When I started The Stroke Blog in 2014, I had a few ideas of what readers might be seeking. In fact, I kept a running list of topics that I thought patients would find informative. I am now humbled to admit that cerebellar stroke was not on that original list. I had diagnosed and treated hundreds of cerebellar strokes at that point, and had noticed that a number of these patients had complaints that extended well beyond balance and coordination difficulties, but I had not considered writing a blog post devoted entirely to cerebellar stroke. When I heard a segment on NPR in 2015 about a man who was born without a cerebellum, I thought: Okay, I haven’t blogged about cerebellar stroke yet. I’ll put it out there. The result was “Cerebellar stroke – it’s about more than coordination and balance.”
Over the months that ensued, the response was much more robust than I had anticipated. For the past year and a half, without question, this is the post that receives the most daily traffic. It is the post that has received the largest volume of comments from readers. For the past few weeks, I have been reflecting on why this is the case, and I have a few ideas.
First, cerebellar strokes are largely “invisible” in the aftermath they create, meaning they can leave a patient feeling miserable or limited (or both), but this may not be evident to those around them. Because of this, cerebellar stroke patients may be expected to perform at their pre-stroke levels when this is either challenging or impossible for them. Next, many of them are told by healthcare providers when they experience word-finding difficulty, emotional problems, difficulties with concentration, or other symptoms not strictly related to coordination and balance that these parts of their “new normal” do not stem from cerebellar injury (but they actually can). Additionally, cerebellar strokes can be very difficult to diagnose, and are often misdiagnosed initially as benign paroxysmal peripheral vertigo (BPPV), Meniere’s disease, or migraine.
In an effort to keep the dialogue about cerebellar stroke going, I believe that if we as healthcare providers who are likely to encounter patients with this diagnosis can adhere to the following items, care will be substantially enhanced:
- Order the appropriate radiological imaging study. A head CT scan’s sensitivity in revealing evidence of an ischemic process (lack of oxygen-rich blood flow) in the cerebellum is extremely low during the first 24 hours. A brain MRI is a much more sensitive radiological study for identifying early stroke, but even this study isn’t 100% sensitive. Additionally, if a stroke has not occurred yet, but blood flow to the cerebellum is severely restricted because of narrowing in one of the arteries upon which it depends, a CT-angiogram or MR-angiogram would be the appropriate noninvasive radiological study to obtain, because a regular brain MRI is unlikely to declare the existence of the underlying problem.
- You don’t know if you don’t look. Many a patient with cerebellar stroke has initially been thought to have vertigo of a benign etiology based solely on clinical suspicion. Patients with cerebellar strokes can look exactly like patients with benign forms of vertigo. Medical students are taught to perform the Dix-Hallpike maneuver (the patient sits upright and then is abruptly reclined with his or her head hanging off of the back of the bed with the head turned and eyes staring far to the side – for more information click here), and that with this technique they can distinguish between vertigo originating from the inner ear and “central” vertigo (such as from a cerebellar injury). The truth is, if a cerebellar stroke patient is abruptly tilted backwards, vertigo, nausea, and nystagmus (jittery eye movements) can arise, just as they can if there is a problem in the inner ear. A normal Dix-Hallpike maneuver is not helpful in making a diagnosis, and a “positive” one can still be either a cerebellar stroke or more benign vertigo.
- Cerebellar strokes can quickly become life-threatening. The cerebellum sits in a very tight spot just below the back of the brain in an area referred to as the posterior fossa. Very large cerebellar strokes may not seem that severe clinically, but when the cerebellum starts swelling, brainstem compression and death can occur quickly. However, correctly diagnosing a cerebellar stroke and recognizing signs of neurological worsening saves lives. A suboccipital craniectomy is a surgical procedure in which a portion of the skull overlaying the cerebellum is removed, allowing the cerebellum room to swell without putting as much pressure on adjacent brainstem structures. Suboccipital craniectomies are recommended by the American Heart Association/American Stroke Association when patients with cerebellar stroke show signs of neurological deterioration and there is evidence of cerebellar swelling.
- The aftermath of cerebellar stroke is not limited to balance and coordination difficulties in some patients. I elaborated on this statement in the earlier referenced post, which can be found by clicking here.
- Cerebellar stroke recovery is all over the map. Some patients do fabulously well in recovering from cerebellar strokes – it’s all like a bad dream, and they know it happened, but they don’t experience noticeable aftermath from it. Others may have lingering, refractory vertigo. Some have severe migraines, or language difficulties, or swallowing problems. There is no one-size-fits-all formula to cerebellar stroke, so it’s important to keep an open mind when these patients approach us for help.
dean reinke says:
Dec 4, 2017
Dr. Amy Elder, a DPT writes about her experiences with a cerebellar stroke including her 36 hour wait for a diagnosis.
Amy Elder of mycerebellarstrokerecovery
Amy on her 36 hour wait for a diagnosis
Peg Cowen says:
Dec 31, 2017
Jodi, Thank you so much for championing this specific issue. I am almost 61 years old, and have been an active athlete all my life. At age 59 I suffered a cerebellar stroke secondary to a traumatic bicycle accident. I think…actually, I know….I am among the very lucky survivors of cerebellar stroke. On 6/24/16, I was on my bike and was chased by an unleashed, aggressive dog (in a town with a leash law.) I lost control of the bike and crashed, shoulder first, into the pavement. I broke 7 bones and hit my head, all of which was bad enough. Then, in the ER, I suffered a stroke, with symptoms being sudden intense dizziness and extreme vomiting. Initially, the doctors thought I was hyperventilating due to pain (broken collar bone, shoulder blade, and 5 broken ribs) or having a bad reaction to pain medication just administered. A stroke was detected in MRI imaging, but the cause was unclear to docs at first. Half of them thought the accident must have dislodged pre-existing arterial plaque which they assumed I had (testing proved I had NONE). Others thought the neck whiplash at the time of the accident must have pinched an artery, disrupting bloodflow. After several days in Neuro ICU (and some VERY unpleasant testing), they determined the traumatic neck whiplash caused a dissection in my right vertebral artery, which led to a clot being thrown to my cerebellum. I also suffered a concussion from the accident, which complicated the picture. Today, 18 months post accident and post stroke, I am fully functional…..but with persistent disequilibrium that is attributed to the stroke. Dizzy is my new normal. It took almost a year to rule out structural damage to my vestibular system as a cause of dizziness. I have recently worked with a WONDERFUL PT who finally looked at the role of damaged tissue and limited neck mobility, with some slight positive result Also, I’m getting some improved visual function with behavioral visual therapy. At this point, the neurologists have shaken my hand, told me to stay as active as possible, and wished me good luck. I can live with this dizziness, but I worry about the increased potential for falls as I age. So, I decided I needed to do my own research, and began looking more into brain plasticity. I am a clinical social worker, and have had a rough appreciation of brain plasticity for many years. I read a variety of books and resources, including the books by Norman Doidge, in which he describes various therapies that claim to be helpful for stroke patients. What do you think of those therapies? I remain very active, …and acutely grateful….but hope that some new therapies may be on the horizon for stroke survivors. Thank you
Aug 22, 2018
I am in the hospital right now. About 10 weeks ago, l went through vestibular testing, conclusion was BPPV, possible Meniere’s. Just said from balance testing, brain not properly sending info to the muscles. Did vestibular therapy over a month, getting worse symptomatically. Complicating it all, l have Young Onset Parkinson’s, but have been very well controlled with medication for the last 5 years, these symptoms are very different than my PD symptoms. I also have an ongoing sphenoid sinus infection per CT scan 2 weeks ago, this has been treated periodically wthe steroids (4 rounds) and antibiotics since April. Currently on the 3rd of 3 weeks of doxycycline. I had felt progressively worse over the last several weeks, talking seemed to exacerbate the dizziness and pressure in my head. Then almost 2 weeks ago l could hardly walk. I wish the friend l was with had taped it. Both legs were numb and tingling from the knees down. I have been in the hospital for 10 days now. CT, MRI, MRA of head are negative, EEG is normal, EMG of lower legs shows bilateral axonal peripheral neuropathy. I was a nurse before Parkinson’s, so tend to analyse it all. I do not have all the results back from the spinal tap, l was told protein was “slightly” above normal, entry pressure was 28 (per the radiologist). The hospital Neurotologist likes to joke around, does not answer my questions.
With some of this, my mind goes to mild GBS, some of it makes me think cerebellar after a doctor l know sent me your blog. I am being told we may never know, just be thankful it is improving. I want to know what happened. I continue having both short term (timed it at 4 minutes) to several hours of extreme pressure in my head, it is not a spinning dizziness, but a disequilibrium type of dizziness. The feeling has been returning bilaterally in both legs in an ascending fashion, a little at a time. Toes, then gradually into the arch. Heels still some numbness but better. I know this is a puzzle but l would like to solve it. I will be going to inpatient rehab as soon as a bed is available. Strength in the thighs an hips also affected from OT/PT assessment, no EMG of that area. No respiratory involvement, blood pressure was high a few days ago, but has been coming down.