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AVM Survivors Network

Still improvements are happening....2 plus years on

Hi all,

It’s been a while since I last checked in. I’m quite a bit on now from my bleed within the cerebellum. It bled June 2017. Improvements are still happening, don’t get my wrong it’s extremely slow and a lot of patience is required, but I’m still moving in the right direction. I do however have a question to ask others who have had a bleed within the cerebellum. I’m still contending with my independence. I can walk, but not very far on my own. It’s better for me to be linked armed with someone. This is down to my balance. The few steps I can manage independently have become stronger. This is only really within the household. Does anyone else have stories of similar circumstances. I do believe I can achieve more but it seems to be taking forever. I look forward to hearing anyone else’s stories on this. Many thanks

Hey @Cornishwaves! I was in a coma, to bed-ridden, to walking with a walker, to walking with a cane, to walking independently in a period of about 7 months after 2nd bleed in 2000. So I know it’s a struggle! Then more recently in 2010 I had another bleed, but this time was not put in coma and subsequently did less rehab. Fast forward to the past year or so. I was driving home from grocery store and noticed suddenly I could only see out of right eye. I went to doc, they tested vision and saw fresh blood on optic nerve. Apparently I had had another bleed. From that I surrendered licence, got in touch with Virginia department for blind and visually impaired (https://www.vdbvi.org/).

But I guess here’s the big picture, the agencies are not aware there is a problem unless we ask. I didn’t even know there was a department for the blind in my area. So what I would recommend contacting your local Social Security office (www.ssa.gov) and they should be able to put you in touch with services in your area!

I know that’s a lot, but just trying to save you the hassle of trying to figure everything out on your own! Blessings as you continue!

Thank you for sharing your experience. You have done amazing despite the struggles. I cannot believe you had had three bleeds, that’s scary. Yes it is super hard and it’s definitely hard for others to understand our struggles, as we look ok from the outside. Well that’s the case in my story. Until you require me to walk… I will look at the link you suggested as your quite right we have to seek out our own help and guidance most of the time on this journey

Hi Cornishaves:

So glad to get an update from you. It’s been a while since I’ve heard from you. My AVM in the Cerebellum is and was as taxing as yours. I’m 5-years in and I still have issues with walking, balance, vertigo, etc. I really identify with you about linking arms with someone while walking. My Husband’s hand or arm is my walking assistant. I have trouble walking for extended amounts of time. My legs start to ache; start to feel really heavy; and I become extremely tired, and can barely navigate stairs. I have very little strength in my legs, and I find this embarrassing. I have trouble getting out of any chair because my legs aren’t strong enough. I know I need to exercise, but its hard to exercise when most movements makes you dizzy. Hang in there. We will get stronger and better together. We have to keep going to reclaim as much of our independence as possible. P&P (Payer & Patience) still works. Wishing you all the best.

Sharon D…

Hello, Cornishwaves! So great to hear from you again!

You are doing great! Just keep on with what you are doing. I had my crani for a huge, ruptured AVM 26 years ago and definitely remember how impatient I was to get better and resume life as it was. It took a lot of time to realize life would be different and to find my own way forward. I held on to my father’s arm everyday, as we took a walk on flat surfaces. My gait was very wide-based! It took many months before I felt stable and confident enough to venture out to walk alone down the sidewalks of a very lightly travelled street! In the supermarket, I found that using a shopping cart was a great help, not only for stability but to ease that overwhelmed feeling and dizziness. I still use one today, even when I have little to purchase.

Today I take a walk independently on a bicycle/walking path most days. It is a great way to clear my head and enjoy the quiet. (I don’t know about you, but crowds overwhelm me.)

Patience and persistence will reward you. You will find what works for you. The journey is long, yet those little steps will come and delight you!
Lifeisgood :heart:

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Hi Sharon, thank you for sharing. The leg situation is so frustrating. I’m exactly like you in regards to the legs aching becoming heavy etc. I just keep pushing on, hoping for the day it starts easing up. Can I ask, how long did it take you to feel comfortable enough to walk Alone? I know I will be different, I’m pretty much 30 months on from my bleed and have still not achieved it, though every day is a step closer to the goal…

Hi Lifeisgood, thank you for sharing your experience. I know the gait feeling. Thankfully this has improved, I just require my balance to improve some more. You have done amazing in your recovery and it’s lovely hearing this…

Jo,

I think @Teiry has been going through the same trials as you and I think I remember her celebrating some progress in recent months.

It sounds like you’re doing great, so keep going! You’re worth it, to borrow a phrase!

Very best wishes,

Richard

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Thank you so much for the tag :slight_smile:
And yesss I totally have although both my bleeds were not in the cerebellum, they were in the parietal area, I obtained so much damage due to my 2nd bleed being caused by my vp shunt malfunctioning and therefore my brain was drowning in my csf :confused: It has been a long 2 years and counting but I’m still seeing progress!! Steps/stairs are still my biggest obstacle but as long as someone is behind me or offers a hand I’m good!! What helps is if a clench my no affected hand lol my therapist says that’s all mental and not necessary but if it gives me security and works to just do it :slight_smile: as for my gait and balance I’m good even pace! It’s just getting off the floor if I fall which I usually don’t AND wanting to get off my afo. I walk without at home all day everyday lol

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Appreciate your updates!

So glad to hear you are still making progress. I also had a bleed in the cerebellum. They did a craniotomy and then an external shunt for a week to treat the post surgery hydrocephalus. It’s been a long lonely road, but I am walking and very independent which I’m grateful for. I’ve had some major issues with dizziness and nausea. It’s getting better finally, I’m twenty months post surgery.
It always makes me feel better to hear people are still improving for several years.
Carol

I can’t tell you how helpful water exercise has been for me, especially when I was still getting dizzy every time I tilted my head. The “arthritis” classes at the Y in the warm water pool were perfect when I was needing to keep my head upright due to dizziness and nausea. I still work on balance a lot in the pool and I’m still seeing improvements nearly four years out now.

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