Cerebellar Stroke - experience/treatment/recovery

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.

@merpreb

Hello all- I'm Merry and am a Mentor for Mayo Connect. I'm mostly on the Lung Cancer and Lung Health and Anxiety and Depression. Although I will peek in on other sites from time to time.I am on here for the first time because I led @brightwings here. I know that you have met her by now. I thought to myself that, hey, I should be on here too.
About 2 1/2 years ago I started to have very weird experiences. I had double vision and large black holes when my eyes were open.I needed a new neurologist and I met with a PA. She was just terrific. She picked up some signs and had me get a head CT scan. Because of her astuteness she saved my life. There was more than 50% stenosis in my right common artery. Although it took me quite a while to get into see a doctor at MGH (Mass General Hospital) where I am treated for all major illnesses, I finally got an appt and after many many tests I was scheduled for a stent.
I have a history at MGH because I am a 22 year lung cancer survivor. My first lung cancer was treated by a surgeon at RI hospital and when he moved to MGH I followed him. I am a 4 time survivor of what is called Multifocal Adenocarcinoma of the lungs. This means that I get more than one nodule at a time. They are indolent and when they change they have to come out.
I will read posts here, but I'm sure that this is a site that I should be on. This Friday I have my 2nd year follow-up. And yes, I am nervous.

Jump to this post

Good for you Merry. Welcome…and get to reading. Giggling
Now that may sound off to be giggling she is here, but Merry and I have known each other for about a year at another group for withdrawing from Effexor.
Merry, I also want to say, I have the utmost respect for you.
Wow, girl, you have really been thru it, haven't you?
So many different challenges, anyone of them could have taken you out.
Pssst, I am going to let you join my club…The Energizer Bunny Club.
Why Cuz like me, you are just like the energizer bunny…We keep going and going and going…life is so much sweeter that way, right?
Smiling at you with tenderness, Bright Wings

REPLY

May 1. For all in the Cerebellar Stroke Discussion group, please take a look at the link below that gives information about Mayo's Video Q & Q about strokes. If you click on the link you can register for the Video and also post questions that will be answered by the doctors. If you are not available for the May 1 Video you can watch it afterward. It will be available for retrieval to watch at a more convenient time.
https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/?utm_campaign=hub_email&utm_source=email&utm_medium=digest_card_title_link

REPLY
@merpreb

Hello all- I'm Merry and am a Mentor for Mayo Connect. I'm mostly on the Lung Cancer and Lung Health and Anxiety and Depression. Although I will peek in on other sites from time to time.I am on here for the first time because I led @brightwings here. I know that you have met her by now. I thought to myself that, hey, I should be on here too.
About 2 1/2 years ago I started to have very weird experiences. I had double vision and large black holes when my eyes were open.I needed a new neurologist and I met with a PA. She was just terrific. She picked up some signs and had me get a head CT scan. Because of her astuteness she saved my life. There was more than 50% stenosis in my right common artery. Although it took me quite a while to get into see a doctor at MGH (Mass General Hospital) where I am treated for all major illnesses, I finally got an appt and after many many tests I was scheduled for a stent.
I have a history at MGH because I am a 22 year lung cancer survivor. My first lung cancer was treated by a surgeon at RI hospital and when he moved to MGH I followed him. I am a 4 time survivor of what is called Multifocal Adenocarcinoma of the lungs. This means that I get more than one nodule at a time. They are indolent and when they change they have to come out.
I will read posts here, but I'm sure that this is a site that I should be on. This Friday I have my 2nd year follow-up. And yes, I am nervous.

Jump to this post

Praying for good results for you, @merpreb. Last week, I had my EGD for carcinoid tumors and all was good! Wishing the same for you!

REPLY

@hopeful33250– Oh what a relief you must feel. You had carcinoid tumors in your brain?

REPLY

Hi everyone,

I'd like to invite you to join us today, Wednesday, May 1 at 12pm CT for a video Q&A. Drs. William (David) Freeman and Rabih Tawk will be discussing all aspects of stroke, and will answer questions during the live broadcast.
Simply click https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ for details.
Drs. Freeman and Tawk will answer questions live. Post your questions before and during the broadcast.

Return to this page, https://connect.mayoclinic.org/webinar/video-qa-about-stroke-2/ to take part in the video Q&A live on May 1 at noon CT. It will also be archived on this page.

REPLY

I suffered a right cerebellar stroke on March 2019 at the age of 34. Yep, you read that correctly. About 3 or 4 days before I bought through Jetblue my 4 day trip in May to be at my goddaughters graduation. I bought the non-refundable type because, what could go wrong??? To jump around, the doctors say that I’m able to take a plane, so I’m going to her graduation.

The day that it happened I basically got very dizzy and kept getting dizzier. I even searched in the computer about strokes because I also felt my left arm getting weaker. I said to myself that I was too young, but then I got dizzier and dizzier, so I called 911. When I went to work my writing was off, but I didn’t think much of it. I threw up in the emergency room, where they cut through all my clothes. Then I passed out. I woke up in the ICU room with several tubes in my mouth that at times I would start by throwing up again, though it was mostly saliva. Once they took that off on the third day, I stopped throwing up. I tried to tell them, but with the tubes in my mouth I couldn’t speak and they didn’t understand my sign language attempt.

It turns out I have a vein get dislodged and a clot formed, giving me the right cerebellar stroke. I had one MRI and like 5 CATScans. For the MRI they had to move me from my bed to the MRI bed because I was too weak to get out of the bed. The first few CATScan they moved me, then I moved myself. I was very dizzy, I must say.

It has been two months since the attack and I have right side of face paralyzed except the right eye, although I can’t fully close the eye. As a consequence, I have to pour fake tears on my right eye and sleep with an eye patch. I can now feel better any touch to the right face, but its not like in the left which is normal. I can also feel some of the muscles while before I couldn’t feel a muscle in my right face at all or even move it. Sometimes I drool from right mouth.

My right arm/hand and leg/foot are weaker than my left side. I always had sensation, but it was less than on the left. The right arm/hand was slow and has got a lot faster than before. My hand still shakes when I write and my writing looks like a first grader, but the shakes have got a lot shorter and easier to stop. My writing is also getting better. I also use the Saebo Glove to stabilize my right hand and allow me to write without holding the right hand with the left. Before I always had to hold my hand with my left to attempt stopping the shaking. Apparently, in a few months the shaking is suppose to stop.

I use a walker because I couldn’t keep my balance. It has got a lot better with therapy. I’m currently at the first week trying the cane, which is a lot better than the walker. I do the balance therapy exercises and some balance exercise offered at the Saebo website too.

My right hearing is off, only a high pitch sound. Now, when I was fine I still suffered from Tinnitus in both ears, so I don’t know if its a new high pitch or the old one. Sone doctors say the hearing will come back while other doctors says its gone forever. I say lets wait and see, since that is all I can do at the moment. I have got used to hearing everything through the left ear.

My right eyesight is slightly off, although I saw double visions plus everything moving for 3 or 4 days after the stroke. Only the left end was everything stable, so I look mostly that way. I feel every day its a little less to wake up and feel the body move to the right. I still feel dizzy, especially when I’m standing and walking. It had got better, but I can still feel it. From about my right forehead to my right ear, passing by my right eye and even my right nostril, I feel a pressure that its daily going away, but only a little.

I go to outpatient therapy and its suppose to end in a month. Before that I spent like 5 days in ICU, 4 days in another big room where they have the normal people, and then 2 weeks in hospital therapy. I also do most of the exercises at home everyday.

In the middle of this week I visited another doctor who showed me for the first time my MRI shots and where in my brain the stroke happened. He also said that I was very lucky, but where he made the difference versus all the other doctors that said that was by telling me that if the clot would had happen 1 to 2 millimeters above the artery my only solution would had been death.

That’s my experience with the cerebellar stroke. I really hope to walk again, write again without the glove, and feel normal enough to go to work by the end of this month. I don’t think its going to happen, but you never know. I’m going on the flight at the end of May to the graduation of my goddaughter, God willing.

REPLY

This was in news today. “28-year-old man suffers stroke from cracking his neck”
https://apple.news/AiQopdY_TQgeYTnnU41NZTw

REPLY

@narciso
Hello, you have had this event just 2 months ago. The one word I have for you is patience. The brain heals so slowly.
I had a full on stroke Nov of '17. The drag your foot to the door, left hand clenched, drooling kind of stroke.
Today, I look agile. No one would know I ever had a stroke.
Patience. I remember God giving me that answer to a different question I was asking…I roared at God, what this again????
I have learned patience since then….
So why patience, the brain recovers slowly, very slowly. Oh did I mention slowly? Nothing is going to rush this process.
Yes, you will go to see your granddaughter graduate. It's by having little goals you get thru this and past this. Hang on girl and keep coming back.
We are all in this together. Bright Wings

REPLY
@narciso

I suffered a right cerebellar stroke on March 2019 at the age of 34. Yep, you read that correctly. About 3 or 4 days before I bought through Jetblue my 4 day trip in May to be at my goddaughters graduation. I bought the non-refundable type because, what could go wrong??? To jump around, the doctors say that I’m able to take a plane, so I’m going to her graduation.

The day that it happened I basically got very dizzy and kept getting dizzier. I even searched in the computer about strokes because I also felt my left arm getting weaker. I said to myself that I was too young, but then I got dizzier and dizzier, so I called 911. When I went to work my writing was off, but I didn’t think much of it. I threw up in the emergency room, where they cut through all my clothes. Then I passed out. I woke up in the ICU room with several tubes in my mouth that at times I would start by throwing up again, though it was mostly saliva. Once they took that off on the third day, I stopped throwing up. I tried to tell them, but with the tubes in my mouth I couldn’t speak and they didn’t understand my sign language attempt.

It turns out I have a vein get dislodged and a clot formed, giving me the right cerebellar stroke. I had one MRI and like 5 CATScans. For the MRI they had to move me from my bed to the MRI bed because I was too weak to get out of the bed. The first few CATScan they moved me, then I moved myself. I was very dizzy, I must say.

It has been two months since the attack and I have right side of face paralyzed except the right eye, although I can’t fully close the eye. As a consequence, I have to pour fake tears on my right eye and sleep with an eye patch. I can now feel better any touch to the right face, but its not like in the left which is normal. I can also feel some of the muscles while before I couldn’t feel a muscle in my right face at all or even move it. Sometimes I drool from right mouth.

My right arm/hand and leg/foot are weaker than my left side. I always had sensation, but it was less than on the left. The right arm/hand was slow and has got a lot faster than before. My hand still shakes when I write and my writing looks like a first grader, but the shakes have got a lot shorter and easier to stop. My writing is also getting better. I also use the Saebo Glove to stabilize my right hand and allow me to write without holding the right hand with the left. Before I always had to hold my hand with my left to attempt stopping the shaking. Apparently, in a few months the shaking is suppose to stop.

I use a walker because I couldn’t keep my balance. It has got a lot better with therapy. I’m currently at the first week trying the cane, which is a lot better than the walker. I do the balance therapy exercises and some balance exercise offered at the Saebo website too.

My right hearing is off, only a high pitch sound. Now, when I was fine I still suffered from Tinnitus in both ears, so I don’t know if its a new high pitch or the old one. Sone doctors say the hearing will come back while other doctors says its gone forever. I say lets wait and see, since that is all I can do at the moment. I have got used to hearing everything through the left ear.

My right eyesight is slightly off, although I saw double visions plus everything moving for 3 or 4 days after the stroke. Only the left end was everything stable, so I look mostly that way. I feel every day its a little less to wake up and feel the body move to the right. I still feel dizzy, especially when I’m standing and walking. It had got better, but I can still feel it. From about my right forehead to my right ear, passing by my right eye and even my right nostril, I feel a pressure that its daily going away, but only a little.

I go to outpatient therapy and its suppose to end in a month. Before that I spent like 5 days in ICU, 4 days in another big room where they have the normal people, and then 2 weeks in hospital therapy. I also do most of the exercises at home everyday.

In the middle of this week I visited another doctor who showed me for the first time my MRI shots and where in my brain the stroke happened. He also said that I was very lucky, but where he made the difference versus all the other doctors that said that was by telling me that if the clot would had happen 1 to 2 millimeters above the artery my only solution would had been death.

That’s my experience with the cerebellar stroke. I really hope to walk again, write again without the glove, and feel normal enough to go to work by the end of this month. I don’t think its going to happen, but you never know. I’m going on the flight at the end of May to the graduation of my goddaughter, God willing.

Jump to this post

I had my stroke August of 2018. Had lots of balance issues and still work at it daily. It is getting better, in fact I would say I’m at 95% normal now. It take time and lots of work, Brightwings is right, you have to be patient give it time and be fearless in recovery! Question everything, learn as much as you can about stroke and what works best for your recovery, everyone responds differently to different types of exercises.

REPLY
@hopeful33250

Praying for good results for you, @merpreb. Last week, I had my EGD for carcinoid tumors and all was good! Wishing the same for you!

Jump to this post

Teresa- Clean pipes all the way! Thank you

REPLY
@kweber

I had my stroke August of 2018. Had lots of balance issues and still work at it daily. It is getting better, in fact I would say I’m at 95% normal now. It take time and lots of work, Brightwings is right, you have to be patient give it time and be fearless in recovery! Question everything, learn as much as you can about stroke and what works best for your recovery, everyone responds differently to different types of exercises.

Jump to this post

@kweber
As I was reading your post, suddenly I got a beautiful smile on my face.
You go girl. That's a great plan And attitude you have. Thanks for sharing that. It gave me a wonderful lift.
Bright Wings

REPLY
@brightwings

@narciso
Hello, you have had this event just 2 months ago. The one word I have for you is patience. The brain heals so slowly.
I had a full on stroke Nov of '17. The drag your foot to the door, left hand clenched, drooling kind of stroke.
Today, I look agile. No one would know I ever had a stroke.
Patience. I remember God giving me that answer to a different question I was asking…I roared at God, what this again????
I have learned patience since then….
So why patience, the brain recovers slowly, very slowly. Oh did I mention slowly? Nothing is going to rush this process.
Yes, you will go to see your granddaughter graduate. It's by having little goals you get thru this and past this. Hang on girl and keep coming back.
We are all in this together. Bright Wings

Jump to this post

Thanks for your reply, but I’m a guy though. lol

REPLY
@narciso

Thanks for your reply, but I’m a guy though. lol

Jump to this post

Please forgive my error. I hope you can still take in my words in spite of my error. Bright Wings

REPLY
@brightwings

@jmjlove
I came to this group today for the first time because I had a second brain event thursday. I have been reading since I got here.
Oh Darling, I am sitting here weeping after reading your struggle to find yourself after this earth and life shattering event.
I am crying for you and for me. I am struggling to breathe right now. I am an empath and didn't have my shield up. Ok I am back to myself now.
The depth of your pain is so deep, rarely have I experienced much this in others but I recognize it because that is how deep my own pain WAS because of extreme childhood abuse.
I was also crying because you stated my deepest fears. To lose my life as I know it because of a stroke after all the work of changing the effects of the events of my childhood and taking back my life completely would destroy me or that is my fear anyway.
However, I am a 68 year old woman who choses to be in control of her life. I do it well too. I teach others how to take back their lives also. I think I am going to start a new group titled TAKE YOUR LIFE BACK. Yes, but not today.
I have been on a 33 year journey to erase EVERY EFFECT of my abuse and last year I finished that journey. I mention this because I remember what helped and teach all those skills to others.
I invite you to click on my name and look for a recent post speaking about I AM THE GRACEFUL LIGHT.
I use that when I am feeling my worst, which has been often lately cuz of a multiple sclerosis relapse and other things happening in my life.
When I am the Graceful Light, I stand straighter and do not fall as much because I glide, not walk.
Anyways, for what it is worth, I am with you, sending much caring your way. I am also sending a tiny rainbow. That is yours to keep forever. It has sticky on the back of it so I hope you put it on your sleeve so you can see it move with you. It will give you light. You need that right now.
I invite you to draw a rainbow, post it on the wall in front of you and look at it often. It WILL bring you happiness often and you will get many dumps of good brain chemicals that will bighten your mood. I promise…
.
Bright Wings, stick with me baby cuz we are both going to feel better.

Jump to this post

@brightwings…..just found your lovely note to me. Sounds like you've perfected empathy, but I find those that have suffered much, and I don't mean just physical, are deeply empathetic. I ve spent 41 years married to a man 100% disabled by PTSD (marine, Vietnam War veteran) diagnosed unemployable. Ate stress morning noon and night. Abusive when triggered. Spent life desperate to avoid triggers. Learned to recognize the steps leading to meltdown, learned to cut it off, if possible. Poor hubby. Poor family. Neither husband or I even knew what we were dealing with for first 35 years of marriage. It was obvious he wasn't "normal", but it wasn't until a very stressful event occurred that he was convinced he absolutely had a problem that he absolutely could not control. Long story short. He went to VA. Was considered a classic case of severe debilitating PTSD. Received long overdue counseling, was put on disability. With no need to be reevaluted…which is normally mandated every one or two years at the VA Best thing that has happened in our 41 years together. So, abuse, due to little fault of his own, if you understand PTSD at all….is managed by finally having the tools to deal with his through the roof anxiety, phobias, and temper. Do you wonder about how much the abuse and stress contributed to your stroke later on? I do, but it really doesn't matter at this point. Sounds as though you've learned the art of making lemonade from lemons. You really do sound so "bright".

Life may have been bitter, but it was also sweet. My husband has always been supportive (when he wasn't having a meltdown) faithfull 100% always, protective, and a seeker of truth. He taught our 6 kids history, politics, economics, intelligent debate and the art of arguement ( as in debate). Provided a moral standard, work ethic, self sufficiency, problem solving. He is an electrician, artist, writer, inventor, musician. Together we managed to produce a photographer, composer of 16th century style sacred music/teacher of gregorian chant, two graphite portrait artists, a soprano, a tenor, a baritone singer. Website designer, engineer, builder/designer, business entrepeneur, farmer, and those married homeschool their own kids, just as we did. Most of the kids have more than one skill. NOh WAY was I smart enough or talented enough to make any of the above happen. Together hubby and I worked to create a home environment that allowed for developing talents. God gave them gifts. We did not.

Why tell the above? Certainly not to boast, because as I've said, no way can I make those things happen. And certainly I can't provide the talent and the level of skill needed to master those arts. I mention all the above to outline what my life was filled with BEFORE stroke. AFTER stroke my most thrilling accomplishments were buttoning my shirt, doing the ties on my shoes, putting my hair in a pony tail. My joy now is rocking my grandkids (14 of them), listening to them prattle, watching them draw and paint, play organ and piano. I still have life to live, thank God, but it's not at all what I imagined for my golden years. How about you? We're you prepared? Or foresee trouble down the road? I don't whine about it…does no good…and is annoying. My participationin life now is according to abilities on any given day. Life has been greatly simplified, that's for sure, which isn't all bad, lol. But, when you've spent your life working hard and producing…don't care if it's only raising animals, growing your own food, canning, or refinishing furniture…and you're reduced to relying on others, and just doing little things, it takes much mental adjustment, don't you think?

Thank you for your kind note. Again, my letter sounds like I'm tooting my horn. My kids got in trouble, caused heartache and disappointment, like most kids, but life was just so colorful and rich. My lesson to be learned is to explore the little noticed riches in life. To appreciate that which I may not have properly appreciated. My kids stepped up and took care of me, which is to be valued much more than a special skill. My husband will go to any lengths to see I get what I need. And each day, to wake up to another day and another chance to be a better me is a priceless gift. I want to be properly grateful and learn to look ahead instead of brooding over what is no longer. Really. Mental ruts are torture. You sound like you are excited and thrilled to share with others your excitement and pleasure of life.So very happy for you! God bless you! JMJ

REPLY
Please login or register to post a reply.