Scars

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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MERsmom
Posts: 4
Joined: Sat May 19, 2012 3:35 am
Injury Description, Date, extent, surgical intervention etc: Daughter has ROBPI, born 1/11/12, Full arm injury with some recovery, Currently considering surgery.

Scars

Post by MERsmom »

Hello. I am new to the forum and have really appreciated reading what's on here so far. My daughter is 5 months old and has a full brachial plexus injury to her right arm. She had surgery on May 24th where they did exploration and discovered rupture of three nerves and lots of scarring. They took nerve grafts from both of her legs to use in the BP.
After this week all of her wraps will be removed and we have heard about massaging her scars to help with the healing. Do any of you have recommendations on what to use with the massage? I have heard differing opinions on vitamin E oil, Bio Oil, etc and am looking for some experienced opinions.
Thanks for the help!
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Scars

Post by jmar »

i used the vitamin E oil on my scars and it did help a lot. i dont think it helped the actual scar, but it helped keep the skin irritation down from the massaging. i always use some type of oil or lotion when doing a massage.
i hope the best for you and your daughter. remember, the BEST thing you can do for your little girl is to take good care of YOURSELF.
boone2675
Posts: 5
Joined: Fri Jun 15, 2012 12:03 pm
Injury Description, Date, extent, surgical intervention etc: My son Luke was born 7/11 with ROBPI-Primary nerve graft surgery done 10/11 at Children's Hospital in Boston, MA. Avulsion of 3 nerves (C5, C6 and T1) and C7 and C8 were stretched. Luke also has Horner's Syndrome on right side. He also experienced transient tachypnea (rapid breathing) at birth so damage to the nerve going to the diaphram was probably also injured (never confirmed) but after 5 days in "sick nursery" the condition resolved itself.
Location: Massachusetts

Re: Scars

Post by boone2675 »

My son is almost a year old (8 months post primary surgery). He has extensive scarring from the surgery and we were just told about a product named Topigel. It's a silicone pad that your child can wear at night while sleeping. We have been using it for a couple of months now and it has helped my son's scar tremendously. His scar was very hard in spots and raised up. The pads have reduced the hardness and smoothed them out. One of our PTs told us about it and gave us a sample to use. We cut up the pad into strips and apply it to the scar line before bed. It is reusable for about a week or so (you can wash them in warm water and gentle soap). They are also good for old scars too. Ask your PT or surgeon. They should know about them. Also you can find them at CVS in the band-aid aisle under the name ScarAway. But the pads are much smaller and they are expensive. I'm still using the freebie I got from the PT but I will be asking her how to get more. Not sure if they are covered by insurance or anything.

Sarah-Mom to Luke ROBPI
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Scars

Post by jmar »

oh yeah, i forgot about the scar pads. i used those for a while also. they seemed to help a lot. for my burn scars many many years ago i had kenalog injections that helped with the thickness. i think i had 2 or 3 of them. after 22 years, i have very little scarring from my burns. which were quite severe. dont know if they still do kenalog injections or not.
Tuckersmommy
Posts: 57
Joined: Fri Jun 04, 2010 11:47 pm
Injury Description, Date, extent, surgical intervention etc: My son was born At Parrish Medical Center in Titusville,Fla.After becoming stuck in the birth canal A doctor(any doctor)was paged 911.Believe it or not There was NO Obgyn on staff to preform a delivery,so a midwife and one other nurse had to deliver my son.He suffered 2 torn nerves and came out lifeless...
We see Dr.Grossman In Miami along with Dr.Price.He has had a nerve transfer in 2010,A round of botox and a recasting in 2011 and now we will having another round of botox in which we pray no cast will be needed.He is a smart handsome little boy who has come so far and everyday I feel he's improving!
Location: Port Saint John,Florida

Re: Scars

Post by Tuckersmommy »

I agree with the silicone pads...they did WONDERS for my sons scar along his calf.They make a few brands and what not but they work great :P
Life is a dance~We will all learn it as we go
jmar
Posts: 528
Joined: Tue Aug 10, 2010 3:43 pm
Injury Description, Date, extent, surgical intervention etc: brachial plexus stretch during thoracic outlet syndrome surgery on may 18, 2010.

Re: Scars

Post by jmar »

i live alone and had no use of my arm and hand at the time i was using those pads. they did not stick very well, so i had to wrap my arm with an ace wrap. if i was to video myself doing that, i would have won the $100,000 on americas funnies videos. it took me a long time to figure out how to get the ace wrap started. it is funny to me now, but then it was very frustrating.

just a funny little thing that happens
MERsmom
Posts: 4
Joined: Sat May 19, 2012 3:35 am
Injury Description, Date, extent, surgical intervention etc: Daughter has ROBPI, born 1/11/12, Full arm injury with some recovery, Currently considering surgery.

Re: Scars

Post by MERsmom »

Thanks all! We ended up buying the silicone pads and have been doing massage on the scars starting recently (we are just 4 weeks post surgery).
Does anyone know of some kind of patch to put on the scars to protect against the sun? My daughter is still under 6 months so I'm not sure about using sun screen. It's starting to get hot so I don't want to keep her bundled but we need to keep those scars protected! Thanks again for the advice!
boone2675
Posts: 5
Joined: Fri Jun 15, 2012 12:03 pm
Injury Description, Date, extent, surgical intervention etc: My son Luke was born 7/11 with ROBPI-Primary nerve graft surgery done 10/11 at Children's Hospital in Boston, MA. Avulsion of 3 nerves (C5, C6 and T1) and C7 and C8 were stretched. Luke also has Horner's Syndrome on right side. He also experienced transient tachypnea (rapid breathing) at birth so damage to the nerve going to the diaphram was probably also injured (never confirmed) but after 5 days in "sick nursery" the condition resolved itself.
Location: Massachusetts

Re: Scars

Post by boone2675 »

I don't know about uv protective pads but you can get clothing that has 50+ uv protection. Just google uv protective clothing and a bunch of sites come up. My son didn't have any nerves harvested from his legs so we don't have to worry about that part of his body. We just have to make sure his chest, shoulder and neck are covered. Sorry can't help more. Maybe someone else might have more info.

Sarah, mom to Luke robpi
Sarah, mom to Luke robpi
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F-Litz
Posts: 970
Joined: Fri May 26, 2006 6:53 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI, LTBPI at age 6.5, Sensory Issues, CP, Diaphragm Weakness, Aspberger's
Location: Ambler, PA

Re: Scars

Post by F-Litz »

I am a certified massage therapist and have learned all the ins and outs of scar massage, etc. When Maia had her first surgery she had a huge scar and we did so much to "make it better" -- she even had a compression shirt made for her - cost me $350 and paid for it 3 times because babies grow fast....

I used all kinds of products.... vitaming e - bio oil -- the other stuff made out of onion juice -- you name it we tried it -- silicone patches of all sorts....

you're not going to believe what I'm about to tell you but it is what it is

the scar that did the best was the scar that I never touched because she was in a brace for 9 months straight -- you can barely see it at all

the scar that did the worst was the scar I spent the most time and money on - - it looks like someone sewed her up with a fish hook and is raised and horrible

one of her scars keloided badly -- it was where a drainage tube was put in... the tube was TINY and the keloid was raised and as big as a half dollar -- it just grew and grew -- she eventualy had to get it surgically removed because it was catching on things and itching her -- thank God it never grew back (many do)

years ago I used to tell people not to worry about scars because by the time their child is 16 and going to the prom they'll be able to sit in an aestheticians chair and get it lasered off... well we are here now

your child's immune system is in charge of how the scars turn out -- sometimes there's nothing you can do to change things and sometimes you can --- it's a complete crap shoot
CindyF
Posts: 5
Joined: Wed Mar 09, 2011 7:55 am
Injury Description, Date, extent, surgical intervention etc: Melanie - robpi, recovered by nine weeks
Matthew - robpi, nerve graft surgery, mod quad, anterior capsule release, bicep tendon rerouting

Re: Scars

Post by CindyF »

We have tried just about everything available on the market. Out of all the scars our son had a revision on one of them. It healed horrible, again tried everything under the sun. We are now faced with a decision of steroid injections &/or surgery. The surgery window for him closes in about a year (for boys) so we have some time to decide but the clock is ticking. The scar patches did wonders on his scars where they took the sural nerve from when they started to raise. Pretty much all his other scars healed ok without too much intervention.
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