I really enjoyed your message and you’re so correct - blessings to all of us for our new normal - each day is better than the last. So much to be grateful for in just the little things. Bless you!
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Me too Vikki! So u can walk with or without aid now? I will start intensive physiotherapy sessions soon once they work out the subsidies. Let’s soldier on in this short life on earth. I’m a cradle Catholic btw. Blessings! Vince
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Hey Vince: I’m a Catholic too. I’m only using a cane now - but it took me three years of walking miles a day - even though I thought I could not do it, I would rest and try again. Progress was slow for me but it was progress. Just didn’t expect it to take years lololololol. We are blessed - I’m looking forward to hearing about your progress 
. Vickie
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Wow! You are indeed an inspiration to me! I will keep up the physiotherapy and hope to be able to walk like u again one day! Nice to know a fellow Catholic Sister in you too! God Bless! Vince
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I just read your story and it is so close to mine. I am four months post surgery and doing 4 miles/day in the house and two sets of hand exercises and a set of back and leg exercise. I have only taken 4 days off since I started and those were holidays. I have now graduated from PT and will start with my personal trainer 3 times per week. I feel exactly like you about not taking a day off. I turned 70 during this nightmare and am so motivated to get back as much as I can. My primary put me on gabapentin yesterday and it is like a miracle. I feel the best I have since this nightmare started last March. I’m also on a muscle relaxant and CBD. I hope you continue to improve and I know what you mean when you say “what is normal”? I just learned about this site and it so comforting to read the stories and not feel like I’m the only one going through this. My best wishes for continued improvement!
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I did the gabapentin for a day but it messed me up mentally so I stopped. I am not too much of a “drug” person so that is part of it. My main drug is Tizanidine 2 MG. What happened to me was I would exercise daily with modest increases regularly. Then one day I increased too fast and got leg cramps. I mean real severe cramps. I noticed if I loaded up the muscles by standing and slowly stretching the cramp would disappear. If lucky I would catch the cramp before it happened. In either case the Tizanidine reduced the cramping sequence to none. Afs I got more in tune with my body and as I continually increased my exercise program I would get a gut feel that I would be cramping in a day so before I went to sleep or knew I would be putting my body into a situation where a cramp would occur I would take a pill or two. If you use it in the future talk to your doc as many just make it a routine pill. I do not do that I do it as needed. One of the reasons is that I believe it is one of those pills that can require increased amounts to be effective and in particular that is true if taken regularly. My as needed usually is once per month but then for maybe a day or two. Then not needed until I jack up the work out.
Its a real weird experience—all of this. I appreciate your reaching out and if you want reach out whenever you want. Looks like you are moving through this stage well. Do not under do and now you know (hopefully) what to do when you overdo.
Duke
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Nancy,
I was watching a TV programme about recovery from stroke the other day, as I was chatting here with @Crystalg and what you’ve said here about keeping going every day reminded me of an excerpt from the programme:
First of all, the big difference is that we work therapies seven days a week. I can never understand how you can run a rehab [unit], particularly an acute rehab unit, that stops Friday afternoon and begins Monday morning. You lose two and a half days and it takes two days to get back what you lost. So we started seven days a week.
Dr Gerhard Florschutz
formerly Director, the Raphael Hospital
It sounds like consistent therapy is the best idea.
Very best wishes,
Richard
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I agree and am keeping my program 7 days a week. I think I will continue to take national holidays off but even then do my 4 mile walk. I found it is something to look forward to – very much like when I was working and anticipated a vacation day! Problem is the next national holiday is Easter – quite a ways off. I’m considering making Valentine’s day a holiday
TQ Nancy for your kind words! Yes we AVM Survivors should never quit. I’m sure you have lived and loved in this blessed life and more good years to you M’am! Cheers!
Both my regular neurosurgeon and the interventional radiologists told me my spinal AVM (T5) was not doing any damage as they didn’t see edema on the cord. Yet I continued to get worse daily - hands, fingers, arms, legs and upper back. I finally got to a specialist at Barrow’s brain and spine in Phoenix. As soon as he heard my symptoms, I had surgery 12 days later. (Had two failed angiograms prior) I am working diligently 4-5 hours per day doing my exercises and walking 4 miles/day. My primary put me on gabapentin which is helping the pain level a lot. Also doing weekly acupuncture which is also helping. My treatment last week I literally was pain free the full hour the needles were in and for several hours after. It makes me hopeful that one day I will be able to be at least close to that. It is so helpful to read peoples stories and especially if they have recovered to a level to have quality of life. Thank you for sharing and my warm regards. (I too am a woman and turned 70 during this nightmare!
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My AVM ruptured 25 years ago and it was in my spinal artery between T10-12. Luckily, I was able to get to surgery immediately to relieve pressure on the nerves caused by the blood clot. I think the timing was key in how much I was able to recover. I experienced temporary paralysis in my right side but left the hospital on my own two feet and a cane. At the time, I focused on healing and learning how to walk properly again through practicing yoga daily. Since then, I’ve lived a mostly normal life, I do experience some lack of sensitivity in my right foot, spasms, and pins and needles in my right knee. I really like doing Pilates now as physical therapy to combat stiffness and improve balance and circulation.
I wish you health and healing in your recovery,
Hannah
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