ATTT and /or PTTT (tendon transfer) surgeries - feedback needed

[Guest guest]

I originally posted this on the clubfoot group but, have not had much

response. Therefore, I'm posting it here with slight modifications.

I apologize, if this is redundant for some readers.

I have a 3 1/2 yr old daughter, Ariell. She is unilateral - right

foot and is being treated by Dr. Herzenberg. She wears the DDB at

night. However, she does not have the typical clubfoot. She has the

following issues:

*Leg Lenghth Discrepancy 1.7cm - right is shorter

*Muscle atrophy of right calf

*Right foot smaller than Left - 1 to 1 1/2 size

*Right drop foot (gait is different)...wears AFO with an ankle hinge

during the day

*Drop foot cause her to dragged her big toe when not wearing the AFO

(ONE REASON---I WOULD CONSIDER SURGERY)

*She cannot dorsiflex her right toes and foot

*Curly toes on right foot. One toe is actually tucked in where you

cannot see the toe nail unless you pull the toe out. But, it goes

back in (peek-a-boo toe).

*Dimples on the top of her right foot near her last two toes and along

the right side of that foot

Dr. Herzenberg has given us three options: 1. do nothing 2. continue

wear AFO brace 3. have posterior tibialis tendon transfer (PTTT)

surgery (posterior tibialis tendon is detached from the navicular

bone and moved to the top of the foot where it is reattached to the

middle cuneiform bone or the lateral cuneiform bone).

Dr.Herzenberg's reason for option 3: " The driving force behind doing a

tendon transfer is the possibility (not a guarantee) of being brace

free. This is generally not a huge concern for young children. As

they get older and more self aware and self conscious, it becomes a

bigger issue. Many teenagers and young adults will abandon their

brace, even if it makes them walk better. This is typically a result

of the desire not to look different than one's peers. While you could

wait on surgery until adolescence or older, I feel that you might get

a better result at a younger rather than older age. "

Dr. H said the surgery is similar to ATTT (surgery, cast 6wks, rehab

6-8wks). He has not performed Posterior Tibialis Tendon Transfer on

any clubfoot babies because this is not commoly done for clubfoot,

but my daughter's situation is considered " highly unusual " . Most of

his PTTT patients have been adults with stroke or head injury.

We have not decided if we should have the surgery or not. I emailed

Dr.Ponseti to see if he performed PTTT. His response was:

You are in good hands with Dr. Herzenberg. He has had enormous

experience in treating clubfoot and leg length discrepancies and I am

sure he will give you good sound advice. I did five or six posterior

tibial tendon transfers many years ago. The results were not as

predictable as with the anterior tibial tendon transfer but did

provide some dorsiflexion of the foot. It is important at time of

surgery to make a large window between the tibia and fibula so the

lower end of the muscle belly can slide forward freely.

I want to research every available option and understand it well

before consenting. So, I'm looking for feedback regarding surgery.

My daughter is very active and mobile(climbs,run,jump,

skip,kicks,etc). For those who have had ATTT or PTTT surgery, what

should I expect during recovery, rehab and down the road? How is your

child during since the surgery (any scar tissue, infections,

complains of pain from the older children, did the surgery help or

hinder the situation, etc)? If you are an adult that has had the PTTT

surgery, what has it been like for you? We know Dr.Herzenberg is one

of the best pediatric orthopaedic. The issue is what's best for

Ariell now and in the long run?

We appreciate any feedback that you can provide.

Sorry for the long email.

Delena