I was born in 1987 with Arthrogryposis (Amyoplasia) and part of that meant I had no biceps in either arm and zero active flexion in my elbows. The hand Surgeon I saw was Dr. Robert Hartwig out of Sylvania OH. He was pretty sure I'd be a great candidate for the pectoralis major transfer so he presented my case to a symposium of hand doctors and the lead doctor agreeded & said he should go ahead and perform the operation before I started school.
Why the pectoralis Muscle?
He believed I would benefit more from this transfer then the tricep transfer because I already had very little muscle in my arms to begin with and he wanted to leave the rest alone and because I would need my very strong and functioning triceps to push up and to extend my elbow. He also didn't think using the muscle's from my back (lats) or my hip was a good idea because that would require reattaching blood vessels and nerves. He also said since my hands were still turned out from my shoulders being internally rotated I would function best with the pectoralis transfer.
Criteria for a successful surgery
There were three requirements I had to meet before he said he would operate they were:
90 degrees or more of passive flexion in the elbow receiving the transfer (I didn't require a surgical release of my elbow ROM exercises did the trick) that would receive the muscle
My pectoralis major muscle had to be developed in my chest wall. This meant that the muscle had to be an actively moving and strong in my chest wall.
The muscle needed to be normal muscle. Meaning it couldn't be overly atrophied or fibrous like AMC muscle can often be
By age 4 I met these requirements. I had the surgery in 1992 around 4.5 years.
The actual surgery
The surgery involved first making a 12-inch+ incision vertically on the right side of my chest to get the muscle. Then he carefully separated the muscle from my chest wall and the pectoralis minor muscle. Then the muscle was rotated into my arm (using the same incision) where the bicep should have laid. Then he made another incision on the underside of my right elbow and stretched the muscle down through my arm and attached it. He attached it by creating a tendon from the lining of one of my stomach muscles. Once again this didn't require any more incisions on my chest. He used a button to secure the muscle and newly created tendon using a button and the button was on the outside. I was stitched up and cast for 6 weeks in flexion.
The pictures tell the true story of how much it really helped.
This picture is of me trying to feed myself around age 2. As you can see I had to lean down to get my hand to my mouth
This picture is of my arms before the surgery.
They decided to do my right arm because they watched me closely and saw I was attempting to do things with my right hand versus my left. My doctor believed it was best to do the dominate arm because the transfer would help strengthen my coordination and grip in that hand.
This picture is of me is on the day I left the hospital.
I had to have my arm in a cast and sling for several weeks after because the button couldn't move or the muscle would detach from the elbow and be useless.
The picture to the left is of me first trying/ figuring out I could lift/ bend my arm & the picture to the right shows how I get my left hand (non-transfer arm) to my face
This picture of me is several months later, after intense occupational therapy to make my body realize it could move my arm and to retrain the muscle to do a function it doesn’t normally do.
Here I am standing up bringing my hand to my mouth around age 7
This picture is of my arms 16 years post-op. They guy standing next to me is Ward Foley he too has had the transfer. He is the only one I've ever met with this transfer and a diagnoses of Arthrogryposis/ Amyoplasia. The women is Muareen Casey her son has AMC, this was taken at the 3rd Annual convention for Arthrogryposis.
My right arm is in flexion more so then my left because of the transfer. This was a consequence my doctor and my parents expected. My left arm (non-transfer side) is short and curved because of the Amyoplasia. According to the Text Atlas, this happens because there isn’t enough pressure on the bones of my arms since I have such little muscle that they didn’t grow in proportion to my body. My wrists are in flexion because that’s the only way I can function. If they were straight they’d be useless. Something else to consider I didn’t have aggressive ROM exercises through growth periods. I also stopped wearing splints on my hands at age 5. I am now wearing hand splints again. My parents were not informed on the fact that contractures can recur.
What I consider the pro and cons of this transfer.
• I have complete and active control to get my right hand to my face and head allowing me to do practically everything from feeding, brushing my teeth, writing, typing, lifting, dressing ect....
• It gave both my shoulder and my elbow active motion because the muscle crosses over the shoulder joint to reach my elbow so not only can I bend my elbow I can now lift my arm above my head.
• The muscle was never detached from its original blood supply so the chance of it dying or weakening as I get older is slim.
• I didn't loose any ability because the pectoralis major muscle isn't key to everyday function and the pectoralis minor muscle is left in tact.
• I have never had pain from it post recovery time.
• The publicly visible scars are minimal
Cons- (these are cons but really none are that big of deal)
• Right Arm is stuck in a 90 degree angle (my left arm went from extension contracture at birth to semi-flexion and shorter in portion to my body as an adult. The Text atlas explains why this happens in people with Amyoplasia, something to do with the muscles not growing at the same rate of the bones. So basically my right arm is only flexed maybe 10-20 degrees more then my left). My parents were aware that I'd loose extension
• Large scar on my chest (its faded A LOT). The scar length of a foot might seem daunting to some people but I would rather have the ability to feed myself then be able to wear low cut shirts and worry about vanity.To reduce the appearance of the scar because it was bright red once the stitches came out, Mom took me to some doctor (she forgets his name) at Ohio State. This doctor had developed patches made of a special gel that reduced the appearance of the scar and made it softer. I wore these gel patches at night for about a year after surgery. They were reuseable so they lasted for quite a while. The scar is now the same pigment of my skin!
Here is a picture of me where I am wearing a lower cut shirt and you can see part of the scar if you look really close.
The transfer in girls
I know parents maybe are concerned about taking muscle from the chest walls in their daughters and how that might affect breast development later in life. Dr. Hartwig consulted a plastic surgeon before he opened me up and asked how to avoid cutting breast tissue and the plastic surgeon instructed him on where to make the incision to avoid it. It worked, I developed without incidence.
Why not both elbows?
They didn't do my transfer on both sides because then both arms would be stuck in flexion which would leave me unable to pull my pants up, toilet indpendently and reach.
Why its not commonly performed on AMC patients
My doctor and another hand surgeon explained to me that not a lot of people with AMC qualify for this procedure because there are so many criteria that have to be met for it to work correctly. The muscle being transferred has to be strong and it cannot be amyoplastic, meaning that the muscle cannot have fibrous tissue replacing part of the muscle. I personally have only met 1 other person with my transfer and one other person with a different type of transfer.
Research Articles on the transfer
The flexion deformity these articles discuss is what my arm has also done (stuck in 80ish degree in flexion) but this was told to my parents and the logic of leaving one arm alone was the course of treatment Dr. Hartwig took with me.
Dr. Hartwig belongs to the American Association of Hand Surgeons and he said that if people wanted the name of surgeons located through out the US who also belong to this association and should know how to perform this operation, just call his office (800-876-2663) and they'll give you a name of a doctor in your area.
This is simply my experience with this particular transfer but this surgery has been by far the one that has given me the most function for everyday living and that has worked 100% like the doctor said it would.
If you have any questions please feel free to contact me
Questions? Comments? Suggestions?
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The opinions and views expressed here are mine and mine ALONE. Furthermore, all comments on this page are opinions and are based on my experience and should not be considered medical advice or a substitute for talking to your doctor or therapist.