Re: foot sugery in Philadelphia

[Guest guest]

Nat and Tim,

I am not sure what surgery your son is thinking about, but here's my story.

I am 58 years old so this may not resonate with your son. I have CMT with

the typical very high arch, hammer toes, and I was almost walking on my

ankle. On February 7th I had my ankle fused my big toe straightened, and my

arch flattened. I was in surgery for 3 hours. My recovery was rapid with

very little pain. Now, four months later, I am beginning to walk barefooted

on the carpet and it feels absolutely wonderful--still no pain beyond a

little soreness if I overdo it. My doctor is Greg Horton, MD at Kansas

University Medical Center in Kansas City. He is a genius orthopedic surgeon

of the highest caliber. Next week, I get my custom made brace which fits a

regular shoe--a very light, plastic with a double upright that comes up just

above my ankle. It will be the first time I have worn decent regular shoes

for many years. I could not be happier with the outcome. Please, for you

and your son's sake, find a doc with the same reputation as Dr. Horton or

come to KU Med. Your son's feet will never be " normal " , but with care he

can motor along for many years and enjoy a good life. Best of luck!

Tom

[Guest guest]

Tom,

Thank you so much for your kind response. I am so happy for you that you had

such great success with your surgery.

[Guest guest]

Tom,

Sorry hit the wrong button! Let's try this again. So happy to hear your surgery

was successful. I am sure you must be very happy to walk without pain.

I had made an appt with a Dr. Myerson of land for our son, but then was told

by our health insurance company that they do not cover out of network doctors.

Sure I could go, but I'd be responsible for a very large sum if surgery did

occur there. May I ask how did you learn of the doctor you used?

I guess my biggest concern is that we find a Dr. who is experienced in CMT and

one that will listen to what our son is saying. And to then tell us what options

he wants. just wants to be able to walk, right now he's in pain with or

without the AFOs on. Would it be too much to ask if Dr. Horton would know of

someone in the PA area that he would recommend.

Knowing that surgery can be great with the right doctor and disastrous with one

that doesn't know CMT puts us in a position to seek out help from others. I

really appreciate you emailing us and look forward to hearing how well you are

progressing. Good luck with recovery and your new " feet "

Sincerely,

[Guest guest]

,

Your area MDA office might be able to suggest a good doctor/surgeon for you.

Have you contacted them. A good neurologist should also be able to suggest a

good local surgeon. Sometimes I get so frustrated with the " out of network "

line from insurance companies but I reluctantly understand. I miss the old

days of being able to go anywhere you wanted.

Good luck

Elaina.

[Guest guest]

,

If you know Dr. Myerson, perhaps he is better acquainted with referrals in

your network. I found out about Dr. Horton in a roundabout way. A local

surgeon here in Lawrence, KS botched a surgery on my hand ( I had torn a

ligament.) and I went to Bruce Toby, MD, an orthopedic surgeon at KUMC for

another procedure. He did a great job on my hand so I asked for a referral

on my foot. He subsequently referred me to Greg Horton. Also, I started

getting my braces from a orthotist at KUMC after my first visit with Dr.

Horton. They said Dr. Horton is one of maybe ten surgeons in the country

who can align bones in the foot with such skill. The more I checked him

out, the better he got. And finally, my wife works at KUMC and talked with

several nurses, they are great sources of information. It took me 3 years

to make the final decision because after the experience with my hand, I was

not going to get in a hurry. So, your best bet is to talk to lots and lots

of people about the physicians in your network. I am very fortunate that

the doctors at KUMC are all in my network. BUT, keep in mind that the

doctor who screwed up my ligament repair was in my network and is a hand

specialist. After the fact, I checked with others and most said, " Oh I wish

I had known you were going to him--he's terrible. " Now,... you would think

that with KUMC only 50 miles away and my wife working there and both of us

employed in health care that I would not have made the mistake I made with

the local quack. But, I had never torn a ligament before, he was in my

network, cheerful, confident, and said " Sure we can fix it. " So, take your

time and get as much information as you need to make the decision

comfortably. Good luck.

Tom