Very Concerned For My Friend's Son

[Guest guest]

  Hi Everyone,

  Hope you all are having a good day and in as little pain as possible.  I

haven't posted in a while.  Just mostly reading and answering here and there.

 This is one of those things not too many people would really understand except

a fellow Chiarian who has suffered much at the hands of Dr.s and searched to

find answers for themselves and finally did feel you accomplished what you set

out to do.

 I have a dear friend who has a son who has Autism,CM/SM EDS and Marfans.  When

we first found out about the CM/SM last year I tried to convince her to go to NY

to get help but she felt that the Dr.s here were good enough.  I tried to tell

her that it was a real possibility that her son had a TC and would only need one

surgery.   She didn't believe me.

 She puts a lot of trust in the Dr.s here because when her daughter was born

with a congenital heart defect she feels the Dr.s here saved her daughters

life.  So she let  the Dr. here do the decompression.  Her son has a big syrinx

in his C-spine.

 It's been a year since his surgery and the syrinx isn't gone so now they want

to shunt it.  I've tried to talk her into seeing a Chiari expert.  Even if she

doesn't want to go to NY there's one closer to us in Denver.  She won't go.  I

was able to at least get her to ask one of the CM/SM experts why his syrinx

didn't resolve and what he thought about them shunting it.  The expert told her

it was because he was under decompressed.

  He also told her shunting it was not the thing to do.  The expert said he

needed to be evaluated by a CM expert.  She isn't going to do it.  I can't help

feeling upset about all this.  He had his MRI's on thurs. and they are going to

do surgery on him on Mon.

 I have this bad feeling about how everything is going to turn out.   I know a

lot of people in our church knows his situation and are praying and maybe

everything will be ok.  If it is I'll be the first to admit I was wrong.  I just

think we have experts for a reason.  I've not heard of any of the CM experts

shunting  the syrinx.  Are there any?

  The other thing that hurt is we are really close friends and she didn't even

call me to tell me he was having surgery.   I had to hear it from her son.   I

know it was because she knows I don't agree with her decision.  No matter what

happens I'm still going to try to be as suportive as I can be.

  The thing that blew me away was when her son was telling me about the surgery

they were going to to do.  He said the Dr. gave him the choice.  He could either

have a shunt in his syrinx or the Dr. would go through his mouth and cut his

odontoid bone and fuse a couple of his vertabrae.  Since when does a 14 year old

have a PHD in medicine and know what is best for him? 

  Seriously if Dr. Bolognese had said, " We can do a Cranial Cervical Fusion or

a  shunt. "    I would of dropped him like a hot potato.   If he doesn't know what

I need and what's good for me , I sure don't.

 Her son is Autistic and very intellegent.   He has been asking me a lot of

questions about my surgery and why I had it and if his Dr. had suggested doing

the same surgery on me that he's doing on him.   I had to tell him I see Dr.s in

NY.  He seems concerned about all this and I think I may have opened a can of

worms but I have to be honest with him.  I didn't say anything against his Dr.

or his parents.  I told him why they did what they did to me.

 If any of you are the praying type.  Please pray for my friend's son as he has

surgery on Mon.  I am very concerned for him

 Take Care,

Regina

ACM1 11mm SM C6-T1

Decompressed Oct. 15, 2001

TC Surgery @ TCI Oct. 4,2007

PFD Revision/Fusion @ TCI Dec. 5,2007