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

[Guest guest]

Amy - congratulations! Great research and sounds like you found a wonderful set of doctors! That must be a relief!

Do you have a surgery date for Max or is it the same?

Keep us posted on the pt evaluation. has/had, but much better, a twist in is skull base do\ue to the torticollis. Most evident in his crocked hair line. With our last hair cut he was tilted, when straight you could tell on the hair line. Tilting again, gurrrrr!

Hang in there and my thoughts and prayers are with you.

Tammy & 12/8/99

[Guest guest]

Amy,

Wow!!! You have been bombarded with information, but at least you are getting

a clearer and more accurate explanation for Max's condition. I am SOOO glad

to hear that you have found a doctor that you really seem to like, trust and

respect. Nothing could be more important then that given the situation. It

sounds like Max is going to get all the help he needs and that is very good

news. I was glad to read about the PT. It will be good to know that you can

start doing something for Max right away!

Thanks also for keeping us updated. You really have been in my thoughts a lot

lately. I will continue to pray for Max as I always do and for you and your

family.

Best wishes your way...

Marci

[Guest guest]

amy.. that is amazing. I'm so glad you are getting more answers. knowing all the answers must be relieving in a sense, even if it's a long and arduous process. Andy also has torticollis. there's torticolliskids group that I belong to if you're interested also. you've got my email, use it! : ) diane

----- Original Message -----

From: syddesi2@...

Plagiocephaly

Sent: Friday, April 27, 2001 6:15 AM

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

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.AmyFor more plagio info