My neuro thought I had a spinal avm, but I met with a neurosurgean in Springfield, MA, yesterday, who said it is a thoracic spinal cord cavernous malformation that is too deep to operate on. It is causing weakness and numbness in my legs. I can barely walk anymore, having had weird symptoms for years. The Dr said basically I have to live with the idea it could bleed any time and leave me paralyzed. Does anyone here have a CM? I have weakness in my arms too, syncope and severe headaches, but the surgeon said these are unrelated to the CM. Does anyone have experience CMS, or with any doctors who deal with spinal CMs? Patti in another group suggested Dr. Olgivy. I am in Mass. Thank you!
...too deep to operate upon?
I had Cyberknife stereotactic radiosurgery that was completely uninvasive to 2 sub dura AVM lesions that were inaccessible by open surgery or angiogram.
Perhaps you might research this type of therapy for your situation?
I had my treatment in London at www.thecyberknifecentre.com
good luck!
wozza
K, I have met and interacted with several people with spinal cavernous angiomas that are too far or deep into the cord to treat.
Have you ever heard of the organization called Angioma Alliance? They are awesome and I know you could find a huge amount of information and support there. This is their website http://www.angiomaalliance.com/ , and they're also on Facebook.
For the first 4 years after my spinal cord AVM ruptured I had a misdiagnosis of cavernous angioma and being active on the forum of Angioma Alliance not only helped me come into contact with others who have/had them on or in their spinal cords, but was also what led me to finally finding a neurosurgeon who gave me the correct diagnosis of spinal cord AVM and aneurysm and was able to offer me a treatment option.
I hope you'll visit their website - I know you'll find a lot of support there, and also, hopefully, some information from the members there that will lead you to the help you need.
Bestest,
Tori
Thank you, Tori! I went to see Dr. Ogilvy in Boston, at Beth Israel, and he said he would operate if my symptoms get worse. But he agreed that it is very deep and dangerous to operate on. He said it looks like there has been a bleed fairly recently, and wants to check again in six months with a new MRI.
It's funny that you mentioned the misdiagnosis, as I have had a nagging feeling it may not be only a cavernous malformation, or something else altogether, and my intuition has served me fairly well over the long years without a diagnosis. I am wondering if the superior MRI at Beth Israel might be more revealing as to the actual nature of this thing.
Another development is that my rheumatologist thinks I might have Ehlers-Danlos syndrome with a vascular component. No one seems to know much about this, but I have started to try to see if there might be a connection.
Thank you for the referral. I have looked at that website and am planning to spend more time on it.
So then Dr. Ogilvy agreed with the first doctor that what you have is a cavernous angioma? Well, as I said, a person can go to several doctors, as I did, who all see the same thing, and if it turns out what you have isn't a CA, of course it doesn't mean those doctors were incompetent, but just maybe that, like with me, you might happen upon that one doctor somewhere that sees something the others didn't, and maybe just because s/he has more experience and expertise than the others with certain malformations or similar conditions.
I understand how concerned or uneasy it can feel to know that, whatever it is, it's deep, too dangerous to touch, and could possibly bleed again. In my opinion, I think you just have to go with your instincts, and if you feel like you need to keep asking doctors to look at your images, even if it seems nuts to anyone else, it's alright to seek opinions until you feel they're probably all correct with having the same diagnosis, or that you've found someone who does see something no one else has. I think, like me, you'll know.
Oh, as if whatever is in your spinal cord isn't enough to deal with and be concerned about, I'm really sorry to hear that Ehlers-Danlos might be a part of the mix. A few times on some other non-health related forums a few people mention having that and they had talked some about it, but I don't know anything about that. But I think your questioning whether the CA and that, or whatever may be in your spinal cord, are related is definitely a good idea to find out about. Like you said, sometimes it seem like no one really knows if one thing can be related to another, or whether something we do (using herbal supplements comes to mind, etc.) might affect the conditions. Fortunately the Angioma Alliance has made huge strides in helping to further research into CA, and I think people with that condition have more information than those of us who have these in our spines or extremities or faces.
There's a Ehlers-Danlos Syndrome group here at Ben's Friends (it's listed to the right of this page).
I'll be rooting for you that you find answers to your questions and are able to get to a point soon where you feel confident you have a correct diagnosis at least. I hope the Beth Israel MRI will shed some light on this that wasn't visible before. Knowing what's really going - being armed with information, and the correct information (diagnosis) can make a big difference in possibly finding a treatment, or at least just knowing exactly what it is you're dealing with can help you figure out and reconcile your thoughts and feelings about being able to live with whatever the outcome is.
I hope you'll let us know if you find out about whether there may be some connection about CA and Ehlers-Danlos, or if someone does see something else no one else has.
You're welcome, and take care. :-)
Dear K, I wish you all the best in finding help that will fix you up! I had a spinal cord AVM that burst and bled into my brain a few years ago at T4 andT5.My family got a similar prediction that I could be paralyzed. My surgeon Kirk Jobe, in St. Petersburg, Florida, boldly repaired my bleed. After three years I am clear and all functions are go! Perhaps you could send him your information and he can give you another opinion. The man is a genius! I was in hospital 43 days and was given last rites. He fixed me up! Good luck to you! Donna