United Brachial Plexus Network, Inc.

Hoping some of you can take the time to share. I would greatly appreciate your feedback.

If you developed a bicep/elbow contracture as a child due to your birth injury, did the contracture get considerably worse as you grew through later childhood and adolescence, or did it stay about the same?

Did it stay the same, get better or worse during adulthood?

Do you know how many degrees your contracture is when you go to actively straighten your arm?

Do you believe that your bicep contracture really interferred functionally?

Do you feel that the contracture made you compensate much, and if so, do you feel it led to secondary issues or discomfort/pain? If so, what?

Thank you so very, very much for sharing. I know everyone's case is different but as a parent of a young child I am trying to gather information and a better understanding of this part of the injury. Thanks again!

hi - read your post and want to give you some additional information....

of course I know little about what adults with obpi experience.... but because of Maia and asking the docs a ton of questions... this is what I learned about contractures...

(if the cause is muscle imbalance)
kids that have ruptures (partial or full) have more issues with contractures... (this would mean kids that have surgery also) the reason being that some things are connected and some things aren't. So some things grow in and other things don't.... thus the muscle imbalance. Someone with avulsions might not have the same issues or the same severity - they have nothing to start with and if they didn't have surgery, they never had it connected - so there's no muscle imbalance... did I explain that ok?

if a muscle imbalance continues to exist, the contracture gets worse and worse until it scars to the point where it cannot be released

I've also experience a change in contracture degrees for a different reason - position of the humeral head in the socket.

And finally - there are other reasons for contractures - disuse and posture.

I think I answered your qeustion on the other message board...but I just wanted to add imbalance aspects... don't think I wrote that before...

-francine

I've thought about your post for the past day and wondered how best to respond.

I think my difficulty lies in the fact that things have changed so much since I was a child, and that will be true for most of the adults on this board. We did not have microsurgical techniques and we did not have any kind of nerve grafting available when we were infants, so our situations are so much different and the potential so much different today that it was for me 50 years ago.

With that in mind, I can share my own feelings and experience on this, again with the caveat that I am not a typical adult, in that I DID have surgery as a child. You will find that most adults did not have surgery. I had secondary surgeries at the ages of 9 and 11 that were muscle and tendon transfers and releases. But there was no scar tissue removal, no neurolysis done, no nerve decompressions. Those surgeries were done because I was extremely internally rotated and had a 90 degree elbow contracture. Those surgeries improved my contracture to around 15 or 20 degrees.

They worked well for most of my life. In my late 30's (which would be 20 years after the surgeries), I began to notice the contractures developing again and it worsened as I aged, causing me to seek out medical help. For many years, the docs just said, 'be happy, you are doing great'. But I did not want to see things get worse.

I had the mod quad surgery in my late 40s and the results I have shared on this message board befofe but I can sum it up by saying that it not only improved my situation to where I was in my 20s, it also gave me new movement and function.

How does the contracture interfere functionally? Let me give you just one example that is a function of everyday life for the average person. With a contracture, you cannot reach the steering wheel in a car without sitting practically on top of it, and you definitely cannot reach any of the knobs on that side of the car, for me, that was usually the lights and windshield wipers as I have a LOBPI. I could write a book on other ways and if you want more examples, let me know and I'll give them to you.

Gosh this was long. I just hope it helped.

Nancy

I wanted to thank the both of you for sharing. It is always deeply appreciated, more than you know.

Nancy,

Wow, you know I never even thought of such basic things like the steering wheel. Amazing how many doctors and the rest of the world often doesn't realize all the little things those in the bpi community go through. I would love to take you up on your generosity to further share other ways in which the contracture interfered functionally. If you could just list out all the things that come to your mind it would be WONDERFUL. I am trying to increase my understanding and awareness since my child is 2 and already passively at 30 degrees (breaks my heart). I also would like to collect information to share with a few doctors who I believe would benefit from an increased understanding of the true impact of bicep contractures over the lifespan.

I have also been told that there isn't really any compensation issues that cause secondary issues regarding bicep contractures and I just don't buy it. Do you think that you had any additional pain or problems due to compensating for your bicep contracture? Like reaching for things and always being uneven and out-of-whack. I don't know maybe there aren't secondary problems really to bicep contractures.

From your experience and from other adults you know with obpi's, did their contractures worsen later on in life, like at 30, 40, 50 or so. Any thoughts on why yours seemed to get worse around 30? Less therapy? Lifestyle changes? Physical changes and/or just lack of innervation leading to continual muscle imbalance issues?

Nancy, would you mind sharing what releases and transfers you had done as a child if you happen to know? Do you know which muscles tightened up again over the years? When you had the mod quad recently were the same muscles released and how were the transfers done since you already had them done as a child?

And last but not least, you mentioned that after your release/transfer surgeris as a child that your contracture got better and went down to 15-20 degrees. I am kind of confused. Are you attributing the release/transfer surgeries in the shoulder area to that significant of a reduction in the bicep contracture? Can you help me understand the connection.

How many degrees are you currently at, passively and actively? And currently do you have any pain or discomfort in any way that is directly related to your bicep contracture?

Wow, sorry for all the questions. You are just such a WEALTH of information. And I am so very interested in what you have to share.

Thank you! Thank you! Thank you!

P.S. Still hoping to hear from a few other adults with obpi out there.

Wow you ask a lot of good thoughtful questions. I will try to give you good thoughtful answers! Please remember that I am speaking only from my own experience, and it is not a scientific listing of results. Also I cannot speak for other adults as I only met my first adult obpi a few years ago so I don't know what their lifelong issues have been. I'm going to repeat each of your questions as this post is going to be long and it will help us all know what we are talking about.

If you could just list out all the things that come to your mind it would be WONDERFUL
Here you were asking about how having the elbow contracture reduced has made a difference. Of course the new abilities for me are in combination with other changes so that my new ability to put something in an overhead bin of a plane (if it is not too heavy) comes not only from the extension of the straighter arm but also from my new ability to raise my arm higher than I could before. Also ticket spitters (remember I'm left OBPI) at toll booths and parking lots. I can now reach out to get the ticket. Still can't manipulate change but that is mostly because of the lack of supination and finger movement more than the ability to stretch out the arm. Bike riding -- my arm is still 6 inches shorter but at least now I can grasp the handlbar easily and without distorting my body which is what I had to do before. Those are a few more examples that came to the top of my head.

Do you think that you had any additional pain or problems due to compensating for your bicep contracture? Like reaching for things and always being uneven and out-of-whack. I don't know maybe there aren't secondary problems really to bicep contractures.
Absolutely. But it is hard to isolate one contracture and blame it as the culprit because I have more than just this one contracture. The overuse syndrome also figures in here and that is what has become the issue as I have aged. My nonbpi arm and hand have done most of the work of everyday life and it is paying the price, with arthritis and pain.

From your experience and from other adults you know with obpi's, did their contractures worsen later on in life, like at 30, 40, 50 or so. Any thoughts on why yours seemed to get worse around 30? Less therapy? Lifestyle changes? Physical changes and/or just lack of innervation leading to continual muscle imbalance issues?

As I said, I can't speak for other adults, hopefully you will hear from some of them. My thoughts on why I began to worsen over time -- The muscle imbalances are key, and as we age, well muscle tone decreases, doesn't it, so perhaps that led to weaker muscles getting weaker. Also when I was in my teens, post surgery and post therapy, the thinking was that I had done all I could do to improve my arm, and so ... no more therapy. I did not have any therapy from my teens until I reached my 40's. We now know that therapy needs to be life long.

Nancy, would you mind sharing what releases and transfers you had done as a child if you happen to know? Do you know which muscles tightened up again over the years? When you had the mod quad recently were the same muscles released and how were the transfers done since you already had them done as a child?
Luckily I have medical records from my surgeries as a child! It is hard for me to determine exactly what was done as we use different medical language today! So I will quote from my surgical notes the portion that seems pertinent. It is described as a 'Sever operation':
"The delto-pectoral groove was now developed, and the entire tendon of the pectoralis major was freed. It was now sectioned from its insertion into the lateral lip of the upper humerus. This immediately permitted considerably more abduction and external rotation of the left shouder. The tendon had been, that is, the muscle had been very tight and was now markedly relaxed. Further exploration revealed that there was some prominence of the coracoid process which seemed to impinge upon the lesser tuberosity of the humerus, and limit some internal rotation. Consequently, some of the coarbrachialis tendon was removed from the coracoid process, and a portion of the end of the coracoid process was resected with a rongeur ... The subscapularis muscle was identified and freed .. also the pectoralis minor and the short head of the biceps appeared to be relaxed and consequently not felt to release these muscles either ...

Now the mod quad at age 47, you will see that those muscles identified as 'relaxed' at age 9 were markedly different almost 40 years later:
Release of left pectoralis major muscle, release of left pectoralis minor muscle, tendon transfer of left latissimus dorsi to rotator cuff, tendon transfer of left teres major muscle to rotator cuff. partial release of teres minor contracture, external and internal neurolysis of radial nerve, posterior cord, median nerve , ulnar nerve and axillary nerve.

There is a lot more information in both sets of notes, although the ones from the mod quad are much more detailed in describing the procedure.

Dr. Nath did say that the pecs release that I had had done as a child was in a different place than they now release it.

You asked about how the surgery in the shoulder area could impact upon the elbow contracture. Well, it not only did that, it also impacted greatly upon hand movement and pronation/supination. I was stuck in neutral before and now can pronate quite well and supinate a little. AND I can move my fingers apart and open my hand, both of which were tight. I atrribute this to the neurolysis. There was innervation, the nerves just weren't getting much of a chance to do their work, and now they could. These changes were immediate. My husband has a photo of my face when I spread my fingers for the first time post surgery and while not the best photo of me in my post surgical state, the look of wonder on my face brings back that feeling of wonder and delight that I would not trade for anything in this world.

How many degrees are you currently at, passively and actively? And currently do you have any pain or discomfort in any way that is directly related to your bicep contracture?
I presume here you are asking about my ability to raise the arm? I was at 45 degrees prior to the surgery and am now around 100-110 degrees actively. Passively I can get to almost 180 degrees. The only discomfort I have from the bicep contracture is that the contracture kind of held the arm in place. Now with the arm loose, there is a pull on the shoulder muscles. I find that I need an arm rest more often! But it is not pain, just a tired feeling. And I hope that as the muscles grow stronger that this will not be an issue at all.

This has been long, probably my longest post ever. I only hope it has been helpful.

Nancy

Nancy,

I am so very sorry for taking so long to get back to you regarding your last post. I want to send a heartfelt thank you your way for taking the time to answer my questions and share some of your personal experiences. It means the world to me.

I have not had much time and haven't been able to get on the computer much or get over to the adult board. I would like to respond more to your last post and plan to after the holidays.

Again, THANK YOU so very much for taking the time to share! You are such a wonderful person! Hope you are enjoying the special moments the season has to bring.