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

[Guest guest]

Hi Delena

Sorry I did not catch your posting sooner-- I get so many emails

between the two clubfoot boards that I rarely read them all unfortunately!

has unilateral clubfoot, his left foot. He relapsed at the age of

2 1/2 and had ATTT surgery with another achilles tenotomy in April

2004. He was just over 3 yrs old at the time. We had started out being

treated by Dr Pilcher here in Cedar Rapids, but once the relapse was

apparent to him (I'd been thinking his foot looked funny for about 6 mos

before the dr agreed) we were referred to Dr Dietz at the U of IA.

The day of Jake's surgery went fairly well imo. The staff had me gown

up so I could carry Jake into the OR myself, and I held him while they

put him to sleep (that part was really really hard-- if you want details

in case you have to do the same, I can email you personally). Once he

got into the recovery room we were allowed to go and see him. He was

very upset about the IV and having the nurses messing with him! The

cast went from mid-thigh down to his toes. He stayed overnight in the

hospital- we went home shortly after lunch on the day after the surgery.

The first couple of days at home were pretty hard- Jake was

uncomfortable and fussy, although I think it was harder for him not to

be able to move around and do for himself like he had been before. We

were sent home with prescriptions for pain medication (I think it was

vicodin, if I remember right) as well as a muscle relaxant

(vistaril)--> since they can't move their legs around as usual, kids

usually have muscle spasms and the vistaril helps with that. For the

first 2 or 3 days after we got home, I made sure to give him his pain

medications on a schedule, pretty much around the clock. After the

first few days I went to giving him tylenol or ibuprofen during the day,

and just using the stronger stuff before nap & bedtime.

Just a few tips- try to keep the leg elevated as much as you can as this

will help decrease swelling, which can be very uncomfortable. We used

my big body pillow to help prop the leg up in bed. Baths are also a

challenge as the cast can't get wet. We did ok potty-wise because Jake

was not potty trained at the time; we just needed to change him as soon

as possible to minimize the risk of overflow. Something that the cast

nurse did at the U which I would highly recommend- he put petals of tape

around the top of the cast, which helped to keep the cast from rubbing

on his leg and also made overflow clean-up easier (if the hospital

doesn't do this for you, it's really easy to do yourself at home- just

ask & I can give you directions). The tape he used is called Hy-Tape;

it's a salmon pink color. You can buy it at any medical supply store

(if you ask for pink tape they'll know just what you want). It is

waterproof and sticks really well (when Jake was in his spica cast after

breaking his leg, I tried several different kinds of tape/moleskin and

the Hy-Tape was the best by far). The cast nurse also sent us home with

an extra roll of the fiberglass cast material-- after just a week and a

half in the cast, Jake wore thru the fiberglass at the knee and heel of

his cast, so we simply added more fiberglass over the top.

OK, back to recovery On the 3rd day after surgery, Jake started

crawling around. He also would stand on his good leg and thus could

climb up on furniture. Just about the only things we didn't let him do,

were to climb into his carseat (the cement garage floor was murder on

the cast!), crawl around outside (I didn't want him to get little bits

of stuff up inside the cast), and of course stand on the cast leg.

Jake had his cast removed at 6 wks (mid-June). It took him maybe 5-7

days to start walking on his leg again, and even then didn't walk too

much as he got tired out easily (we had a lot of trouble with him

overdoing it, and then not wanting to walk again for a week!). He never

complained of any pain or discomfort of any sort. Within a few weeks he

was running around & climbing on stuff at the playground. He did have a

limp for awhile but it didn't slow him down at all!

He didn't need any rehab or braces after the surgery. Dr Dietz said

that PT generally doesn't help much and the kids are their best

regulators for activities-- they will increase their activities on their

own, so just don't push them.

We did not have any problems with infection thank goodness. No problems

with scar tissue, as far as I know anyways. He has two inch-long scars

on the top of his foot (one from where the tendon was originally, and

the other is where they moved the tendon to) and a larger scar maybe 2-3

inches long on the back side of his ankle/lower leg, where they did the

achilles tenotomy. He also had a small spot on the bottom of his foot,

where the suture & button were, but I can't find that spot anymore.

As far as long-term issues, I can't really answer that yet.

Unfortunately for Jake, he is in the small percentage of kids where the

ATTT was not entirely successful. Now, over a year post-surgery, the

tendon is not as strong as we would like; he can't lift his foot well,

and his foot is starting to curve inwards again. He also doesn't run

very fast or for very long, but I'm not sure what is causing that, if it

is his foot, or that he was in a spica cast for 8 wks (he broke his left

femur and both legs were casted for 8 wks, so he was very weak after

that). Dr Dietz thinks the tendon may have pulled out a little, so he

will need the ATTT done again. Jake's arch support is also very very

high-- it actually is making his foot shorter, so that it is 1 1/2 sizes

smaller than his right foot. They will do a tendon release on his arch

area. He will also have another (his 3rd) achilles tenotomy. Dr Dietz

said that right now Jake's foot is still very flexible, so now would be

a good time to do the surgery. If we were to wait awhile, and his foot

started to stiffen up, then they would have to do surgery in the joint

spaces, which would likely cause Jake to have pain in his foot as an adult.

I guess I can't think of anything else! Sorry this got so long. Please

let me know if you have any questions or would like more details on

anything.

Kassia

3/22/01 (Lt clubfoot, ATTT #2 10/18/05)

and 11/22/02

[Guest guest]

Delena - for what it's worth, our son had the ATTT recently. It was

not very pleasant, partly because he had muscle spasms for two days as

the muscles adjusted to the subtle new length/spacings of the tendon -

if anyone that tells you it is minor surgery and a piece of cake and

that the child is up and crawling after 24 hrs, I would definitely take

this with a pinch of salt. Our son had about 4 days of quite nasty

pain, which came in short bursts every 3 or 4 hrs (between pain

killers, basically).

On the plus side, some kids do, apparently, come through relatively

easily, and secondly, once the pain factor has eased off, in our case

after about 6 days, then the recovery is very speedy and pain-free. I

reckon each child must be different.

All the best - from what I have read, Dr H is up there with Ponseti.

> 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

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