Hi all,
I know a lot of people on here have had experiencesof AVMs on the brain, has anyone else had experiences of AVMs on the spine??
Thanks
Rachel x
Hi, Rachel
I have a spinal AVM. It is located within the spinal cord itself between C1-C2, which is right at the base of the brain. I’ve had no treatment.
Kim
Hi Rachel,
I have spinal avm inside and outside the spinal cord from c2 base of skull to t2. The pain is constant, never goes away. I had spinal resection in January 1999 but surgeons could not remove the entire avm.
JR
Hi JR,
Yes, the pain. It has been my constant companion since 1988. It got considerably worse in 2000, when I had my last and most recent and most severe bleed. Huh, it’s been 9 years now since I’ve had a bleed. Or at least a bleed that has landed me in an ER trying to explain to some new ER doctor what’s wrong with me and getting that look. You know the look don’t you? It’s the one where they are thinking you’re a drug seeker, at least until you vomit all over the ER room and then lose conciousness. Anyhow, this is the longest I’ve gone without one. I don’t have any magic words of wisdom for dealing with the pain as I just take it on a day-by-day basis. Some days I’m not a very nice person. Just keep your head up, or down, which ever way it eases the pain the most and sleep as much as you can. That has been my only escape, sleep.
Kim
Hi Rachel, this is Jennifer. I also have 2 avms in my spinal cord. one inside is connected to the one on the outside. I had a blood clot removed and 2 of the 4 feeders of my avm. I have steel.(spelling?)phanomana. I have my at T-5 to t-7. I hae horrible pain and after many many different pain meds I finally found one that helps more. It is call Ultram or tramadol for generic. Also I take neurontion. It helps with the stinging. My rib at T-7 was removed…under breast. it sucks cause I would like to be able to wear a bra!!!I am now in Vegas and need a doctor with some experience.
Hi Rachel,
Yes I have a spinal AVM. In my lower back betwee L4 and L5. I’ve had treatments and I will always be in constant pain. It’s intertwined with nerves that lead down to both my legs, outside of the spinal cord. I was diagnosed last year and it seems to not be getting better.
My Vascular specialst and myself are working together to make the pain ‘tolerable’. Which I don’t think it ever will be. I’ve been super glued shut and injections, but it will always be there. I have to be careful for the rest of my life, if I’m hit the wrong way, I’m crippled for life.
I’m 29 years old and according to my doctors, my type of AVM is very unique and rare at the same time. It’s hard to explain really. I hope this answers your question.
I have two avms in my spinal cord and had a major stroke 10 yrs ago in dec. they said I would not live that long…boy I proved them wrong!!anyway my is at T5 thru T7. 1 rib removed under right breast which sucks if you want to wear a freakn bra!!anyway talk to you soon!!
Jen
spinal avm stroke survivor
hi thanks for all the messages. my son nicky-lee is 15 and suffered a spinal avm last january when he was almost 14. his was his T12 L1. He has continued to improve after having it embolized. he had his annual mri scan in January and gets the results on 23 of march which fingers crossed we are praying will be good news. he still uses crutches to get around. im on facebook if anyone wants to add me it would be great to chat. love to you all
x
Hiya
I have one at the base of the brain going down into the C4 Level of the spinal cord - feel free to contact me if you want to chat
Lisa
Hi Rachel
I have been diagnosed with Type II intradural spinal AVM in the T7 area inside my spinal cord. I am currently looking into options of treatment as I have been suffering from persistent neuralgia on my left flank in the abdominal section as of January 21st this year.
So far I’ve had a few thorough MRIs and a spinal angiogram done to confirm the specifics of the AVM.
The doctors have said that the less invasive options available - embolization and radiation are not viable as the risk is too high. The AVM moves when I breath and it is located inside my spinal cord.
The options I have available are microsurgery, cyberknife or waiting to see what happens.I not very keen on microsurgery, as it is too invasive and it feels to risky as this point. I am chasing up options for cyberknife now. It is difficult to wait as I taking medication for constant pain, both of which is are constraints to leading life normally or pre-AVM health.
hi rachel i had an avm on the spine in 2003 i had an opp to remove it
if you like to write back we'll take about it ron
HI RACHEL im ron from north wales united kingdom
iv had an avm on the spine
AVF T4 fixed in mar 2005
Intramedullary AVM and aneurysm from C-7 to T-2. AVM bleed in 2002. Both embolized in 2004, ‘obliterating’ the AVM. September 2010 - AVM has grown back.
My 13 month old had an AVM from C2 the C7. She is paralized her her hands and legs. When we went and got an angiogram 1 month later the said the AVM was removed. We have to go back and get another angiogram in a year. The AVM started hemoroging into her spinal cord leaving blood clots.
Before I was diagnosed with my brain avm, my doc and I were searching desperately for the cause of chronic neck and back pain. Well, at first, a radiologist found a hemangioma on my spine. So, my doc sent me to a neurologist for an mri and she found nothing. I called my doctor like, wow,you had me horrified! He apologized and we went on with more testing, and here we found the brain avm. While at the discussion of the gamma knife surgery - I had the new neurosurgeons look at my mri's (these were not one's w/contrast) that the one neuro had done to check for the hemangioma, and they said there wasn't one there. Howevere, I am still in constant, chronic neck and back pain and my avm is not causing this. My neuro's are convinced of that. So, now - I'm beginning to wonder if I had an mri w/contrast, tha maybe this radiologist may have been right in the first place. But I'm also afraid to find out because I really do not know how much more of this I can take. I would really like to know. I think when I go for my follow up mri I'm going to ask to have my neck and back scanned also. What symptoms do you all have? I feel like I have fibromyagia or thyroid. That's the best way I can explain it. Constant, dull ache, Knives coming out of my back. Bee stings all over. Severe cold intolerance. Forget about exercise to it.
JUST TO LET YOU KNOW I HAD A BRAIN AVM AND WAS HAVING SOME R & R IN RED BLUFF CALF . AT A RED BLUFF H.S. BASKETBALL GAME MET A NURSE WHO ASKED ME WHAT WAS WRONG WITH ME.I SAID THAT I HAD HAD AN AVM. she said oh cranial or spinal? FROM THAT CHAT SHORT CHATSHE GAVE THE IMPRESSION SPINAL AVM IS QUITE COMMON.HAVE A GREAT DAY.
DPC
Hi all,
I am from Singapore. I am diagnosed with spinal avm, type 2 at T10. I have seen many neurosurgeons and read many medical journals after being diagnosed. Finally, I found a good neurosurgeon to remove my avm. I’m 3 weeks post op now. Experiencing weakness and numbness in right leg. However, I am glad that I am able to walk just that abit slow. Hope to improve with Physio.
I will be doing 6mths post op MRI/angiogram to confirm avm is completely remove. Wish me luck!
Hi Nazneen. I read your history. My husband has a similiar avm, can you tell me a little more about what happened to you. Thanks a lot. Cris.