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things getting much better

Posted: Thu Jul 22, 2004 3:11 am
by tjones
Just wanted to give everyone an update on my son. He's almost 2 1/2 mo post surgery and has regained most use of his arm. He still may need one more surgery for his hand, but overall he has gained so much more than we ever expected. Everyone at this site was so supportive and giving with personal advice there is no way to thank you enough.

On one more note if anyone has ever seen Dr Susan Mackinnon in St Louis I would love to know. She is the MD that did Derek's surgery and I have nothing but good things to say about her and her staff. She gave my son use of his arm back.

Best wishes to everyone here, I'll still stop in now and then. I hope at some point I may be able to give some advice to others going through this same situation.

Re: things getting much better

Posted: Thu Jul 22, 2004 7:08 pm
by Karen McClune
So glad to hear that your son is doing so well.

Best to your family,

Karen

Re: things getting much better

Posted: Thu Jul 22, 2004 8:14 pm
by Angela Butterfly
Hi T Jones
I did take my daughter to see Dr. Susan McKinnon, in 1998, a couple of times. However, at that time my daughter was 14, and her Chicago Orthopedic Doctor Tajdian had died in late 1996. His successor was not very good, and we gave up.

We ended up going to see Dr McKinnon at the recomendation of a plastic surgeon I had taken my daughter to for something totaly unrelated to her LOBPI.

The plastic surgeon saw her hand and told us he wanted us to see Dr. McKinnon for possible hand surgery. Dr. McKinnon did not offer any treatment for Jill. Dr. McKinnon had Dr. Dan Phillips do a EMG and She also us to another Dr Yamaguchi to look over her arm and shoulder, and he did not see a reason for treatment either, and questioned why we were there. CRAZY

So I ended up making a lot of trips to St. Louis and Jill did not get any treatment in 1998 & 1999. Dr. McKinnon even told my Jill not to let the plastic surgeon take off the suspicious looking NEVUS.....AAUURRGH, because she said it would leave a terrible scar. Well Jill still has the untreated NEVUS today - It is large carmel in color with irregular edges and has dark brown spots within. I still think it needs to come off scar or not.

In 2003 however, I took Jill to see Dr. Nath at the Chicago BPI picnic and Dr. Nath said she should have the Mod Quad.