Hello Everyone!

Has anyone ever heard about a unilateral MM patient receiving an operation on both sides?  

Has anyone ever heard of, or experienced an operation when MM was just starting to form?

I received a message from a girl on this site from Australia, who said that her doctor recommended her to get operated on both sides, even though she was a unilateral MM case.  Unfortunately, she is no longer a member on this site so I can't ask her.

I had an operation in 2005 on my left side and in 2007, my doctor told me that MM has started to develop on my right side.  But every year, they just monitor/test me and tell me to come back in a year.  This is driving me crazy!!!   I don't know if they are not giving me the operation because it won't work phsically or if it's just a usless risk factor.  Does anyone know?  

Thanks for taking the time to read this.  Any feedback is greatly appreciated!

Monica      

Hey Monica

Luca has only just had surgery on her left side and she has moyamoya on her right too. Prof Mendelow has suggested we wait as he's had cases where patients in this situation that carry on normal lives after only one surgery, one particular case was 20 years ago and that person is fine. It's a pretty scary thought because what exactly are we waiting for - another stroke! I have to believe he knows what he's talking about otherwise why wouldn't he just do the other side now?

All the best

Mark (Luca's very proud dad)

My daughter had surgery on the right side in April.  She also has MM on the left side.  We were at Stanford for her 6 mo follow-up in October.  The left side is affected but Dr Steinberg says the central corrotid is not affected yet.  We are waiting, we will return in 3 years for more follow-up, unless she begins to have symptoms.  Annamarie is 16.  I feel like he must know what he is talking about, so we wait.

Margaret

Thanks for your guys's input.  

I'm still curious why operations aren't done when there are first signs of moyamoya.  Do you think it is because there is no point in taking the risk if the one operation can provide enough blood flow or is it because the bypass physically won't work if it is done to early?  

Any ideas?

In my opinion I don't think doctors should operate just to operate. But they should monitor the problem an if it keeps getting worst by a conciderable anount then I think it is okay. I am not a doctor but this is what my doctor told me. But  my other side has not shown any degragation for 3 years. He still has me monitor it and he will do an angiogram any time I want (or he thnks is nessacary). i also keep a journal of all my headacks. Where the pain is located. on the scal of 1 to 10 how bad is it, and how long did it last, did my medication for it work and how long did it take to reliveve the pain. We meet once a year to discuss any questions and for him to look over my journal.Then He decides if he wants to do an angio or not. i hope this helps.
Becky

I understand doctor's not wanting to take a risk but I would rather have the operation and have it done with then living year to year.

I'm American but I've been living in Germany for 10 years.  I miss the US and the warm weather, so I want to move to CA but I can't because of moyamoya.  If I decide to leave my job to move to the US, I have to take the risk of living without insurance...so, if I have to have an operation, I won't be able to afford it.  Whereas now, I have a good insurance plan that will cover my operation.  I feel so traped!

How do people with moyamoya deal with their medical coverage?

Monica

Hi Monica,

The medical insurance is tough.  Have you spoken with you Doctor and explained the situation you are in?  May he would make an exception under the circumstances.  I do understand you not wanting to go without insurance.  The problem is if you let your insurance lapse will you even be able to get insurance with the diagnosis, will it ever cover MM.  That is really a tough call.  Good luck and let us know what happens.  

Love and Prayers,

Margaret

Hi Monica,

First, my daughter's Moya Moya had effected her left side 100% and the right side 40%.  Our surgeon recommended the surgery on both sides, one in August and the second in November.  I am not sure why a person should wait.  The ancillary veins were very extensive with Josie so perhaps that is why our doctor wanted both surgeries done so quickly.

As for payment of surgery, the hospitals here have plans for writing off some or all of the bills based on a person ability to pay.  It does require some financial statements, but they have been very helpful with forgiving a large portion of the surgery.  It would be worth looking into.  BTW, the doctors here also have plans for the same thing.

Hope this helps,
Mark

I should have mentioned as well, that many group insurance coverage through an employer does not have riders for existing conditions, usually as long as you join the plan when you are first employed.

Mark

Monica,
Then just explaine to your nurologest how you feel. Ask if you could have the surgery for your peice of mind. He/She might then say okay, since you are woring your self into an area you may not want to walk down. As for your insurance ASK YOUR DOCTOR how he/she would set up the surgery as an elective or life treatinging. If your nurologest doesn't want to talk to you about that then See another with MM experence. Call Dr.Stinberg and ask his team's opinion. Dr.Stinberg is the American EXPERT.  Dr. Stingberg's team seems to get back to people extreemly well, and they know how to explaine things to put your heart/mind at ease. If you keep stressing about this then more things will start going bad and yuo don't want that to happen. I will pray for you to find the answer you are looking for.
Becky

Thank you guys for answering and for your support.  I let you know when I find out more.

Take care,
Monica