Hello, my name is Craig and about 3.5 years ago I was diagnosed with an AVM in the spinal chord. The impacts today that I still suffer from is numbness in both legs from knees down, foot drop in the left side, and extensive pain in my perineum area. It feels as though I am sitting on a golf ball. Driving has become so difficult with the pain. I currently take gralise and medicinal gummies but pain is still unbearable at times. Additionally, I have gone to a pelvic floor therapist and nothing helped. Has anyone had similar issues and if so what seemed to work for your pain in the perineum region. I can bear the pain and numbness in my feet. This has also impacted my bladder and I must intermittent cath when going to the RR. Any help would be great.
Hey Craig, welcome to our group. I hope you will gain some valuable information that may be of assistance. I am a brain guy so can;t be of much assistance, we do have a @Spinal group. Hopefully some folks there will be able to pass along some of their experiences. Take Care, John
Hi Craig: I fully understand what you’re feeling! I had a Spinal Dural arteriovenous malformation in 2016 - T-9 to T12 - it was tightly wrapped around my spinal cord - I had surgery in 2016 and I’m blessed to be walking. I was in a wheelchair before surgery and my legs just stopped working, and I was in so much pain. I went to doctor after doctor to be dismissed as seeking drugs - never asked for drugs, I wanted to know what was wrong. At any rate, I moved and got a new knee doctor and he said he wanted to look at the cause other than knees - wow, he found it! I’m still in a lot of pain some days but I walk, jump on stage to do clowning, (my new hobby) and I rest. I’m curious as to what point you’re at - have you had surgery? Can the operate? Do you walk? It’s a very serious situation and needs treatment but sometimes things move slow. Please tell me more about what is happening? Vickie
Hi Craig,
I also had an AVM in my spinal cord and have similar residual symptoms. I feel like my am sitting on two golfballs, one in each butt cheek. Its more painful on my right side. My right side has drop foot sometimes and i have numbness on both legs from my hips down. I dont have to cath anymore. I take baclofen for muscle stiffness and spasms which i have in my right leg. I take gabapentin for nerve pain. I supplement with arthritus strength tylenol and occasionally ibuprofen. I did pelvic floor therapy and purchased the internal stimulator that exercises my pelvic floor. I used this with my PT and now do it on my own at home. A lacross ball massage might help you? My pelvic stiffness is helped mostly with the baclofen and stim. When i am consistent with my PT exercises i feel better, but its hard to stick with a routine.
Vikki,
Yes I had surgery in 2019 and have had my symptoms since. I train everyday recumbent bike, and exercises for my lower body and left leg. Two times a week I work with a trainer on balance and core weight exercises. I play golf too. I have tried pelvic floor, stem etc. I am about to try some deep tissue massage in the hip region. I do take gralise and medicinal gummies and they mask the pain but still crazy pain. Thank you for your feedback
Thank you for the information. It is all good information for sure. I have done pelvic floor, stem and train daily on a recumbent bike and work on core exercises with weights twice weekly. I try to keep myself moving. I am about to go to a deep tissue massage guy that is supposed to be really good for flexibility etc. I need that for my hips.
I get the crazy pain too - somedays, it kills me! Sounds like you’re keeping busy with really positive things to strengthen your muscles. I credit my ability to move around to walking 10 miles a day for the first four years after surgery. I would fall and come home all banged up but I had a husky that loved to walk - when I fell, he would tell me to get up and get moving - he has since passed away but without him pushing me, I would not have made it. Currently, I’m struggling with increased pain in my legs, groin, feet, hands, and butt. It helps to lay down but the nerve pain is killing me. No easy answers. In Georgia, the state to legalized cannabis for medical - I’d like to try gummies actually - do you think it helps with nerve pain? I try to stay away from most medications - either bad reactions or does not work. I do take Tizanidine which as helped me a lot. I’m also working with a trainer to help strengthen my muscles. It’s good to hear from you - it’s something that changes our lives and we have to get a new normal. Vickie
The gummies are ok. I use them at night and they seem to help me sleep. Do not know how much they help with nerves. The dosage is very low bc of texas law. You can almost buy the same strength over the counter.
Hello Craig I to have a AVM thoracic spinal it’s unoxegnated blood seeking, plus 2 prolapsed disc got my AVM through blunt trauma as a result of cycling accident
I have had no surgery {I’m in the UK) I’ve had it for 11 years you might want to listen to Barbra O’Neil, Dr Burg, on you tube, certain foods will affect your condition, elevate your feet when sleeping, rest up during the day (bed) don’t over eat, take vitamins, eat the foods that are anti oxidant do you get burning in your feet?
I have trouble bowl and bladder it can be quite lonely with this condition did you have the Covid vaccination, I did not I take extra vitamin D, magnesium, ect
Hope this helps
Ed
Craig, I have avm’s wrapped around my spine from mid chest down, in bladder, colon, rectum, tailbone and other location’s. Foot drop in right side and have had 2 surgeries and 2 sclerotherapy treatments in my right glut area. Mine are like vines and when there either cut out or treated via sclerotherapy they grow back in a different direction. Because of the one’s in my colon and rectum for some reason I have rectal bleeding with many medications…even gabapentin which helped with the nerve pain caused rectal bleeding as have many other medications. The only medication that helps with the pain are opiods…I’m 63 and started having surgeries at 18. I was blessed to be able to work until the pain and nerve damage to my legs required to strong of medication to safely work in the industry I was in. So called pain management Dr’s which in my area are a joke because they have no clue about my condition do not want to treat long-term patients because their afraid of being audited and having to open up their books.Im fortunate to have close friends that are in high levels of law enforcement, DEA, District Attorneys, police chiefs etc and all of them have said with my rare condition and all the documentation I have there’s no way they would threaten a Dr’s license…basically they just don’t want to put in the effort if they were questioned. I was basically forced to go on home hospice for strictly pain management which has had it’s obstacles. No Dr’s will do procedures anymore because of the risk so I’m stuck on opiods and get minimal relief and have not gotten more than 3 to 4 hrs of sleep a night in spurts over the last 10 yrs+. I have 2 great hospice nurse’s but the Dr uses the same excuse the pain management Dr’s do, he’s not risking his license. I have 1 get away a year to have some fun and in order to do that I have to suffer an not take all my daily medication and save up some extras leading up to my trip. So my daily life is trying to be active in 2 hr or so spurts and lay down for 3 to 4 hrs then go again and I’m done by 7 pm. I just don’t understand why those of us with these rare conditions are not treated the same as those with more common conditions. Sorry for the rant just frustrated at the moment knowing so many people suffer needlessly. Good luck to us all and keep fighting.