Click this link to read a post I like on the moyamoya.com message board...

Monica

New Poster

Offline

Life is short...enjoy
it!

Posts: 39
Los Angeles
Gender: female

unilateral MM w/surgery on both sides?
Dec 4^th, 2008 at 1:18pm

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

Back to top

IP Logged

Click Here to visit the Moyamoya.com Facebook page!

Little Luca

Senior Poster

Offline

Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female

Re: unilateral MM w/surgery on both sides?
Reply #1 - Dec 4^th, 2008 at 5:44pm

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)

Back to top

1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!

IP Logged

mc823923

Junior Poster

Offline

My dauaghter Annamarie
lives with mm

Posts: 83
Baton Rouge, USA, usa, 345, 271, LA, Louisiana
Gender: female

Re: unilateral MM w/surgery on both sides?
Reply #2 - Dec 4^th, 2008 at 6:42pm

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

Back to top

Margaret

IP Logged

Monica

New Poster

Offline

Life is short...enjoy
it!

Posts: 39
Los Angeles
Gender: female

Re: unilateral MM w/surgery on both sides?
Reply #3 - Dec 9^th, 2008 at 1:18pm

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?

Back to top

IP Logged

Becky

Old-Time Poster

Offline

Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: unilateral MM w/surgery on both sides?
Reply #4 - Dec 9^th, 2008 at 1:34pm

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

Back to top

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

IP Logged

Monica

New Poster

Offline

Life is short...enjoy
it!

Posts: 39
Los Angeles
Gender: female

Re: unilateral MM w/surgery on both sides?
Reply #5 - Dec 9^th, 2008 at 3:45pm

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

Back to top

IP Logged

mc823923

Junior Poster

Offline

My dauaghter Annamarie
lives with mm

Posts: 83
Baton Rouge, USA, usa, 345, 271, LA, Louisiana
Gender: female

Re: unilateral MM w/surgery on both sides?
Reply #6 - Dec 9^th, 2008 at 4:14pm

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

Back to top

Margaret

IP Logged

mfriis

New Poster

Offline

Proud Dad of Josie

Posts: 12
Nebraska
Gender: male

Re: unilateral MM w/surgery on both sides?
Reply #7 - Dec 10^th, 2008 at 10:12am

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

Back to top

13 Year Old Daughter when Diagnosed with MM
First Surgery 8/2007
Second Surgery 11/2007
Doing Great Now!!!!!

IP Logged

mfriis New Poster Offline Proud Dad of Josie Posts: 12 Nebraska Gender:	Re: unilateral MM w/surgery on both sides? Reply #8 - Dec 10^th, 2008 at 10:15am 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
Back to top	13 Year Old Daughter when Diagnosed with MM First Surgery 8/2007 Second Surgery 11/2007 Doing Great Now!!!!! IP Logged

Click Here to visit the Moyamoya.com Facebook page!

Becky

Old-Time Poster

Offline

Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: unilateral MM w/surgery on both sides?
Reply #9 - Dec 10^th, 2008 at 12:12pm

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

Back to top

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

IP Logged

Monica New Poster Offline Life is short...enjoy it! Posts: 39 Los Angeles Gender:	Re: unilateral MM w/surgery on both sides? Reply #10 - Dec 15^th, 2008 at 11:50am Thank you guys for answering and for your support. I let you know when I find out more. Take care, Monica
Back to top	IP Logged

	Welcome, Guest. Please Login or Register
	NEW search box below... Search Moyamoya.com with Google!