Cerebellar stroke experience, treatment, recovery - want to dialogue

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.

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

@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

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.

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

What is risk with endovascular surgery with coils and stents?

No. I am waiting for an appt. primary care sent referral, and I have called,but no call back yet.

Thank you so much for this valuable info. I think my next step is to see a neurosurgeon
About endovascular repar of my rt. Cerebral artery. There is one 2 hours away but none
In our town. I prefer to be proactive. nskinner5

I have talked to one. He said to do nothing. Wait for a stroke and dial 911.

Hi @nskinner5 have you spoken to your vascular surgeon for the risks involved with the surgery and what to expect as an outcome? In my case preventing the aneurism would have yielded a better outcome. My cerebral aneurism involved 5 blood vessels connecting at a junction in the cerebellum. As a result I am dealing with diplopia, imbalance, motion sickness, dizziness, and muscle weakness. All those health issues at once limit my mobility. It is very difficult for me to walk on uneven surfaces like the lawn or graveled driveway. I am a high fall risk so I have to be very cautious. The cerebellum is the part of the brain that gets affected when one drinks so I have issues with coordination. Basically, I walk like a drunk without having had a drink, lol. I am on no medications either because I choose not to be. I see no reason for it. I was told by my neuro vascular surgeon that I no longer have the AVM but I do suffer from its deficits. It is a long and slow process to recovery. Very debilitating. I will be happy to answer your questions to help you come to a decision. Best wishes to you. Toni