Hi - I am new to the group. I am 37 years old. I suddenly experienced severe back pain and numbness/tingling in my legs and feet. MRI two days later revealed spinal cord inflammation and a spinal cord stroke in the T5-T8 region. After numerous tests and rule-outs, a spinal angiogram revealed an arteriovenous fistula in the thoracic region. Because of its location, embolization was not an option. I underwent spinal surgery on Sept 21 (just 12 days after symptom onset). My surgery was “successful” from what the surgeons have said. Numbness and tingling remains from my waist down with some left side weakness. Just curious about similar experiences from other members.
Hi: i had same surgery in the L! L2 region. They cut off 2 pieces of bones off my spine in order to be able to get inside and fix the veins. That was 2 years ago. Before the operation the surgeon told me i had only 30% chance of walking again... Now i use a can cause my balance is not great and some weakness in legs. I also have numbness from waist down to toes. Some pain but bearable and burning sensations . I just feel lucky i can walk. Let me know how you are getting along and if you have questions , i'll be happy to answer. Richard
Thanks so much for your reply, Richard. Glad to hear that you are able to walk. I also feel lucky that I can still walk. My balance is a little off and my weakness makes things difficult, but I am starting physical therapy today. I am hopeful that it will help. Have you had any further issues in the past two years? My biggest fear is that another fistula will form. Trying to focus on the positive as much as possible.
Hi again. Im from canada, can i have your first name and the country you live. I was in hospital for a total of 5 weeks and 2 of those were for therapy. I had a catheter for 2 weeks and after i had to catheter at least once a day for about 6 months. Now i am catheter free and my bowels work pretty good , sometimes i need to help that along . I continued therapy for months and now i just go swimming 3 times a week. NOt sure if therapy helped but swimming and whirlpool seem to relax my stiff muscles. The more i walk or excercise the more the next day i have pain and stiffness. Let me know how it works out for you. I am glad also to finally meet someone with the same problem as me. Maybe we can learn from each other on how to cope with this better. Pls keep in touch... Richard..
Hi TLH. I'm also new to the group. I joined to hear about other's experiences with spinal AVFs. My mother-in-law had surgery for one about 4 years ago. Your experience sounds similar to hers, except that she had embolization. She had one spinal dural AVF, but I don't recall the region of the spine (I'll have to look it up in her medical records). Unfortunately, it took a very long time to get an initial, correct diagnosis and so she had irreversible damage by the time she was operated on. It sounds like you got great medical care if you had surgery 12 days after symptom onset. I'd be interested in hearing about what kind of spinal surgery you had. Today, my mother-in-law suffers from numbness and pain in her legs and a lot of pain. The doctor explained that this is due to "edema" or swelling she had in the area of the AVF. Did your surgeon indicate whether your numbness and tingling might subside after a while? I wish you a speedy recovery!! Be well. Rachel
Hi Richard,
My name is Tara and I live in the U.S. I have gone to PT twice this week and so far so good. The exercises seem to be appropriate for trying to increase my leg strength. Still limited due to the restrictions I have from my surgery for the next few weeks. Hope you are well.
Tara
Hi Rachel,
So glad to read your reply. This condition is so rare, so it is nice to hear from people who have shared experiences. My medical care was amazing. The team at the hospital sEarched high and low to determine the cause of my symptoms. After 4 days in the hospital and after numerous autoimmune disorder tests came back negative, they ordered a spinal angiogram that finally revealed the AVF. Embolization was not ever an option due to the location. From my understanding my AVF was too close to a major artery. I had open back surgery to “clip” the AVF connection. The hope is that the inflammation around my spinal cord will reduce over the next few weeks and months. The reduced inflammation and PT hopefully “may” help my symptoms. The doctors tend to be vague and uncomfortable discussing the effect on my symptoms. I assume because everyone’s recovery is so different. I am sorry to hear your mom still has pain as well as numbness. I feel very lucky to have been diagnosed so quickly. Trying to focus on surgery recovery now (lots of pain in my upper back). If you don’t mind me asking, in what part of the country is your mom?
Tara
Hi Tara.. I'm happy I finally have someone who has similar AVm as me. YOu are younger, me being 70, so probably you can regain strength faster than me. I would like to keep in touch with you to compare how we feel and heal. It give me courage to carry on when I know someone else has this problem and we can talk about it., We might be able to help each other , even if only mentally.
Take care .
Richard
hi RDY: I also had surgery in my L1 L2 region . It all started as I got weaker doing my daily walks etc.. . I went to chyro. , theray, osteotheray. I then made an appt. to see a neurosurgeon and got an appt. but it was only in 1 year Finally I was walking with crutches and one day my legs just gave in...... I went to hospital and after MRI and angiogram they operated on me the next day... Now I can walk but with help of cane cause of bad balance and numbness and some bearable pain... Operation was 2 years ago and i'm still hoping for full recovery. Hope to hear more from you about your mother in law,.. oh i'm 70 yrs old now. Take care ,,,,,, Richard
Hi Tara. It really does sound like you got excellent care. You are very fortunate. My mother-in-law had 2 spinal taps performed initially, because the doctors were sure that she had a spinal tumor, but couldn't perform a biopsy because of the proximity to the spine. They originally wanted to send her home and just wait to see if any clinical symptoms appeared. I cringe when I think about what would have happened to her, had we followed their advice. We had the bad luck of going to a bad hospital at first. Once we switched her hospitals, she got very good care, very quickly. Before her surgery, my mother-in-law was in a wheel chair, pretty much unable to walk and had terrible trembling in one leg. Today, she walks unassisted, up to a kilometer or two at a time, which is quite good, but still a far stretch from what she used to be able to do. Yes, the doctor's usually won't comment on recovery, as you point out, since it's so individual. They can't really be sure how much of the inflammation around the spine will go down, which is really a very important factor. Hope you continue to have a speedy recovery. I'm sure it will get better! Be strong! (To answer your question, we live in Israel, though I'm originally from Canada.)
Hi Richard. The onset of your symptoms sound similar to that of my mother-in-law's. She was very active physically and then her legs started to feel progressively weaker, with numbness. She had so many tests done initially, but no one suspected an AVF. From the reading I've done, it seems quite common for spinal AVFs to be misdiagnosed initially. My mother-in-law is 75 now; had her surgery when she was 71. She went from pretty much being in a wheelchair before surgery to being able to walk unassisted within her first year or so after surgery. Now, she suffers from bad pain and numbness/tingling in her legs. You mentioned that your pain was bearable. Does that mean that you don't take anything? I'm interested in finding out about pain management, since this is my mother-in-law's main problem now. I have noted what you wrote about swimming and whirlpool. Anything else you can suggest? I will post something general to the group soon to ask about pain management. I just need to get more info from my mother-in-law. She had an electronic device surgically implanted about a year ago. It has electrodes, which send pulses to her nerves to help control pain and bladder movements. It's not ideal and so we are looking for alternatives. By the way, you mentioned that you are from Canada. May I ask where you are from? I'm originally from Winnipeg. (Been living in Israel for the past 23 years.) Take care and be well! I look forward to hearing more from you. Rachel
Hi Rachel. I'm from ottawa region. She started the same way as me but the minute i could not walk , i then went in hospital for tests , they wanted me to go back home and wait for a neurosurgeon but i insisted and finally they did an MRI and angiogram and found that veins had caused pressure on my spinal cord. the next day they operated and fixed the problem. After a couple of days i was walking slowly with help. couple of weeks later i was walking with a cane as i am still now. For pain i take Aleve which helps with inflamation but i don't take it regularly .For my bowels i take prune nectar heated in microwave and a hot coffee. It works great. When did her bad pain start? Is she getting weaker in the legs or is it about same?
I also had to have catheters for 6 months but i am doing ok now.
pls let's keep in touch and i will gladly answer any questions. Richar..
Hi Richard. How are you? Doing well, I hope. Sorry for not replying earlier. My daughter's teacher lost her son earlier this week, so it's been a rough week. The bad pain my mother-in-law experiences has been with her since after the operation. It hasn't gotten worse, it's just always there. She has to take some pretty strong pain relievers to get by on a daily basis and she doesn't want to. So we've been looking into alternatives and finally, after a very long wait, got a doctor to prescribe marijuana for medical use. More and more people are exploring this option these days to deal with chronic pain. It helps a bit, but she just started, so we'll have to wait and see. Do answer your question, she does not seem to be getting weaker in the legs. She seems to have "leveled off" (if that's the right expression) and has been at the same point for about 4 years now. Do you use a cane for stability reasons, or more as a walking aid? I ask because we have suggested to my mother-in-law that she use one, if only to help keep her balance. Sometimes, she seems a bit "wobbly" and we're afraid she might fall. Look forward to hearing from you. Rachel
Hi Rachel: My pain is not like your mother in law . After operation the nurses wanted to give me pain killers but i refused them most of the time. I don't like to take them and the doctors and nurses said that i had high tolerance to pain... The pain is always there and some days it is worse. Numbness is always there and some parts of my legs , i don't feel anything. I walk using a cane outside for stability ,, just in case i fall... I am also wobbly , i walk sometimes like i had a few drinks. I am not interested in falling and breaking bones.. Got enough problems as it is . lol... Does she walk everyday and for long distances? Me i walk for 10 minutes and that is my quota. Swimming i can do more because my body is almost weightless in water. Sorry to hear about the son of the teacher. Life is so cruel . Please keep in touch. Richard
Embolization was attempted on my T9-10 AVM, but unsuccessful. They surgically removed it 10/30/13. I understand your quotes around "successful"! Mine is gone and I was told it will never return again and the surgery was "successful". Life is different now. It is much tougher. I wear a leg brace and have quite the limp. I have neuropathy pain in my feet and numbness in my left leg. I fall from time to time. But, I refuse to let IT win! I went back to work. I was lucky because my employer gave me a much less physically demanding job. I was a distant cyclist and am able to ride, but much shorter distances now. I have since began to kayak and I love that! Life is different and I have accepted that. I have a good support system in my husband and grown children. I enjoy life. It will be a different life than I planned, but well worth living! Attitude is an important key to overcoming your likely permanent change. I did improve a BUNCH from my first few weeks after surgery, so keep working at improving. My surgeon told me I could improve for about 18 months. Work very hard at your rehab and God only knows how much your will improve!
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Reply to TLH,
I understand your situation and just wanted to say hello, my issues with spinal cord at T9 is very similar to yours. Hang in and we will get better soon.
Your friend,
Jimmy Camp aka Gwbmusa
Certainly sounds as if I had written your post. I was T9 myself. I found myself as well with a different life style in many ways as prior to the issue. I love playing golf and riding my Harley Davidson motorcycle. That doesn't happen very often in my new life, but I keep going and finding new way to walk and finding new thinks to draw my attention to. Keep the right attitude and all with turn out ok.
Jimmy Camp aka Gwbmusa
Hi Richard, sorry it’s taken so long to get back to you. I haven’t logged into my account for some time. Sounds like our AVM story is very similar. How are now ? My surgery was 2 years ago and still have a lot of nerve pain and weakness and electric shock type feelings. I had a bleed 2 years ago. Would be good to hear from you. Regards Stephanie
Thanks so much for your reply. I hope you are doing well. I am 7 weeks out of surgery. Luckily, I feel like I can deal with the remaining weakness and sensation loss in my legs and abdomen. I just wish the pain from the surgery would start to lessen! Tara