Quantcast

AVM Survivors Network

Numbness and pain


#1

Hello. I had my AVM in my spinal cord. It was located on T12. I had my surgery almost 2 months ago. Before surgery I had trouble urinating and numbness in my buttocks all the way down to my knee on my right leg. I was also starting to lose feeling in the same spot on left leg. Dr said in 1-2wks I possibly would’ve been paralyzed. My question is, I know it has only been 2 months, but how long did it take for you guys to get feeling back? I am also still having nerve pain. How long did it take for nerve pain to subside? It’s mostly right under my butt cheek. (Maybe tmi) my dr said that strength comes back first, then, pain eases up, then numbness goes away. He said he can not give me a time limit on it and I may have permanent damage. I think The Lord everyday I have made it this far. I guess I just need lots of patience!


#2

Heather

I’m almost 2yrs out from 2 AVM’s being removed from my spine l4 l5 s1, there are good days and bad! Sometimes very bad. I still have the numbness in my legs and buttocks, I too have the issue with the bladder and bowel issues. My Dr from UofM Ann Arbor told me that this might be the new me. I look at it this was he also told me I was 24hrs from being in a wheel chair the rest of my life. I just take it one day at a time. I hope and pray thing get better for you.

Tank5252


#3

Thank you so much. I will keep you in my prayers as well. It has been so hard. I couldn’t imagine 2 yrs of this, but if that’s what I have to do, I will do it. I’m wondering, do you work? Right now they can’t give me a time when I can go back to work. I have been off since April. That’s when this all started. I was evaluated for physical therapy earlier this wk. I am praying that this can help with pain and numbness!


#4

Heather

I was off work for 11 months, I’m back to work but it’s one of those one day at a time things. I work at a community college teaching and there have been days that I have taken off for health reasons your going to have to play it one day at a time.

Tank5252


#5

Thanks. That’s what I’m doing. One day at a time. I have come a long way and I pray we ALL keep getting better. It’s just been mentally exhausting, but thinking I may just have to accept, like your dr sai, this is my new life. At


#6

Hi Heather! Had my AVM (spinal dural fistula) located at T9 and removed in March 2013. So it's been about 17 months for me. The numbness has not got better for me (in fact, it's a bit worse), but other stuff, like walking, strength and balance is much, much better. Bladder is still not back to how it was before this, but there's been some improvement just recently, so even after 17 months good stuff is still happening! I'm fortunate since I basically have no pain at all, though slight spasticity and lots of "pins and needles" weirdo sensations in my feet and legs. My body is changed but my life is almost back to normal, last week I started to work full time again and so far so good. It's weird but after a while the numbness etc is just there and you stop to think about it. Even bladder related stuff, which was a BIG issue for me in the beginning, is just a normal part of my life now.

I think the important factor here is how much damage there is on the spinal cord, and only a follow-up MRI can determine this I guess. In my case, it took a long while before anyone even told me that the AVM might have caused damaged on the spinal cord. I found lots of help from this forum, where people with both traumatic- and non traumatic spinal cord injuries meet and discuss basically everything related: http://www.apparelyzed.com/forums/


#7

Hello,

How’s everyone doing? It’s been nearly 4 years since the last post in this forum.

I had my spinal Avm (type2) at T10 removed in July 2016. Its been nearly 2 years now and I still cannot run or jump. My legs, right waist and hip are still numb. I’m wondering if my sensation will even return. I could walk better than I did before but I dun tink the sensation has made any improvements. Have you guys got your sensation back? Or other functions? Any improvements?