Upcoming Surgery

Discussions about the illness, treatments, doctors, etc.

Upcoming Surgery

Postby CJWalker » Thu Apr 20, 2017 7:46 pm

After three years from being diagnosed with my cavernoma in my brain stem, which has bled now three times, I am scheduled to have the cavernoma removed mid May. My surgeon is fantastic and has explained the procedure and expected outcome but I wanted to see if anyone else has had this surgery and what your experiences were like.

Thanks!
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Re: Upcoming Surgery

Postby Elizabeth » Fri Apr 21, 2017 6:20 am

Oh my, scary stuff. I'm sorry you are needing surgery but glad you found a great doctor. My surgery was not in the brainstem so its different from urs, but mine was deep (a difficult surgery) and mine was complicated by a stoke. My story is pretty well detailed on my blog, at least the early stages are documented there. Just know you will be fine as long as you survive....which of course you will. ;) The brain is an amazing organ and can heal in amazing and surprising ways. I read so much before my surgery, I was terrified, but I learned the power of positive thinking and if you work hard you can rewire your brain. I read tons of books but the 2 best brain injury recovery books that impacted me were: Stronger after stroke, and Rewire your brain, rewire your life.
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: Upcoming Surgery

Postby Elizabeth » Fri Apr 21, 2017 6:26 am

Sorry, my phone only let's me make short posts:

I never heard of neuroplasticity before I was dx with this, but its an amazing, powerful scientific fact. The brain fixes itself depending on your thoughts and actions. Think positive and work hard, you will be fine. I was a complete mess, and if you saw me today, you would never know....even though I'm not exactly the same, I have deficits that continue to improve but I seem "normal" despite my very rough post op state. Good luck, and be sure to come back and post your success story when ur ready! Love to hear how it goes!! Or come back anytime before with questions fears, etc...I know how scary it is. Cheering you on!!!
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: Upcoming Surgery

Postby CJWalker » Fri Apr 21, 2017 8:19 pm

Thank you Elizabeth I look forward to sharing my story in the future and will check out your blog! I agree in the power of positive thinking as it has played a huge role in my recovery from three brain bleeds suffered to this point.
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Re: Upcoming Surgery

Postby ker710 » Mon Apr 24, 2017 2:15 pm

I had surgery June 2014 to remove my brainstem cavernous malformatio after a second bleedn. I continue to have numbness on my right side limbs/side. However, the most disturbing affect is my development of oculopalatal tremor. I had double vision after the second bleed and it was unknown if it would resolve. I was unaware of oculopalatal tremor - it was never mentioned prior to surgery and I only became informed about it after developing it and using google to research what was happening with my vision/eyes. I would do as much research on your own as possible - read medical papers, articles and anything else you can get your hands on in reference to brainstem cavernous malformations. Best of luck.
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Re: Upcoming Surgery

Postby Michelle2000 » Thu Apr 27, 2017 8:13 pm

CJ,

My son had a brainstem CM resected 7 years ago. There was no doubt it needed to be removed, and I don't regret the decision to have it done. That said, be sure you ask your NS what the surgical path will be and what s/he considers a good outcome of the surgery to look like. Ask what sort of rehab will likely be required, who will the therapists be (maybe you already have some from your previous bleeds), and if you can, talk to them and ask them what rehab will look like and what a poor, average, and good outcome looks like at one month, three months, six month, etc. Your surgeon will have a different definition of success, and you want to be realistic in what recovery will look like so you don't get discouraged in the long slog. Also, be prepared for personality changes due to the surgical path. Brain surgery creates a new injury in hopes of mitigating an existing one, so you can't be sure what will change.

My son's story is sprinkled throughout these forums if you are curious.

My son is doing well today, but sometimes it is still so hard!

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: Upcoming Surgery

Postby CJWalker » Wed May 03, 2017 2:38 am

Thank you all for responding the information is very beneficial and informative. The surgical path as described from my ns involves lifting up the cerebellum, then dividing the tonsils of the brain stem to access the location of the cm which should be identifiable by the stained lining of the brain. After the resection they will place two titanium plates to reinforce the cranium. The ns suggested to expect symptoms and recovery path similar to my previous three hemorrhages but that possible side effects would be possible rehabilitation of the neck muscles. I try at this point to focus on the benefits of getting this very active cm removed and stopping any future bleeds which they predict will increase in violence and frequency. Praying and hoping for the best possible outcome while also taking the steps to prepare for a long and uphill recovery.
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Re: Upcoming Surgery

Postby Elizabeth » Thu May 04, 2017 12:01 am

Sounds like you know the drill. Rest, relax(hard to do....I know) and enjoy ur loved ones. Take good care, we will be thinking about you, wishing you the best...successful surgery, smooth recovery. When is ur surgery? Come back when ur up to it and let us know how it goes!
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
Elizabeth
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