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Has anyone had Direct By-Pass surgery fail? (Read 1527 times)
MW12
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Has anyone had Direct By-Pass surgery fail?
Mar 5th, 2015 at 9:41pm
 
This is a follow up to my very first post a few weeks ago. I'm not tech savy at all and just realized that maybe I should have started a new topic instead of replying to another topic that seemed to fit my daughters case. Hopefully someone out there will have some advice.
Here is my original post..... So happy to find this site!!!! My daughter who is 20 was finally diagnosed with Moyamoya on July 3rd, 2014. (after over 2 years of issues). She had direct by-pass on July 30, 2014 and all went "perfect" according to her surgeon. In October we had a scare with possible TIA/seizure so the doctor wanted to schedule an angiogram to see how things looked. She has been symptom free since, so of course, the one time I don't worry we get disappointing results! The by-pass was not visible and the interventional neurologist said it appears the surgery did not take. I haven't been able to find any info on this happening and we are not scheduled to see the surgeon until next week for more answers. Just wondering if anyone has experienced this? Is there anywhere in South Florida to go for help with this disease? I know I should be patient and wait till next week but I figure the more info I have the better as I make my list of questions for the doctor! Hope to hear back from someone soon. Thanks MW


After seeing the neurosurgeon on February 24th he confirmed that the artery he used for the direct by-pass closed. He was surprised because the surgery went so well and she had such good blood flow. He thinks when she had some symptoms in October that could have been the beginning of the artery closing but nothing on the imaging showed any major changes with the by-pass so since my daughter has been symptom free since the October issue he said do nothing. Both our Interventional Neurologist (who has done all 3 of her angios) and the neurosurgeon showed us how her brain seems to be making her own In-direct by-pass..apparently making up for the closed direct. OMG! This is so crazy but it kind of makes sense. So for now we are doing nothing. She knows her warning signs tingling fingers and tongue and slow thought process. Very subtle signs but if they happen he said go to the closest ER. Has anyone else ever had the By-Pass collapse? Her doctor at Univ. of Miami has done over 200 of these direct By-Pass operations. We went to Shands in Gainesville the doctor there had only done about 40. So we went with the doc with more experience. I've spent countless hours looking for info even trying to read technical medical journals to understand this disease and was very happy to find a place where people are sharing their stories. If anyone has any advice or had a similar experience please let me know.
As the saying goes..Knowledge is Power! Undecided but right know we're just scared and confused. Embarrassed MW
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Freelin
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Re: Has anyone had Direct By-Pass surgery fail?
Reply #1 - Mar 13th, 2015 at 1:55pm
 
Hi MW

My daughter had both side done in December of 2014.  I wanted to comment on your sentence about going with a doctor who had more experience.  I would suggest, at least, consulting with Dr. Gary Steinberg out of Stanford Medical Center.  He performed my daughter's surgery and during our "fight" with the insurance, to use him as in network, he wrote a letter on our behalf.  In the letter he indicated he has performed over 1200 such surgeries.  He may have some additional answers for you two.  Best of luck, Paul
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Talisa
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Re: Has anyone had Direct By-Pass surgery fail?
Reply #2 - Mar 14th, 2015 at 1:00pm
 
Hi.  I am sorry you are experiencing this.  I would contact Dr. Gary Steinberg at Stanford also.  You can send your daughters films there for review.  I also had symptoms for 2 years until I was finally diagnosed and referred to Dr. Steinberg.  I overnighted my films and they confirmed the diagnosis.  This was 10/2014 and my surgery on my left side was done 11/2014.  I still have symptoms (tingling, speech, thought process) and my graph is still open.  I have narrowing on the right side but not enough to warrant surgery yet.
Dr. Steinberg and staff are very helpful.  I have been to ER's here and overnighted those films for review and that is how I know my graph is still open.  Contact them.  I will be praying for you and your family.  Keep us posted.
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DawnieLittleBitz
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Re: Has anyone had Direct By-Pass surgery fail?
Reply #3 - Nov 22nd, 2016 at 7:45pm
 
I saw Dr. Jacques Morcos at Jackson Memorial.   He's got a lot of experience with this MMD and performed my bilateral STA-MCA bypass surgery.  Successfully.
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