My daughter was born with BP. We had 3 neurograms which show no neuromas or tears. She has complete function in her right hand. She uses her shoulder to move her arm but can bend at the elbow. Problems with biceps. We had 3 opinions. The first at 2 months said she needed a nerve graft which was incorrect. The second said she would be ok and the third said exploratory surgery to remove possible scar tissue.
My husband and I are confused about what to do. We are told that the scar will be six inches. Her BP is not drastic and we do not know what will be worse for her - the scar or the BP.
Any input is greatly appreciated.
Cheryl
scarring after surgery
Re: scarring after surgery
Dealing with different opinions is always difficult. We chose to be aggressive in Hannah's treatment because we thought it was the best chance for her to have a "normal" arm. Other parents have other ideas, which is fine. We just thought it was best for our family. We didn't want to have to explain to her why we didn't do everything we could to help her.
Hannah had primary surgery at 6 months in which they did 5 nerve grafts and removed the scar tissue. In our case they took the donor nerve from behind her ear. It left probably an 8 inch scar from her collar bone to behind her ear. Typically donor nerves are taken from the sural nerve in the calf. This leaves a smaller scar on the neck but adds scars to the leg.
To be honest with you, the scar has been one of the hardest thing for me to deal with. I think it's because the scar is a constant reminder of the injury. I always see it. The funny thing is I don't see very many other signs of the injury. She has a very "normal" looking and moving arm.
Now, I wouldn't trade that scar for anything! Hannah is a beautiful, loving child. She is so giving and tolerant. I believe a lot of that is because of all she's been through the past 2 years.
To me there's no choice. Who doesn't havea few scars here and there.
Good luck with your decision.
Clint
Hannah had primary surgery at 6 months in which they did 5 nerve grafts and removed the scar tissue. In our case they took the donor nerve from behind her ear. It left probably an 8 inch scar from her collar bone to behind her ear. Typically donor nerves are taken from the sural nerve in the calf. This leaves a smaller scar on the neck but adds scars to the leg.
To be honest with you, the scar has been one of the hardest thing for me to deal with. I think it's because the scar is a constant reminder of the injury. I always see it. The funny thing is I don't see very many other signs of the injury. She has a very "normal" looking and moving arm.
Now, I wouldn't trade that scar for anything! Hannah is a beautiful, loving child. She is so giving and tolerant. I believe a lot of that is because of all she's been through the past 2 years.
To me there's no choice. Who doesn't havea few scars here and there.
Good luck with your decision.
Clint
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Francine_Litz
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Re: scarring after surgery
Hi cheryl....
how old is your daughter now? usually they do not assess for biceps movement until 4-6 months of age...
nerves grow 1" a month so that is usually how long it takes for biceps to get innervated
personally I wouldn't trust the mri, we've never had good results with mri's - both maia and me actually - so I have a personal bias against them
the telltale is in the movement that has come in
can she sit up and bring food to her mouth with her affected arm at ages 4-6 months?
If you are confused on what to do - then you get another opinion... go to the BIG bpi centers... Texas, Boston, Paris, etc.... and see what they say. They see so many children that they can gauge by looking usually.
but time is awasting.... like I said I don't know how old your daughter is but there is a definite time frame of when a surgery should be done.
http://ubpn.org/awareness/A2002newparents.html
this will explain it.
As far as the scar is concerned - Maia is cut up all over the place... she has one huge one and then four medium sized ones... we love them and kiss them and celebrate them... for miracles happened udnerneath them. Change your perspective on them and your daughter will look at them positively, too.
I wish you the best of luck - these are not easy decisions to be made - I know - I've been there.
big hugs,
francine
how old is your daughter now? usually they do not assess for biceps movement until 4-6 months of age...
nerves grow 1" a month so that is usually how long it takes for biceps to get innervated
personally I wouldn't trust the mri, we've never had good results with mri's - both maia and me actually - so I have a personal bias against them
the telltale is in the movement that has come in
can she sit up and bring food to her mouth with her affected arm at ages 4-6 months?
If you are confused on what to do - then you get another opinion... go to the BIG bpi centers... Texas, Boston, Paris, etc.... and see what they say. They see so many children that they can gauge by looking usually.
but time is awasting.... like I said I don't know how old your daughter is but there is a definite time frame of when a surgery should be done.
http://ubpn.org/awareness/A2002newparents.html
this will explain it.
As far as the scar is concerned - Maia is cut up all over the place... she has one huge one and then four medium sized ones... we love them and kiss them and celebrate them... for miracles happened udnerneath them. Change your perspective on them and your daughter will look at them positively, too.
I wish you the best of luck - these are not easy decisions to be made - I know - I've been there.
big hugs,
francine
Re: scarring after surgery
One of the many questions we asked before Juliana's first surgery was "what will the scar look like?" Dr. Shenaq showed me on one of his students. We were lucky that she didn't have any infections, so her scar is "beautiful." She had a lot of grafting done, so she has a scar that goes from her ear down her neck and along her collar bone. She also has three small scars on her leg from the sural nerve that was harvested. She also has a "7" shaped scar in her armpit and a line in the crease of her elbow.
Geez, sounds like a lot, doesn't it? Well, she doesn't really think about them. She is 4 now and she asks occasionally about them, but mostly they are part of her. She wears thin strapped dresses and shirts. We don't hide the scar. We don't make a big deal about them. When she asks, we tell her how wonderful things happened because of the scars. I guess she sees them as "birth marks".!
More important than the scars, is making the decision to do surgery. You can end up with a scar from anything...but make sure to get enough opinions and ask enough questions to make you feel that what ever you decide is the right thing. We have always been aggressive in Juliana's surgery and therapy, but that is how we decided to deal with it.
We have gone through three surgeries and each one was a tough decision.
claudia
Geez, sounds like a lot, doesn't it? Well, she doesn't really think about them. She is 4 now and she asks occasionally about them, but mostly they are part of her. She wears thin strapped dresses and shirts. We don't hide the scar. We don't make a big deal about them. When she asks, we tell her how wonderful things happened because of the scars. I guess she sees them as "birth marks".!
More important than the scars, is making the decision to do surgery. You can end up with a scar from anything...but make sure to get enough opinions and ask enough questions to make you feel that what ever you decide is the right thing. We have always been aggressive in Juliana's surgery and therapy, but that is how we decided to deal with it.
We have gone through three surgeries and each one was a tough decision.
claudia
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admin
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Re: scarring after surgery
My son has scars for his BPI operations and they don't bother him at all....he actually is pretty proud of them and goes and shows them off, kind of like a trophy. He is five and has a ROBPI....I think it is what you make of them. Claudia and Francine are both right....if you don't make a big deal about it, neither do they.......
Re: scarring after surgery
My son is 14 months old and has had 2 surgeries thus far (needing several more). I have to tell you that his scars look FABULOUS. You will not even see them as he grows. They look red and ugly at first, but the plastic surgeons do a really nice job. If you do decide on surgical intervention, do NOT put Neosporin on the scars; this will make them "puffy". Do the scar massage as directed and there is cream (I think it is a silicone cream) that helps to reduce the appearance of scars. It's called Maderma and it is like 26 dollars a tube. I look at the scarring differently I think because Ian is a boy (he is 150% boy...). Boys usually love scars! In fact, Dr. Nath made a joke before Ian's primary surgery about the stories Ian will have to tell about wrestling the Bengal tigers that gave him his scars. I wish you the best of luck in your decision and I know that you will make the best possible choice for your child.
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Francine_Litz
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Re: scarring after surgery
wrestling bengal tigers??? I LOVE IT!!!!!
oh... poor Maia's classmates.....
hehehehehe
oh... poor Maia's classmates.....
hehehehehe
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admin
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Re: scarring after surgery
My daughter is now 16 months. She has made a huge amountof progress and that is why I have not opted for surgery yet. Ive had 3 totally different opinions from TCH, Beth Israel in New York, Dr. Lazereff at UCLA. Her only dificiency that I see now is she cannot lift her arm over her head withput arching her back.
Any thoughts?
Cheryl
Any thoughts?
Cheryl
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Francine_Litz
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Re: scarring after surgery
my thought is that at some point you might want to do some sort of scan to see what her shoulder joint looks like... that will probably help you determine what your next step should be - whether it is to let things be, do a surgery, or do a specific therapy or use a specific brace....
-francine
-francine