Cerebellar Stroke - experience/treatment/recovery

As far as not getting diagnosed on the first trip to the ER: I learned from speaking via Zoom with the Vestibular Disorders Association's (VeDA--which by the say does not address post-stroke/vascular dizziness) volunteer ambassador, David Morrill. He, like my husband and yours, had a stroke the ER doctor missed. His brother later did also, but knew from David's experience to insist on being evaluated for a stroke. David said there's an effort under way to educate ER doctors to miss fewer strokes with atypical symptoms.

After too many bad experiences with doctors over the years (we are 64), I know I have to do my own research and must trust no one as having the final word (get second and third opinions). It's simply a fact of life. My husband's quality of life is too important to leave any stone un-turned. I’ve done countless hours of online searching--since he had a stroke in June 2021--since my husband is not able to do it for himself. EnableMe.org.au is a website in Australia "dedicated to stroke recovery and support." I’ve found it Much more helpful than any of the American stroke websites. I signed up for email notices of current medical research trials to participate in (clinicalconnection.com). Most search words take me to http://www.ncbi.nlm.nih.gov (the National Center for Biotechnology Information at the National Library of Medicine for the National Institute of Health). The scientific articles there provide “information to advance science and health by providing access to biomedical and genomic information.” Even though I don’t understand all the lingo (including “genomic” :), it’s worth the time to read as much as I’m able, just in case there’s a lead to a possible treatment (for post-stroke head pains, dizziness, fatigue, tinnitus, hyperacusis/sound sensitivity). Often I read there that “more research is needed.” With the Baby Boomers at the ages for stroke risk, I wonder why more research hasn't been done in anticipation of this. But Don’t get discouraged. Neuroplasticity is key, and there are books to learn how to leverage it. Just be aware that memory damage might a significant hindrance for making the most of that science (at least it is for us). I thank God for the Internet! I also find it a real blessing to connect with others who are living what I’m living as a support person and to pray together--plus I sometimes gain helpful information. I chose one that’s faith-based (“Nourish”) and one for dizziness (dizzycoach--led by a physical therapist). There are online groups for stroke survivors who are able to participate.

As far as cerebellar stroke causing vascular central vertigo, my husband went for three months of sessions each at two physical therapy locations. They both made him worse, to the point of having to be discharged for regressing (insurance coverage withdrawn). Finally, after 22 months of looking for answers, I called a large medical center's vestibular clinic director. He offered me no hope for my husband via rehab therapy, other than to get yet another evaluation. It’s possible that more than one type of vertigo can exist at the same time. We may still investigate functional neurology (a specialty within chiropractics).

Hi- I would love to “join” a cerebellar stroke group if there is one. I just passed the one year mark- specialized Neuro physical therapy was most helpful for sure.

I wonder did any of you have ear ringing after the stroke? Have you been able to improve it?

I tackled my “deficits” (right leg/vision/balance/dizziness) with specific exercises and had made a nearly complete recovery (fatigue took upwards of months and months and months- the Physio team told me to walk every day: first with a cane then urban poles - these were instrumental- then graduated to walking on my own-stamina improved). To be specific I couldn’t climb stairs to my bed for the first month, it took me a long time to hit my goal of 10k steps a day, had to get there incrementally. I remember not believing I could go a day walking only 1000 steps and still be devastatingly fatigued. Have hope!! Keep walking, the Physio team recommended an Apple Watch for fall protection so I could walk alone- the step counter and exercise rings were an unexpectedly great motivation.

The dizziness, visual deficits and balance issues all improved but I had surgery at my one year mark to fix a PFO- an undiagnosed hole in my heart and THE DEFICITS RETURNED- I knew it the minute I got up for the first time. Limp was back. Couldn’t lift my leg into bed. Couldn’t negotiate steps. My visual deficits returned. Balance was gone again.

It’s now been a month and it’s like reliving last year, nearly all deficits returned - I was told it was due to the surgery and have read pain drugs can trigger this- has anyone else experienced this?

My worst deficit is the ear ringing for sure- has anyone found anything to help?

Cerebellar stroke is a whole unique dimension- I’ve dubbed my cognitive challenges a time/space continuum deficit. The balance/visual/propioception/fatigue sum it up for me- and a weird leg lead deadweight feeling- the Physio’s say it’s my stabilizer muscles.

The gift? I say I permanently live in the present! I Keep things slow. Laugh at myself every day and encourage my kids to do the same- I was 50 when I had my stroke had always been healthy. I believe I’ll make a full recovery. Try to go easy on myself but no doubt it’s been a crazy ride.

-TPA administered within two hours
-woke up on a Sat morning/had felt strange all night
-ended up on the kitchen floor

Thanks for opening the subject.

Thanks for the tip on the Australian site. Your husband is lucky to have you!

“post-stroke head pains, dizziness, fatigue, tinnitus, hyperacusis/sound sensitivity” have you found any help for these? I sure hope so and would appreciate any suggestions to learn more.

I hope your husband is feeling better.

I hope your Mom is better. I had difficulty swallowing right after my stroke. I found lying just on a flat pillow made it worse. If I propped myself up it seemed to shift the muscle group enough or neural pathway.

It’s on my mind bc my deficits came back after surgery recently to fix a hole in my heart that allowed the stroke to happen. It can be triggered by the strong pain meds administered.

The swallowing thing came back before I went into surgery so they propped me until I could swallow. You’ve just made me realize it must’ve happened when they gave me a certain drug- it was immediate I couldn’t swallow. The feeling is awful- hope the propping helps or it’s gone away!

Hope your mom is well.

That is me! Basilar skull fracture/brain stem stroke at 23/car wreck/tore 68910/ part 11 cranial nerves right side/very lucky girl- had to rebuild right side/severe nerve damage/ I am brainy person now/ 3 state license-retired with Bank of America- lots of problems at 65 now but still blessed with ok health! Very lucky! should have been a quadriplegic!!

Hi, I have suffered from several celebrants strokes. Not knowing what they were I stayed at home thinking it was a virus , my son has been sick prior to this. I was startin g to feel better when I finally got to a stroke clinic and found out I had them. I
Was diagnosed with CVSD. Thought I was in good shape walked 35 miles a week, did yoga, no drinking of smoking , no drugs, I do have a family history tho. Diagnosed in 2020 Jan. Nothing is the same since. My balance is off so walking can lead to falls. My mind is confused easily , questions aren't always easy to answer, my speech can be garbled and repeatative. I'm not as strong and fire easily. My eyes now are blurring and feel like they aren't always working together.I get dizzy too and nauseous.....

Had cerebella’s stroke 9/17/2022. Clot removed within 45 minutes, left side of body, speech affected.
After surgery and brain scan very slight deficit detected. Movement and speech came back immediately. Hearing and balance were largest loss. Rehab enabled me to resume self care within 2 weeks. 18 days of hospitalization. I use walker to make sure I don’t fall, blood thinner Plavix, low dose aspirin, Lasix. Covid related heart problems caused by lack of treatment on cruise. I am 81 and am doing amazingly well. Everything takes me twice as long, but luckily I can still do most things. Hope all stroke victims have outcome as good as mine.

I had my first cerebellar stroke in 2018.I didn't "fit the stroke profile. "I was hit with extreme vertigo and nausea (no headache). Nothing showed on the CT scan but it did show up on the MRI the following day. All symptoms resolved in a few hours, no deficits. Five years later ( 3 months ago) I had my second cerebellar stroke. Same symptoms, hospitalized for 5 days. Now after 3 months the nausea is gone and the unbalance is very slowly improving. I use a cane (walker for the first 2 months). Dizzy when I turn my head. PT has helped and I'll be doing balance work from now on. Retraining the brain! I wish my doctors had emphasized the importance of this and I didn't need to resort to "Dr. Google" for information. In the process of testing to see if we can find out what is causing these strokes. Best wishes to everyone.