I was diagnosed by my doctor last week with having an AVM in my epidural cavity of my thoracic spine from my T1-T12.
I have read alot about different AVM's since then but very few people have this one. My doctor has said it's the largest on record of this kind and only about 6000 people in the US have been diagnosed with it.
The side effects are a little different for me, it really effects my upper limbs versus my lower. I have chronic nerve pain and 70% diminished grip in my left hand and arm. Of course he recommend surgery but this surgery is life changing, the AVM is so large that he will not be able to take it out in one surgery, it will require 3 surgeries and a 9-12 month recover. It's insane, i can't grasp all the information yet that's coming at me, however I guess the good new is that because of it's size a rarity he is going to be doing all the surgeries for free and return for the medical journal worthiness of it!!! Crazy!!!
I hope someone out there has had this or has heard of IT. and can give me some advice
I was diagnosed by my doctor last week with having an AVM in my epidural cavity of my thoracic spine from my T1-T12.
No, my AVM is spinal, but at c1-c2 at the base of my brain. I wrote simply to be a little bird of warning.
Please make sure you get another opinion before you take up this doctor's offer of free surgery. I obviously do not know who this doctor is but I had a similar experience that I wish I had heeded the little-bird warning that I had received before I went through with an embolization.
Remember, when he offers 'free' surgery he now has a vested interest and is no longer objective. Sounds like the opposite, but it is not. This could now possibly be about affluence and fame things that are born of pride. Again I don't know this doctor or what is in his heart. He may be perfectly honorable. However, ultimately what is in his heart is more important than what is in his hands and technical expertise.
I had one doctor, who was not be involved with my AVM at all, but was privy to what the neurosurgery doctor planned. The first doctor made a strange comment to me about watching out for "cowboy doctors". I think his cryptic warning was to watch out for doctors that want to make a name for themselves and it will ultimately be at YOUR expense.
No matter how the surgeries work out, He's going to 'walk' away unharmed, you may not. So please seek more counsel and I pray you seek God as well. Each of our AVMs are quite unique. Once it starts to be messed with, whatever is left behind tends to get angry and bleed, I think because it has now been tampered with and the blood flow now has been rerouted and the pressure of the blood flow is different, possibly higher than it was, etc. It's a crap shoot.
I hope you're not like I was, I used to put a whole lot of confidence and hope in the doctor's expertise and knowledge. He may know how to diagnose what you have but he cannot predict how it is going to react to being tampered with anymore than he can tell you tomorrow's lottery numbers.
So please, pray about it and find other opinions and talk with your family. Once someone becomes paralyzed everyone's life changes and the stresses can be overwhelming.
I'm not saying to do nothing, I am saying to take great caution. Ultimately, no one can make this decision except you, in prayer with God I hope.
WOW!!! Thank you SO much for your response. I haven't even thought about the "cowboy doctor". At first I didn't think I needed a second opinion, but than my doctor told me I was crazy and told me to get a 2nd and a 3rd opinion if I wanted. There are so many different outcomes from these AVM's it's hard to decifer what will be my outcome after surgery. He's office is also working on puttin gme in touvh with a patient that had a similar AVM, but on a smaller scale, so that I can talk with her about her experience. Oddly enough I found the doctor, from 4 referrals from different clients of mine, all with praises of him saving their lives. where I feel confident in him as a sugeon, I lack confidence in a positive outcome after the surgery.
Did you ever have surgery with yours?
Again thank you so much for your feedback!!
My surgery was brain stem. So my pain was more of a headache. Which that is gone. I have hemiparesis which is a partial paralysis of the left side. I’m glad I pursued surgery. Best wishes
You're correct, you cannot predict what the outcome will be with or without surgery. Since AVMs are rare and unique there is no way to put any type of numerical or other qualifiers on our situation to try and make the decision process easier.
I am a bit heartened to hear that your doctor has recommended that you seek 2nd and 3rd opinions, but again, not to sound to much like a nagging Nellie, by his so doing, it is a subtle way for him to protect, distance and shield himself from the brunt of anything negative that may come from his surgical intervention. If you come out of surgery neurologically diminished or paralyzed, the real-world weight of that will be born by you and whoever you have to support and care for you, not only the physical demands but also the emotional ramifications.
This is solely your decision. Obviously choosing to do nothing is a decision as well and that may also have negative ramifications. I know. I've been there for 27 years.
In 1989, when MRI technology was new, and of course not as great as it is today, they found my AVM. My AVM has always been inoperable seeing that it's location is in the "smallest and most expensive real estate" (two different doctors words) of the body, at the base of my brain, within the spinal cord substance, extending down to C2. That is where everything has to pass from the brain to the body. Not just motor and sensory function but also autonomic functions, like breathing, body temperature control, etc.
Anyhow I had been doing some research, as I tended to sporadically do over the years, and quite awhile ago I found out about the Cyber Knife. Dr. John Adler invented it at Stanford in California. I'm in Illinois. At the time I didn't have, no could I get covered for health insurance, (pre-existing condition) this was back in the 90's. Dr. Stanford had even treated a woman, I think her name was Valerie, whose AVM could have been a twin of mine, as in it was in the same location but larger. He successfully obliterated her AVM and she is 100% cured.
Fast forward to 2011. I was blessed with health insurance and began to search out a hospital with the Cyber Knife. They are much more common these days then back then. I found one close by to where I live and went to see the doctor that was head of the Cyber Knife department. He was an Oncologist though. He immediately, as in as I was there for my initial visit with him, referred me to a Neurointerventional Surgeon that happened to be there that day. We decided to do a complete imaging work-up since I hadn't had one in quite a few years and AVM's can grow and change.
From the new image study he discovered I also had an aneurysm attached to the AVM although it was within the spinal cord, in the cerebral-spinal fluid space I guess, but not within the spinal cord substance itself. Seeing that I had suffered numerous bleeds in the past without suffering any great neurological deficits it was determined that the past bleeds must have originated from the aneurysm and not the AVM.
So, the thinking went, if I have the aneurysm embolized we would then cut down on my chances of another bleed - as long as the AVM remained 'silent' as we assumed it had all these years. As I eluded to earlier, I put my trust in his 'expertise and knowledge' and I assumed that his knowledge led him to believe that would be the case, the AVM would not be afffected.
So in March of 2011 I had the aneurysm embolized along with a coil. In November of 2011 I bled. This time it was the AVM. Apparently the blood flow to the AVM had been altered and it didn't like that. I don't know if the blood pressure increased or what, whatever happened to make it bleed, it was catastrophic. I was tetraplegic for about 5 days then my left side came back, almost normal in strength and movement but with totally messed up sensations and lack of other sensations as well.
My right side, leg, arm and trunk of body were still paralyzed. I was transferred to a rehabilitation hospital and was there for about two weeks. At about day 11 or so, my right leg just simply came back online. Like rebooting a computer. It was the most strangest cognitive event I have ever experienced. All the sudden my brain knew where my right leg was. To me it was quite amazing, a miracle actually. My right arm was still paralyzed though. It took a couple of months of rehab for me to regain some use of my right arm and hand. I do have use of it now but it is spastic, weak and only about 50% normal.
I am one of the fortunate ones, I am walking and talking. That is until, my AVM bleeds again. I call it the time-bomb effect. Living with this time-bomb in my head has been quite a challenge for the past 27 years. Before the AVM bleed in 2011 it was the emotional fear that would seize upon me, what if this time it's the 'big one.' Now after the bleed in 2011 I know just how bad it can be. Even though I was totally paralyzed for those first 5 days, I could still feel the pain throughout my whole body and it was excruciating and I was powerless to do anything about it. If it bleeds again I may not regain the ability to move and be left paralyzed and tormented by pain that I cannot try to relieve by moving into another position. It paralyzes me with fear if I let it.
I'm sorry if I have frightened you, I do not intend to. I have learned to be a person that thinks that the truth needs to be fully disclosed, not softened or muted. Only then can decisions and solutions be sought. If you only have some of the information about something then what ever action you take is based on limited information and your results may be negatively affected.
In Jan.of 2012 he went back in and tried to embolize the AVM where it bled from but it was too small to get to. And then in March of 2012 he went back in with the intention of trying to embolize the entire AVM. On my way to the hospital I was psyching myself up thinking this was it. I was either going to be cured or, well I let you fill in the possibilities of the 'or'.
When I woke from the surgery all I wanted to know was if it was successful. It wasn't, he said he got in and decided not to do anything that it was just too risky. I was livid! WHAT!? That's when you decided it was too risky!? I went through all that emotional agony and mental torture on the way to the hospital, a 90 mile drive one way, and then getting prepped and going into the OR and having another angiogram setup and that is when you decided it was to risky!?
I haven't ever felt that level of degree of anger before or since.
So that is where I am today. It's not just my right arm. I have at least a dozen or so other neurological deficits that I have to deal with everyday. Bladder and bowel issues to name but two. Along with the bowel issues comes syncope, passing out. That is always fun, to be on the toilet trying to have a bowel movement and trying not to lose consciousness at the same time, I rarely win that battle.
Anyways, thanks for reading all this. I hope you can find something here to help.
Your doctor looks to be very qualified
I thought I needed to add something here concerning my statement about the anger I felt.
Like I said, I've never felt like that before or since, however my anger was NOT towards my doctor at all. I knew, or at least I think I know, he did what was right every step of the way. I know it didn't sound like that in my post above. There was no one to be angry at. So that is why I said I've never had that kind of anger before.
Hi Im in uk I have AVM fistula thorasic at T9. I had an accident an impact on my chest from then the symptoms neurological started and have changed but never left in over 8 years I have trouble with my bowels and blader have gone slow or loss of bowel I had violent cramps in my legs more right leg but these have now eased a bit, pain in my groine ,feeling as my knee joints needed oiling , drop foot were I can’t get my foot at right angle some times loss of balance my legs wanting me to just drop no power in them or 1/2 power, legs wanting to go in the sit position I noticed a connection between what I eat and my pain level and how my body works so I have ajusted my diet. And introduce things in to my diet I wouldn’t not have considered before ,I think it has helped but it’s a slow process about as fast as a snail although not cured I have avoided surgery with only 50% chance of success I noted through an eye test ,which is infact part of your periferal nervous system an improvement that my eyes had got slightly better which shows something must be working your eyes are the window to your sole it is said I find this site helpful and the people in it brave beyond belief I am sure of your fears, some good will come of by just browsing the information I’ve been on my own for a long time and so it seems have you may your gods be with you
Hi there @Ed_GB13! This is a pretty old thread, so you may not get much of a response here. But I did see that you have your own thread started, and I hope that you get some good response to it.
Sharon from ModSupport