1. < Stroke & Cerebrovascular Diseases

Cerebellar Stroke - experience/treatment/recovery

Posted by strokesurvivordynamo @strokesurvivordynamo, Apr 21, 2017

I suffered a Cerebellar Stroke in Dec 2015 in my 40s and am interested in connecting with other cerebellar stroke survivors to share our experiences, testing/therapy options, struggles on the path to recovery.

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pek59 | @pek59 | Apr 27 2:49pm
In reply to @neverquit72450 "I am brand new not only to this site, but to discussion boards of any kind...." + (show)
@neverquit72450

I am brand new not only to this site, but to discussion boards of any kind. Please forgive the long post, but there is so much to tell!! I had a massive left cerebellar stroke on 1/30/22 while on the golf course. I am a male in good shape/very active and was at the ripe age of 43 at the time- just 3 months from my 44th birthday. I did not have high cholesterol, high blood pressure, did not smoke… none of the “typical reasons”. After many, many tests they determined it was caused from COVID- I contracted COVID for the first time just 2 weeks prior to the stroke. I remember feeling VERY dizzy and disoriented while playing golf. My friend followed me back over to my house and he and my wife later told me I was pacing back and forth asking the same questions over and over (I remember none of that). My wife was finishing getting ready and was going to take me to the ER when I suddenly slid down the wall into the fetal position and was grasping the back of my neck. She called an ambulance. I was taken to the local ER … 👎🏻 Once the ER doctor found out that I had MS - (diagnosed 12/2014), he had tunnel vision even though my wife and mother were telling him they thought it might be a stroke, he would hear none of it. 16 hours later I was intubated and flown to a hospital in Little Rock where I had an emergency craniotomy because my brain had swollen to the point it was pressing on my spinal cord. I was in a coma for 3 days and stayed in the hospital a total of 34 days. The last 14 were doing in-patient rehab. I was told by several doctors and specialists that there was no medical reason I should be alive. I immediately began out-patient therapy once I got released. I made leaps and bounds from where I was up until about the 3-4 month mark. I couldn’t sit up without falling, then to a wheel chair, to a walker and then a cane. 4 months after the stroke I went back to work full time… I am a chemical sales rep and was VERY active at all of the plants I serviced. Since starting back to work and not doing the PT like I was I seem to have reverted some. First of all, I never lost memory, speech or much cognitive ability. I am VERY grateful for that! My deficits have mainly been physical- balance, ataxia, tremor etc. I have tried so many “things”- from pharmacological to adaptive devices, AFO, FES… none of it has helped. I am SO VERY frustrated. Not only because of not getting better, but also at the fact that doctors, specialists etc. seem to know zero!! Lots of times I’ve had to act as my own doctor-(weaning off of meds, trying new meds etc. ) I am a Type A personality and slightly OCD and control freak. Not a good combination to have while dealing with this crap!

I stop rambling for now. Please feel free to comment or ask any questions. I am an open book!

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My husband had a cerebellar stroke 3 yrs ago come June. He didn't have the classic FAST symptoms. It was two weeks until he got the Dx (would have been longer if I hadn't pushed past the PCP) and had more damage in the meantime. The vertigo has worsened. The neurologists agreed that FND/functional neurological disorder (the brain sending and receiving messages incorrectly) likely explains why the symptoms are greater than the brain damage accounts for. I've been reading online for almost three years. This dx is our first ray of hope. Therapy has begun, but it should've started sooner--and he's not convinced it's the way to go. But he agrees the advice to use muscle relaxation and deep breathing does help. One neurologist agreed with my comment that there could be PPPD/persistent postural perceptional dizziness present. The psychologist said that therapy for FND and 3PD are similar. At the final/one-year appt, the vascular neurologist only said he was making a referral to the psych dept. He didn't say why, so we assumed it was for coping strategies or depression (of which there are no symptoms). But there are daily head pains--with no relief from the headache neurologist's many prescriptions and injections. So again, these are likely due to FND. I share these in case it can help anyone else get relief sooner than later.

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mb0926 | @mb0926 | Apr 28 4:46pm

Does he have an aura before the headache so he knows its coming?

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Liz | @lkbbark | May 3 12:00pm

Need to review best medication and supplements

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sally12345 | @sally12345 | May 4 6:03am

Hi, I suffered strokes , diagnosed in 2020 with celebrity vascular small vessel disease. I take the meds. Prescribed. Blood thinner , high Blood pressure pill, statin,depression . Still get pains in my head, vertigo sometimes worse than others. Off balance gait..there is no answers to this that I have found except meds. Life changes and hope.

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1 reply
pek59 | @pek59 | May 5 11:27pm
In reply to @sally12345 "Hi, I suffered strokes , diagnosed in 2020 with celebrity vascular small vessel disease. I take..." + (show)
@sally12345

Hi, I suffered strokes , diagnosed in 2020 with celebrity vascular small vessel disease. I take the meds. Prescribed. Blood thinner , high Blood pressure pill, statin,depression . Still get pains in my head, vertigo sometimes worse than others. Off balance gait..there is no answers to this that I have found except meds. Life changes and hope.

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Sally12345: Since you also mention "pains in my head," I'll further comment that a brother mentioned pain could be from brain healing. The neurology headache specialist said the pain on top isn't from headache, so she prescribed gabapentin for nerve damage pain. For the back of head and neck pains (muscle tension) she prescribed Baclafen. Both seem to bring temporary relief. I told her that there is a nearby clinic offering PEMF (pulsed electromagnetic field) therapy and infrared therapy. She said, "They work, if you have the money" (not covered by insurance). Then she suggested Cefaly--an electrode, similar to a TENS Unit (which is never to be used on the head), but for migraine. For Chris, this simply masks the pain while its worn--which is better than nothing. A pain management doctor said acupuncture is definitely worth trying (endorsed for headache by the NIH, WHO, and Cleveland Clinic). If anyone has had success w/ it, PEMF or light therapy, please let me know. (Chris has tried four other pills and four types of injections--all for migraine, which the second opinion neurologist said Chris certainly does not have.) As I searched online for relief for my husband, I discovered that there are "headache specialists" and multidisciplinary pain management programs. Then I googled the closest locations. Both are at the medical center we use--yet the vascular/stroke neurologist there didn't tell us! I asked him for referrals.

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