Vermis cerebellum

Right after my surgery I did PT and it included some vestibular exercises that I worked very hard at, but it was just too much and I felt like it made me worse, at least for a few hours after. I ended up working more on balance and strengthening. For the vestibular part I just decided to try and move around as normally as possible; to walk and do what I could. If something made ma a little dizzy I would do what I could, then rest until it went away. Everything we do is a vestibular challenge.
At about ten months I went back to PT for more vestibular therapy. Even then I was doing things slower than they suggested. When I would tell them how long I was dizzy after a session then they would adjust it down.
Please let the PT know how you are doing. They can adjust, or maybe help you figure out if it would be better to try again in six months?
When I did go back it was a huge help for me.
My neuro surgeon did say that the cerebellum has a huge capacity for compensation. It take a long time. I’m at almost four years but I’m still seeing some small improvements.
I’m with you on walking and being outside. I love it and it’s definitely good for the body and the soul. I hope the spring comes early for you
Carol

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Thank u Cancrd
I actually did talk to her this week and even cried. She was so reassuring and sweet. I talked about my bad haircut from surgery and she encouraged me to wear my scars with honor because I’m still here! It is true. All we go thru. It could have been different so easily. She felt she was pushing too hard and looked thru everything and really made some changes. It’s helping. Everything u said makes lots of sense.

Today’s my birthday. It’s good to be alive. My Surgeons Office called and scheduled my angiogram for Feb. 28th. I wish I didn’t have to. I’m so afraid they’re going to find something and I’ll need another surgery. But I know it’s all part of the surgery. They have to check. They’ll also look to see if I have anymore malformations. You’d think he would have looked with the other 3 angiograms…?? But I’ll do it. I want it all over with.

I’m starting to feel better. Wish the dizziness was gone. But I feel it will be with my strength getting better. Walking I know is the answer for me. I’m at week 8 after surgery now .

Thanku so much for your time. Hoping the best for all

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Happy birthday! I think you’re being very strong and while the year ahead may still have it’s challenges, I think you’re doing brilliantly!

I hope you had a super day yesterday.

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Oh thanku DickD. I really do appreciate that!

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I’m glad you are doing better. I remember how hard it was. I tried to just keep putting one foot in front of the other. It’s so slow and feeling dizzy and nauseous doesn’t help at all.
You are doing way better than I was. I’m so impressed.
There are some great coping strategies on the vestibular disorders website
Good luck

Nice to hear from someone that I’m doing good. I guess I know I am generally, today I don’t feel it at all. I’ve been trying to get off my zofran as I’ve been on it 8 mths now. It has some pretty major side effects. Or can have. My new Dr wanted me to try cutting back. So I’m taking one at 9 a.m. and one at 8 p.m. it’s usually 4 a day every 6 hrs. Today I felt bad but I need to eat within an HR of taking it and then again every few hrs. Just something. She also said I could put rubbing alcohol on a cotton ball and sniff it. It’s supposed to help not to throw up. I threw up yesterday twice. Not today tho. I just need to pay attention to myself and make sure and eat and sleep. I hope I can just take when needed soon… anyone else have success on how to do this?
Thank you Cancrd

Hello everyone. I’m trying to decide where to post this and so decided where I started would be a good place. I had my angiogram yesterday in Portland to see how my surgery went. It has been 11 weeks I guess or 12. I was pretty calm, as I read enough that people were saying it doesn’t hurt. I’d had 3 thru this journey already but was asleep for them all. So it was great. I love my Dr. I call him my friend and he lets me squeeze his hand each time. He’s Canadian so has a beautiful French accent. It was nice yesterday because I was awake and got to talk to him an hour off and on and hear him say over and over no talking, no swallowing, no moving etc. So he could get a good picture. It was all good. Took me to recover for 3 hrs and within probably half an HR he came in with my news. He was all smiles and said everything looks wonderful. U did so good. We got it all. I cried with tears of joy. I couldn’t quit. He asked if I was ok. I said these are happy tears dr. Vincent. So he said I don’t need another test for 3 yrs. Now I just need to recoup and get stronger. Recover! I’m so very relieved.

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That is great to hear, absolutely fantastic news! I also love to hear the stories of great Dr., I had a couple who were wonderful humans in difficult times, it made it so much better. Take Care, John.

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When I was at the same stage, my doc simply said to me, “Resume normal life.” It’s not easy to do but my recommendation to you is to resume normal life: start slowly and carefully but put this episode behind you and just look forwards.

Well done!

Richard

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Thanku so much John. What an experience! Take care of you too.

Thanku Richard. Yes I have to get used to this part now. Super believing I’m ok! I got used to, over the last 8 months, being careful as not to rock the boat so to speak. Now I can resume as normal? Are u sure doc? Is it true doc? You sure u didnt miss something doc? On and on. I’m sure I’m not alone in worry, but I know I just need some time. Any little feeling in my head now is healing and I just want to believe it and get on with life. Don’t want to dread three years from now. I just want to live my life. Plant my garden, walk, eat ice cream with my granddaughter, love my dog, enjoy the life out of my son’s. Love my hubby and let him continue his training work to keep up helping in the house!! In other words just love my life. Yay!

This is what it is about. The simple things of life.

All the best,

Richard

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I am so excited for you Debbie. I have never had a good experience with angiograms. I have heard that they can do wrist angiograms now. If I ever decide to have another one, I am going to ask about that procedure.

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Great to hear
I have had three grand mal seizures
But at least AVM is gone
Out of my body

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Hello everyone. I’m in about my 12th week past my craineotomy. My Dr just called today with a phone visit that was planned when I left the hospital. There he told me he wouldn’t see me for 3 yrs. Today he said he wants to see me in a yr. I asked why . He said he really likes to check on his patience in a yr and is that ok with me. I of course said yes, he knows best. He said the next one would 3 yrs after that. He said again my angiogram looked fantastic. Really nice he said with his beautiful French accent! He said he got all the malformation. I said so are they all gone? Do I have anymore in my brain? He said No! So tomorrow’s now the day I’ve been dreading. It’s time for my covid booster. I am so afraid. It was 2 weeks after my second shot that I had my brain bleed and stroke. I asked him if it would be ok. He said it should be ok! Uugghh. I almost don’t want it, but I do. I want to return to a few things that require all 3. I just have to make sure I’m around help for the next 2 or 3 weeks I guess. Hope all is well with everyone. I’m feeling better everyday!!

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Debbie,

Honestly, I think it was just a timing thing before: I really can’t believe there was a casual link between vaccine and rupture. Plus, if you’re now fully fixed, no reason to think you’re different from anyone else.

So please relax about it, you’ve done all the trauma, and look upon it as step 1 of resuming normal life.

Very best wishes,

Richard

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Thanku so much DickD. I’m sure your right. Seeing it as step one is a good recommendation! Dr. Said resume life as normal! Lol. Whatever that means. I had my shot. So it’s done now. No more dread. I feel better already. I really think your right. It was just the timing of it. No one, no drs, think any differently. So I’ll just keep tabs on myself and make sure someone is always close for a couple of weeks. It’ll be fine I’m sure. Now on with my nap! I’m worn out. Have a great day!!

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Hi your sister key reminded me of how I felt if I could walk etc. after surgery. My therapist told me that o start participating and this is pulse help: I’m glad u shared it gets better.

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After surgery I think it’s important to regularly see your neurologist very often
Symptoms and stuff everything.

What I learned is that one doctor is the one that does the surgery and the other one is the neurologist that manages your medicine and makes sure you won’t have seizures and makes sure your brain gets irritated.

I made the error of not realizing that the brain is such a complex organ do I just trusted the doctor :man_health_worker: that did the embolization

Little did I know that doctor has no idea about seizures

I did 19 doctor visits total all of them told me I will have vision loss not ONE doctor told me I can have seizures

A massive failure to see problems ahead of time.

After I had seizures then they can clearly see it’s right in the surface.

So basically I am working on forgiving myself as I thought it was my fault for not investing but lesson learned now I learn learn learn about brain to the point where I am mostly a happy confident person

I’m also aware there are some things only time will tell like seizures

But I also very proactive visited like 6 neurologist and then finally trusted the one doctor who told me I am young so I can tolerate the highest amount of Broviact

I also learned generic drugs often lead to seizures and I also learned 1000 mg of Keppra is the minimum amount of medicine proven to reduce seizures m

So you learn a lot but you have to have a spirit of an investigator and thank God I have insurance

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