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

Christie

Junior Poster

Offline

daughter with moyamoya

Posts: 75
Burnside IL

feeling very frustrated
Jan 4^th, 2010 at 11:06pm

My daughter had her surgeries a year ago and has had 8 strokes. I realize she is high risk for about everything but it is so difficult to get anything done. When she goes to the dentist for simple fillings, they make her sign a contract and will only fill 1 tooth at a time and did i say that it took a few different dentists to get anyone to even work on her. It took 3 consults with oral surgeons to get her wisdom teeth out and a stay at the hospital. She has an injured shoulder that happened with her brain surgery and the Orthopaedic surgeon won't do surgery because of her high risk. She is in pain all the time. She is trying to get the uterine ablation but guess what, the GYN dr won't do it because of her high risk. What is happening is her Neurologist is talking to these Dr's and explaining that she is so high risk of stroke, it scares them. I have tried to talk to the Neurologist. My daughter knows that she is high risk and willing to take that risk with certain things. I am so frustrated with this Neurologist and thinking about switching. I called him once and asked if she could get 2 teeth filled at once and he chewed me out saying i was trying to put her at risk.
Anyone else have such difficulty getting anything done? I certainly don't want anything to happen to my daughter but i am exhausted just trying to help her.Seems we always come up against a wall.

Back to top

1st stroke april 2008
1st surgery Nov. 5
2nd surgery Nov. 18
Still recovering from strokes

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: feeling very frustrated
Reply #1 - Jan 12^th, 2010 at 12:31pm

Christie,
I would defently get a second opinion. I would give your infromation to Dr.Stinberg's team. It sounds like alot has been building and hopefuly they can at least guide you of what needs to be done first. It can be very frusterating when you hit the wall. But you did the right thing in comming on this sight and asking for guidence. We are measured in what we do once we hit a wall. You are amazing in the fact that you are not quiting. Stay strong!
I hope this has helped,
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

Christie Junior Poster Offline daughter with moyamoya Posts: 75 Burnside IL	Re: feeling very frustrated Reply #2 - Jan 12^th, 2010 at 7:29pm Thank You Becky!
Back to top	1st stroke april 2008 1st surgery Nov. 5 2nd surgery Nov. 18 Still recovering from strokes IP Logged

RobinRae

New Poster

Offline

I Love MM.com!

Posts: 3
Oshkosh,WI
Gender: female

Re: feeling very frustrated
Reply #3 - Jan 31^st, 2010 at 12:40am

Ican truly sympathize with your daughter I am also looking for answers. I need quadruple bypass surgery and I cannot find a suergeon to even the MM surgery, my options for qualified doctors in Wisconsin seem limited, my insurace will not allow me togo out of state. Cry

i hope your daughter has an easier time from now on. God bless
Robin

Back to top

IP Logged

Danielle Junior Poster Offline 3 year old daughter with Moyamoya disease Posts: 71 Michigan Gender:	Re: feeling very frustrated Reply #4 - Jan 31^st, 2010 at 11:03pm Christi, I truly hope things with your daughter have gotten better. I started taking my 2 year old with MM to the dentist just for her futures sake. I have read on this board before about people with MM having problems with dental work. I am very scared for my daughters future because of her high risk. Dani
Back to top	Positive thinking is key! 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: feeling very frustrated
Reply #5 - Feb 2^nd, 2010 at 10:54am

Dani,
In the beginning I talked to my neurologest about what dental work I am getting done then have him write a note clearing me to have the task done to my dentist. I have had no problems getting anything done except removing my wisdomes. I had to wait for about 2 years then my neruologest said I was ready to have that surgery. I think it has to do with your body is still healing and oral care is like haveing another (minor) surgery so there are risks involved.

I have had no other incidences since my surgery so my neorologest has recently cleared me to have most dental works done with out a note, But everyone is diffrent.

I hope this helps,
Becky

Back to top

« Last Edit: Feb 2^nd, 2010 at 10:55am by Becky »

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

Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: feeling very frustrated Reply #6 - Feb 3^rd, 2010 at 1:26am Hi All Christie and Robin, sorry to hear about your difficulties. Luca's going to be reaching 'dentist age' soon and I'm just wondering where the risk comes in. Is it the anesthetic? Mark (Luca's 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

Becky Old-Time Poster Offline Stroke10/03, Diagnosed6/04, Unilateral Surgery9/04 Posts: 532 Minneapolis, USA, usa, 303, 84, MN, Minnesota Gender:	Re: feeling very frustrated Reply #7 - Feb 3^rd, 2010 at 12:25pm As I understand the anesthetic and/or novicane may have a reaction that might cause your blood pressure to flucuate wich in the early stages of recover is not good. but i am not a doctor. It is better to be safe then sorry. 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

Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: feeling very frustrated Reply #8 - Feb 4^th, 2010 at 1:55am Thanks Becky Mark (Luca's 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

Click Here to visit the Moyamoya.com Facebook page!

Christie Junior Poster Offline daughter with moyamoya Posts: 75 Burnside IL	Re: feeling very frustrated Reply #9 - Feb 5^th, 2010 at 12:14am Yes, i was told that it is the anesthetic. Am thinking i was told because of the vasoconstriction it causes. Living with MMD sure isn't easy....
Back to top	1st stroke april 2008 1st surgery Nov. 5 2nd surgery Nov. 18 Still recovering from strokes IP Logged

sandy m New Poster Offline I Love MM.com!mommy of 3 with mm Posts: 14 Asheboro North Carolina Gender:	Re: feeling very frustrated Reply #10 - Feb 14^th, 2010 at 8:05pm hi, i i dont know if this will help but i had the same problem with jacob i just didnt give up i kept looking till i found a dentist who would work on him it took me a while and as far as the anesthetic there is a risk but i called dr scott he said to use lovicane instead of novicane hope this helps
Back to top	IP Logged

Christie Junior Poster Offline daughter with moyamoya Posts: 75 Burnside IL	Re: feeling very frustrated Reply #11 - Feb 14^th, 2010 at 9:14pm thank you so much, i will tell the dentist Christie
Back to top	1st stroke april 2008 1st surgery Nov. 5 2nd surgery Nov. 18 Still recovering from strokes IP Logged

elaine Experienced Poster Offline I love YaBB 1G - SP1! Posts: 200 Sanford, USA, usa, 465, 285, FL, Florida Gender:	Re: feeling very frustrated Reply #12 - Feb 14^th, 2010 at 9:34pm My dentist won't even clean my teeth without a letter from my Dr. ( My Neurologist said dential work IS Important when U Have MM-----Something about bad teeth can cause strokes) Of course I'm not a child and need alot of work done (root canals)
Back to top	Elaine IP Logged

mc823923 Junior Poster Offline My dauaghter Annamarie lives with mm Posts: 83 Baton Rouge, USA, usa, 345, 271, LA, Louisiana Gender:	Re: feeling very frustrated Reply #13 - Feb 15^th, 2010 at 8:32am Hi Christie, Annamarie had her surgery in April of 2008. Last November she had all 4 wisdom teeth and an impacted eye tooth removed under general anesthesia in the hospital. She was even allowed to continue her asperin therapy. Hope you find some help. Margaret
Back to top	Margaret IP Logged

Cherry (LuckyMe) Junior Poster Offline Get busy on living or get busy on dying? Posts: 91 Chicago, USA, IL, Illinois Gender:	Re: feeling very frustrated Reply #14 - Feb 18^th, 2010 at 11:27am I didn't even know that I was suppose to mention my MM to the dentist. I had 7 teeth filling at one time last November without any problem.
Back to top	IP Logged

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