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AVM Survivors Network

Getting worse after surgery


#21

George,
Thank You. I am walking almost normally, also swimming a lot so hopefully, soon i can jog or run. I never felt any pain whatsoever, before being diagnosed with a t7 avm and also post-op, but it has hit me psychologically big time.
I did my surgery in London hospital for neurology (UCLH) and they are amazing. I am 42, and bloody hell this is a hard one to get over.
Good Luck, keep in mind courage is half the cure
talk soon
Joseph


#22

Hi
I Am happy for your recovery ,it seems it went well ,and i agree that swiming and Physio are so beneficial over all .
.i think you are on the good track keep going and hopfuly you can start running soon .
Good luck ,all the best


#23

Hi George and other Spinal AVM survivors, I got well really rapidly after the embolization for an AVF in May of this year, 2018. Then my condition seemed to deteriorate along with my ability to walk. I was experiencing what I thought was a return of the symptoms I’d had pre-op. I started falling again, had pain in my groin and hip and I got quite alarmed as the pain I had leading up to the embolization, was excruciating, requiring Fentanyl twice. After the embolization the pain rapidly lessened until I was just on Tylenol after three days. What I finally figured out for myself after having anothe dye angiogram, was that I was having sciatic nerve pain which was affecting how i walked and also causing the pain in the groin.
I too am still pretty numb from the waist down, especially the buttocks and saddle area. The sensations I do have vary considerably. Mostly my lower legs feel tight, my feet are always frozen and the worst symptom of nerve damage are the strong spasms in my feet which have caused me to fall and break bones. Now that i know what is causing the falls, I’m going back to my private physiotherapist. The neurologist recommended 4 x weekly physiotherapy at the hospital but I was let go from their program as I don’t fit their criteria. I’ve had five hospital physio sessions in 6 months. I exercise at home, Especially my feet and I use a vibrating foot massager to stimulate my circulation which is quite poor and my foot and ankle are constantly swollen. I have been told not to expect much improvement but I choose not to believe it. I’m walking a little without support. i found that using a cane was exhausting. I do much better with a set of walking poles which I bought cheaply. I hope that this info will be helpful. To me, my mental attitude is what will heal me. I affirm daily that I am strong and walk in perfect balance. it’s working for me and I’ll be driving very soon. All the best to everyone.


#24

Hi Elisabeth
You’re right that attitude helps in recovering ,but it’s not easy to be positive for me all the time …I do exercise at hone every day to stretch my muscles from stiffness .it helps for a short time ,than stiffness reappear again .
It’s been 4 months since my surgery and my pain and numbness still the same .i am walking with a cane ,but I need to stop after 8 steps to rest and start over to be sure that my spasm is gone .i don’t think I am improving , that some days I feel that I am worst than before .i do have numbness and pain in my feet as well my back .i tried few medications but they didn’t work for my spasm or stiffness much ,and I felt mentally not there ,so the doctor agree to stop them .this avm thing is a nightmare fir me as it affect many aspect of the body .
Good luck ,all the best


#25

Hi George, I was told that it takes time to heal nerve damage. Up to 2 years as nerves regenerate slowly, if at all. From what I’ve read online, little is known about AVM/AVFs. That is both the good news and the bad. Bad because, in my case, I’ve had to do almost all of my own research. Good, because if little is known, we can keep hoping for a positive outcome.
I have faith in my recovery. I use positive self-talk every day. 10 days ago I started affirming that I am walking strongly and steadily and that I am always in good balance. 10 days ago I was using a walker. Today, I went shopping with a friend and left the walker at home. I leaned on my friend’s shoulder to get into the store and then we went our separate ways. I do feel tired but good too. At the same time, I’ll avoid the stores on the leadup to the holidays as I’d be concerned that I may be jostled by the crowds. All the very best to you. Keep the faith. { I don’t mean that in any religious sense }.


#26

Hi Elisabeth
I feel wizness in your words and peace .i was told too that it takes up to two years for the nerves to heal ,but in my case after my two surgeries that I had , I still don’t feel any improvement over times , but contrary I feel more spasms and stiffness,and only time can tell .
I am happy for you that you were able to walk to the shopping center with no walker .also You are right ,I will keep faith in my improvement ,and change my attitude .
Thank you for your reply and hope having good news from you in the near futur .


#27

Hi George,
It was just suggested to me by my physiotherapist to keep using the walker outside of my home so that, should I need support, it will be there. I do not want to fall and break any more bones.
I still have a lot of stiffness in my legs and feet but I noticed that I can bend and flex my feet. So the stiffness is a sensation only. The spasms are getting fewer as I exercise more. If I’m sitting, i take off my shoes and flex my toes endlessly. I also do " windshield wiper movements with my whole feet. I massage my feet and use a foot vibrator to improve my circulation. I found that walking with a cane was exhausting. Using two walking poles was much easier.
I drove this weekend and it felt so good. Just 10 minutes from home but I walked for hours around the shopping centre. I was so tired when I got home. I rested next day.
I hope that you too will take joy in the little improvements and stay positive no matter what. I cannot afford to feel sorry for myself or I’ll spiral down into depression. For me, I keep my focus on what I can do rather than on what has changed. Be well, George. Always here for you. Lyla


#28

PS. I forgot to mention that my doctor said that the nerve damage will feel worse at times caused by bumping into something, moving awkwardly, any number of reasons. She also told me to stretch as much as possible. Cheers.


#29

Good day Elisabeth ,
You’re right about safety,by using the appropriate aid for each of us .Yes Doctors and Physios promote the safety,we can’t afford any risk of falling .and by having the walker with you if needed ,will make you feel secure if needed.in my case ,I don’t walk long distances ,for that reason I still use a cane .
I still feel that since my surgery in July ,the stiffness increased and affected my movements .i do stretching exercises every day for about one hour and I feel so good after ,but during the day stiffness catch me fast again .from what I understood from my neurosurgeon ,is that stiffness is the result of week signal between the brain and the legs due to a spine nerve damage from the AVM.hopefully nerves can heel with time .
You’re right about driving ,I do feel freedom and kind of independence Every time I drive and so joyful and full of energy .the worst thing is to stay home.but as you said it takes a lot of effort for every move .and about feeling worse due to nerve damage over time ,I was told to stretch the muscles to compensate the weekness and strengthening the muscles .its something that should be done as long the spine nerve damage is not healed .so physic and exercise in our case is a tool to help us overcoming the result of Avm but not a healing tool.our only hope is in the nerve healing .
I feel also behind your words ,a nice down to earth person .keep doing your exercises and enjoying life ,and I will do the same :wink: .Keep in touch ,and hope things will go better over time Elisabeth .
Tackle care


#30

ChrisD - Under the “my neuro surgeon said different then yours” category like we’re still in kindergarten, I would love to have 18 to 24 months (I’m at exactly month 10 today.) Mine said the absolute best you can realistically hope for is an inch a year. So if a certain nerve has to go down from the base of my brain down to my vocal cords and back up, that’s probably what 3 inches? So we’re talking 6 years? And a Merry Christmas to all…

I guess it’s a call to work around it rather than wait for it to heal.
TJ


#31

Hi TJ ,I don’t know what to say ,beside that my neurosurgeon or my neurologist when I see them are so descreet and not so optimist .in the same time ,they think that due to my AVm , my spine was damaged and it’s a progressive damage ,question of time even so if my Avm was removed .in the same time they never been able to see or to confirm where the damage is in my spine .i think they don’t know what’s the futur reserve ,that’s why they stick to the fact that overt time they sees me ,I am a bit worse .wish u the best .


#32

G3, Mine have never said that it has damaged my spine but that the proximity to my spine has made parts of the AVM too risky to treat. What does that mean? Until 2018, it meant I lived with a bit more aches and pains in neck, back and left shoulder and arm. This year, it’s whole different ball game…


#33

Good day TJ
In my case also Doctors were not able to see any damage as I said ,but like you ,due to the proximity of the Avm to the spine ,and due to time (7 years) between the appearing gradually of my symptoms and my Avm surgeries ,time had play against me and damage some nerves somewhere for sure ,and we can confirm that by my symptoms .again they are not able to see any spine damage or any thing else beside the avm that were removed or clipped …but what worried me ,is that since my first surgery ,I feel I am getting worse and not better …my next checking with my neurosurgeon is in February .will see .and yes as you said ,sometimes they prefer not touching the avm if they are two close to the spine .take care