View Full Version : back from the Mayo Clinic
09-22-2006, 12:46 PM
I am so very frustrated right now. We got back from Rochester, MN last night after a long week and no answers. The night we got to Rochester, my husband called and told me that we got a letter from the reconstructive surgeon saying that after reviewing the ct scan that I sent to him, he thought that Kevin had true lambdoidal synostosis and that he was a candidate for the surgery to fix it. The next day we saw the ns. The ns did not think that bases on Kevin's head shape, that he had synostosis. Even after reviewing the ct scan he still felt the same way. The next day we saw the reconstructive surgeon, and after he spoke with the ns and saw Kevin he did not feel that he had synostosis and that he was not sure why Kevin has the deformity that he has because he has never had positioning problems, he is on all sides of his heads. He did however say that he would do the surgery and see if he can fix some of the deformity, but he cannot fix the most prominent part, his enlarged mastoid, and he could net make any guarentees that he would look better. He said that there would be a chance that he could be worse off. He said that with most any other person he could say that they would look better, but because he does not has a diagnosis and because Kevin is atypical he cannot make that promise.
So......now I am sitting here trying to figure out what to do. I am going to have a neck scan done because he did say that his torticollis is so severe that there is a possibility that it is causing the deformity in itself.
It there is anyone who can help us please email me or repost to this message. Thank you.
09-22-2006, 01:17 PM
:hugg What a tough decision to have to make! I have heard of toricollis causing various problems, so the scan is a good idea. Has he had any kind of therapy or previous X-rays on his neck? We had trouble finding answers for Dillon's tort until he saw a physiatrist (also called a PM&R). Here's a little information on what PM&R's do, and a link to a PM&R locator. Hope this helps a little :hugg
What is PM&R? (http://www.aapmr.org/condtreat/faq.htm)
Find a physiatrist (http://www.e-aapmr.org/imis/imisonline/findphys/find.cfm)
09-22-2006, 02:48 PM
I talked to you about coming to Utah on the phone. You might want to think about sending the CT scan and brief message to Dr. Morales at Primary Children's Medical Center. All his info is under the doctor contacts at cappskids.org. If you still aren't feeling right I would keep trying. Let me know if you need any more help.
Hang in there. You are in our prayers.
09-22-2006, 03:56 PM
So let me get this right, the reconstructive surgeon that sent the letter is the same one that changed his mind and said it wasn't a synostosis?? I really feel for you. How hard it must be. I would definately take him somewhere else to be sure. I don't think I would let the recon go ahead and perform a surgery when he's not sure himself of why he's doing it and that it might not make a difference. Maybe there's someone else out there that can give you some much needed answers.
Hang in there, we're thinking of you.
09-22-2006, 04:56 PM
yes it was the same dr. that changed his mind. and now i i am up against a wall because my husband wants me to quit pursuing the whole thing.
09-22-2006, 05:03 PM
Arrggg!!! I am so sorry! I guess I would move on (for the moment) and pursue the tort issue....maybe that's the answer? Again, I am so sorry your not getting answers. I can see how it would be hard to accept, no it's not cranio if they couldn't provide an answer as to why his head was shaped the way it is........:hugg, :hugg
09-23-2006, 09:05 AM
I am so sorry too! How frustrating. I think I would persue the tort issue but I would also send copies of Ct to other PN to get an second or third opinion. I hope you can find some answers. Maybe you can help your husband understand that a second opinion would help you have some peace of mind?!
I do not know the answer, but my heart is with you both.
09-24-2006, 11:06 PM
((HUGS)) to you! How frustrating! I would definitely seek out another opinion from a NS or CFS who is specialized in caring for cranio kids. Seems wishy washy to me. How do you "change" your mind on the synostosis? Hmmm...... I had some disagreements when the CFS and NS were trying to decide whether or not Sylvie would need a helmet after surgery. I know my circumstance was on a much smaller scale. I did however feel angry over it and afraid of which was the best way...helmet or no helmet. How do I know? I am not the physician and I wanted what was best for my child. Go with your gut. If you feel you need to search more....then search more. You are not doing any harm by consulting another physician. I would also check out the tort. I know that tort can greatly affect anyone who has it, adult or child. Keep us posted and lean on us if you need to!! We are here for you!
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