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  Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › What were you told if the Surgery doesnt work
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What were you told if the Surgery doesnt work (Read 4371 times)
LynnePat
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What were you told if the Surgery doesnt work
May 5th, 2005 at 9:18am  
Hi I am Extremelife mom. Not only did this new Dr tell brad that it could be an viral infection. we are waiting for the results. Also when Brad had the surgery done the Dr in Boston Said it was like planting a tree and waiting for it to sprout. I know it takes 6-12 months. But the Dr here told Brad that if it doesnt grow there wasnt anything else they can so for that side. Has anyone ever been told that? He is getting blood flow but its coming from the right side.  Brad has had 2MRA and MRi done in the past 2 weeks. This has been the worst month for him since surgery. Its like hes going in reverse not forward. We are keeping in contact with the Dr in Boston and we are sending him the films to look at. But because of insurance we have to get permission to go to Miami. We are working on it. We are not giving up hope.
Thanks for all you help
Lynne
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Re: What were you told if the Surgery doesnt work
Reply #1 - May 5th, 2005 at 11:54am  
Hi Lynne,
  Sorry to hear Brad is having some difficulty.  I remember talking with both you and Brad while we were going through Marks surgeries.  Forgive me for not remembering, but did he have direct or indirect bypasses.  Mark had one of each.  He just finished the testing after 3 months yesterday at Stanford.  I can't share the results yet, but I surely will when we get them.
  I do remember that Dr. Steinberg told us that there would be an immediate change on the side that he did the direct bypass.  But the indirect would take time to "root" and because Marks left side was not as involved as the right, he chose to do the surgeries different.  I'll keep you up to date on what I hear.  Some other patients have also reported that there have been more than 2 surgeries as well from my recolection.
                        Best wishes,
                             Ron
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ExtremeLife1986
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Re: What were you told if the Surgery doesnt work
Reply #2 - May 5th, 2005 at 5:53pm  
Hey Mark its Brad, I had an indirect done on the left side of my head. My surgeon down here told me that if the artery doesnt take and doesnt "root" there is nothing else that can be down for that side and i have to up the right side keeps up. It is getting fraustrating cause like everyone most people havent heard about a viral infection in the case of moya moya like my surgeon thinks is my case. He says if thats my case it could possible be treated depending on what virus it is. Some cant be treated and if remains active could possible block off other arteries. Me and/or my mom will update you when my blood test come back
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Re: What were you told if the Surgery doesnt work
Reply #3 - May 5th, 2005 at 6:22pm  
Brad,
  I'm no expert, but I think you better get some more advice.  I recall seeing people that have had the indirect procedure and later on have the direct.  It also takes time for the indirect bypass to do it's thing.  Mark had the same thing.  We will get the results from his 3 month visit next Monday or Tuesday.

                         Stay in touch and be positive

                                          Ron
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ExtremeLife1986
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Re: What were you told if the Surgery doesnt work
Reply #4 - May 5th, 2005 at 6:59pm  
I am probably going to go to a diffrent specialist to get another opinion. My reuslt should be in tomarrow as i had the test last tursday. I am its the only thing u can do with the disease is stay positive. Stay in touch
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Re: What were you told if the Surgery doesnt work
Reply #5 - May 5th, 2005 at 11:26pm  
Brad,

I am sorry your neurologist has given you such discouraging advice.  Like Ron, I have also read that if an indirect bypass doesn't "take" a direct bypass can be done (provided there's an adequate donor vessell).

Is there any way you can email the surgeon in Boston?  (Not sure if it's Dr. Scott, but from my own experience, if it was Dr. Scott he seems very responsive to his emails).   I would ask him what the next step would be if 12 months post-op, the graft still did not grow in.

I am sorry for all you are going through.   It sounds like you are getting some really confusing/ contradictory information.   If you have seen Dr. Scott, I'd definitely get in touch with him in regards to what this new doctor is telling you. 

Jenny
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ExtremeLife1986
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Re: What were you told if the Surgery doesnt work
Reply #6 - May 6th, 2005 at 12:39pm  
Jenny,

I when I had my surgey done in boston was seeing Dr.Day from Brigham and Womens Hospital. He does repsond generally quick to emails and i have emailed him about my case. He has told me that there is other things that can be done if the 12 month post opp reveils that it didnt take. He has told me that as it is a possibilty that i have a viral infection but it is not proven what causes moya moya. Nothing to link a viral infection with the disease. Thankyou for you response my blood test has come in to see if i have a viral infection, if it is active, and if it can be treated, i will be shure to post my results
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Re: What were you told if the Surgery doesnt work
Reply #7 - May 7th, 2005 at 9:37am  
...Hi Brad -

How old are you?  I saw Dr. Scott for my surgeries (I was 28 at the time, but Dr. Scott sees adults up to age 35).  Dr. Scott may have already consulted with your surgeon, but if you e-mail him for his opinion he will most likely get back to you in less than 24 hours.  (He loves e-mail!).  Just my  Smiley...

-Shari
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ExtremeLife1986
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Re: What were you told if the Surgery doesnt work
Reply #8 - May 7th, 2005 at 3:59pm  
I am 19 years old I had the surgery Dec 13, 2004 when i was 18. I email a doctor in boston and i dont know if they write each other. I will keep in mind and email him for his opinion.
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