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New ICH with Cavernoma - Left Frontal Cortex. Surgery 1/10

PostPosted: Sat Jan 06, 2018 12:18 am
by scuba_kiwi
Hello all,
I'm in North Carolina and was having unresponsive headaches, my neurologist seemed to be searching for some reason to get an MRI. We got one and I was rushed to the ER with a bleed in my left frontal lobe. I landed in Neuro ICU at Duke University. Very lovely people with high tech equipment - and beds in the room where my daughter and husband were comfortable staying with me. I saw 3 neurosurgeons and several neurologists, with varying opinions on what the next step is. One was kind enough to provide me some recent study data on treatments (see MA Horne, 2016 metadata study in Lancelet). Beware, you'll need to know statistics or have a doc/phd scientist to help you. Duke has some gifted neurosurgeons - but gosh looking at their website - there is NOTHING there on CCMs or even craniotomy. I see a LOT from UCLA...can't help but wonder...am I in the right place?

Re: New ICH with Cavernoma - Left Frontal Cortex. Surgery 1/

PostPosted: Sat Jan 06, 2018 6:15 pm
by Elizabeth
Welcome,

I am in CA in los Angeles so my experience is with doctors on the west coast. I personally saw many doctors at ucla, Cedars, USC, etc. I saw a lot of doctors because i couldn't get straight answers and my cm was in a very difficult location. I ended up having surgery with Dr. Spetzler, but he just retired. You can do a quick search for Duke and you will see several others liked their experience there. "Frontal" is considered a "good" location for surgery as long as its not too deep. I would suggest reading the main AA site to help you prepare for surgery, what to pack, what to expect, etc. I've never been more scared, but it all turned out fine in the long run. Take extra good care of yourself. Most people here would agree that brain recovery is often slow and takes longer than expected...patience is the name of the game. Wishing you the best. If you have any other questions, post again and we will try to help.

Re: New ICH with Cavernoma - Left Frontal Cortex. Surgery 1/

PostPosted: Mon Jan 08, 2018 5:46 pm
by Michelle2000
Welcome, scuba-kiwi,

I am sorry you have the need to join us, but I am glad you found us and hope you find some answers here. I believe there used to be a good ccm NS at Duke, but he may have been pediatric. I cannot remember his name. When I searched, I found mention of Dr. Douglas Marchuk, a geneticist doing research on CCM. I think there was a doctor at Mayo Clinic in Jacksonville who someone had good luck with as well. Unfortunately, almost everyone needs to travel to find a doctor for this, and then they also have to find a doctor at home who is comfortable working with that doctor and/or willing to learn. Often patients are told their lesion isn't causing their symptoms, but no other cause is found. Headaches are a big problem that way.

As you prepare for your surgery, keep in mind that brains heal very slowly. Be patient with yourself, and get plenty of rest. The need for more rest may be a new normal.

Best wishes,

Michelle