Hi---I'm new to the board. In brief I have an AVM removed from t7-79 this past january. It was an old AVM that was no longer bleeding...my neurosurgeon believed it had been there for years. My question is has anyone else had a thoracic AVM removed that has caused radicular pain before and after surgery? I have an extreme hypersensitivity that makes it hard to wear certain clothing, fabrics, stand outside on a windy day, shower, etc. I'm looking for others with such pain? Any suggestions on how to alleviate if so? Many thanks and I look forward to sharing with others.
My symptoms are very similar. My AVM is t9-11. I haven't had surgery yet, but planning to in the fall. They attempted an embolization in March, but were unsuccessful. I would not usually consider mine pain (except for my feet), but very hypersensitive to my legs and feet. The cold is the worst for me. I ride a bicycle and dread getting on, but the exercise makes me feel much better.
My AVM was at T9, removed 6 months ago, and I have similar hypersensitivity in my left foot. It's actually somewhat alright with socks on, but taking a shower can be harsh sometimes. Wouldn't it call it pain though, more a very strange feeling! There is also some other "spots" on my body, like thighs and crotch that has this weird, similar hypersensitivty from time to time, making it very uncomfortable to wear too tight pants for an example. But it haven't been a big issue for me yet. This is all something that started after surgery, didn't have any similar sensitivty issues before. But sorry, no real suggestions here, I just try to think that it will eventually be better.
Here too: No suggestions but only: Time will show/help. Have, since embos and 2 surgeries now NO feeling in my right leg (numb). But shower with cold water in my back makes me falling to floor: its so much pain that my legs are "away". Time will help!
Hi MTV,
I have had this pain/feeling in my right leg and right thigh for years. The first medication they prescribed for this was Lyrica. It helped but not sure if it does much anymore. When it is so bad I can't sleep I rub Zostrix on the foot and thigh areas, this is an arthritis medication. It has capsaison that numbs the pain/feeling. It is a hot pepper derivative.
I have also tried numbing it by way of Hip injections. A pain specialist inserts a needle under xray into my back/hip and freezes the area. It lasted days with great relief but wore off quickly.
Good luck.
Len.
Hello I am new to this board too.
I have an AVM T6 - T7. I had open sure very in Dec and now left with pain which I believe is nerve pain, all around my ribs and back. I am currently trying different drugs prescribed by my surgeon to find a good balance to get rid of the pain.
Thank you to everyone for the responses. It is nice to know I'm not alone! Stephanie--what drugs have you tried and what has been successful? I am currently on Gralise (a slow-release neurontin) and valium as needed to sleep. I tried cymbalta but I didn't do well on it. some days are better than others, as the gralise doesn't take it away completely. Where did you have your surgery? How are you feeling now? I am hopeful for you as you are so recently out...
Thank you Len--I will try Zostrix. Nice that the injections worked for you, if only temporarily. I need have hypersensitivity in my feet, but not like my chest/ribs (which can be unbearable). Where was your AVM?
Hi, same here. C4/5 AVM.
After the surgery I have had lots of hypersensitivity like you, outside, cold, wind etc makes it worse. Keeping warm definitely helps.
As for the radicular pain, I have severe pain in my left arm and hand from immediately after the surgery. Tried Gabapentin, PreGabalin (Lyrica) etc., Lyrica really worked for the pain but knocked me out. I found acupuncture and desensitisation exercises from physio's the main benefit along with keeping warm.
I've also been assessed with regards to spinal stimulators being fitted but as they will have to reopen and expose the cord to fit these I'm putting it off as long as I can due to the further risk to the cord and my already reduced level of function.
All the best :)
I haven’t heard of that drug - I am currently on pregabilin and diclofenic tablets, still have pain all around my ribs. I have good days and bad days. I had my surgery done at The London Clinic.
thank you for your response. I am curious--what was your surgery like? I feel like a little bit of an outsider on this board, as i think my surgery was different than others? But I like sharing about recovery and symptoms because those seem to overlap. I had what they thought was a cancerous tumor inside my cord at T7-T9. They opened up my cord and removed 80% of what they now know was an old AVM. They theorize it could have been there for many years slowly causing symptoms. Just curious if anyone else has had that surgical experience.
Surgery was long, 9 and three quarter hours I believe. I went in at 8am and the next I was aware of was 10pm in HDU. To be honest I couldn't see which I had been warned about due to the surgical positioning and was only really aware of being turned and offered a morphine injection. I was very, very cold and really shivering till they got me warmed up, then I just woke again in the morning.
All seemed well really till they tried to wash and dress me, as soon as they moved my left arm to put it into my PJ's top I got severe pain and spasm. The spasm has gone over a period of 9 months although I can twitch a lot but the pain has been constant to this day.
When I was first sat I passed out and broke my wrist in my remaining good limb. I had to have 4 physio's etc to walk initially. Still use a stick out doors.
My lasting memory of it all was that I felt like I'd be run over by a bus followed by the whole depot including the building. I am still very tired and exhausted by everything at 3 years plus.
My idea day is get up at 9am ish, have breakfast, get showered and dressed between 11:30 and 12, potter about a bit and then think about starting the day or leaving the house about 2ish. Sadly I have to drag myself to work by 8am so only do 2 days and then have a break before doing the next 2. I can get by on that as long as I don't do too much more beyond it.
How's things for you? :)
Hello I had open surgery in dec. I am still recovering, I still get very tired and have a lot pain all around my ribs. My AVM is located at T6 / T7. I am now looking at further embolisation in the next 10 days. What’s your next plan for your treatment?
I had my AVM (T6) removed in 2008, but ever since then I have had hypersensitivity/pain from my waist to my toes. Windy cold days are the worst. I wear loose pants but enjoy showers--warm water doesn't bother me. I tried Neurontin and Lyrica for a while but didn't see results and didn't like the way I felt on drugs. My neurologist suggested implanting a pump in my spine to release micro doses of morphine but this didn't appeal to me for various reasons. I walk whenever I can to stay in shape, but walking hurts very much, and I don't exercise as much as I should. I wish I could say my condition has improved in six years, but it hasn't. They say nerves regenerate, albeit slowly, but I've seen no evidence of this. I just try to get by day by day. I'm thinking of moving south to warmer weather. I don't want to face another cold winter up north. I wish I had an optimistic story to tell, but all I can say is that we're alive, and that is good.
I am also new here and am so glad I found this post!!! I had AVM on T12 removed in June. It is warm here now, but if the slightest bit if cold air hits my legs I get severe pain. I’m taking nuerotin and it seems to help, but not completely. I’m just glad I’m not crazy. Thanks for the pointers and I am dreading wintertime 