Hello TByrd,
Your AVM sounds quite complicated, as most AVM's are. I know you are scared, that is a healthy response, it makes us cautious, just don't let it overwhelm you.
I’ve tried to be brief in describing my situation, however I wanted to be as complete as possible to give you as best a picture of my situation as possible. Keep in mind that every one of us and our AVMs are unique. I think we share some similarities with our AVM’s being spinal in nature. So I do not know if what I am offering can be considered advice or just simply my story. You’ll have to decide that for yourself.
I have an AVM entangled within my spinal cord tissue at C1 & C2. There is also an aneurysm attached (discovered in Jan. 2011) just on the outside of the spinal cord itself.
In 1989, during my second bleed, my AVM was discovered, but not the attached aneurysm, (imaging wasn’t as good back then) and I was told it was inoperable, it was too risky, I would mostly likely die or be tetraplegic.
On and off, over the years, I kept up with possible treatments. Quite a number of years ago I found out about the Cyber Knife, invented by Dr. Adler at Stanford Univ., in CA. He had treated a woman with the Cyber Knife who had an AVM in the same location as mine and he cured her. I lived in Michigan and was uninsured for a number of years so I couldn’t do anything about it.
Late in 2010 I became insured and in January of 2011 I found a hospital not far from me that had a Cyber Knife. I called and went to see the doctor there that was head of the Cyber Knife Department, an Oncologist, who immediately referred me to a Neuro-Interventional Surgeon. We did all new imaging tests and discovered the aneurysm that was attached to the AVM.
Because of the better imaging technology the newly discovered aneurysm, he thought, explained why over the years I had had a number of bleeds and did not suffer any paralysis or other lasting severe deficits. I was pretty much neurologically intact. My bleeds presented mainly with extreme headaches and vomiting and they would basically put me into a state just a step above comatose until the event resolved itself. That was generally a ten-day to two week hospital stay each time.
So in March of 2011 I had the aneurysm embolized. Then in November I suffered a major bleed, but this time it was the AVM within the spinal cord tissue itself that bled. This bleed left me tetraplegic. After five days in ICU they sent me to a Rehabilitation Hospital where I regained diminished use of both legs and my left arm, although with deficits too varying and numerous to list here. After a couple of months of rehab I regained about 70% use of my right arm.
In January 2012 we went back in and tried to embolized the part of the AVM that had bled. It was too small and of course very difficult to get to, but the Doctor thought he was able to embolized it. He then said he thought it may be possible to embolized the entire AVM so in March of 2012 I went back in for a final embolization.
When I woke up after the procedure all I wanted to know was if it was successful or not. It wasn’t. He had gone in, now for the third time, and decided that he couldn’t safely embolized it and didn’t do anything at all.
I have to admit here that I was furious. I don’t ever remember being that furious ever before. I wasn’t mad at the doctor, I was simply just livid. On the way to the hospital for that procedure I was thinking that I was either going to wake up cured or not wake up at all. I didn’t have the courage to think about waking up with even more, and possibly permanent, neurological deficits.
I said all that to explain this, with the caveat, I can never know for sure what caused what. However, I can theorize as to what happened.
I believe that after embolizing the aneurysm it changed the lesion’s architecture, the volume, pressure and route of the blood flow into and out of the AVM which put pressure where it hadn’t been before, on the smallest vessels within the AVM, and it ruptured and bled.
Should I have left well enough alone and not done anything? Should I have insisted on being treated with the Cyber Knife? They were not skilled enough to use the Cyber Knife on my AVM/Aneurysm, they used it mostly to treat cancer. They did say that maybe I should go and see Dr. Adler’s team at Stanford, but I feared my Insurance would not cover me going to CA. I also feared being so far from home. Did I make the right choice? To this day I do not know. Maybe the bleed was going to happen no matter what and maybe the embolization of the aneurysm is what allowed me to recover so much of my neurological functions. Maybe I still can have the Cyber Knife done. Maybe I can’t because now I have Onyx (glue) within some of my lesion. That is a question I failed to come up with prior to deciding to embolized the aneurysm.
So you see, I have experience of being partially treated and still have a plethora of questions. I do suffer with many neurological deficits now. I am not trying to discourage you nor am I trying to advocate that you do something or that you do nothing. I am attempting to show you that you can, and probably should get advice from as many sources as possible, but keep first and foremost in mind that your situation is unique, as you know, and that ultimately your decision has to be unique as well.
I’ve prayed for you that you have God’s strength and guidance in deciding what is best for you.
God Bless, Kim P.