Cerebellar Stroke - experience/treatment/recovery

You’re welcome @nskinner5 I would find out all my risks before making a decision. Perhaps there is a low chance for an aneurism. Remember, the symptoms of an aneurism are dependent on location so what would the symptoms be if you were to have an aneurism? Sometimes the location of the surgery itself can be risky. In cases where a surgical repair is inoperable an assessment( consisting of tests)is done every six months or so to keep an eye out for a potential aneurism warning. See what it all means for you. I had a team of neurologists which included a neurosurgeon and vascular neurosurgeon. Ask all the questions before coming to a decision. Good luck! Toni

I would love to have a team advising me. Were you at Mayo or where? Maybe I can
go there too. No one is watching for me now. Can you refer your doctors to me?
I so appreciate your help.

@nskinner5 My team of neurologists was not by choice. After my rupture I was flown by helicopter to the hospital (Tampa General). The lead neurosurgeon was Dr. Mark S Greenberg. He is also an author on the subject. Wrote several books. I was released from his care a year later after my cerebral angiogram showed no reformation of my AVM. I was cured of the AVM but had to deal with the deficits. It has been over 4 years now. My mobility has slowly improved since my hospitalization but not enough to be working again. Take age into consideration because an older person is less likely to bounce back as a young adult would be able to. I was a person who routinely exercised and watched my diet. I never had any health issues until i.e. this...... no warning. My family was told I was not going to survive but I believe I did because I took well care of my health.
My team of doctors was in the hospital while I was in the ICU for a month. They made me feel helpless because many questions remained unanswered for a recovery strategy. I was left on my own to figure things out and that is exactly what I have been doing for the last 4 years. I have learned through trial and error what works best for me. The doctors I found to be disappointing in resolving my basic symptoms. We have to be our own health advocate and keep in mind that doctors can be a great resource of medical knowledge. I have taken advantage of that to help myself. I seem to know more than my doctors, scary. Take care of yourself. Have confidence in making the right decision once you obtain all the facts. Toni

Thank you so much. You have been very helpful. Good luck now and always to you. Nskinner5

HI, I am 65 years old and, I suffered a cerebellar stroke on September 29,2019, I was 63 years old then. Sitting in a chair I had violent nausea, disorientation, vomiting come on quickly, I was able to dial 911 and my wife, the paramedics showed up in less than 5 minutes. It occurred in a blood vessel on the left side, I was told the blood vessel is malformed, not quite the size of the vessel on the right side of my cerebellum. This was actually my second stroke, although the first one was misdiagnosed as vertigo or BPPV. For the first one, in 2017, I was in the hospital for about 3 days and was released. I was to to do the Epley maneuver, which seemed to do nothing. I was back to about 95% within three weeks. I was actually back to teaching a Spin class at a local gym in about four weeks.

The 2nd stoke, in 2019, was more serious, I was in the hospital for 16 days, that included about 10 days of in-patient physical therapy.. I am quite active and exercised regularly up until about a year before my 2nd stroke occurred. My blood pressure was bordering on slightly high, as is my cholesterol. Anyway, my Neurologist did not seem too concerned, I was put on some blood pressure and cholesterol medication and baby aspirin, and told by my Neurologist that "only the people that know I had a stroke, would know I had a stroke." I am now at about 17 months since my 2nd stroke, and I still have what I would consider significant balance and coordination issues. I have a very good Physical Therapist that I see once a week, and I do PT exercises about 5 to 6 time a week, and I ride a stationary bike 15 minutes a day, and 10 minutes of walking about 4 times a week. I have just added some yoga, only about 10 minutes. I also am learning to play the ukulele. Anyway, sorry, don't mean to be so long winded. What I am asking or looking for is someone who specializes in cerebellar strokes. I know that rehab takes time, but it seems like my recovery has stalled and actually regressed at times. It also seems like neuroplasticity is just not happening, I am doing all that I am supposed to, good diet, sleep, PT, exercise, etc. Maybe I'm impatient, I just want to make sure that I am doing all the right things for this specific kind of stroke. Thanks for listening, I will stop now.

Hi @steveinak oh so sorry to hear of your stroke. I had my AVM in September as well but 3 years prior. I have learned that strokes or aneurisms in the cerebellum region is not common at all. Finding a physician who has that specialty is very rare. I don't know where you live but your best bet would be to go online or start making phone calls to find your doctor. In Florida where I live I have not found such a physician. After a few years I decided to help myself using the trial and error method. While I was in the ICU(nearly one month) after my AVM, I had a team of physicians consisting of neurologists and neurosurgeons. I was disappointed to get a lot of uncertainties for answers. Like you, I was very active with routine physical exercises prior to my AVM. I wanted guidance in order to get back to my routines but instead I was left with many unanswered questions. I have come to realize there are not many survivors for finding answers. Another reason why answers are hard to come by is that there are so many locations for strokes to occur which can result in different deficits. May I suggest to start trying things yourself to find out what works best. Much of the generalized information regarding strokes can be found online. I don’t take any medications and don’t feel I need to. If you do, then you will be in need of a physician. I also found the Epely maneuver to be of no help. I do feel the imbalance in my ears. Have you seen an ear physician for an assessment? I have had physical therapy 3 different times in different settings, home care and outpatient. I initially was in a wheel chair. My recovery has been a slow progression but nonetheless I am able to walk now using a cane for unleveled surfaces like the lawn and graveled driveway. Indoors I do not need any device for walking. You were lucky to have been mildly affected. My symptoms limit my mobility with the muscle weakness, dizziness, incoordination, nausea and vomiting, motion sickness, and double vision. I exercise using a mini cycle and portable elliptical machines at 10 minute intervals. I wish I can do longer but my body can’t tolerate the heat. I do use a table fan each time. Perhaps slow increments will be tolerable. I would like to increase time and intensity using other exercises that I could do. Any recommendations will be appreciated. Perhaps we can help each other through our experiences. I will be happy to answer any questions you may have. Best wishes to you in finding answers for continued success with your recovery. Toni

Hello @steveinak and welcome to Mayo Clinic Connect, an online community of member getting and giving support. From what you shared, you have been through a lot and continue to seek answers, which is great! I can also see that you are specifically seeking out information on a specialist for cerebellar strokes so wanted to offer the following resource as you begin your search.

-Stroke Care at Mayo Clinic:
https://www.mayoclinic.org/diseases-conditions/stroke/care-at-mayo-clinic/mac-20350122

I am impressed that despite your health challenges, you've also made time to take up a new hobby in the ukulele! That said, can you share how you feel you've stalled or regressed?

Does the term cerebellum refer to the cerebellum or to cerebral artery? Nancy5

Hi @nskinner5 the term cerebellum refers to the part of the brain called the cerebellum. Cerebral means the brain so the cerebral artery means an artery located in the brain. The cerebellum is more specific with location in the brain where as cerebral is general. I hope this helps. Toni

Hi Amanda,

Thanks so much for your response and thank you for moderating this group, your efforts are definitely appreciated! In answer to your question regarding stall or regression, I hit the wall I have read about at about 3 months after my stroke. I noticed that I was moving much better at about 2 months after my stroke, than at 3 months and there after. For instance, at 2 months I was bopping down the stairs at almost a normal rate, not really requiring the aid of the handrail, now, almost a year and a half later, I move slowly down the stairs and I rely on the handrail. So, that's what I am referring to when I say I have regressed somewhat. I have read a tremendous amount about strokes since this occurred, as I'm sure many of the subscriber's here have. This 3 month plateau is mentioned in many articles and books. I have read two books on stroke recovery that were very helpful, "Stroke Rebel" and "Stronger after Stroke". This period after 3 months, often referred to as the chronic period, is what I am dealing with, as is probably everyone else that is a stroke survivor. I guess one of the frustrating things about it is that I am not able or allowed to work really hard, PT, exercising, etc., because if I over do it, I pay the next couple of days, but if I sit around for a day or two, I also pay for it the following days. So, you have to walk a fine line of not doing too much, or too little. Sorry, I don't mean to whine so much about it. I know, as far as strokes go, I am fortunate, I have no speech issues, no paralysis, no vision issues, no real cognitive issues, just balance and coordination issues mostly in my left leg and left arm. Also, just an FYI, I live in Eagle River, Alaska, just outside of Anchorage, another reply I had was not sure of my location, so thought I would add that. As I said previously, I have a great PT, and if I continue to work hard, but not TOO hard, I will continue to improve, albeit slower than the first 3 months. Thanks again for letting me vent, now I must practice my uke!