambling so I am going to stop typing now lol
Karen white says:
Nov 6, 2017
Is it possible to have cerebellum & frontal lobe problems?
Scott says:
Nov 6, 2017
My first time reading this bolg and the comments. Thank-you to the author and contributors. I pray for you all and feel the kinship. My bilateral cerebellar stroke was on the morning of Jan. 3, 2016. I was to leave for a business trip that afternoon. I never could have toughed out my symptoms of the dizzyness/vertigo and worst nausea ever to make the flight. EMTs thought I had a severe flu but the ER was prepared for stroke and even issued a “stroke alert” on the PA as I was arriving. Just my good luck that the hospital nearest my house had a brand new neuroscience center but it also shows that the knowledge about cerebellar stroke is getting out. I too had a crainiectomy, spent three weeks in the hospital, three weeks in rehab hospital and don’t remember much of it. Since then my recovery has been remarkable and has continued even aver the first six months. As others have commented, I
don’t think you should ever give up on any deficit. Keep working at it as best you can. I had sever deficit on my whole right side, couldn’t even roll over in bed. I now have the ability to walk with a new gait, but can even jog a bit without falling if I am on a level surface. But my right arm and hand are still a problem. Everybody (not therapists) told me to work at becoming left hand dominant, but eating and writing/typing still a challenge. But months ago I could not have typed this long, even though now I only use one finger on my right hand.
One “result” I have now that I have not read so far, is that with the return of my communications abilities, a personality change is that sometimes I can be a bit of a “jerk” mainly to my wife, who has taken such good care of me, even at a time when her father was dieing. Not sure why or even if it was stroke related, but I often don’t seem to be able to hold my tounge as I would have before, which leads to spats. I am on an antidepressant but that was not in the list of side-affects. Wierd. Sorry to maybe have listed something else for everyone tho think about. Bless you all. It definately is a journey, so hang in there.
Sam Eason says:
Nov 8, 2017
I had two cerebellar strokes this summer. I have heard them referred to as ear strokes, because the first one left me deaf in my right ear and the second stroke 3 Weeks later left me deaf in my left ear. I am now profoundly deaf with no
inner ear function, and of course Balance issues. Also, I have severe neuropathy in both feet and legs. I am in vestibular physical therapy, but some days my balance seems to be worsening. I know the body systems try over time to compensate when one loses a certain sense. I am fortunate to be able to walk without assistance, but I do take a cane with me when I leave home. I am fortunate, but wonder about what I can expect as far as recovery. I know that I shall never hear again. I am eighty years old and refuse to get depressed.
Kristy O. says:
Nov 26, 2017
Thank you, thank you, THANK YOU for your excellent article on cerebellar stroke!
I just came across this article after randomly searching cerebellum stroke. My husband became violently ill (vomiting, no balance, could NOT walk unassisted) Thanksgiving Day, but had been experiencing some dizziness and weakness for several days leading up to the major episode. We had NO idea it could be a stroke. Called ambulance and took to ER. ER doc NEVER once suspected stroke and only admitted because my husband could not stand on his own. Conducted CT scan that night, which showed nothing. Later that evening while still in the ER, my husband began having involuntary spasms all over his body and the ER doctor suspected it was due to some medication they administered for my husband’s nausea and/or vertigo. I don’t really remember which it was. He then ordered some type of benadryl regimen to halt spams, without success. Spasms stopped next day. Hospitalist ordered MRI next day, which showed cerebellar stroke. Now working on admitting my husband to a Rehab Center so he can receive the help he’ll need to regain (hopefully) his balance and be able to walk on his own again. He can walk with the aid of therapists holding him up, but he isn’t sure where his feet are and has to be told to move his right foot, left foot, etc. to get him going. He is also experiencing difficulty in feeling temperatures in his mouth and his left eyelid is a bit droopy. When drinking coffee, he can feel the heat on one side of his mouth, but nothing on the other side.
He just turned 66 years old and has a history of high cholesterol and intermittent high blood pressure; otherwise healthy but a bit overweight. It would be so helpful to make sure ALL doctors, especially in emergency room situations, become more aware of this type of stroke and what to look for regarding possible symptoms. When my husband was so sick on Thanksgiving, I went through the list of “things to look for if suspecting a stroke” and none of them applied. Now I know why.
I look forward to more information on this type of stroke and will definitely be following your posts on this topic in the future.
Thanks again for this excellent source of information for the 2-3% of the population – and their families – who experience this type of stroke.
Dana Hartman says:
Nov 30, 2017
My husband was diagnosed with cerebellar stroke 2 months ago. He wasn’t even referred to a physical therapist till yesterday almost 2 months later. Will physical therapy help with his extreme dizziness headaches and blurred vision
Cerebellar Stroke: Five Things Healthcare Providers Should Know - The Stroke Blog says:
Dec 4, 2017
[…] kathryn Crater on Cerebellar stroke – it’s about more than coordination and balance […]
Seamus corr says:
Dec 12, 2017
I am 47 and had a right cerebellar infarct one year ago. I am on medication now for blood pressure, aspirin, statin and a beta blocker.
I have no lasting symptoms and feel fine. I found out during tests that I had one kidney and I suspect my blood pressure was in prehypertension for some years.
Is this common I also know the doctors treating me at the time could not pinpoint the actual cause.
Marelys Tabares says:
Dec 13, 2017
I has cerebellum surgery to remove an AVM but now I have no stability no balance no taste I can’t write poor vision …… I would like to know if this condition is going away??? And when after surgery???…
Bambi says:
Dec 16, 2017
I have had hypertension since my early 20’s and have been on meds since then. I am 64 and in October 2016 felt off balance and light headed. Contacted my doctor and asked to have a brain scan since I am a breast cancer survivor since 2007 and thought I may have had cancer return. Scan was fine but my BP was 211/109. Doctors got that under control with more meds but dizziness was still evident. In January 2017 they gave me an MRI which showed that I had suffered a cerebellar stroke that had happened awhile back (probably October) on my left side in my balance and movement area. It has been a year now and my BP is now 128/72 consistently but my balance is still not good when I am moving…being still I feel fine except my writing is not as precise as it was. I went to physical therapy and all the tests and measurements they did were fine and over the norm so they didn’t offer me any ways to get past the off-balance issues. I feel lucky that this was the only outcome from my stroke, but I thought my brain would repath itself and my balance would return after a year or so. I guess it may take longer but patience is not one of my best virtues! I would appreciate any feedback or tips that might help me. Thanks….
Russ M says:
Dec 16, 2017
I had an arterial dissection in November, 2015. I believe a vigorous neck message may have caused it. This resulted in a massive, ischemic, cerebellar stroke, mostly in the left, lower quarter, and the smaller secondary stroke in the right lower quarter. About 38% of my cerebellum was damaged. Aditionally, about 5% of my brain stem was affected. I was nauseous for nearly a year and a half and my head felt light and inflated with pressure, like a balloon. While I felt like that, my moods were stable; I assume this was because I was focused on my discomfort. Now that my head feels “normal,” my moods are a complete disaster. I have severe anxiety and anger. I am otherwise able-bodied, but my moods…my relationships…oofta! I have pushed most people at work away, and I am convinced most of them now dislike me. I feel very vulnerable, especially with work situations.
Russ M says:
Dec 16, 2017
I had an arterial dissection in November, 2015. I believe a vigorous neck message may have caused it. This resulted in a massive, ischemic, cerebellar stroke, mostly in the left, lower quarter, and the smaller secondary stroke in the right lower quarter. About 38% of my cerebellum was damaged. Aditionally, about 5% of my brain stem was affected. I was nauseous for nearly a year and a half and my head felt light and inflated with pressure, like a balloon. While I felt like that, my moods were stable; I assume this was because I was focused on my discomfort. Now that my head feels “normal,” my moods are a complete disaster. I have severe anxiety and anger. I am otherwise able-bodied, but my moods…my relationships…oofta! I have pushed most people at work away, and I am convinced most of them now dislike me. I feel very vulnerable, especially with work situations.
Kay Bond Gast says:
Dec 21, 2017
I am 49 yrs old and had a cva of left cerebellum my experience was I felt a sharp pain run up the backside of left scalp which woke me up then I noticed my left arm had no control and felt heavy when I stood my left side buckled I could not walk with out assistance then I had crazy emotions laughing then crying uncontrollably with severe nausea. I went to ER they did cta first did not see a stroke after all the testing they did Mri and there it was they were all looking at me like I was crazy I am a registered nurse and worked ER for 20yrs I told them in triage I was having a stroke they never listen to pt. If they would have done MRi first they would have found it.
Rebecca McIntyre says:
Dec 31, 2017
My husband has just had a cerebellum stroke secondary to vessel dissection 1 week ago. He is 50 years old with no co-morbidities. He is active, doesn’t smoke, borderline hypertension and no family history of strokes. Incidentally, he had a chiropractor neck adjustment a few days prior.
His symptoms were typical of this type of stroke making him think he had a virus. He had sudden dizziness, unable to walk, followed by nausea and vomiting . He was home alone while I worked. His headache was only mild. We went to the hospital the next day as symptoms remained of Dizziness with unsteady gait. The hospital worked him up for cardiac and neuro evaluation. His BP was elevated running 180/108 and sometimes higher. He was tachycardic also. His only symptoms still were dizziness and unsteady gait. As this hospital was waiting for him to be transferred to a hospital with a CT , he had complete left side paralysis and was unable to talk. This lasted approx half an hour then resolved. He was emergently transferred for a CT which confirmed his diagnosis. Within 30 hours of diagnosis his condition declined resulting in emergency surgery for a craniectomy and removal of half his damaged cerebellum. He is now intubated and vented. He is able to open eyes, understand what you say evidenced by appropriate facial expressions, able to move his distal extremities and we are trying to stay cautiously optimistic. He had an MRI yesterday which looks like his stroke extended to part of his brain stem.
The future is unknown.
Austin pollardwilson says:
Jan 1, 2018
Hello everyone I had a cerebellar stroke in May 2015 I was in hospital 7 months and since the fateful day I have been dizzy which is getting me down I cannot walk on my own nor cook I’m really fed up with everything I worked before the stroke as a staff nurse in a hospital which I enjoyed am 45 years of age no one will tell me the dizzyness will go away some like locum gp s will say it’s only time it will go in time
Russ M says:
Jan 1, 2018
I had my stroke in November of 2015 and I still have days where I’m really dizzy, motion sick, and have balloon headedness. Hang in there, it is very frustrating.
Ryan Jones says:
Jan 1, 2018
Adding to my comment from November…I was reading through my medical paperwork a couple of weeks ago while I was dealing with seizure recovery. I though I only had two strokes, but I actually had three. I had one on the left side of the cerebellum, right side of the cerebellum and one in the occipital/parietal lobe area. It was weird because I didn’t have the droopy face stuff, paralyzed side and my balance was barely different. I did have and still have problems with judging distance and things like that along with all of my other issues I got from my strokes like blind on the right side in each eye, epilepsy, mild neurocognitive disorder, major depressive disorder, migraines and a headache that has not gone away since 2013. It get dizzy and fuzzy headed a lot if that makes sense. I also get weak and tired often. It is hard to tell at times if it is just from the strokes or from epilepsy or other things like panic attacks and so on. All of my strokes stemmed from a dissection in my right vertebral artery that they ended up sacrificing with a platinum coil. It was never determined how that happened though. I was in the Army and had some hard landing on parachute jumps sometimes and I was in an accident two years before my strokes and fought 4 years before my stroke, but they ruled all of that out because of the timeframe. I went to the chiropractor, but he never adjusted me neck. I guess it could have just been a weird thing. Who knows. It is nice to read this blog and know that I am not alone. I do wonder though if I had made it to the ER faster if if would have stopped me from having so many complications since the strokes. I didn’t go to the ER until almost three days after my first strokes and a day and a half after the occipital stroke that took my vision.
I have noticed that since the strokes though that I randomly drop things when holding them in my right hand. I never did that before.
I think this blog is good and I do think that the general public needs to be aware of all of the signs of a stroke because nobody would take me to the ER while I was at a training event while in the Army because they thought my symptoms were something else. If they had recognized them I maybe would have less disabilities today. Even the medics just said I had a migraine or something because I was 31 and in great shape. At the time I couldn’t see on the right side at all (still can’t), had a horrific headache at the base of my skull and everywhere, I was acting weird (I don’t remember much from then or for 18 months following the 3 strokes and hemorrhage), I kept falling asleep and I wasn’t making a lot of sense when I talked to name a few things. I think I am rambling so I am going to stop typing now lol
Tina Carlisle says:
Jan 2, 2018
After reading this article while doing some research online to send to my long term disability appeal case worker I decided I to should tell my story of my stroke and artery dissection. I am 47 years old and was a full time working manager at the local university in Utah in the catering department. I was working one evening hanging some decorations from the ceiling for a prom that we were going to be catering to. I was working on a ladder, going up and down, tilting my head awkwardly up and towards the ceiling pinning these decorations close to the ceiling. I was working on this project for about 2 to 3 hours. After I finished I went home to celebrate my daughter’s birthday. Nothing happened that night but several days later I had some weird pain in the side of the neck. I just thought I had laid funny on the couch and kinked my neck. I moved positions and finally fell asleep. An hour or so later I awoke to the worst case of vertigo I had ever experienced. I tried standing up to go to the bathroom but fell forward and smacked my head into the wall. I finally stumbled to the bathroom where I then vomited uncontrollably several times. I tried calling to my husband but I had lost speaking capabilities, all I could do was moan. There I was for over an hour moaning trying to get his attention. He finally came to out of sleep and realized I needed help. Needless to say this went on for the next two days. I was so bad that all I could do was roll over in bed long enough to vomit in the bed sheets. After three days of this I finally could sit up, walk with the help of hubby, long enough to go to a doctor. When I got there I was told that my blood pressure was so high and that the immense headache in the back of my head I was experiencing meant there was something else going on. This is when the ER drs took a CTScan and found that I had a dissection in the artery that had clotted, broke loose, and was causing a stroke in the cerebellum of the brain.
I spent a week in the hospital and then was sent home with PT and OT scheduled to come into home for the next two months. I have had to go thru them to learn to walk again, to stand up and not fall over, to walk up and down small sets of stairs, to get in and out of bed, the list goes on. I have had to deal with this now for 20 months. In that 20 months I have had to deal with my brain getting easily overstimulated by just simple music sounds either in home on lowest setting or at church house sitting in the chapel. That is the worst. The speaker systems and the multiple out of tune voices singing and talking all at once cause me to get a headache, feel confused, and unbalanced to walk. I may have to carry ear plugs to church with me the rest of my life because of this injury. I am not sure. I also deal with getting my creativity back. I use to be able to scrapbook and sew and do crafts, but right after this happened I could not make sense of how to organize pictures or where to begin a project, or even make sense of instructions. I would just sit and stare at the instructions or pictures and nothing would happen. It was very frustrating to me. I have had to just slowly work step by step on painting a simple child’s picture or draw freehand on a piece of paper and then color it and work my way up to creating a Christmas wreath. It has taken me about 18 months to feel like I can do those things once again. Although I have yet to attempt scrapbooking.
I am also dealing with some short term memory and making sentences complete. I had to write a letter of appeal to my long term disability case worker and it took me 2 days to finish it because after so long of thinking what to say and how to say it and actually typing it, the brain was fried and hurting from over stimulation.
I use to be able to multitask at my previous work. I could be in my office with the radio in the background, one assistant talking on the phone, me following the conversation for any catering orders and questions, another person coming in asking me questions and using the computer or answering another phone line all at one time without any serious problems. NOW, I am lucky if I can have the radio on at all and carry on a conversation with 1 person at a time and not get to much stimulation. Sometimes even the radio at the lowest setting with certain tones is waayyy tooo much for my brain. It stinks. I don’t know if that will ever come back.
I also have to deal with a “new” personality. That is no patience and always feeling on edge because I forget so many things and feel like I am loosing my mind and going crazy because I can’t always remember conversations or situation. I know it has changed a lot and not sure who I really am now.
Another thing I have to deal with still is some balance. It has taken me about 20 months or so to be able to go down my stairs into my basement. The stairs have about 13 or 14 stairs and up until now I have only been able to manage a set of stairs that have only 3 or 4 stairs. The issue is that the brain does not coordinate with the feet after the 4 stairs because it become confused. Confusion is a common thing I deal with on a daily basis.
Even writing this reply is difficult for me because it has taken me way far to long to time to write it than should be because my brain thought process is slow and then you combine it with typing it and getting out the thinking process from brain to “paper” takes a lot out of me. Just sitting down staring at the computer sometimes hurts my neck not to mention the brain.
It is so frustrating to me that insurances or worker’s compensation or sometimes even government agencies that you have to deal with for this “disability” do not really understand the whole situation. I just want to scream because I have been told that I am faking it and “over-reporting” these symptoms.
Sorry for the venting, but frustration is part of my process of a new normal right now and totally not understood. I hope this vlog can help someone else understand some of the problems you to have to deal with each day. I just keep telling myself that I can do it, it is not going to be easy but keep trying and trying until you can make it work for you.
Barbara says:
Jul 30, 2018
I have the same problems after a cerebellar stroke in July of 2017. I am not cyrrently working because of the symptoms of not being able to multi task and overstimulation – my speech if perfect first thing in morning but then after a little bit of trying to at least get something accompliahed or of the phone rings or I have to deal with someone in communication, my speech goes way off and I can’t talk again.
Tina Carlisle says:
Jan 2, 2018
After reading this article while doing some research online to send to my long term disability appeal case worker I decided I to should tell my story of my stroke and artery dissection. I am 47 years old and was a full time working manager at the local university in Utah in the catering department. I was working one evening hanging some decorations from the ceiling for a prom that we were going to be catering to. I was working on a ladder, going up and down, tilting my head awkwardly up and towards the ceiling pinning these decorations close to the ceiling. I was working on this project for about 2 to 3 hours. After I finished I went home to celebrate my daughter’s birthday. Nothing happened that night but several days later I had some weird pain in the side of the neck. I just thought I had laid funny on the couch and kinked my neck. I moved positions and finally fell asleep. An hour or so later I awoke to the worst case of vertigo I had ever experienced. I tried standing up to go to the bathroom but fell forward and smacked my head into the wall. I finally stumbled to the bathroom where I then vomited uncontrollably several times. I tried calling to my husband but I had lost speaking capabilities, all I could do was moan. There I was for over an hour moaning trying to get his attention. He finally came to out of sleep and realized I needed help. Needless to say this went on for the next two days. I was so bad that all I could do was roll over in bed long enough to vomit in the bed sheets. After three days of this I finally could sit up, walk with the help of hubby, long enough to go to a doctor. When I got there I was told that my blood pressure was so high and that the immense headache in the back of my head I was experiencing meant there was something else going on. This is when the ER drs took a CTScan and found that I had a dissection in the artery that had clotted, broke loose, and was causing a stroke in the cerebellum of the brain.
I spent a week in the hospital and then was sent home with PT and OT scheduled to come into home for the next two months. I have had to go thru them to learn to walk again, to stand up and not fall over, to walk up and down small sets of stairs, to get in and out of bed, the list goes on. I have had to deal with this now for 20 months. In that 20 months I have had to deal with my brain getting easily overstimulated by just simple music sounds either in home on lowest setting or at church house sitting in the chapel. That is the worst. The speaker systems and the multiple out of tune voices singing and talking all at once cause me to get a headache, feel confused, and unbalanced to walk. I may have to carry ear plugs to church with me the rest of my life because of this injury. I am not sure. I also deal with getting my creativity back. I use to be able to scrapbook and sew and do crafts, but right after this happened I could not make sense of how to organize pictures or where to begin a project, or even make sense of instructions. I would just sit and stare at the instructions or pictures and nothing would happen. It was very frustrating to me. I have had to just slowly work step by step on painting a simple child’s picture or draw freehand on a piece of paper and then color it and work my way up to creating a Christmas wreath. It has taken me about 18 months to feel like I can do those things once again. Although I have yet to attempt scrapbooking.
I use to be able to multitask at my previous work. I could be in my office with the radio in the background, one assistant talking on the phone, me following the conversation for any catering orders and questions, another person coming in asking me questions and using the computer or answering another phone line all at one time without any serious problems. NOW, I am lucky if I can have the radio on at all and carry on a conversation with 1 person at a time and not get to much stimulation. Sometimes even the radio at the lowest setting with certain tones is waayyy tooo much for my brain. It stinks. I don’t know if that will ever come back.
Another thing I have to deal with still is some balance. It has taken me about 20 months or so to be able to go down my stairs into my basement. The stairs have about 13 or 14 stairs and up until now I have only been able to manage a set of stairs that have only 3 or 4 stairs. The issue is that the brain does not coordinate with the feet after the 4 stairs because it become confused. Confusion is a common thing I deal with on a daily basis.
Even writing this reply is difficult for me because it has taken me way far to long to time to write it than should be because my brain thought process is slow and then you combine it with typing it and getting out the thinking process from brain to “paper” takes a lot out of me. Just sitting down staring at the computer sometimes hurts my neck not to mention the brain.
It is so frustrating to me that insurances or worker’s compensation or sometimes even government agencies that you have to deal with for this “disability” do not really understand the whole situation. I just want to scream because I have been told that I am faking it and “over-reporting” these symptoms.
Sorry for the venting, but frustration is part of my process of a new normal right now and totally not understood. I hope this vlog can help someone else understand some of the problems you to have to deal with each day. I just keep telling myself that I can do it, it is not going to be easy but keep trying and trying until you can make it work for you.
Russ M says:
Jan 2, 2018
Many people do not understand Strokes. Even people in your family or spouse often think you’re overdoing it, when you’re not. I feel your pain. People at my work have been positively horrible. They think that I’m just milking it, and have even verbalized this to where I can hear. Sometimes post stroke can be a very lonely time, even when you’re surrounded with people.
Amanda Anderson says:
Jan 3, 2018
Tina and all others who are interested there is a new group on facebook dedicated to cerebellar stroke survivors. Just search cerebellar stroke under groups or go to:
https://www.facebook.com/groups/256564368212536/
Russ M says:
Jan 6, 2018
It has been two years since my cerebellar stroke, and I am still getting horribly motion sick and feel like I’m nauseous constantly. I can’t really comment on the Facebook page, because I don’t have a Facebook.
Russ M says:
Jan 6, 2018
It has been over two years since my cerebellar stroke, and I am still nauseous and motion sick most of the time. I deliver mail. I hope I can get a desk job soon but it doesn’t look good so far.
Russ M says:
Jan 7, 2018
I survived a massive cerebellar stroke. Quite honestly, I wish I hadn’t.
Melissa says:
Jan 7, 2018
As my carotid and vertebral arteries all appear unharmed, I would love an update if you ever publish anything on just cerebellar ischemia or even TBI in the cerebellum.
I was told I had a brain tumor, then told it was mass. Five years and so many MRI’s later no one knows what caused the “mass” or “lesions” in my cerebellum. However, my most recent MRI results stated that it resulted in several ischemia strokes in the cerebellum.
My first neurologist tried to send me to a psychiatrist because I had trouble in groups and multitasking simple things, like moving things on a table to box up food or make room for more.
I have had aphasia since before and it is getting worse instead of better, I’ve just learned to talk around the words I need Instead of getting mad that I can’t think of them. I was more intelligent before and could process information, read, type, comprehend (etc) much faster and with much more complex words. As a Paramedic, I have avoided extra ConEd classes because I randomly lose the ability to follow, or lose the understanding of a word, which I then focus on instead of learning.
I still enjoy reading, but this very article has made me realize I no longer read complex books but have reverted to high school age books. I surpassed Young Adult novels in 9th grade, but now I am 35 and can only seem to absorb lower educational material.
Yes, I have several other issues, but I am currently more focused on the aphasia. Even my God daughter has recognized that it is worse, and I am unable to find information I can comprehend regarding this.
I can, somehow, write using more educational terminology than I can interpret and this confuses me more.
Rick says:
Jan 20, 2018
I am a 65 year old man, and I suffered an ischemic cerebellar stroke in January 2017. Could not walk unassisted for about 2 weeks while in re-hab, have since recovered my ability to walk although I still have some balance issues. Have had moments where I knew what I wanted to say, but it would take a moment for my brain and mouth to connect. Other than ongoing insteadiness when walking, by far the largest issue I have had post-stroke is spasticity due to brain-muscle miscommunication. The spasticity has resulted in symptoms similar to “frozen shoulder”where the muscles in my right shoulder and arm, and the back and right side of my neck, are constantly contracted, resulting in major stiffness. I have tried a number of different remedies, but nearly a year later, there has been no improvement. My neurologist has told me he has never seen this issue post-stroke in any of his patients-swell, leave it to me to be different !! Have read the comments on this post, and I am wondering if any readers here have experienced the stiffness caused by post-stroke spasticity due to brain-muscle miscommunication.
Claudia S says:
Jan 22, 2018
Yes, I have the stiffness mainly in the muscles responsible for good posture and down my leg (left side cerebellum lesion as result from stroke). Every morning I start sitting up leaning back on a large full back heating pad. I take a Robaxin 750 every night which seems to help through the night. It also helps with the body tremors at night.
I have always had good posture from dance, but now I just need to be more thoughtful with my movements.
Dana says:
Mar 10, 2018
My husband had a stroke 5 months ago. He is experiencing the same exact thing with his left shoulder. He got xrays and was told it was frozen shoulder. He doesn’t believe that is what it is. He just started therapy on it,and it has made it worse. He feels complete agony and doesn’t sleep at night because of this. I would never of thought this was stroke related.
Claudia S says:
Jan 21, 2018
Hello, I found out a few months ago that I suffered a left cerebellum infarction. The only symptoms I had were occasional vertigo which was always blamed on a middle ear condition. But over the last couple of years I had reoccurring back and left leg strains. A doctor also noticed hyperrelexeria when testing my arms. I had also been seen for a feeling of thickness in my throat, but that was blamed on my thyroid goiters and acid reflex.
For my back concerns the doctor ordered a lumbar and cervical MRI. In addition to a couple lumbar annular tears and cervical degeneration, the MRI caught a small glimpse of the infarction. Of course then a brain MRI was ordered.
I am 62, retired dancer and avid golfer. The neurologist was amazed that I am not suffering more disability. I started physical therapy a couple of years ago without knowing the full extent of my condition.
The only time in my past that couldn’t be completely explained was in 2013. I lost consciousness slowly. I happened to be at a doctors office. When I woke up after several minutes I was not talking normal. I sounded like someone who talks when they were born without hearing. I was nauseous and it took an hour or so before I sounded normal. Not sure that was when it happened or not but I have never fainted before.
My fear is do the symptoms get worse as we age.
Sam Eason says:
Jan 22, 2018
I had an ischemic right cerebellar in May, and a second one in July. Lost hearing in right ear in first and lost hearing in left ear with second. I have no inner ear function, therefore balance issues. I seem to get too much visual stimulation and the slightest motion causes me “wobbliness” and tactile stimulation, such as rubbing my arms or legs, even brushing my hair or teeth. Sometimes I feel air pressure in my head, perhaps from barometric changes. I have had vestibular physical therapy, and do daily exercises for balance and strengthening. I am 80 years of age and do have neuropathy problems with feet and legs. It has been 8 months, since my first stoke. I know I am fortunate to not have paralysis, loss of speech or other damaging problems. I just wonder if I can overcome these balance “wobbly” issues
Naila says:
Feb 3, 2018
I suffered cerebala stroke after effect I am getting incontinens pain in the body every. Where no feeling in my body what can I do weight gain
Mary Rose says:
Mar 7, 2018
First off I want to hug all of you for your writings. My new name is Sara Bellum. )-: And, my thanks to all of you. I am a female senior and saw my doctors regulary. I have complained for a long time of upper chest irractic beats and a wave of dizziness that come and go lasting for about 7-9 seconds. Cardiologists said I did not have A-fib. My stroke was in May 2017. I went to bed at 8:15PM feeling good. I awoke at 10:00PM and my eyesight was all distored. I callled for my hubby and he dialed 911. I am just learning that the rookie had me in the ambulance on my driveway over 30 minutes figuring things out. Neighbors also noted that. Then they life lighted me to a downtown hospital and I never was given TPA. No one seems to know why. I layed in a bed there for 7 days and lost 10 lbs and do not remember eating or them washing me. I had no rehab there. Family insisted another rehab place and I was then treated like a queen. I came home and for another 6 weeks I had home health care. The girls were great. I felt better. Then in outside rehab for 4 more weeks but now home as I was not improving more. I keep asking how long will a right sided cerebellum stroke last and 90% of the time I am told in 6-9 months I should be pretty much better. This is not happening. I do have some better days but mainly weak and dizzy and clumsy days. I live in pajamas and good slippers so as not to fall. The cardiologist who said many times I do not have A-Fib stated that the stroke was caused by A-FIB. Since being on Eliquis (Warafin first at the hospital) I have not had a heart quivering episode so I truly believe those episodes were in the A-Fib Family. I was told I would have to take a blood thinner for life. In Regards to the chiropractor, I know a man who did have his neck adjusted 10 years ago and he suffered a stroke. He still has some Does a patient need blood work every so issues. My Neuo eye doctor told hubby not to have anything done or adjusted to my neck area. And for me not to look up to reach high for anything. This site is very informative. I am learning more from other patients than the doctors I have seen. They keep saying I will get better soon. I have reservations. I am scared I will have another stroke. I will make sure I do get the TPA this time. I have talked with the EMS people and they gave me names of other hospitals that take stroke victims. We will not return to the first one. My sleeping habits are horrible and my head has not quit hurting. I have short term memory loss. I am on 5mg, x 2 a day of Eliquis. Is there better drugs out there? God Bless all stroke victims and may HE help us down our paths to better health.
Donna says:
Jul 28, 2019
Hi Mary Rose, I had a cerebellar stroke on 1-1-2018 caused by throwing clots from A-Fib. My only other health issue was Hypothyroidism. I was diagnosed with a-fib 3 months before I had my stroke. The morning I threw the clots it felt like someone had my temples in a vice, there was extreme pressure and I fought to keep from passing out from dizziness. I too experienced eyesight issues. Eye lids were fluttering uncontrollably and couldn’t keep my eyes open. I had dry heaves for several hours. My balance was off and had muscle weakness. It never occurred to me I had a stroke. I live alone and am pretty independent and just thought what ever it was would go away. On the third day when I kept getting worse I called my sister, she called the ambulance. By that time I could barely walk I was so weak. In the Hospital I was put on Xarelto for clots. They told me I had a cerebellar stroke and if I had taken an aspirin when it happened I probably would have been ok. But with the dry heaves I had I couldn’t have kept it down. Anyway, spent a week in rehab. Learning coordination for vertigo, hand, eye coordination, walking stability. In May 2018 I had ablation for a-fib. My Cardiologist changed the Xarelto to Eliquis. I take 5mg twice daily too. I have to take it for the rest of my life because of the stroke. Did you gain weight while you have been on blood thinner? Just curious. I don’t know if my metabolism changed because of the stroke or if it’s from the Eliquis but I have gain about 25lbs since I started the Eliquis in Feb. 2018. I think Eliquis is one of the better blood thinners. You don’t have to go every few months to get INR checked. I haven’t had an issue with bleeding except when I was under during my ablation I was told my IV blew out and started bleeding, a lot. An antidote has been developed for the Eliquis and Xarelto bleeding issue. Still have an on going issue with dizziness, nausea, balance. My Neurologist told me the dizziness would go away eventually, hope he’s right.
Yes He helps me every minute of every day. He has truly blessed me. I know my stroke could have been so much worse.
Dana says:
Mar 10, 2018
My husband suffered a cerebellar stroke 5 months ago. 3 months post stroke he had craniotomy surgery. Before surgery he was dizzy dull headaches a little blurred vision. It took him 2 months after stroke, to be able to drive get up and move around longer without getting too dizzy. Since surgery for his unruptured clipping, his right eye is seeing double, headaches are worse but getting better everyday, with occassional sharp pained headaches. He is back to being as dizzy as he was after the stroke. How long before he can feel himself. We see an opthomoligist in a couple of weeks, he has physical therapy twice a week. Hoping and praying his vision will return and the dizziness will subside. I understand that recovery from stroke and brain surgery will take time. Just need some insight from someone that has been through this,and how much recovery time it may take.
Lea Marie Warren says:
Mar 19, 2018
Reading this blog is like a breath of fresh air. There seems to be a limited understanding of this type of stroke. My healthy and active husband of 66 years of age is experiencing good recovery in learning how to walk again, but there are so many more subtle changes that he is experiencing; I.e. short term memory loss, a it of a “thick tongue”, some hesitation in speaking, sensitivity to loud sounds, fast movements, turning his head to the right or left at times. There are ways that he is experiencing life that are different but we haven’t been able to explain them yet. He is amazing in his Commitment to be coming whole again. But we would just like to be able to know that we’re doing everything we can to help facilitate correction in these other commitment to be coming home again. But we would just like to be able to know that we’re doing everything we can to help facilitate correction in these other less obvious areas.
Barbara Clark says:
Mar 26, 2018
I read your reply to the article. I had a cerebellar stroke in July of 2017. Then I had another TIA in February 2018. The second episode made me feel more anxious than the first. I too feel alot like you described in your reply. Too much traffic makes me get a headache as well as multiple conversations can be confusing and frustrating. Thank you for your reply. I play piano and it helps but is more of a challenge sometimes. Overstimulation is an issue. I would love to talk to you more.
Jeff says:
Mar 29, 2018
This quite an interesting read. I assumed I was just getting older. I had a cerebellar stroke in 2010 and had all the typical issues. Vomiting, bad balance, shaky left hand and Zero co-ordination on the left side. Funny thing, I lost 20 pounds in the first month because I was NEVER hungry. Literally had no drive to eat and only remembered to drink when my lips got dry. That all went away in about 5 months and I feel fine. BUT, I do honestly find that some simple work tasks confuse me now. I look at a number on a piece of paper, and two seconds later have to look again. If I’m working in my office and someone pops om with a question, by the time they’re gone, I can’t remember where I was or what I was doing.
Paul Henry Zens says:
Mar 31, 2018
I think this a great site.
My wife of 46 years had a cerebellar stroke March 3. I called 911 because I thought it was another CO2/blood oxygen event. (she has stage 4 COPD)
Ambulance measured CO2, no elevation? Hospital measured no elevation??
Pre: 911
Her speech was fine but what came out of her mouth wasn’t what she wanted to say. She had a “bad” headache and she vomited. She couldn’t touch her nose with her right hand.
Post 911
Hospital did the usual blood work for COPD patients couldn’t find anything in her blood work.
admitted for more observation. I causally mentioned to her nurse that her right hand was “misbehaving”. The floor doctor ordered a CAT scan,then came the news she was having a stroke. They called the Neurosurgeon and prep an operating room. We told the surgeon that the incubation post surgery could be fatal. He ordered a second MRI and it showed no tumor and the bleed had stabilized. NO SURGERY :). weeks in hospital and now first week home. She can walk a little with support. put a cup to her mouth to drink has little energy and appetite. Losing weight (down to 85 from 100) She tries to say things and gets frustrated when they don’t come out right. I’m open for replies with other like type stories and suggestions
Paul Henry Zens says:
Apr 4, 2018
More on my wife’s recovery. Her balance is improving and her energy is getting better. The thing that bothers me is her inability to say what she is thinking. Can this get worse with time? She just makes up stories that make no sense! I’m a retired engineer everything has to make sense!
She seems better in the middle of the day worse at night. Very confusing.
Marelys Tabares says:
Apr 11, 2018
I had a cerebellum stroke on 2015 now and lot better but I just recently removed my AVM that was on my cerebellum In May 2017 but now theres nothing I can do I have no balance can’t talk can nothing not even walk….I want to know how long it’s going to be to see any improvement??
Karen says:
Apr 22, 2018
I had a small stroke in the cerebellum and right pon thought to be the result of vasospasm following cerebral embolization for a DAVF. After tackling my issues with right-sided facial paralysis, diplopia, dizziness and gait problems (which took many months and lots of P.T.), I returned to work and it was clear from the first moment back I could not handle input from more than one source at a time even though this had been commonplace for many, many years prior to the stroke. I was fortunate that in response, my employer was very accomodating and left me to do my job without the usual barrage of calls from him throughout the day pulling me in different directions. I truly believe had he not been so accommodating, I would not have survived my first year back at work.
Allison Grant says:
Apr 23, 2018
Hi Karen,
I just sent your thoughts to my daughter’s special education teacher and my husband. My daughter suffered a stroke due to an AVM in her cerebellum in January 2017. The resulting hemorrhage and stroke from the AVM rupture was very bad. If we hadn’t been able to get help so quickly she would have died or at least would have had extreme brain damage due to loss of oxygen because she lost consciousness so quickly and then lost the ability to breathe on her own about 20 minutes after she first cried out. Her recovery has been extremely slow. This time last year she had just lost her trach (hurray!), she was still 100% in a wheelchair, couldn’t talk and was 100% tube fed. Now a year later she uses a walker to walk outside the home, can talk although it’s much slower than it was before and she eats a normal diet by mouth. We are extremely thankful for the extent of her recovery. But school is a different story.
She’s 11, in grade 5, and has been back to school since September. It has been a hellish experience for her and us. She simply cannot filter out distractions so the regular classroom noise is debilitating for her and the extra annoying noises that kids her age make are simply toxic to her ability to concentrate and learn. The school really doesn’t understand although they’ve tried to be accommodating. She’s changing schools next year and I feel like I need to go to a radically different set up. Maybe private so there can be a very small student:pupil ratio. Are you doing better now? I’ve told the school many times that adults in her situation are either unable to work or unable to work how they used to. Reading your words today just validated what I’ve been saying so thank you. I really hope that your situation is improving with time and that my daughter’s will too.
Karen says:
Sep 17, 2018
Hi Allison. I apologize for the delayed response. Today I received an email alert of a new posting on this blog and as I was reading through the comments again I came across your reply to my post earlier this year. I hope your daughter is continuing to improve. What you describe about your daughter’s difficulties in the classroom environment ring very true to my experience as far as distracting stimuli when I returned to work 5 months after suffering small infarcts in the right cerebellum and pon. I was able to work around these issues when I returned to my job thanks to a very accommodating employer. I started back to work slowly,15 hours a week initially and then over the next 5 months slowly working up to full time. I really believe if we are allowed adjustments in our environment and how we do things there is much that can be accomplished despite the challenges. It’s important to create an environment in which your daughter can return to her schooling without the frustration caused by too much outward stimuli, which will only set her back. Your daughter is fortunate to have a mom who is fighting for her recovery. Wishing you all the best.
Tracy Miller says:
May 21, 2018
I had a massive bilateral cerebellar stroke July 5 2015. I just collapsed one night and had extremely severe headache, severe vertigo, severe non stop vomitting, and just found out this year that I could only moan even though i thought I was talking. I was taken to a “stroke” hospital who stopped at a CT scan. Therefore, I was not diagnosed until 2 months later after my PCP sent me to a Neurologist. I was released from the hospital after 2 days and unable to walk with severe vertigo and still uncontrollable vomiting. I laid in bed for a month with only my daughter 19 at the time to take care of me. My mom finally got me in to see my ref. Dr. and he only tested my reflexes and sent me straight to a Neurologist. I am still dealing with cognitive difficulties, post stroke fatigue, balance issues, personality changes, and severe hard to treat Psychological issues. I so much understand “You look just fine.”. So far I have been unsuccessful at receiving disability and am now in the process of a hearing hopefully at the end of 2018 or the beginning of 2019. I feel for all of you…suffering with little to no scientific support, confusion of family and friends. We deserve the time and funds for more research and better diagnosis and therapy.
nora jaeger says:
May 24, 2018
had cerebellar stroke in 2015 still have severe occlusion in r mid basilar. went thru 6mos of vestibular rehab for extreme dizziness, actually felt worse, do you think this sensation of freefalling from empire state building will ever stop my quality of life is down the toilet
Catherine Ferguson says:
May 27, 2018
I just had a pica stroke.my cerebullum is no longer functioning all the cells have died.im only 58 female.
Teresa Emerson says:
Jun 15, 2018
I am a 54 year old female and was healthy all my life. Than in Oct. 2017 was dignosed with PEs in both lungs (blood clots) and treated for those. I was kept in the hospital a week. I was recovering from that when in May 2018 I was hit with Left sided weakness that wouldn’t go away. That time I was diagnosed with TIAs (mini-strokes and was treated to another week stay. I want back to work and was able to work one day. I noticed an instant blind spot in the right eye and severe vertigo and”dizzy spell” that wouldn’t go away. Back to the hospital and was diagnosed with a stroke (specifics weren’t given) with a follow up with an nuero-opthalmologist. At his visit he did a bunch of tests and said I had suffered an Optic nerve stroke. I suffer from dizziness, severe vertigo, (and when I don’t have those it is replaced by a raging headache) balance issues to the point I need to use a walker, forgetfulness, and have noticed in therapy when I go to walk, it takes extra time to get my legs in motion. I get easily fatigued (more than just tired) and have issues with double vision in the left eye and it going blurry from what I believe maybe the double duty it has to pull. I have already been told the blindness in the right eye is permanent. I know each case is individual but can you give me a rough guess based on your experience of my chances for being able to walk with just a cane. Right now I fall if I don’t have the walker.
John Ramsey says:
Aug 18, 2018
I am 51 and lost most of my left cerebellum back in Dec due to lack of ER understanding and misdiagnosed condition. I have to practice balance drills daily to keep walking and not bumping into things. Lack of attention ability and other mental clarity and memory issues are very concerning and seem to be getting worse. 26 year Army veteran and now getting Med Boarded out due to fitness issues post stroke. This stroke recovery seems like a continuing battle to stay somewhat like pre stroke. Oh well, it could always be worse. Best of Luck on your journey.
nora jaeger says:
Sep 13, 2018
i had a cerebellar stroke 3 yrs ago, symptoms were missed for months before, i even had an mri of my brain, all missed the occlusion in my r basilar artery. i believe if i would have had an mra with contrast my stroke could have been prevented. after several months of vestibular therapy at rusk i still cannot go out alone
my balance is poor and i get occasional “spinners” i lose all spacial sense and cant tell if my feet are above or below. i assume this is forever. rn, forced into retirement
David says:
Sep 16, 2018
I had my stroke about 2.5 months ago. A doc at the therapy center prescribed Prozac even though I had no symptoms that would have called for it. A recent study in France that was published in The Lancet indicated that Prozac, when used in the first 3 months after a stroke, can provide up to a 40% lift in mechanical functioning. I am walking over a mile now with no support, and I have relearned how to chew and swallow. I tried riding a bike last week (big tires) and I can do that (I rode 20-30 miles a day before the stroke). If you or one of your loved ones has recently had a stroke you might ask your doctor about this study. I’m still working on balance a bit, and I still have double vision and some hearing issues, but walking has come back far more quickly than anticipated. I’m weaning off Prozac this week, so I’ll see if there are any withdrawal symptoms. This is an off-label use for Prozac, but I think I have benefited from it. Insomnia and dry mouth are negative side effects, but I’ll trade my ability to walk for a little sleep any day. Off for a nap now.
Daniel Jacobs says:
Sep 19, 2018
Last year, I had a bilateral cerebellar stroke due to a vertebral tear. I was 36 at the time, and was in great shape, so it took them some time to find the cause.
Overall, I recovered fantastically. My vision and speech returned quickly, and my motor skills returned fully a few weeks later. But, I have noticed a definite issue in my short term memory and my energy levels have definitely taken a hit.
I actually bought and read your book on tears recently and it really helped me to see that what I am experiencing is normal. Thank you!
REBECCA PFEIFFER says:
Oct 16, 2018
I just discovered an article about this topic and immediately was concerned. About 8yrs ago I was working out and heard a loud POP then got a rush of blood to my head, felt dizzy, slightly nauseous and everything felt bright and busy. I stopped, but it subsided and, having the body issues I suffered at the time, I chalked it up to “no pain, no gain” and pressed on. The rest of the day was ok, and I went on. Fast forward to now and I have had over the last few years, big issues with headaches, jittery blurry double visioned eyes, and sometimes severe brain pulsing headaches while working out, but, I chalk it up to menopause, dehydration, etc.
IS IT POSSIBLE TO HAVE HAD THIS TYPE STROKE AND NOT KNOW IT?
AGUS says:
Aug 26, 2019
Update after 32 months vertebral artery disection and cerebellar stroke
(45 years old, Male)
Hi,
2 and a half years I suffered a vertebral artery dissection and cerebelar stroke. Right now I’m feeling very well, just some light dizziness
if I sleep less than 8 hours for 5 days in a row or if I over exercise. My artery didn’t heal because I was
diagnosed 2 months after the first symptom and I didn’t take aspirin during this time except for the first 5 days when
I felt a strange and new pain in the lower back side of my head. Now, I try to sleep 7-8 hours from monday to thursday, then I sleep on the friday evening about 4 hours (a long nap) and 9-10 hours
at night. My fitness training is just pilates 2 days/week. I bought a mountain eBike that help me to climb steep paths without getting exhausted. It
allows me to keep my heart rate below 80% during the route and thenseveral days before I don’t feel sick and I can enjoy my spare time and my job.
I also go downhill at the nearest bikepark and I can enjoy my bike with friends for the whole day (5 hours) taking some rest between laps
I am less and less affected by the intense light corridors at the mall or by other vertigo triggers (noise, sun burn, extreme hot in summer, etc)
Light exercise – deep rest, Light exercise – deep rest,… is the only key. Super happy with the improvement. Sometimes I think that everything about the stroke is left behind
I hope that helps. Be strong
Regards
Jeannaé Quadri says:
Sep 29, 2021
I find this blog very helpful. In 2018 I had five cerebellar strokes. I was unable to tolerate Eliquis so was put on baby aspirin twice daily. I was not offered any rehab whatsoever. In fact, then I asked at the University Hospital, y neurologist said there is no treatment for this. Fast fwd. I moved to Denver where I saw a neurologist
who said you have Wallenberg Syndrome secondary to the strokes. Still no offer of rehab.
Moved back to CT where I heard of a chiropractor who is stroke certified in his chiropractic profession and treats cerebellar strokes. He had me doing figure 8’s with my left hand for balance. It really helps with gait. Is there rehab for these strokes?
I find that I walk like a duck, play piano like a beginning student and can’t use my iPad to type without lots of mistakes. Is there hope? Thanks.
Susan J Richards says:
Aug 7, 2022
Not sure I’m eligible to speak here, as I don’t think anyone would consider me young at 72. After reading what Jeannae wrote, I have to. Yes there is therapy!! And there is hope! As was said earlier, the brain is wonderful! You should have seen me at the beginning… I was in a wheelchair dreaming of a walker, I threw a lot of my food over my shoulder and spilled most of my drinks, and it took me an hour to play solitaire. But I am getting better each day!!
I apparently had at least 2 silent cerebellar strokes on top of each other over the last 5-6 years, and then 3 months ago a larger one near the others. With this one I knew something had happened, but assumed it was nerve related since I have other nerve problems. Thank God, they hospital neurologist figured it out because I failed the finger to nose test(I passed everything else) and an MRI. The CT scan and a lot of the other tests were inconclusive. I already had a cardiologist because of a heart attack that presented weirdly also. (They only found it because of blood work.) Healthwise, I am a mess, but a lot is explained because of the earlier strokes. I had lost much of my memory, and had no short term to speak of; I had trouble finding words which drove me nuts and I had to look up words I had known for years in the dictionary; I was exceptionally weak and dizzy so because of that and idiopathic peripheral neuropathy I had to use either a walker or quad cane if out of the house; I was on 20 some medications due to an assortment of problems, so we wrote it off to the side effects of my meds.
I was transferred to in hospital PT, OT, and ST, where I worked for 2 wks. They sent me home alone, since that was their only choice. I had one day and therapy started here in town. They worked me hard for 6 more weeks. Then they “kicked” me out. Now I have good intentions…sigh…to continue to exercise. I can walk most days though I keep the rollator close… I can do almost everything physically again.
HOWEVER, I can’t deal well with crowds, I cannot multitask, and I have trouble not getting distracted. People don’t understand that I simply cannot do what I used to when they want me to. I have plenty of notes, but you still have to remember to look at them. I want to do all the things on my to-do list, I just don’t always remember where I put it. Some of my “friends” yell(with the insecure personality I had/have yelling is anytime your voice is raised and you sound frustrated) that I am not doing things they told me to do. Since the stroke I have two reactions to that: 1. I want to run away and hide because it overloads and overwhelms me and 2. I want to scream f- off because I lost most of my filters.
My late husband showed me how to get rid of the insecurity, but the strokes brought it back… and that upsets me. I really think that given enough time, I will get things done. In a way, having dealt with cumulative grief from multiple deaths and problems, helped me, as I found it impossible to remember to pay bills, so I already had them set up as automatic payments. Because I dealt with depression without meds from the age of 4 until 40, I knew the benefits of having routines to stay focused and had realized that the only way I would remember to take my meds is alarms. Since the stroke I have to set a lot of timers and more alarms but I get through the day. When I first got home, even with the alarms I didn’t always remember to take my meds on time…and it took a long time to fill the weekly pill planner and I dropped almost as many as I got in. Now things are much better.
They did discover what they think caused it: Atrial Fibrillation… dastardly thing. Also found out that my dad had it and my brother has it. So now I take different heart meds than I did because of course, AFib is different than what caused my heart attack. Of course, the blood thinners for AFib and for heart problems increase the risk of aneurysms (I only have 2 right now). I really wish I had none of this… lol … but all of my drs. tell me I was doing all the right things. So, either fate or genetics seem to be running my life… Guess I am just along for the ride.
I still have a million questions about things that aren’t in anything I’ve read so far. Is the worsening incontinence because of the stroke? Is the constant childhood music in my head from the stroke? Are not wanting to put my upper teeth in and their discomfort from the stroke? Is the anger from the stroke? You covered much that my drs. have not. One thing they did say, in speech therapy that really helped me, and may answer my questions, was that you don’t actually lose anything… it’s just like you had lots and lots of file cainets with everything you’ve ever said, done, or learned in them, and someone came in your brain and upended all of them. Because I had multiple strokes they did it more than once, so anything I had sorted got unsorted. I tried to get someone to help, but that’s out, it’s a one person job… which is sad because I tend to be lazy. But filing isn’t really that hard, so I suppose I will even get that done.
I hope this is coherent and logical, as writing is much more of a risk than it used to be. If an old lady in lousy health can get better, than there’s help for anyone. Bless you for writing this, and for the people who replied. I’m bound and determined to beat this!