Cerebellar stroke experience, treatment, recovery - want to dialogue

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.

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.

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).

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 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.

As far as Doris’s mention of dementia later in life ... Our two vascular neurologists offered no information on dealing with any aspect of the stroke disease. After my husband had a cerebellar stroke, he had several months of sessions with a speech pathologist for cognitive/memory impairment. She (not the neurologist) recommended a neuro psychological evaluation. That report noted “major neuro cognitive disorder.” We weren't told what that means, and I assumed it was simply the term for the memory damage. (By chance, several months later, I read (at bhwa.com--Better Health While Aging) that it's the term for dementia. I believed that my husband was already dealing with a lot, so I didn’t tell him this. Later, when the topic happened to come up, I asked him if he’d want to know if he had dementia. He said, “No. I’m already dealing with enough.” After many hours of searching online over nine months, I finally read that when it's vascular/stroke-caused dementia, there is nothing to do about it. But at the same time of the evaluation, the vascular neurologist said, "It might not be MND." So we will see the neurologist at the nearest large medical center whose specialty is memory--to leave no stone unturned. And second opinions have been a real help in the past. (She's booked out until January 2024. Always ask to be on the “cancellation list.") Even if you don’t have the diagnosis yet, the Alzheimer’s Association provides master's-level clinicians on their 24/7 Helpline (800.272.3900). They can guide you. The person I spoke with was very good.

Hello @pmorgigno, and welcome to Mayo Clinic Connect. Your pain sounds concerning, and I understand that you are frustrated.

First, you will notice I have moved your post into an existing discussion on stroke, which you can find here:
- Cerebellar Stroke - experience/treatment/recovery: https://connect.mayoclinic.org/discussion/cerebellar-stroke-experiencetreatmentrecovery/

What you share sounds similar to Complex Regional Pain Syndrome, which can occur after a stroke. Here is some information about it in case you might find it helpful:
- Complex Regional Pain Syndrome: https://www.mayoclinic.org/diseases-conditions/crps-complex-regional-pain-syndrome/symptoms-causes/syc-20371151

Have you heard of this before? Do the symptoms sound familiar?

Pain after Stroke
ALL meds have been tried and failed.
Neurologist informs me that there is no medicine or treatment for post stroke pain and that I cannot call it neuropathy.
It's "brain-Pain" sending constant "electrocution-like" waves of pain - eye lid, face, ear, shoulder, arm, hand and fingers - down into leg.
Doc calls it: Re-expression of original stroke.
All those areas feel like when your arm or leg fells asleep and then awakes with that 2-5 second numbness and pain.

Hello, my brother had a cerebellar stroke in March, 2018 at age 62. He still has ataxia in both arms and balance issues, can not walk without help. So is restricted to a chair and in a nursing home. Just wondering if anyone else has experienced bilateral ataxia, and if so, have you found any treatment for it that helps?? He gets very frustrated because he can not use his phone (does have voice activated Alexa for communication), or write, etc. His local doctor has finally said he would look into sending him to Mayo/Rochester to a movement disorder specialist--- Thank you for any information
Jackie Holm

Hi Sharon,

Thank you! Your willingness to share this information is a blessing for all of us reading this.

I'll share this with my husband and hopefully he'll agree to move forward with the testing options. I've learned I need to be careful how I word things or he won't cooperate; and I'm careful not to tell him what to do, which is hard for me because I see him struggle and want to help him. The things you have experience are what we're working through. I'm excited to have the opportunity to move forward with learning more and in turn sharing what I learn with others as well.

We have a fairly high debt now from the bills not covered by insurance; I opted for the lower deductible this year in anticipation of more testing which hopefully will help with the costs. Regardless, it's important that we increase his chances of recovery and improve his daily living as much as we can.

With much appreciation,
Doris