Re: New.....and my story- GENIE

[Guest guest]

Hi Genie,

Learn as much as you can before you see the Neuro and write down questions

you want to ask him.

Some doctors seem to think that after you have surgery your better and that

you could never retether again. It does happen in some cases but mostly not.

You found this group so you do know and will know more now.

I'm Australian and over here the hospitals keep x-rays and Mri's if they are

done through the hospital.

If they are requested outside of the hospital I keep them. Can you get the

written records of the last surgery from the hospital or doctor who

preformed the surgery?

I have an article on chronic fatigue syndrome and the spine. I'll dig it out

and send it through. I feel that if a neuro is good at brain and spinal

surgery, he'll do for me. That's what they are trained to do.

By for now, Cherie

> Having read several dozens of messages I'm pretty humbled. I certainly

> don't have the knowledge of this disorder that most of you have.

>

> In 1992, at age 40, I had surgery for tethered spinal cord. I had been

> told some 10 years earlier about a lipoma (discovered due to a workers

> comp. case, I had a job involving heavy lifting!) but was told to not

> worry about it until I had symptoms. I *wasn't* told that they

> symptoms I had would not be cured by the surgery.

>

> In 1992, after a nightmare of going here, there, and everywhere to try

> to find a competent surgeon on my health plan, I had the surgery. It

> seemed to go well and I was instructed to return for a checkup every

> year, which I didn't always do. That surgeon is no longer doing adult

> surgeries but only children at the children's hospital, so I was

> somewhat cut adrift....I visited his replacement once and did not like

> her.

>

> After the surgery, I had tingling in my feet and ankles, some areas of

> decreased sensation on my thighs and buttocks, and some bladder

> weakness (not emptying completely). Over the last 2-3 years the

> tingling has become much worse,sharp jabs of pain, and when it started

> crawling up my leg my internist sent me for a MRI....another lipoma! I

> had no idea that they grew back! If I had, I would have sought out

> treatment sooner (although I just recently aquired a " primary care "

> physician who is really on the ball which does help).

>

> Now I need to find a neurosurgeon again. My internist sent me to one

> but he said I needed a specialist and referred me to another. He's

> booked for several months but his nurse said she would talk to him and

> see if I could get in for a consultation sooner. She never called

> back.

>

> Meanwhile a friend who had a brain anurism and lived to tell of it

> referred me to her neurosurgeon. I spoke with his receptionist who

> spoke to his nurse and they said he does this sort of surgery. So I

> have an appt. later this month.

>

> Neither of these two surgeons have tethered cord listed as their

> specialties on the hospital or university faculty listings.

>

> I also have chronic fatigue syndrome so it is very hard for me to

> follow up on things, be available for return calls, or process medical

> information. I've only worked one 6 month job since the surgery and I

> can't help but feel the chronic fatigue and the surgery are connected

> somehow. I was really bummed to find out I no longer qualify for

> disability (the 5 year rule) but I never had medical back up for just

> why I was so fatigued and unable to work. If it happens that the

> tethered cord is at fault, it is too late to file. I have a working

> husband but we aren't in the best of financial shape, I do really need

> to be bringing in some income.

>

> I'm assuming I will need another surgery. I'm distressed to find out

> these damn things can grow back again and again.

>

> I'm also extremely distressed that the hospital where I had the

> original surgery has apparently discarded my original MRI's. State law

> only requires they keep them for five years. I thought they would be

> safest at the hospital and part of my permanent medical history.

>

> There is so much you are not told! I'm wondering what mistakes I am

> making this time just because I don't know any better.

>

> Thanks,

> Genie

>

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