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Message started by Christie on Jan 4th, 2010 at 11:06pm

Title: feeling very frustrated
Post by Christie on Jan 4th, 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.

Title: Re: feeling very frustrated
Post by Becky on Jan 12th, 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

Title: Re: feeling very frustrated
Post by Christie on Jan 12th, 2010 at 7:29pm
Thank You Becky!

Title: Re: feeling very frustrated
Post by RobinRae on Jan 31st, 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. :'( i hope your daughter has an easier time from now on. God bless
Robin

Title: Re: feeling very frustrated
Post by Danielle on Jan 31st, 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

Title: Re: feeling very frustrated
Post by Becky on Feb 2nd, 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

Title: Re: feeling very frustrated
Post by Little Luca on Feb 3rd, 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)

Title: Re: feeling very frustrated
Post by Becky on Feb 3rd, 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

Title: Re: feeling very frustrated
Post by Little Luca on Feb 4th, 2010 at 1:55am
Thanks Becky

Mark (Luca's Dad)

Title: Re: feeling very frustrated
Post by Christie on Feb 5th, 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....

Title: Re: feeling very frustrated
Post by sandy m on Feb 14th, 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

Title: Re: feeling very frustrated
Post by Christie on Feb 14th, 2010 at 9:14pm
thank you so much, i will tell the dentist
Christie

Title: Re: feeling very frustrated
Post by elaine on Feb 14th, 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) :-/

Title: Re: feeling very frustrated
Post by mc823923 on Feb 15th, 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

Title: Re: feeling very frustrated
Post by LuckyMe on Feb 18th, 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.

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