Deciding on a surgeon

[Guest guest]

Hello to everyone,

I hope you all are enjoying a pain free or at least a low pain day ;-}

I want to remind the newer members to please be very certain of the person you

are going to allow to open your noggin' !

Many,many,... WAY TOO MANY, neurosurgeons will claim they do know how to do a

decompression surgery.......What are they decompressing ? It is a pretty common

opinion that any surgeon, unless they are working in a Chiari clinic, who claims

to do several of these surgeries a week is lying. In the first place, this is

considered to be a rare illness, and there in NO-WAY any doctor is doing

hundreds of these a week...not even in a month or a year!! This is a big RED

FLAG! RUN!! If a doctor claims to do a very large number of these surgeries he

is lying ( unless he is doing them on rats)

My adult son made a big mistake when he and his wife saw a doctor closer to

home than NY was. The surgeon was 300 mi. from us while NY was thousands of

miles. This neurosurgeon was a self-proclaimed chiari expert. He was able to

answer all of the questions, etc. The consequences from the decision to let this

man do his chiari decompression almost cost my son his life.

I began to worry about his recovery as soon as I saw the incision. It

certainly was very different than mine was and different from all I have seen in

photos, etc. This surgeon told us that he had done a dura patch, using my son's

own tissue (as requested by my son)

Looking at this small incision (WHICH WAS SUPER-GLUED closed) I just couldn't

see how he would even be able to get enough of the Dura to use for the patch.

My son was in the hospital there in AR for a few days then came home, and, his

condition was seriously bad, and worsening by the minutes. His headaches were so

horrible he was in agony. His wife called the surgeon and, he told her to bring

him back to the hospital. He returned only to lie in a hospital bed for a few

more days. No answers....nothing was done for him and he again returned home in

more pain than he had ever had in his life.

TCI was contacted. A very dear friend gave he and his wife airline tickets to

NY and back.

I had been in contact through emails with Dr Bolognese throughout everything

going on with my son, while he was in NY. He is the surgeon who assisted Dr

Milhorat in doing the revision that saved his life. I am not writing this to

sound like a know-it-all or to I just want everyone to know and understand how

bad things can get if the surgeon isn't qualified to do a decompression surgery.

Almost all decompression's done by an expert will include a Dura patch. This

has to be an extremely accurate part of this surgery so a dura leak doesn't

develop.

In my son's case, he had an extreme leak, however, his bandage was never wet.

That is because the spinal fluid leaking from him was going under his skin. He

had large areas, much like swelling, in his neck and is upper back. They would

then go away as his body absorbed the fluid. This continued for about 3 weeks

before he finally knew he was not getting better. He called me on a Friday

night, saying he knew he had to get there. He was CORRECT. He was dying!! Our

bodies create spinal fluid when we need it just like it creates blood. We can

bleed to death and we can die if we lose too much spinal fluid too fast.

The usual way people know they have developed a Dura is because the bandage

becomes wet. If the leak is sever, the pillows and the bed becomes very wet.

This could not happen in my son's situation because the glue the quack used to

close his incision was certainly working quite well.

My son's initial plan before the doctor (QUACK) in AR. convinced him he was an

expert, was to go to NY. They had found out he had a tethered cord. They also

told him that most people who have TC and chiari may only have to have the one

surgery and that would be for the TC. They said the chiari will generally go

away because the brain is no longer being pulled down by the spine so it will

then go back up inside the skull and, be where it is supposed to be.

I am not a doctor, not even a nurse. I have researched Chiari since I was

diagnosed in 1996. At that time I had already progressed to having

syringomyelia. Thank God I found a support group online and was then able to

find Dr Oro, a Chiari expert. Since my diagnose, my son and, his three

children have been diagnosed with chiari. His little boy has had surgery a few

years back. He is a teen now and he is fine. NY monitors the two girls and they

will be doing surgery for them when they feel it is time.

My son has had to go through 8 surgeries. He has had to return to NY many

times. Had he followed through with the initial plan of having TC surgery at TCI

and had he never met the lying quack in Arkansas ( I will tell you his name in a

private email if anyone wants it ) He may not have had to go through so many

painful major surgeries. Maybe he would have had only one for tethered cord.

Please know, I am not trying to scare anyone. I am on this group for one reason

only. I remember how terrified I was when I found out how seriously ill was. I'm

here to let you know how important it is for your life and future to make the

right choices. You can have your life back. (unless you have progressed to

permanent damage from a large syrinx, as I have. There is hope to have a pain

free life. Many people have that. They are no longer on support groups. They

have had successful surgery and they, they are now out there living their life!

:-} You can too! If your ins. says they won't pay...they will. Your doctor must

contact them and insist to the fact that you must have a specialist for the RARE

condition you have, or you will risk paralysis or death.

PLEASE....

Just be very careful of who YOU choose to do your surgery.

Warm Regards,

Judy Marie

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