Re: one year later.....

[Guest guest]

Hi Yolanda,

It is so good to hear from you again! I'm sorry it has been such a

struggle for you this past year to find a doctor that you trust to

help you and then to weed through all the administrative hassles.

I truly hope that this next surgery will go a long ways toward

decreasing your pain and helping your mobility. Are you in a

wheelchair now? I'm still finding life in a wheelchair very

frustrating. Everything that has to be done takes so long to do. And

then I don't have any time for the things I like to do. I owe so many

people emails (including our faithful leader -- I am sooo

grateful for your emails and sooo sorry that I haven't had time to

respond! I think of you and all the Feisties so often and hope for

the best for everyone. I apologize to everyone for not even having

the time to keep up the Feisty calendar the last few months.)

Anyways, Yolanda, you mentioned that the hospital has a lot of beds

for transverse myelitis. Was that one of your spine's problems?

In case you don't have the chance to write us again before your

surgery, I want to wish you the best of luck for it, and for a

problem-free recovery.

Take good care,

loriann

styScolioFlatbackers , " Yolanda " <yobos@...> wrote:

>

> Hi there elizabeth and everybody who reads this.

> I have not been online for about a year now. To be honeset I found it

> great to chat at first but later on I did not want to be occupied

> with flatback so much. Stupid mybe and sorry for that but thats the

> situation. Therefor I find it great that you elizabeth and all the

> others are able to.

> I dont now if you remember my story so I will write it down.

> I was diagnosed with flatback in 2004 after 5 operations on my back

> because of all kind of spine problems but not because of a scoliosis.

> I had an operation to fix my flatback in the netherlands were I live

> wich turend out to be a faliure and had the skrews partley taken out

> again because of nerve jamming.So seven surgerys and still not

> done..... No body could help me here and so I send dr Bridwell a mail

> to ask if he new anybody in the netherlands of in Europe. He advised

> me three dr. Prof Harms from germany(yes from the Harms cages), prof

> Webb from great brittan and dr CHopain from france. Dr Bridwell

> awnserd me te same day and wished me luck!

> Well anyway, asked advise from dr Webb and prof Harms and they both

> had about the same idea. Germany is a lot easer from here and it is

> 420 km from our place (aalten the netherlands) to Karlsbad

> Langensteinbach.

> I new I was in the write place seeing they said it was difficult to

> fix but they have had more difficult cases than me. So I wasent a

> special case and that made me feel good about it. The hospital has 71

> beds for back patients en 44 for transverse myelitis (hope that is

> hou you say it) anyway they have enough knowhow and bridwell advised

> me.

> Well great but then I need my insurance to pay and therfore i need

> papers from the hospital. After heaps of email, phoning,faxes I

> finaly got the papers at exact one year later! They said they are

> having so much probems because of all the operations and the patient

> who come from all over the world. I even heard that they had patients

> from your country, australie and so on.

> You asked me to write if and how I got aprovel from my insurance.

> Wel the good news is that my insurance agreed yesterday I have to

> use the E112 form for european countrys. Then all will be paid. Not

> all hospitals accept this but this hospital does. The only thing is

> that Prof Harms himself will not operate because he is paid

> differently (also more). I think that that was not the plan anyway

> because he only does the most complicated cases. Everything about me

> is discussed with him. I cryed yesterday of relief. Instead of

> feeling great I am now very restless. Now I know I will be operated

> and soon, but when? I would be admitted after aprovel as soon as

> possible. I have tempory loss of contole of both legs wich has always

> returnd till now,this is not a good sigh as you probably know. I can

> not sit, not stand and hardly walk. I That is wy they finaly wrote

> the letter for the insurance.

> I know partley wat they are planing to do, they are probably going to

> take the old bone out and reconstruct from S1- till L3, do an

> ostotomie on L3 and join from S1 till and L1. Maybe they will go up

> temporary an take the ones above out later. They most certanly are

> starting at the back then the front and then the back again. I have

> lots of dural and nerve scars wich must be removed. Well they pland a

> day surgery but I will not notice that luckley. I will not no for

> sure till they have all the information they need wich will be

> gatherd in the week before the operation.

>

> Enough about me, how are you ? And how are you Lorian? Have

> you gained some strengh or has it stayed as it was after the

> operation? Hope you both are doning oke.

>

> If you want to now exactly how it works with operations in Europe let

> me know and I will write it down. They had to will me but it is an

> insurance so you never know.

>

> frendly greetings from a restless woman

> aalten, the netherlands

>