Hi, my 2 and half year old son, Gabriel, was born with BPI after what was a very rough birth experience for both of us. I should have started researching when he was born, but no, I'm starting to look now and found UBPN.
Anyway, two doctors now have recommended the muscle movement/replacement surgery. I was wondering if any parents have been through this and could tell me about your experience and if you have any suggestions.
Thanks so much.
Muscle surgery is recommended; any suggestions?
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Netty
- Posts: 2
- Joined: Sat Oct 15, 2011 11:06 pm
- Injury Description, Date, extent, surgical intervention etc: A rather traumatic birth led to my son's BPI. He's 2 and half now. He's such a little trooper. He's an awesome kid. He's so happy and so funny and so loving and I am so blessed. I have been only dealing with what the doctors have told me to date. I so which I would have started researching the minute he was born. Now, I've had two opinions and they have both suggested the secondary surgery, the muscle replacement. <<sigh>> I'm scared of such a surgery on my so young son.
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hope16_05
- Posts: 1670
- Joined: Tue Jul 01, 2003 11:33 am
- Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
- Location: Minnesota
- Contact:
Re: Muscle surgery is recommended; any suggestions?
I am not a parent but an adult with an injury. I have had a muscle/tendon moved before but before good advice can be given, it makes a difference which muscle/tendon the docs want to move and what are trey expecting to get from that movement?
Tell us more and maybe we can offer specific advice...sorry I can't be more helpful than that. Welcome to the club nobody really wanted to be a member of, sorry to hear that your son was injured too!
Amy 24 years old ROBPI from MN
Tell us more and maybe we can offer specific advice...sorry I can't be more helpful than that. Welcome to the club nobody really wanted to be a member of, sorry to hear that your son was injured too!
Amy 24 years old ROBPI from MN
Amy 28 years old ROBPI from MN
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Netty
- Posts: 2
- Joined: Sat Oct 15, 2011 11:06 pm
- Injury Description, Date, extent, surgical intervention etc: A rather traumatic birth led to my son's BPI. He's 2 and half now. He's such a little trooper. He's an awesome kid. He's so happy and so funny and so loving and I am so blessed. I have been only dealing with what the doctors have told me to date. I so which I would have started researching the minute he was born. Now, I've had two opinions and they have both suggested the secondary surgery, the muscle replacement. <<sigh>> I'm scared of such a surgery on my so young son.
Re: Muscle surgery is recommended; any suggestions?
Thanks so much Amy, we're meeting with the surgeon on November 10 and I'm the kind of person that asks 1,000 questions (now) so maybe then I will have a more specific question to ask. I really appreciate your reply though. ~Netty
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TAYSMOM
- Posts: 3
- Joined: Tue Apr 05, 2011 1:39 am
- Injury Description, Date, extent, surgical intervention etc: Taylor was born with OBPI 10/06/06. She has had one surgery muscle/tendon transfer in May 09 in kansas city mo
Re: Muscle surgery is recommended; any suggestions?
My daughter Taylor is now 5 and she has had the muscle tendon transfer done twice. The 1st time was May 2010. The Dr did her front and they got so strong that he had to go back in on June 2011 and transfer her back muscles. She had good ROM after the 1st surgery but her arm started turning inward from the new muscle inbalance. But after the 2nd surgery as soon as they took the cast off even with a very weak arm she turned her palm up! She hadn't been able to do that her whole life. She has gained so much after the last surgery. I was very happy we did it. And welcome to the boards I'm not on here much but when I get a moment I come in and read updates
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RaisingCropsandBabys
- Posts: 27
- Joined: Tue Apr 05, 2011 7:08 pm
Re: Muscle surgery is recommended; any suggestions?
My son was 19 mos. old when he had the muscle transfer/tendon releases surgery. He gained so much with the surgery and though it was rough at times (with that big bulky brace) it was sooooooo worth it! His nerves didn't heal well enough to give him beyond neutral for external rotation, BUT since the m/t surgery, he has been able to compensate and get his arm out with the help of other muscles (which he was not able to do before it). The surgery really helped with his overhead movement also! He wasn't able to touch his lips with Lefty prior to surgery (or reach up past his shoulders) and with strengthening and hard work (and even 2 rounds of constraint induced therapy) he can reach so high now! It comes in handy when playing on playground equipment. =)
My kiddo was so limited in range of motion, that we knew the surgery could only benefit him so it really didn't seem like much of a choice (whether to have it done or not). It was much easier (in my opinion) than the nerve surgery because we saw some improvements right away! Like I mentioned, even with the surgery my son still had to do a lot of strengthening (and still does), therapies and focused play, and hard work... and yes, some waiting as well! I don't think that ever ends...
If you have more specific questions, feel free to ask!
My kiddo was so limited in range of motion, that we knew the surgery could only benefit him so it really didn't seem like much of a choice (whether to have it done or not). It was much easier (in my opinion) than the nerve surgery because we saw some improvements right away! Like I mentioned, even with the surgery my son still had to do a lot of strengthening (and still does), therapies and focused play, and hard work... and yes, some waiting as well! I don't think that ever ends...
If you have more specific questions, feel free to ask!
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anotherbpimom...
- Posts: 49
- Joined: Thu Mar 05, 2009 1:11 am
Re: Muscle surgery is recommended; any suggestions?
Hello,
We did a tendon transfer surgery to my daughter's shoulder two years ago. Before the surgery, she was only able to lift her arm to her belly button. Now, she can lift it above her head. I wouldn't expect her to do it repetitively, but she can once or twice in a row.
We are now going to do 3 more (I think?) next week. Of course, I am internally freaking out big time. She will have 4 fingers connected to one tendon. Her thumb to another, and another one wrapped a different way around her arm to hopefully help her supinate.
I love our surgeon and trust him. If it were anyone else, I'd be getting a second and third opinion.
There are some surgeons who just do surgery a, b, c, d... I have been lectured and warned about that by people in the medical field. Ours has not. He takes things step by step, continually assessing and tailoring options which are very specific to her. I have also been told more than once that some surgeons may value looks at times over function. So know why the surgeon is recommending that specific procedure and know if you have any other options and research and sole search and involve your child if possible in the decision.
Consider and weigh your options. Find a Dr. who is well skilled that you trust. Ask other Doctor's opinions if you're not sure. ***If you're going to do it soon, then start considering creative clothing options to keep your child warm in the winter. That is not an easy task. (Or, wasn't on our last round...)
Good luck.
We did a tendon transfer surgery to my daughter's shoulder two years ago. Before the surgery, she was only able to lift her arm to her belly button. Now, she can lift it above her head. I wouldn't expect her to do it repetitively, but she can once or twice in a row.
We are now going to do 3 more (I think?) next week. Of course, I am internally freaking out big time. She will have 4 fingers connected to one tendon. Her thumb to another, and another one wrapped a different way around her arm to hopefully help her supinate.
I love our surgeon and trust him. If it were anyone else, I'd be getting a second and third opinion.
There are some surgeons who just do surgery a, b, c, d... I have been lectured and warned about that by people in the medical field. Ours has not. He takes things step by step, continually assessing and tailoring options which are very specific to her. I have also been told more than once that some surgeons may value looks at times over function. So know why the surgeon is recommending that specific procedure and know if you have any other options and research and sole search and involve your child if possible in the decision.
Consider and weigh your options. Find a Dr. who is well skilled that you trust. Ask other Doctor's opinions if you're not sure. ***If you're going to do it soon, then start considering creative clothing options to keep your child warm in the winter. That is not an easy task. (Or, wasn't on our last round...)
Good luck.