United Brachial Plexus Network, Inc.

Hey guys,
I haven't been on here for a while and I have quite a few questions.
In the last year my arm has seemed to have gotten worse. We started going to different doctors trying to get help on what to do. Almost every doctor we have went to has had a different opinion... Who do you go with? We recently went up to Cleveland Clinic and saw Dr. Harry Hoyen. Basically, he said that my BPI is unique and there's not much else they can do for me. Has this happened to anybody at all? I feel like it's just me...
Also, does anybody think that scoliosis is related to BPI? One doctor believes it is, another doctor doesn't think so. I was diagnosed with scoliosis this year. And it's pretty significant. My mom is a nurse, and she believes it can be due to bad biomechanics? I think that was the word.. Anyway if this kind of thing has happened to anybody else please let me know.
Thanks,
Sarah/ROBPI/13

Hi Sarah,
Yes scoliosis is related to "bad mechanics" due to the BPI. I have a mild case of it, others here have been diagnosed with it to.

Marieke 34, LOBPI

Sarah

I have mild scoliosis and did not know it until I was past middle age. No doctor bothered to tell me. I believe it's part of bpi and your Mom is right.

I was told many time that my injury was rare and different. Each bpi seems to heal differently.

Have you checked the Resource pages here for a BPI Specialist. If you want a good evaluation you really need to see a bpi specialist.

You are still young enough to be seen at Shriner's Hospital in PA and it will cost your family nothing to be examined.

Kath robpi/adult

I have what they call "significant" scoliosis I guess. I have seen two different doctors who specialize in BPI. I recently went to cleveland clinic to see harry hoyen. He Basically told me there's nothing else they can do since my BPI is "unique", that he isn't sure if the scoliosis is related to my arm, and he told me I need to see a back doctor. My mom and I have been very frustrated.
I'll have to let her know about Shriner's Hospital. I haven't gone there yet.

Hi Sarah,
I dont have a lot of time right now but I want to throw it out there that if you and your mom want to talk, I have lots of info for you. If you are interested in calling me email me at hope16_05@yahoo.com and I will get you my number so you can call me.

I dont have scroliosis but lots of other back issues bpi related. I also have shriners experience that I can share with you.

Sorry I dont have the time it takes to write everything out here...I am in grad school and its killing me!

Welcome to the site!
Amy 22 years old ROBPI from MN

I believe that scoliosis is definitely a "side effect" of an OBPI! Personally, the bones in my left shoulder deformed as I grew and that side is hiked up, which throws my back out of line. You can actually see how my spine curves if you look at my back. I am sure that this is where a lot of the back pain I've had in my life comes from, because if your back is out of line, it stresses the bones and muscles and you end up with back pain.

I said something to a doc about it one time and described it as "secondary scoliosis" resulting from the injury. He quickly told me "There is no 'secondary' to it. You have scoliosis. We just can't do anything about it." Meaning, the braces or surgeries that are usually used to treat scoliosis would be useless for me because "straightening" my spine without screwing up my "good" should just isn't possible.

I have found relief with chiropractic treatment. It helps keep my spine and the muscles in my back loose and in line, which helps with back pain that I have.

Since you're just 13 and still growing, there may be treatment options for your back issues that aren't available for use old chicks. Also, treatments for everything - including OPBIs and scoliosis - have gotten better than they were when I was your age - which was about 100 years ago!

Lisa
LOPBI/41

P.S.
I don't know if they still check for scoliosis like they did when I was in middle school - where the school nurse has you take off your shirt and bend forward so she can look for a curve. They always did that after gym class for us. Every year, our nurse - who I think was about 90 and had forgotten how embarrassing EVERYTHING was to teenage girls - used to always call everyone over to look at my back and announce "Lisa doesn't have scoliosis - she has a crippled arm - but this is what scoliosis looks like." I used to think I was going to DIE when she did that. I swear, if I'd know ahead of time what day she was doing it, I would've pretended to be sick so I could stay home that day!

Sure enough being one of the old guys here. I was so off balance with a good arm that look like small elephant truck. I had grasp in my erbs hand so I trying to find ways to care things when I could. simple to try when you can it streach the erbs. In the 1950 , There was no treatment and now there is so may ways?I m sure in time doctors will find a way. I know that picking the right one maybe harder to meet your needs, Thats the point to me , It has to fit your limiations and a possive outcome, I think its great a lot of you say what work for you, Very Inportant to me. Ok I will get of my soap box.

Tom

I would talk to your mom about Shriners in Philadelphia and try to get into see Dr. Kozin for your arm and you can also see someone different for your scoliosis as well there. You could have your mom also e-mail Dr. Kozin and he will answer any questions you have as well. His information is on the resource page here. We live in Texas and have seen him several times as well as other BPI doctor. My daughter is 13 as well and has scoliosis, some doctors will say its related to BPI and some not (I feel it is) either way it needs to be monitored. She goes to the orthopedic for x-rays about every 8 months to check for changes.

Best of luck.

Hi,
I live in the Cleveland area and have not ofund anyone who is a BPI specialist. I have been to several orthopedic and plastic surgeons for one thing or another and only one time did a Dr. indicate he could fix SOMETHING.
He asked me if it was more important to lift my arm above my head or turn my hand over. I didn't persue it--at the time, I was more concerned about the osteoarthritis in my hands that prevents my fingers from bending--
Anyway,his name is Mark Hendrickson, if you are interested.
Good luck
Pat

Lisa,
My bones in my right shoulder seem to be messed up too. When I went to see Dr. Hoyen he kept looking at my right should saying... "Something just isn't right. This is so strange" and so on. He says he's not sure if scoliosis is related to BPI. Like you, my mom and I believe it definitely is. Especially since I play basketball, there's even more stress put on my back since I use it to help move my arm.
Anyways I go to the chiropractor too. It's great! I've also started using heating pads like 24/7 to help relieve the constant muscle spasms I seem to have.
And also what you said about the school nurse was hilarious!
Luckily, my school nurse isn't 90 years old, and when she checks for scoliosis she just checks you out alone, nobody is around. The funny thing is.
The school nurse was the one that figured out I have scoliosis. After 13 years, not one of my doctors thought it was necessary to check for scoliosis. I think that's outrageous. I mean I know that I obviously didn't have it when I was younger, but you think they would of thought of checking?
No! HA! It was the school nurse!
Even though they can be embarrassing, and old in your case, they sure come in handy. LoL!
Everybody else,
thanks for the replies too! I'll definitely let my family know about the other doctors.
I'm actually going to a back doctor tomorrow! So excited!
Sarah/13/ROBPI