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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Re: Brainstem Cavernoma

Postby joanncooper » Tue Sep 26, 2017 5:14 pm

Hi Camper4fun,
I have a brainstem cavernoma. I’m 56 and have had 3 bleeds. Mine was discovered when I was 29. I have been able to manage my deficits until my 3rd bleed in 2014. I finally got myself together and my hubby and I made the trip to Chicago to see Dr. Awad. I highly recommend you making the trip if you can, because he will help you make the best decision for your daughter. I have sent my MRI’s to other doctors mentioned on this forum and Dr. Awad is the only one that wanted to see me face to face to understand how I was doing and what is important to me before making the decision to have surgery or not.

Hope this helps and you are not alone!!
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Re: Brainstem Cavernoma

Postby Michelle2000 » Tue Sep 26, 2017 11:57 pm

Camper4fun,

Welcome. I'm sorry this is in your family's life, but I'm glad you've found us. My son had a brainstem CM resected after a major bleed seven years ago. He was 9 at the time and has had a very good result. Have you seen Dr. Nicholas Wetjen at Mayo Clinc in Rochester, MN? He's very skilled and saved my son's life. He has told us that he would not touch another of his CMs unless certain things were present/happening, so I don't think he would recommend surgery just to do something. Mayo does such a good job of treating the whole patient - all the symptoms and concerns. We still travel there for his care.

Best wishes,

Michelle
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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Re: Brainstem Cavernoma

Postby Carter'sCavernoma » Fri Nov 10, 2017 1:19 pm

HI. My stepdad has a cavernous malformation in his brain stem. I made this account to help him, and have done other research into the topic. I found a blog, windlessdandelionwishes.com, and think that may offer some help. My stepdad has been told he's inoperable, but this website contains a woman's story of that same situation, and a successful operation. There are several other success stories on her blog as well. But the doctor mentioned was Dr. Robert Spetzler. Look him up. He's very skilled, and may be able to help. Good luck to you!
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