United Brachial Plexus Network, Inc.

You are all awsome , Its all about match up to limaitions, what works what doesnt. The question is If I have these limiation ( What help with your limiation mine????? You can cass doctors forever or define your need?? I guess ?

Tom

Sarah -

Check with your chiro and see if he/she does A.R.T. - Active Release Therapy. It is similar to deep tissue massage, but they go deeper. My massage therapist recommended A.R.T. and I started seeing my chiro specifically for that for pain relief in my "good" shoulder. IT CHANGED EVERYTHING FOR ME. (I have a long post about it if you want to look that up. I posted it under LisaJayne68, the sign-on I used to use on here.) Anytime I have back spasms, I see him and it really helps. I think that the key to any problem is treating the cause (the spasm)and not just the symptom (the pain).

And you've probably heard it from every other "old chick" on here, but I will repeat it... be careful and not overstress your "good" side. Do as much as you can and don't let your injury prevent you from doing things, but just do them the correct way so you don't put undo stress on your arm or shoulder. Years of overcompensating is what caused my issues later in life.

Lisa

P.S. I think it ROCKS that you play B-Ball! My balance has always been bad and I fall every time I try to run! (Plus, I had an overprotective mother who wouldn't LET me try things like sports!)

I have to agree with Lisa, be careful with your good arm...I wasnt, I used and abused mine and at the young age of 22 I am paying the price! I thought it would never happen to me but it did, I have medial and lateral epicondylitis (tennis and golfers elbow). I also have a diagnosis of cubitol tunnel syndrome = this all means that I very easily have pain and numbness in my "good" arm.

When you get old enough to drive, look into a spinner knob...I didnt want one because it would make me look different, now that I have one, I wont go back to not having one...It save my good arm so much stress and it makes turning a lot easier!

Hope this info is helpful!
Hugs,
Amy 22 years old ROBPI from MN

Lisa,
Thanks for the info on A.R.T. I'll definitely have to look into that. My back goes into spasm alot! Or at least seems like it. I'm just wondering... Is there any way that you can tell if you are overworking your good arm? Like signs or anything?
Also, about basketball. I'm veryyy lucky to not have bad balance from my BPI. I can do almost anything. Key word.. ALMOST. haha welll I have to thank my mom for pushing me to do stuff. She has taught me not to let anybody say you can't do something because of my arm. She has had me try sooo many different things. Basketball, which I still play. I did danceline for 2 years. Quite a few different martial arts. Softball. Oh there's been alot of things. But like I said, I really thank my mom for all that.
Also! Before I forget.
Thanks Amy for telling me about the driving thing. Only a couple more years till I can drive so I'll have to let my mom know about it.
Thanks everybody else!
Sarah/13/ROBPI

Sarah
You have gotten some really good advice here and your Mom sounds like mine. She encouraged me to try everything. Because she encouraged me so much, I never see anything new, without wondering if I can do it! I don't even stop to think or wonder if I really want to do something. I guess new things are always a challenge for us and I can't resist the challenge. Therefore, I've had so many hobbies and tried so many sports etc. She is the one who told me (constantly) " Can't means you won't."

I have had A.R.T. therapy and loved it. I found my unaffected arm was contracting to compensate for the difference in lenght between my arms. Once the PT worked on it using A.R.T. I was able to keep it straight again without it feeling tight.

Keep asking questions because it helps everyone.

Kath robpi/adult

I don't remember ever having any twitching or anything like that before it became full-blown PAIN. (Maybe I just didn't know what it was until it was too late.) I always injured that arm anytime I fell - I couldn't "catch" myself with my left, so my right too the brunt of any fall. I usually attributed the pain to things like that. Your first clue may be twitching, etc... but if you have pain, that's not something to ignore like I did for so long!

I had back spasms to start - in the muscle just under my shoulder blade. That, I found out, was because the twitching muscle was attached to the one that was impinged higher up that came over my shoulder. The shoulder pain I had was mostly on the front of my shoulder. In addition to the ART therapy I talked about before, I also do specific PT exercises for that muscle - the one under my shoulder blade - to help strengthen it so it doesn't "give in" to the one that was impinged. A lot of the early therapy involved isolationg that muscle and just flexing it. Then I started doing the exercises, adding weights as it got stronger.

A prevention note for you:
A BIG thing too is being aware of the positioning of your shoulder when you're doing things and NOT "hiking" it up to compensate for a lack of ROM in the other arm. Something I used to do that I found out was a REAL no-no for my "good" shoulder was lifting heavy stuff - in my case client files onto the file room shelves - one handed. (I couldn't use both arms to do it and I was too stubborn to NOT do something.) With the shoulder in the over the head position, ANY weight on it will strain the muscle severely! In fact, I never lift anything heavier than a gallon of milk with that arm just to be extra carefull.

Lisa

P.S. Sorry I've not been on for a while. I've had a sinus infection/ear infection/walking pniemonia combination- yes, all at the SAME time - that really kicked my butt! I was in bed almost 24 hours a day for three weeks! :

Hi Sharah,

If you like the water float the arms it helps. try putting a small pillow under your arm pit this help me , Driving a semi for years did give me a hug good arm and way out of balance . I try to keep something in my erbs hand to help balance when I can. I took the pain to overcome what I could from erbs at birth in the 1950s. In general dealing and searching for doctors can be very over hard to do. I never had surgeries, but I hate that by postings here that this happens so much and far to much I think. The doctor should give a referral based on your limitation. Doctors cant leave you with ( Oh There is nothing more I can do)? In the 60s they told me that. but now its worse so many treatments for our limitation. It just me , I would nicely ask the doctor to do the search for you to find the right treatment and a doctor name for a referral. That fits your limitation not what they call it. Hope this helps??

Tom

I have serious scoliosis from my TBPI arm. The arm has no muscular activity, so it is heavier (no muscles to hold it up) and pulls on my neck.

I've discovered that if I have a massage every two weeks, it keeps my neck & spine straight enough to be relatively pain-free. If I go 3 weeks or longer I start to have a vertebrae in my neck stick out that causes horrible migraines and my lower back starts to compensate and hurt.

The massage can't cure the scoliosis, since gravity is always working against me, but it is amazing how much it has helped me.

Heddi

Hi Sarah,

My daughter is almost 1 and we have been going to Akron Childrens for her robpi. We originally went to Cleveland Clinic and didn't like them. In Akron they accept all ages at their Brachial Plexus Clinic. The doctor in charge is Mark Adamczyk and he is fantastic.

https://www.akronchildrens.org/cms/site ... 6eba525e1/

Good luck, any questions just message me!

It was a School Nurse that found my son's Scoliois( non-BPI son ) too when he was 10. He had chest exrays every 6 mos too since birth and nobody saw it until the School nurse at age 10! I still don't get how Docs missed seeing it. Scott, my son had surgury and insert Harrington rods on his spine on his 14th birthday. (he's now 38)
God Bless chool Nurses...[our School Dist has recently elimanated several positions ]
Carolyn J
LOBPI/age 71 & proud