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Moyamoya Related Topics >> Moyamoya Related Information and Support >> Adult MM
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Message started by ariannasmommy on May 12th, 2004 at 8:12am

Title: Adult MM
Post by ariannasmommy on May 12th, 2004 at 8:12am
The whole timeI was researching MM before my daughter's surgery, I kept finding information that said that adults with MM usually don't do well with the surgery and opt not to have it.  I still cannot find anything to support adult MMr's having surgery.    What did dr's tell you or where did you go to decide to have the procedure done.
I only ask because I am still awaiting testing for possible MM.  Once again this wonderful medical association in Southern Illinois swears there is no hurry.  My own doctor has told me that I may be suffering from "sympathy" symptoms.   Okay, so I guess he has x-ray eyes and can see in my head.  Anyway, I was just curious.  If it had been me and not Arianna, I don't know if I would have opted for surgery, then.  Of course, now I really don't know.  As I said, still not much out there in the way of info.  The different doctors that are mentioned here, I could not find other info on them by looking under MM.  I don't doubt Dr. Scott was the best for my daughter, but I would have liked to talk to someone else.  Just a bunch of thoughts I have been having.
P.S.  Just like Arianna's, my MRI has been pushed back another month.  I am being told the same things by my dr as her pediatrician told me.  If I have anymore symptoms, I am to go to the emergency room so they will do the testing.  I don't get it.  I really don't know what else to do.  And to top it off, I will be losing my insurance company in July and will be forced to switch to another.  This is like a catch 22.  Wait until the new insurance kicks in and risk damage, or keep pushing for tests and diagnosis and if it is MM risk not being able to get coverage.  What a mess.  

Title: Re: Adult MM
Post by dbohot on May 12th, 2004 at 8:44am
All I know is that we have been told that if my father (he is mid-fifties and has just been diagnosed) does not have any choice.  Without the surgery he will most definitely have a life threatening stroke.  The doctor has told us that there is a 90% chance there will be no complications or future re-blockage.  That seems pretty consistent with what I have read for children too.  He goes to surgery tomorrow.

Debbie

Title: Re: Adult MM
Post by Mar on May 12th, 2004 at 9:28am
Hi Tammy,

I agree that their is not alot of information out there concerning moyamoya. Although, that's why DJ put together this website. He's got some great, knowledgable info on the medical links. From all that I've read, in the past decade, they are having excellent results with surgery on adults as well. Every patient is different though, depending on their condition presented when diagnosed. Also, there are different types of surgery for moyamoya, that's why researching it and learning about it is sooooo important. The most important thing I've learned this past year and a half is that you should get a doctor experienced with moyamoya though. If you've have such mistrust with your doctors where you live Tammy, I think you'd feel better in your heart if you seek another opinion from someone else, perhaps out of your neck of the woods, so to speak. You've had to have read here, that there are some outstanding brilliant doctors who specialize in moyamoya. Dr. Steinberg, being the best in my opinion. You may want to get his or anothers opinion. Also, for the record Tammy, Dr. Scott is one of the best with children for moyamoya from all that I've read and all the people I've spoken to this past year or so. I hope you get some answers Tammy. You're in my prayers girl. God bless ya!

Good luck,
Mar

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