United Brachial Plexus Network, Inc.

My daughter, Kalyn, just turned 3, she was born with a bracheal Plexis injury in her left arm. It is a mid level injury, not severe not mild. She has trouble extending her arm because she never fully regained her tricept. She can lift her arm about to the top of her head and can lift it at about 90 degrees to the side. She had medium suppination, she can feed herself, but can't turn her wrist the whole way to put the food in her mouth.

Dr Kozin at Shriner's thinks that we should schedule her for the tendon transfer surgery. This is where we need your help. We need to decide (1) if she should have the surgery, (2) we need to know if she will benefit fron the surgery. Any input you can give me would be greatly appreciated. Are your children happy that they had the surgery? What improvement have you seen? How horrible is the scar? Were there any side effects? Anything that you could offer could help us with this very difficult next step. Thank you.

Tiffany,

I can only help you a little bit , but I am sure that there will be alot of others to chime in.

Dr.Kozin is a very good Doctor and one of the tops in our bpi circle. He doesnt do surgeries just to do them. If he says Kayln could benefit from the surgery I am sure she would.

The thing with me and surgeries came down to this. How much pain will my daughter have at the age of 20 or 30. Also will it continue to get worse.

Also the most important thing is go with your gut. Also if you are unsure about Dr.Kozin's reccomendation check out another Doc for a 2nd opinion and maybe even 3. I dont know where your from but if your in the east you have Dr.Waters in Boston and there are a few around up there. Just get a few opinions if you dont feel comfortable. Then sit down and see which one feels right.

I forgot to say welcome and there are alot of moms that can help ya that have had this surgery done. I just got here 1st.

KD's Daddy - StLouis

I would wait a year becuase it sounds like your child has pretty good recovery.

Kalyn's Mom;
My daughter, Katie, is also 3 with a left BPI. She had tendon transfer surgery of the latissimus dorsi and teres majon tendons on September 16. The surgery was to help her with external rotation (she could externally rotate hardly at all) and supination (she had supination to about 30 degrees). I am by far no expert, but I am more than willing to share my experiences with you both now and in her on going progress. I'll start by answering the questions you posted.

1. No one can make the ultimate decision of whether or not to have surgery, but you and her Daddy. I can however tell you why I decided to proceed with the surgery. Katie was at a point where she was not gaining any more with only PT. We knew something had to be done as her structure was also worsening (as in her arm was lifted at the shoulder as she walked). I also, like KD's Daddy, just kept thinking about what her little life would be like in the future even as far as when I'm not here to help her any more. I knew we needed to help her now because she could have been at risk for permanent atrophy of the muscles and lots of pain. Surgery, for us, was a far better option.

2. Dr. Kozin will tell you how she will benefit from the surgery. With Katie, we can already tell that she has full external rotation, which she never had before. Katie is in Therapy 3 times a week in addition to several times a day at home so I can actually see the improvements as they are happening....albeit a slow process. She was in a cast for 6 weeks. She is currently in a brace that can only come for tubbys. I should tell you however, that we were told that some kids gain little or nothing from the surgery while others gain substantially. Again, talk to Dr. Kozin.

3. Katie's way to young to be happy about having the surgery, but I would wager that if she was old enough to understand the difference between pre and post op, she would be ecstatic.

4. As I said we can already see full external rotation and recovery seems to be progressing quite nicely.

5. The scar is not something I like to see on her, (she has 2 from surgeries now....this one and one on her bikini line from bladder surgery she had in April.) However, Katie's scar from the tendon transfer surgery is basically in her armpit. So it's sort of hidden. Granted, you'll see it in the summer more with swim suits and sleeveless shirts than in the winter. I figure I'll just deal with the vanity issue when she gets older!

6. No side effects that I've noticed. She has not once complained of pain or about the cast or brace. I'm quite proud of her.

Anyway, if there's anything else I can tell you, please feel free to e-mail me or post and I'll be glad to respond. We're pretty early in the stages, but like I said, I'd be glad to keep you posted. I wish you all the best with the difficult decision.

God Bless You All!

Cheri, mom to Katie, 3, LOBPI -- Johnstown, PA

Thank you for all the info. It is comforting to have a network of people that are so knowlegable on the subject and so supportive also. If anyone else has anything to offer, we are all ears.
Thank you again.

We were in the same situation as you trying to make this decision. For us, it was actually a simple one after we found out that our daughter had some shoulder issues that we had to "fix." Dr Waters recommended the shoulder surgery along with the tendon surgery that you are talking about. To help with your questions:
(1) if she should have the surgery?
Only you and your husband can figure this out. You will know what the right answer is b/c you will feel it in your heart and in your gut. After talking to Dr Kozin about the surgery and really thinking about your daughters injury, progress, limitations, etc. you will have a good idea of whether or not you think she will benefit from having the surgery.
(2) we need to know if she will benefit from the surgery?
Like I said before, after talking to Dr Kozin I think you will have a good idea and you will be able to figure this out. Usually, what you feel will be the right answer.
(3)Are your children happy that they had the surgery? What improvement have you seen?
Ella is young, only 4 years old. She had the surgery at 2 years and 4 months old. After her cast removal she knew right away that she was able to accomplish things that she was unable to do prior to her surgery. She was all smiles the day she realized this and of course mom and dad were amazed!
As far as improvements: Prior to surgery she was unable to reach the top of her head, unable to fully external rotate, unable to touch the back of her head/neck, unable to bring her arm way up into the air, and some other limitations with ROM. After the surgery, she was casted for 5 weeks. The cast came off and she was in a lot of pain the first few days, but after that time passed we saw miracles. She was able to do everything I just said that she couldn't do. Just about 3 days after her surgery she was touching the top of her head with ease. Touching the back of her head/neck with ease. Getting her arm way up in the sky with ease. I cried, I was so happy.
(4) How horrible is the scar?
Honestly, it is barely noticable. The incision was right under her armpit and just a little bit up past the back of it, not even one inch. Today, if someone notices it, it looks no more than like a little scar from a bug bite, and it is the same color of her skin now. Under the arm, you really have to look closely to see the scar. This is another thing that I was worried about. I worried for nothing!

When you are making these decisions just think of her future. If there is something that you can do to help her now, why not go for it? That is how I looked at it. Today, seeing Ella be able to reach way up and have a good ROM since surgery, it makes me happy that we decided to give her this opportunity. I saw her hit a plateau and I didn't like the fact that there were still things that she was unable to do. It wasn't a matter of her doing them, but doing them incorrectly by compensation, it was just the fact that she couldn't do certain things at all. When I heard about fixing these problems and I leaned more about it...we went for it. I am 100% satisfied that we did.
Good luck! You will figure all of this out.
~Krista~

Wow,

Thanks Cheri and Kristi you answered a few of my questions too!

Thanks
Kd's Daddy St.Louis

Thank you all for your information and support.

Can I ask how your kids coped after the surgeries?

Was the experience of being in the cast and/or splint miserable for them or did they just adapt (it is wonderful how well kids can do that)?

Was the pain bad?

Were they helpful in the rehab/physical therapy stages?

Do they seem happier and/or excited with the improvements to their motion/abilities?

Kalyn's Dad:
Juliana had surgery like this about 4 1/2 years ago. It was her second bpi surgery.

There are a couple of things about her that I remember from that time. First, is that the 6 weeks that she wore the splint 24/7 went by faster than I could have imagined. Second, she was only 14 months old and had just learned to walk. But walk, run, jump... she moved like crazy with that thing on.

As for therapy, she had been in therapy 5 days a week before surgery and was in 5 days a week after surgery. I think she was happy for the break from therapy while she was in the splint-I know I was! She has always been an excellent therapy patient, and that didn't change after the surgery.

As for her "knowing" the difference... I do not believe she knew. Your child is older and might be able to tell the difference, Juliana could not. However, that was never a deciding factor in our decisions. At that young age, we made all the decisions for her. We looked at immediate function, future function, pain, and improvement of a joint. And, we went with our gut. If it felt right, we did it. We got as much information as we could, and based it on that.

Good luck with your decision. I know you have seen Dr. Kozin, he is a great guy and a fabulous doctor.

claudia

I can answer your question about how my son reacted after surgeries. Like nothing even happened. The primary surgery was by far the easiest. He was seven months old and was under for about 10 hours. He was incredible. When he woke up he wanted mommy, go figure and then within an hour he was back at it. We had our two year old, his sister with him and he would play with her and he was back eating in no time. He did well in that splint. After Mod Quad he was a little different but he was 14 months old. He woke up and he was MAD !!!! After about two hours he was fine, but I wasn't......he wouldn't eat or drink anything.....I sent my hubby down for food to McDonald's and my son sat there and ate fries with me. He drank almost all my shake. He was ready to rock and roll. He was standing in the crib and fell and broke his splint......then they came in to give him tylenol #3....it gave him adverse effects.....it made him hyper......at four in the morning he wouldn't go to sleep so the called in the Doctor to give him Benedryl. After that he was GREAT !!!!! People at the hospital kept asking me what he was in their for when I said surgery they couldn't believe it. He was all over. Kids are much more resilient then us. It took me weeks to get over, his surgeries........hours for him........Good Luck, remember, they are much more resilient than us, but also remember, every child is different !!!
Gayle mom of Brandon 7 RObpi