United Brachial Plexus Network, Inc.

Hello, were back of course were only back becuse our daughter is again having problems Angel had the neve surgry at 1 yr ol and the quad surgery at age 5.
Angel is 10 now. She has been doing well till just this past 1 1/2 yr. Angel is haveing trouble with alot of pain in her elbow and scapula areas, had to take her back for therpy but they don't wnt to touch her untill we can find out whats casing all the pain (angel is ROBPI , righty) It is going to take awhile to get her the x ray and MRI done due to red tape..fun fun, not.
Anyway I was wanting to know if anyone else has had this and could give me info about there child with the same problem??? Thanks

hummm no one else, strange...

Hi Angels Mom,
The pain is not unusual. There are varying degrees of pain in OBPI. Although I think it is not accurate I was told by our doctor that about 2-3% of the OBPI population experience neuropathic pain-perhaps that is why it is so low--perhaps many experience other pain that is not considered neuropathic.

Anyhow, my child has had pain since she was little. It was somewhat tolerable until she was ~12-13. Her first year in HS was miserable, filled with pain that could not be touched by OTC medication, and she was adamant about avoiding prescription drugs. Dr. Waters scheduled surgery for her last February, where they did a muscle/tendon transfer from her back to her shoulder. They also looked arthroscopically into her joint to see if there was any impingement causing the pain and "clicking" that she reported. They did see some rubbing on the lip of the joint, but the new muscle/tendon in addition to providing mor AROM should also keep that from happening again. She missed the remainder of school that year, but made it through with home schooling. She is still in Therapy, but has been virtually pain free, no clicking and doing very well.

That being said, they did not see anything on MRI. The pain was so intolerable however that we had to do something. She was coming home from school in tears from the pain, and then crying herself to sleep sometimes before dinner. I pray that she doesn't have to go through that again. As a parent it is very difficult to watch helplessly.

I hope you find the answers you are looking for.

rich

Hi Guys
Because my elbow was broken and scapula to , along with my birth erbs in the 50s.
I will try to offer tips that help me over the years, To day my elbow pops out of socket and my shoulder leans more , I did have huge pain growing up and I drove a semi like this for 25 years, Pain levels were .
These are things that help me for this problem over time
I found that gravity and pain have a lot to do with pressure from nerve ends being stretch further by gravity on them . Here a few things I do
I put my hand in a pocket when I can
Siting down I put my arm on a table or rest it on my leg sitting
I squeezes a rubber ball to stretch the pain out of my hand.
When slept I put a pillow under my shoulder.
For others who like the water
Learn to float in water, learn to do a side stroke it works and stretch the injury side.
I found Scuba diving for 32 years really help pain from gravity issues 50 ft under the water.
I found being in water one way or another it is great for nerve pain from gravity and nerve stretch issue
Finding the right pain med is a life long quest for all of us and there are a lot of post over all Forums over time that post to about pain issues. Trying to do things is way easier to do if in less pain. I hope you can at least get the gravity off your arm and try to stretch the pain out to lower the pain from cramping in shoulder , arm and hand. When you can ???
Hope this mite help?????
Tom

Thanks so much for the info, Dr. said it was "normal" for her to be in all this pain and right now theres not alot that can be done about it. were going back to water therpy (at home, am doing it as we very little choices here for therapy) here in another month, the dr. did give us a splint for her to wear at night to help streach out her arm more and we are to come back next year (or sooner if we feel we need to) Angelina is also dealing with bullying in school over her arm the dr. found this out as I didn't know it was as bad as it is.

"Angelsmom",
There's alot on Pain issues as we age etc...on our Obstetrical Injured Adults message forum too...
Carolyn J
LOBPI/74

My daughter Katie, also 10, just recently started having pain in her Erb's arm. Thanks for the info you posted. Not sure I'm ready to jump back into this as we have very fortunate with very little problems post surgery. Katie stopped therapy when she was 6 and began "natural therapy". She twirled/competed baton for 3 years and then began cheering. The doctors told us this would help her learn how to deal with how her arm "is" so to speack and learn to balance it out naturally. We've just recently notice a downhill slide! Prayers to you and your daughter!

Cheri (mom to Katie, 10, LOBPI)

Hi. We are also returning after a few years. My daughter Danielle is a soon to be 13 yr old with "unexplained" pain years after surgery. She had a humeral osteotomy Jan. 2005 with Dr. Waters. About 3 yrs ago she started having random pain in her shoulder and bicep area. All xrays and mri's came back with no reason for the pain. We tried therapy and advil (she won't take narcotics) with no relief. She was glad to hear she is not alone. Well, not happy but you understand lol.