Brainstem Cavernoma

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Brainstem Cavernoma

Postby camper4fun » Wed Aug 23, 2017 2:12 pm

Help! My daughter was diagnosed in April with a Brainstem cavernoma, after a bleed which has caused damage to her eyes and caused double vision, as well as behavioral, and balance issues. the first doctor we went to said this was inoperable due to the location and nerves that are intertwined with this tumor. Her 2nd opinion doctor feels it is more dangerous to leave this tumor in and that it has previously bled and could cause more damage. As a parent i want to do what is best for her. Has anyone else ever dealt with this drastic of a 2nd opinion? Not sure what to do and nervous to make the wrong decision.
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Re: Brainstem Cavernoma

Postby Elizabeth » Fri Aug 25, 2017 5:52 am

Welcome,

I'm sorry you are going through all of this. Super scary for sure. How old is your daughter? Hopefully you have read the newly dx section already...lots of good general information there. General rules are: NO blood thinners of any type including no advil or aleve, NO scuba diving, and NO roller coasters. You will need to read as much as you can without overwhelming yourself because the more you know, the better you can advocate for her. Brainstem is one of the most difficult areas for surgery...so you want to do your research. Right now, surgery is the onlt tx for cavernous angiomas. There is a bunch of research ongoing for possible medications that might help...but they are probably several years off of being available yet. Where do you live? You might want to get more expert opinions. And definitely only agree to have surgery after much research and thought...and with the best of the best surgeon. Come back with any questions. My heart goes out to you...that's a hard decision to make...especially for a child. Best wishes!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
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Re: Brainstem Cavernoma

Postby camper4fun » Wed Sep 06, 2017 6:27 pm

We live in Wisconsin and my daughter is 13. We have now seen another pediatric neuro doctor and they are stating that they prefer the cavernoma to have 2 to 3 bleeds before removing it, but feel it will need to be removed at some point in her life and would be willing to do it at any time. Still extremely confused. We are danged if we do and danged if we don't. If we leave it and it bleeds again i have heard that the percentage of that happening is higher being in the brain stem and that it can cause more damage. But on the other hand we have heard that if we do the surgery there is a 5% chance of more deficits.
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