One of the most meaningful parts of my neurology residency training was learning how to treat patients with carotid and vertebral artery dissections. Not only was I fascinated with the concept that a young person could sneeze or cough and severely injure an important artery as a result of such a benign action, but I was surprised by how frequently we identified dissections, yet they were referred to as “rare.” They did not seem rare to me, but I figured I was biased, given the specialty I had chosen to pursue.
Following my vascular neurology fellowship completion, I then moved to Charlotte, North Carolina, and continued to frequently make this diagnosis in young, healthy individuals. I found that many of them were presenting to the emergency departments in the area with headaches and/or neck pain, and were diagnosed as having migraines or muscular spasms until I would recommend imaging of the arteries in the neck before sending them home. When imaging studies would reveal dissection of a carotid or vertebral artery, there was usually relief from both patients and healthcare providers in identifying a treatable cause for symptoms, and in knowing that we could lower the risk of stroke from that point with the appropriate management. As I saw more dissection patients in the outpatient clinic setting, I learned that many of them continued to suffer with pain, anxiety, migraines, insomnia, fatigue, and difficulty concentrating, to name a few concerns. I heard these concerns voiced from dissection patients who had suffered strokes, and from those who had no evidence of stroke on MRI. I also observed that even patients whose follow up imaging indicated that their arteries were now “healed” they still had lingering symptoms.
Over time, I found that I was having the same conversations and answering the same questions repeatedly when talking to dissection patients and their loved ones. By 2013, I thought: “Someone should compile the questions these patients have in book form and attempt to answer them.” There was no such book available, and it seemed very much worth writing, if the right person would make the time for it.
On January 1, 2016, about six months after I had joined the faculty at Duke University, Amanda Anderson, a speech-language pathologist in Charlotte, a friend, and herself one of my former carotid artery dissection patients, contacted me, telling me she wanted to work on a “project” to distract her from the daily unrelenting pain that had come to define her dissection aftermath. She had already published a workbook series for patients with language impairment (aphasia), and I knew she would be a great collaborator. I decided that since the “right person” had not made time to write the book for patients that I thought needed to be written, then I would have to be that person.
We decided early into the planning process to write much of the book in a question-and-answer format, and that we would make it as comprehensive as possible, but provide explanations that were easy to understand. We also wanted the book to illustrate that carotid and vertebral artery dissection patients are real people with real lives, and found plenty of brave patients from around the country (and even one outside of the US) who were willing to share their stories. We wanted many of the personal stories to be written by the patients themselves in order to provide their perspectives in their own voices.
This morning, after a year and a half of writing and revising, Carotid and Vertebral Artery Dissection: A Guide for Patients and Their Loved Ones was published!
It has been such a moving, unforgettable journey, and a regular reminder of why I love this patient group so much. Amanda’s relentless enthusiasm and her compassion for her fellow dissection survivors has sustained me during busy times when it was challenging to find time to write.
I sincerely hope that if you or a loved one has experienced a carotid or vertebral artery dissection, this book provides answers to your questions, and perhaps just as important, validation of your experiences.
12 comments
Hernan Casanova says:
Aug 11, 2017
Dear Jodi: I just bought your book in Amazon. I have been diagnosed a CAD, after a TIA, almost a year ago, in Argentina. I went through countless doctors until got a right diagnosis. Very difficult path. Is also very different cult to understand how to continue your life, even worse make your family and friends do so. I am very glad you wrote this book, that might bring light and relief to many of us. As many of sufferers live in spanish speaking countries, It would be great to translate it. If you need help, count with me. My mother tongue is Spanish. Regards Hernan
Janeth says:
Aug 11, 2017
Left and right vertebral artery dissection survivor. This book means the world to me and I cannot thank you enough for putting your time in writing it. I can’t wait to have it in my hands!
Summer Ritchie says:
Aug 14, 2017
Thank you so much for taking the time to do this. I suffered from a Vertebral Artery Dissection and pseudo aneurysm March 21, 2016 at only 26 years old. I had no previous symptoms and within 5 minutes was hit with the unbearable pain and then the blackout. After a long journey my artery is healed…but there are symptoms that still linger everyday that no one seems to understand. I cannot wait to read this book and finally get some answers.
Tracey says:
Aug 20, 2017
I have just ordered this book, I’m in Scotland and feel this book will answer all my questions. I look forward to receiving it and sharing it with my Facebook vertebral artery dissection support group.
Brandy Ledford says:
Dec 31, 2017
As of this post I am 8 weeks from my CAD w/stroke. Finding this book was a Godsend. I needed to read other people’s stories to help me understand what I am going through. And, all the questions I had/have were addressed in this easy-to-read, thoughtfully written book. I’m so happy they wrote it and I HIGHLY recommend this book to anyone who has had a carotid or vertebral artery dissection. It was also helpful for my husband and friends. I was able to copy and highlight passages in the (kindle version) of the book and send to them, since sometimes it is hard for me to articulate how I am feeling about my diagnosis. I feel like my support team has a better understanding of what I am going through now. Thank you for writing this book.
Erin says:
Mar 14, 2018
Diagnosed with a VAD/ with out stroke on 3-4-18! I have my first appointment with a neurologist in three hours! I received you book yesterday and have read most of it already. This book has answered several questions and has made me feel like I am not alone. I thought for a second I was going crazy but other people are experiencing the same things. Thank you!
Alison Kelly-Pavitt says:
Oct 7, 2018
Thank you so much for taking the time to write this book. It was also a godsend for me in that it validated my experience and I was not going crazy. 12 months ago I suffered two spontaneous vetebral dissection and one carotid dissection (now fully occluded). They tried to tell me it was just my blood pressure in hospital and send me home. I insisted on further test and the dissections were discovered on my last day in hospital and then they sent me home. Specialist told me I was fine and basically the pain was in my head and one week I should be back to work and life as normal. I felt so dizzy and in pain it was awful. I am so much better than I was and did end up back at work but 2 months later, not 1 week. I still have lingering symptoms of memory issues, speech issues when tired, dizziness and tire so easily. I was diagnosed with fibromuscular dysplasia. I had no stroke so doctors were very dismissive. I am now too and just get on with life but back then I was in a lot of pain and your booked helped a lot and gave me hope. Thanks again!!!
Ramon Tamayo ( Toby) says:
Jan 20, 2019
Dear Dra Jodi,
My daughter who lives in Hawaii emailed me recently about your blog . I am very excited and relieved that I will get your book soon. I am from the Philippines Island.
Survivor of Vertebral Artery dissection and had recently been admitted in a hospital and was put in ICU for 24 hours due to chronic VErtebral Basilar insufficiency (VBI).it started way back in 1996. My symptoms since then are light headness , to severe vertigo , tremors and weak left upper extremities tinnitus which never go away.
My 1996 episode happened in New Zealand during winter. Neck spasm and pain, Severe headaches dizziness and vertigo.
1999 in Philippines during cold season 3 months of positional vertigo,
2002 TIA episode severe neck spasms all other similar symptoms , I was in bed for months very weak. PT for many years due to neck spasms.
My worst episode 2006 . First time I had a MRI and CTscan done. Angiogram showed Vertebral artery dissection .tourtuos and the right vertebral artery is much smaller in caliber. While the left is much larger than normal .
I had minor episodes until 2011. Beside all the symptoms , I lost my gag reflex , shortened tongue slurring,
2016 episode my heart rate plummet and BP issues and all other symptoms.
The latest December 2018 VBI episode
no dissection MRI result, neck spasms etc .high BP,
My maintenance meds are blood thinners, BP meds .
I was a martial artist taught and competition and a national athlete,
I love staying fit , swim , bike strength work and now practicing and teaching qigong and Taichi chain!
Plant base food for almost 40 years I am 62 years old this year.
I live in a farm near the coast!
Toby Tamayo
Toby Tamayo says:
Jan 23, 2019
Dear Jodi!
My gratitude and thankfulness for informing many of us VAD survivors.
It help many us understand our situation so me can better cope and managed our lives better.
My daughter in Hawaii facilitated so I can get an e- copy recently.
I am from the Philippines
Toby
rwiller1 says:
Feb 4, 2019
Dear Dr Dodds,
Thank you for writing this comprehensive book. I found it in my quest for answers since an extremely rough neck massage on January 14, 2019 given by a substitute for my regular massage therapist. I have Ehlers-Danlos Syndrome, bruise easily, and am very sensitive to all but light to medium pressure. I know the risks with EDS for cervical artery dissection with neck manipulation. Prior to my EDS diagnosis I had frequent chiropractic manipulations that caused worsening pain following a car accident where I had sustained a whiplash injury. In November 2017 I had cervical spine fusion at C3-4 and C5-6 by an EDS knowledgable surgeon (Dr Fraser Henderson in Maryland) so I mentioned this to the massage therapist upfront (saying to do very little with the neck and not to turn or bend/extend it) and my regular person is always very gentle. As soon as this other massage therapist grasped a fistful of flesh from each side of my neck in each hand and started pulling them forward and back in an attempt to make me “relax” and loosen me up, I knew it was a bad idea. I was too timid to speak up though. Following this she dig more deeply in with both hands squeezed around the sides of my neck until I coughed and she soon stopped. It felt like I was being strangled. My husband drove me home afterward and I told him about the terrible experience. From later on that night and through the next 9 days I had head and neck pain on the left side in the back of my head through each day. I kept taking OTC pain relievers and using ice in an attempt to make it go away but finally I had my mom take me to the local hospital ER on 1/23/19 on day 9. The pain went from the back left around to the left side of my head and occasionally it stretched to the back right. It has remained pretty consistently left sided though. This is so out of the ordinary for me. I would occasionally get headaches prior to all this, but it is usually in my forehead. By this time I had already gotten your book and I had read medical reports and studies on cervical dissections online. I knew I needed a CTA or MRA to check for these. I explained my symptoms and what precipitated them to the nurse and PA. Unfortunately the PA who examined me was pretty positive this was just a muscle spasm despite not having listened to my carotids, not having done any neurological exam, and not having ordered any tests at all. He wanted to give me a shot of an NSAID plus Vicodin, and cyclobenzaprine to calm the pain down and then have me go for an X-ray of my neck. I made sure he knew about my EDS and that I was concerned about cervical artery dissection and would like to make sure there is no dissection in the carotid or vertebral arteries. He said that my symptoms were not typical of that and that the arteries in my neck are able to withstand stronger forces than rough massage manipulation so the x-ray would just check to ensure no bones were broken. I said I didn’t think any bones were broken but would really like some sort of scan like a CTA to a check the cervical arteries. He said they didn’t have that test available onsite. I’ve had an MRA in 2014 at the same hospital which visualized the carotids so I knew they had some test to check this. He did a quick check of the carotids in one spot on each side and said they sounded normal and there were no bruits (and this isn’t always the case for dissections right—there doesn’t need to be a bruit for it to be dissected?). It was so extremely frustrating. I knew I wanted the pain to calm down somehow so I accepted the medicine and then was told I would be taken for a CT without contrast. The CT showed bulging discs at c4/5 (w central stenosis) and c6-7 (w central and lateral stenosis). My fusions looked good. This didn’t make mention of visualizing the carotids (I was pretty positive it wouldn’t). The PA tried to reassure me that it was likely just the muscle spasm causing this and told me some story about a similar thing happening to his wife. I wish I was closer to your office and could make an appointment with you. My husband wanted to try and was willing to fly there with me. Do you know any New Jersey or New York neurologists who have as thorough an understanding of dissections and as you have? I don’t feel comfortable going to my PCP about this because she will treat it as a general headache or spasm—not different than at the ER. My old neurologist is no longer practicing and I have a visit with a neuromuscular specialist in New York for March regarding numbness in my bottom lip and chin on the left side and burning/soreness in the left side of the tip of my tongue (all started on Sept 8 2017 abruptly…I was seen in the ER the. and they just called it a parethesia but the quick neuro test was normal and subsequent non contrast MRI and CT of jaw and trigeminal have been normal. I’ve had numerous blood tests since then as well with my previous neurologist and she diagnosed small fiber neuropathy without having a skin biopsy done. I’ve been taking 80mg low dose aspirin every day so maybe that’s offered some protection at least if this were a dissection. I just don’t feel good about any of this until we’ve truly ruled out dissection or the pain goes away. Can you offer any next steps for getting this checked more thoroughly? Thank you for your help and terrific resources!
Gene Hall says:
Mar 22, 2019
Hello. I am new to this blog. I’m so excited to find this, and I have ordered the book. I had an interior carotid artery dissection that caused a clot, blocking 100% of the artery. This occurred on January 9, 2019. I am fortunate that I’ve had no mental or physical setbacks. I am trying to find information regarding what my limitations might be and what I need to guard against as far as activity that would compromise my situation. I have reached a dead-end on finding anyone out there like me. So I’m hoping that there are people that are associated with this blog that would have information on people living with a blood clot that has 100% occluded an inteeior carotid artery. My major questions are: will this blood clot solidify and stay where it is? What kind of physical activities should I not engage in at the risk of causing the clot to break loose? What should I do or not do so that I don’t injure another one of the arteries and cause a dissection in one of those?
Michael says:
Apr 28, 2019
Thank you very much for taking the time to put this book together. I’m reading it now 4 weeks after suffering my dissection and stroke. In an afternoon of reading I have a better understanding of what’s going on than I think my doctors do. Although I’m no happier about my circumstance I take some comfort that I’m not alone and am grateful that my recovery appears to be on track. I’m sure I will reference this book again as I try to get back to as much of my old life as is possible.