New here and seeking information and advice

[Angela Butterfly]

Hi Christina

I imagine you will soon hear from Nancy and Kath, they are both adults with OBPI.

I am the mother of a 20 year old LOBPI. I only found this site last summer, and only have internet access over the summers.

It was such a shock to me last year to learn that as my Jill ages, she will probably have pain. I think we both thought that her LOBPI was a past issue. I have written in more detail about her abilities on other posts.

I did take Jill to see Dr. Nath at the chicagoBPI annual picnic in August 2003. He wants to do the Mod Quad surgery. Jill has never had any surgery, and doesn't want to think about her BPI right now. Since she is 20, I have to step back, and just offer my support and knowledge, and then back off.

Since you are age 30, I do wonder what the Doctors told your parents, along the way. I was told to take Jill home, her injury so severe, nothing could be done, ever. If your parents were told that also, the way you were treated by them, might have been their only recourse, if they just didn't know any better.

For me, I have an older sibling, that was not treated right, having also had a difficult delivery (he C.P, speech and learning difficulties). It was only because of him, that I knew to fight for my Jill. My brother was actually denied admittance to school...he deserved so much better, and is smart with good common sense.

All that said. I now know my oldest daughter, age 23 should have been treated for Hip Dysplasia. I had never heard of such a thing. Her back looked funny so I did ask Jill's doctor to take a look, and he said she should have been treated sooner for that too. But her Hips were never treated. Now at age 23 she has had terrible pain for the last few summers, that she is home from college and working long days. I feel terrible. I never knew about Hip Dysplasia.

I just wonder what your parents were told, about your injury. I wonder if they were told the same thing I was about my OBPI daughter. If they were, that might be why your father acted as he did.

I am so sorry to hear you are now having pain.

[kissygoose]

Angela...thank you for your response. My parents were actually told that if I went through testing and physical therapy that I would regain 99% of my use back. I went through many tests and several years of therapy with very little improvement. My mother finally called a halt when my therapist almost broke my shoulder. She was terrified that I would sustain further damage and lose all use of my arm. My father chose to ignore it because he was very displeased with not having a "normal" child. He didn't want people to know that I was handicap and beleived if we ignored it everyone else would. Unfortunately none of us knew that I would develop other problems due to the injury. And of course now because everything happened so long ago and no records were kept I'm unable to get any info. I only know what my mother told me before she died. My father still refuses to talk about it.

[Angela Butterfly]

Hi Christina,

Well, in that case. I guess I would have to say I understand about your dad too.

My dad, my other brothers, my ex-husband (father of all 3) and his dad & brothers, were very selfish. I infact took over the care of my older brother when I was only 18 and he 24. I got away from my ex when my children were 11, 13 & 15. He has been nothing but trouble, and has always made things more difficult. I don't think I will ever understand it.

[Kath]

Hi Christina
Welcome to the message boards. The first thing I noticed in your post was the lack of information. You may be able to contact the hospital you were born in and they may have some information for you. You could also try the hospital that you received treatments from when you were a child. Some folks have gotten old birthing records.

I have never had any surgery but recently two or three younger adults like you have had surgery and gained more movement and less pain... I hope that some of them will check in if that is what your are interested in.
Read some of the Awareness material if you would like to learn more about our injury.

I am 64 robpi and a mother and grandmother. Most of my life I did not speak about this injury because my parents died when I was young and no one knew what I was talking about... well if you have any questions ask away. No question is silly.

I am so glad you posted and found the rest of us.
Kath aka Kathleen M

[kamren]

Your story sounds sooo much like mine!!!! When I found UBPN I was looking for exercises I could do on my own that might help with my declining use of my left arm. I never had alot of use, but it was to the point I could hardly move it at all. I was SHOCKED to discover that they could actually help (I had just been told by my Dr that I just had to live with it, there was nothing to be done.

I found Dr Shenaq. He has given me movement I have never had. I had the Mod Quad done in April. Now I can put a ponytail in!:) That was such a big deal to me. I can play the guitar and hold it properly while doing so. I can almost swim. I can put my hand on my husbands shoulder without having to fling my arm up there (and him having to watch out so he doesn't get smacked in the face!:) ) Monday I lifted my arm above my head by itself for the first time in my life.

Find a Dr here at UBPN that specializes in BPI injuries. Go to him and see if he can help. Additionally there are PT who are experienced with BPI injuries. Where I am going I see many different PTs each time I go. But the head lady has had one other BPI patient....A child. Everyone is absolutly amazed at how quickly my arm is recovering movement. It is just a miricle.

[rachelcasa]

Hey there,
My name is Rachel and I am 32 with lobpi. I don't have much time this morning however, I just wanted to let you know that you are not alone in this venture. I had surgery in Sept. of 2003. My arm was shrinking and paralyzing itself and was 3 inches shorter. The pain was unbearable at times. I had the mod quad surgery with Dr. Nath and it is a lot better now. I still have a lot of neck pain and muscle spasms I think due to overuse of it. If i sit to long I hurt, stand to long. There are some days where I just need to lay down. If you want to talk feel free to e mail me here at home. It's not a problem at all. Where are you from? I wish you the best of luck and welcome to the boards!!

[kissygoose]

thank you everyone. I'm still a bit overwhelmed. I'm having trouble getting medical records from the hospital where I was born because it's not there anymore. I'm assuming it was renamed but I just don't know. And unfortunately my father is no help. He also doesn't remember who did my treatments way back when or who the Dr. was. But the dr was old when I was delivered and is probably dead now. So I'm pretty much starting from scratch. I'm reading up on what I can and I have to admit I'm terrified of the thought of surgery. It's also very bad timing because I'm undergoing infertility treatments in order to get pregnant. I mean how would I manage to have surgery if I have to chase a toddler? But it also frightens me having the thought that I may not be able to pick up my children if things progress. I've also noticed that I'm getting more and more pain in my right hand especially the wrist and thumb joint. How long does it take for all of this to settle in?

Rachel, I live in Central PA.

[kamren]

As for chasing a toddler after surgery....My youngest was 15 months old when I had mine:)

[admin]

Dear Kath,

I'm new to this site and I'm looking for obpi people of maturity to find a proper medical source. I am 63 yrs. old and have recently had arm and shoulder pain. My ortho sees arthritis in the shoulder and even though he's "mature", he hasn't seen a obpi my age. He referred me to the Mayo clinic to a shoulder specialist. Without going into details, I need to find someone who better understands this injury. Where do you recommend I go for a consultation. I live in SD, but insurance willing, I could go anywhere. I have found info about Dr. Nath, but it would be nice to find a clinic closer to home.

Thank you. Please tell me more about your obpi if you won't mind sharing. If you're interested I can go into more detail about my life with this "inconvenience".

Linda in Sioux Falls, SD

[tnmoore]

Hello and welcome to the message boards. You will find lots of information here. I am a 32 yr old with LOBPI and I was told there was nothing that could be done either and so everthing for me came to a holt at an early age. My shoulder muscles are tight, but I do seem to have pretty good range of motion. I am able to put my hair up and I think that was why my parents never pursued any surgeries or interventions. My biggest problem has been a severe elbow contracture, and decreased external rotation. After much research, I believe I have found a surgeon to help with my contracture. Dr. O'Driscoll at the Mayo Hospital in Rochester, MN. I am planning to have surgery with him in March 2005. Whatever you decide- research and research some more because the more you can learn the better the choices you can make for yourself and your future.