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AVM Survivors Network

Brain stem surgery

My 15 year old daughter is scheduled for surgery on Dec. 16 to remove a brain stem AVM. She has had 3 emolizations and 1 radiosurgery in the past 4 years. The radiosurgery was unsuccessful. Has anyone had surgery to remove a brain stem AVM? Has anyone had experience with Dr. Spetzler at the Barrow Institute?

Hi Kathy,

Sorry, but my AVM isn’t in the brain stem. But I do have experience with Dr. Spetzler, as I get my testing and treatments done at the Barrow. Dr. Spetzler is wonderful, as are all the other doctors on his teams. I can’t recommend him/them highly enough.

Wishing your daughter the best in her treatments and recovery.

Tori

Tori,

Thanks for your reply. What treatments have you had at the Barrow? I am asking because if Dr. Spetzler is unable to remove the AVM, then radiosurgery will be performed.

Kathy

Hi Kathy,

My AVM and aneurysm are in my spinal cord, and I have had all my angiograms done there (there’s no one in the state where I live who can do spinal angiograms or embos), and they also did the embos in 2006.

I was there again in September for my latest angiogram, which showed the AVM has grown back. I’ll be going back to the Barrow in March for another angio and am hoping they’ll embolize the AVM then. The embo on the aneurysm that was done in 2006 is still holding up at this point.

I am only a candidate for resection if I have another bleed, and the plan is to keep the AVM and aneurysm embolized for as long as possible. They don’t want to have to resect because that would require them to go through my chest to reach the cord, which would mean removing the sternum, some ribs and deflating a lung. That isn’t really the bad part though, because they think that once they go into the cord to try to remove the malformations I would end up being a quad. So obviously we want to avoid that if at all possible.

I really don’t know where I’d be without the Barrow, Dr. Spetzler and Dr. McDougall. For the first four years after the AVM bled I had a mis-diagnosis of cavernous angioma, and every one I saw said it couldn’t be removed or treated. It wasn’t until I found Barrow that I finally got not only a correct diagnosis, but was able to get treatment of some kind.

Sorry for the length, but I hope this may help you, even though I haven’t had radiosurgery there. If I were going to, I would trust them explicitly with doing it.

Just wanted to add - I’ve been to the Barrow four times now.

Hello, I went to Stanford, where dr. Steinberg attended a surgery to remove my AVM located in the brain stem. He couldn't approach the AVM but was able to cut off some blood flow to it. I also had cyber knife done there. I just went thru the side effects of the radiation, but it seems to be working. Good luck and keep us posted.

Hello Kathy, I hope you daughter is doing well! Our 14 year old grand daughter had an anuerisum (sp?) on 2-28-2015 It too is on her brain stem, inoperable. We are so confused and shocked with this
news. She has seen many doctors and the advise is split, radiation or do nothing
because it is too dangerous. Do you have any advise?

Hi Jose, I hope you are doing well! Our 14 year old grand daughter had an anuerisum (sp?) on 2-28-2015 It too is on her brain stem, inoperable. We are so confused and shocked with this
news. She has seen many doctors and the advise is split, radiation or do nothing
because it is too dangerous. Do you have any advise? Where is Dr Steinberg located, we are in Houston.