Max's surgery has been postponed!Sorry - long)

[Guest guest]

Hi all. I just want to update all of you. My friends.

Well, I have been beating myself up over Max's surgery...whether or not I was

doing the right thing. What happened was, I went for a second opinion

(obviously not a huge CS supporting doc) and he said that Max was " mild " and

that I should reconsider surgery. If you could imagine I was hysterical for

the last week. MAx has a very " rare " case (or so I have been explained to

twice) sort of CS. It was hard to diagnose and it is a bit hard to explain.

For technical reasons he is dx'd as coronal but there is more to it then that.

Anyways (don't want to jump ahead) I went to another Neurosurgeon and

craniofacial team yesterday. <A HREF= " http://www.jamestgoodrich.com/ " >Leo

off Dept. of Neurological Surgery: Main</A> I have attached his link. He

has diagnosed Max the same way but has given me a better explaination. I am

going with this doctor. He is at Montifiroe Medical Center in the Bronx.

There is a wonderful Children's Hospital there with a terriffic PICU.

Anyway, what Max has is a suture (not the coronal and I don't remember the

name) behind the eye that is fused, causing the Orbital deformity. The

" coronal look " is caused by a sticky suture line that is not expanding and

may not expand anymore (said may have even fused since the Feb CT scan) He

also thinks that it is partly due to Posterior Deformational

Plagiocephaly...ie: poisitonal plagio. Now Max is not flat on the back BUT

his skull is " twisted " down to the skull base. The rear fontanelle is

completely to one side. Even though he is not flat, he has shifted his skull.

He is considered, at least to my doc, not a typical positional deformity. Max

has continued to have progressive deformity and will probably continue. The

doctor(s) feel that the best course of treatment is the remodeling, the

advancement of the orbit and the realease of the suture line.

I hope that I have not confused you now. Here is the kicker...he said that

Max has a bad " curve " in his neck and wants him in PT ASAP! I never knew he

had this curve? Torticollis. I thought he had a mild case as a baby but both

doctors agree it is there.

I am having him eveluated by a PT as soon as I can get an appt.

I will most likely have my new surgery date today and I will keep you guys

posted.

Yet another reason why we have to educate this country as to what positional

can do...according to my doctor the asymmetry of the face and skull, even the

synostosis itself was all " most likely " secondary to posterior plagiocephaly

but I will never know for sure. We started repositioning at 4 months...it is

all so bizarre.

I am defiantely at peace with my decision to have surgery as I have had 3

doctors tell me that Max will get worse with time. I just want to thank you

all so very much for your support and prayers. You are all a god send to me.

PLEASE LET ME KNOW IF THERE ARE ANY QUESTIONS. I will answer the best that I

can. i will call my doctor if I have to.

Love you all!!! Hope all the kids are well.

Amy