Confused

[settera]

I have been dealing with limited movement in my shoulder and inability to straighten my elbow since birth. I have limited use and feeling in my left arm. I went to several specialist and neurologists as a young child and the doctors never determined what was wrong. I just found out yesterday that I have OBPI resulting from birth. I am now experiencing horrible pain in my neck, arm and back which lead me to my primary care physician. He has suggested Physical Therapy. I had been seeing a Chiropractor (who also did not know exactly what was wong with me but he does an activator adjustment instead of cracking). I am needed advice from people of have suffered form this. What is the best treatment? Surgery, PT, or Chiropractics? I am just not sure that my primary care physican has enough experience with this type of injury?

[Carolyn J]

Hello Settera,
Welcome to UBPN..I'm sorry we have to "meet" like this.... I call us a "BPI Family" because we all are living, sharing, and supporting each other.How old are you and where do you live? There are BPI Specialists who treat us adults too. Some travel to various States to give BPI Clinics and Consultations for both children & adults. Some adults are candidates for surgery & some are not.

On the "BPI Events" Message Board it lists upcoming visits and Clinics with the BPI Specialists who travel to see families some weekends& who to contact if you want to be seen there.

I am 67 years old and LOBPI & with no interventions or PT until a few months ago(I did have a tendon tranfer in the 1960's by an Orthopedist but he never referred to it as Erb's Palsy/BPI or CP even). I am NOT a candidate for surgery.

We adults have alot of pain issues in common, but every BPI injury is individual and also pain issues, secondary injuries from overusing our "good" side, & ways we treat /cope with pain. Along with some PT excercizes and warm water pool excercizes 2x a week I have recently started using a hot tub/jacuzzi as often as I need for pain & discomfort. My left hand has servere contraction but is completely relaxed in warm water so I stretch it there in hot tub & pool program. I need to have a soft ball or cloth in it at all other times or it is very painful.

I know that other Adults will post here too to assist you and support me in saying CONSULT WITH A BPI SPECIALIST to get the answers you seek too.
Other topic threads deal with Pain at some length too so read as you have time.

Feel free to email me if you have more questions too.
Carolyn J
Adult LOBPI
Age 67 & proud of it!

[settera]

My name is Amanda and I just turned 23 in Feb. I am just unsure of what steps to take. I am still on my parents insurance because I am still in college. My mother has been a blessing and has paid for all medical treatment this whole time. However she is worried about the cost of PT because the doctor said it could take 1-2 years. I love my mom to death and I don't want to put a big financial burden on her but I am only a part time employee while in school. So I can't afford it by myself. Luckfully I graduate in May and should have a full time job where I could pay for the appointments myself. And I don't loose my insurance until I am 25. I just know I need to do something because the pain these last 3 days has been horrible. I am mom seems apprehensive about PT.

[settera]

I am located in Northeast Kansas area.

[hope16_05]

Hi Amanda,
I thought I would suggest to you that since you are in college, if your college has a PT/OT program you chould be able to get therapy from a grad student (I am 19 and in college and aI get to see an OT student that will graduate in a couple weeks. and the therapy is very cheap or even free. The students need "practice".

I am not sure where your pain is, but I have been having issues with pain throughout the school year in my shoulder region of my back, around my scapula. I have been getting relief from ultrasound followed by deep tissue massage. It hurts a day or two after(it is a different pain, more of a sore muscle) but then I am pain free for a while. Like I got my first ultrasound/massage treatments in the begining of January and was good until the middle of March, then I had another treatment and have been good for the most part since then. A few sore days here and there.

Also swimming seems to help me, that is generally what I do for pain relief in the summer. Many people are temperature sensitive to the cold water, but I am not, any water seems to help.

If you have good function, surgery is probably not a good option for you. If you dont there are getting to be more procedures for adults. I just had a surgery last summer for my hand, so my hand function is pretty good right now. Still a little weak but way better!

Let me know if you have other questions I can help you with, I do a lot of research on bpi's.

Amy 19 ROBPI from MN

[ptrefam]

I agree with Carolyn, you should get to a BPI specialist. The most referred on this site seem to be at Mayo in MN, GA, also TX. I believe there are others. I would also pursue the PT or OT. This seems to be another common topic with people with this type of injury. That was a very good idea to check for students. Also, to make our therapy last longer we just go 2x a week and they tell us what to work on then we do it at home daily. So that may be a way to keep the cost down also.
Sue

[admin]

Thank you to everyone. You have been great. Just knowing I am not alone makes the biggest difference. Carolyn thank you for the e-mailed newsletter.

I have decided that I am going to go see a BPI specialist. I am lucky that I have very good nerve control over my arm, but I can not external rotate my arm, abduction, or straighten my arm. After looking at websites I think that the mob quad surgery and tricep/bicep surgery might be all I need, so seeing a specialist looks like a great idea.

So thanks for all your help and I will keep in touch. I love this website because I can get information from people that have or are dealing with the same thing, versus people (friends and family) that don't understand.

[settera]

Your all amazing. I feel so much better now that I know I am not alone and have some guidance. I want to thank Carolyn for the newsletter.

I have spent most of the last two days researching. I am pretty lucky that I have pretty good nerve control. I just have problems with abduction, external rotation, and straightening my arm. I am now very curious if mob quad and the tricep/bicep surgery would fix the problems I am having with movement. Just increasing movemnt I think would help because I would be less likely to favor my LOBPI. And take stress away from my back.

Like I said thank you so much, I am more at ease.
Amanda

[Kath]

Amanda
Welcome to the message boards.
I am glad you have decided to go to a bpi specialist.

Kath (robpi/adult)

[Carolyn J]

Amanda,
Keep coming back often. there is no dumb question!

Did 'ya go on Amy's Chat Thrursday evening? Enjoy graduation stuff too now, as it only comes around once!
Please give your mother a Hug for me too when you see her. She's welcome here too, you know.
Hugs,
Carolyn J