Thanks so much,
Rumpled, 12 is still more then anybody should ever have to go through.
I did call my insurance company today about the 20% and they said that since my hospital does treat the conditions that they won't grant an exception. I will talk more to my Dr's about this. Perhaps if I did get a letter with supporting documentation they will reconsider. Plus if it is coming from my DR, it puts a little more weight on it.
Even if I don't get it covered, I will still probably go. My moms friend worked for a hospital in the accounting department and she said that as long as you consistantly pay $5 a month they can't take you to court for payment. I might just have to do that. I don't feel comfortable have major surgery at a hospital that just told me I was too complicated of a case and tried to refer me elsewhere. It is my life we are playing with here.
Thank you so much for all of your input. I truly appreciate it!

I HATE insurance companies... they are like little oh I cannot say it or I will get banned... but for sure they do not have our best interests in mind. I traveled far and wide for my surgeries and paid dearly for it. Now I am not working so my options are more limited but I used to save up - others went on real vacations but us, yes, it was the old medical vacation... what surgery this year? Brain? adrenal? ahhhh.... nice.... my poor husband. I send them factual but barely nice letters to get my claims paid - but it takes a year.

I would contact the hospital in advance and see if they can give you documents in advance that you can send into the insurance co - plus if the docs themselves keep refering you to other hospitals - what can you do? They don't want to do it so get a letter so you can bolster your case for elsewhere. I cannot blame you for not feeling comfortable! Then go to a supervisor and an appeals board - the people at the 800 number cannot answer questions - even the insurance broker at work can go to bat for you. I have done that in the past. Keep copies of everything - names and get fax numbers.

Let all your doctors do the appeals for you. If they cannot handle your case then they must write letters, etc. etc. The doctors know what they have to do, to get you into the proper hands.

My sister who sadly just lost her husband to Cancer, had two doctors who would not operate on her husband. Well, there was a brillant surgeon that was willing to do the surgery but he was not on her plan. Guess what? Letters were written, my sister fought like h--l with the nitwits who know nothing, sitting behind a desk, that must sit there rejecting claims all day. I don't know how they can sleep at night.A doctor reviewed it and denied the care. She never gave up and this wonderful man had some tricks of his own to help them. My B-I-L had the surgery and it gave him almost two years of that he would of never had and they were grateful for that. This surgeon was a wonderful man. PS, he was also paid by this piece of you know what insurance company. My sis would not give up, she wanted the best for him and she got it. I can't say what I really think of these nitwits or I will be banned also. So there is hope and you get your docs to help you out and get the care you deserve. I wish you well, stay strong.

Thank you for your encouragement. Have you ever watched the move "Rain Maker" with Matt Dameon? (sp?) that movie just about sums it up. I did talk to my insurance company again yesterday and they said that my Docs can appeal. But that is up to the Dr to do all of that, I can't.

Thanks

Hey Carrie

just wanted you to know that Im thinking of you, I know thats not much, but as I live in Australia, I cant give you any advice, sorry.

On a recent trip to hospital for IVIG infusions for a day, I met a lady with a 20year old son with severe physical and mental handicaps with lots of other problems, we talked alot, and I said to her, Ive decided that any there should be a new rule in life, that each person can only have 2 health problems in their lifetime, and only one can be complicated!!!!(the other can be the flu or a broken arm or leg) I know so many people with so many awful problems it just aint fair:(

I hope you find some nice people to help you out in your insurance/medical problems, there are some out there, they are just very hard to find.
take care
redtail

Time to give the doc's office chocolates and make friends with the office manager... oh man... I have written the letters and given it to them to make their lives easier! If they just have to put it on their letterhead and sign it, they tend to do it faster... Cajole, look sick, (hah - like that is hard!) but the hard part sometimes is the office staff... some are nice, some are um, not.

I got my DR notes from the other day and it says that I can't be treated there. So that is a step in the right direction.

Dr. Drachman is great.
 

just getting on this forum for the first time, but had to write to offer my support. I was lucky enough to be diagnosed by a local neurologist who recommended that I see Dr. Drachman at Johns Hopkins. I have been treated by Dr. Drachman since being diagnosed with MG with thymoma in Nov 05.

I too have young kids so understand your concerns, needs etc. I was operated on in March 06. Since I was having sleep apnea at that point (along with major weakness, speech problems, everything else), Dr. Drachman made sure I was in the ICU right after the operation. The ICU nurses at Hopkins are fantastic. I know I'm one of the lucky ones but am now basically symptom free post thymectomy and and beginning to reduce my Mestinon and Cellcept.


Dr. Drachman is great and very caring - and careful. He is definitely the best person to take care of you especially with all your other problems, and is the "father" of myasthenia research. It's a priviledge to be treated by him, and Hopkins itself is at the forefront of this and other research. You didn't mention where you live, and I know costs are a consideration. Dr. visits are high - especially for an initial consult - but insurance may cover you (I hope), and I think it would be worthwhile. Call 410-955-5406 and ask to set up an appt with Dr. Drachman (Mondays only).

Best of luck,
Lisa

Well a lot has happened since I posted. U of M is going to be doing the surgery on Dec 6th. I am starting Plasmapheresis this week.

Has anybody else had the transsternal Thymectomy??

Transsternal's the big split right?? Then that would be moi...
Had mine in 1981 at age 14.