What surgeries and treatment are there for adults

[Andrea53]

Since I found this site I've been reading about all the things they can still do to help keep us stable or improve on what we have.The thing is what are they.Is there a dr bin N.C.for adults?I see a neurosurgeon but all he says is we can try to keep me stable.What exercisesare there?I have obp in both arms.Left side is limp but can use hand fairly well.Rt hand getting worse but can lift arm a little.Biggest problem is losing what I have from overdoing and pain.Any help would be appreciated.Thanks to all of you.What a blessing to talk to people who understand.

[painful]

Hey, See Medical Directories updated list on page 2. I looked and there was none listed in N.C.. I live in S.C. looks like Georgia is the closest to you and myself.

[Angela Butterfly]

Dear Andrea 53
Hi, I am the mother of a 19 year old obpi. I just found this site 3 days ago. Have been accessing others too.
Here is what I found at the ubpn.org web site under Medical Resources, please read the Questionnaire response from Texas Children's Hospital Brachial Plexus Clinic. Several questions in, it addresses the TCH philosophy regarding treatment of adults 1? for OBPI and next for TBPI.

Then at www.texaschildrenshospital.org/carecent ... count.aspx Please read A personal account of surgery at Texas Children's -- Editor's note: we at TCH performed a Mod Quad procedure on an adult patient OBPI, age almost 50.

Hope this helps. I have been celebrating that my 19 year old is fully functional and now I realize there might be future problems. Born in 1984, her injury was severe and affected her entire Left torso, shoulder, arm, hand & fingers. I was told by her specialist at CMH, Chicago, when she was only 3 weeks old, her nerve was avulsed, and that she would never get good enough for surgery, since nothing to work with. I begged for Therapy and would not leave his office, so he complied. Thank God for Martha E., P.T. (she ordered a wrist brace)then recorded "0" near every muscle on the long list. I continued training and did her O.T. at home daily for hours & hours, over years & years. SUCCESS We fooled a lot of doctors and several O.T.'s along the way. She continued to improve way past age 2. I just kept going back and showing them her improvements and asking for more help. She never did have any surgery. She can even put her own hair up into a ponytail with 2 hands! In fact one of her later doctors took a picture of her to publish in his next book, because she was rare. He was also an instructor at Northwestern, Chicago, Dr Mihron Tajdian. Unfortunately he died suddenly in 1996 and I don't know if that book was ever completed. My daughter & I were recently discussing that issue...did that book ever get completed?
Good luck to you. Hope this info helps --- Angela

[Angela Butterfly]

Andrea53
Have you been reading on the TBPI side of the message board. If not please see Surgery has anyone had success. There are 456 postings. I imagine you have seen this, but just in case, thought it worth a mention. Good Luck

[Dean-na]

Andrea53:

I am 31 ROBPI. I found this website in May of this year. I contacted Dr Nath in Texas (@TCH). I have been thru a lot of emotions lately with insurance & etc, but I am scheduled to have surgery on 8/14/03 with Dr Nath.

I never thought there was any hope, but just keep searching. Dr Nath has also recommened 2 more surgeries after the one in August.

Let me know if I can help in any way.

Take care,
Deanna

[Cliff]

Hi Andrea53,
I spoke with a specialist in New York over ten years ago about getting surgury to improve the use of my left hand. He said that he could rearrange how some muscles in my hand are attached, so that I would be able to move my thumb. I opted not to have the surgury. They weren't doing nerve grafts in adults when I saw this specialist and I don't know if that has changed.

[Kathleen M]

Andrea

I just read this post on the General Board and I am sure they will Welcome adults at their gathering....
http://ubpn.org/messageboard/thread ... hread=6331

Three and a half years ago I could not move either arm... I was in so much pain... my right arm OBPI had the shock type pains... the deltoid and biceps we tender to the touch... awful...that started my research. My left so call "unaffected arm" was in constant pain and I was getting no sleep with the burning and my hand was stinging I could not raise either shoulder not even to shrug... I was a mess and on top of that I lost on the right obpi arm what was MY range of motion... I was sitting in a position for comfort that I knew was forbidden as a child (thumb in arm curled against my chest)I was scared to death because the doctors kept offering me pills I tried to explain that I was loosing my range of motion but they did not understand that every little bit helps... I found ubpn read all of the material in Awareness pertaining to babies - that explained a great deal to me. Many of the parents took the time to educate me on many things that I did not understand. I did not understand the terms supinate, pronate and well you know there are so many.

It was a long slow process. I had and emg and mri (I now find out the mri was not properly read) I was sent to PT and started to check them out I did not want someone who had never treated any one with my injury. Well I finally found one who read all of the materials look up his notes from school and began the long slow process of helping me regain my former range of motion.. and of course ease the pain... I went to a local hotel for the use of their Hot Tub without jets on and did stretches in the warm water (we need water above 92 to work in) I had 30 visits that year and began to feel so much better... then I walked through a door way in a rush and that darn door way jumped out and whacked my obpi arm ( I am sure you understand) that time I injured my left side and once again I was back for a long round of treatments and much fighting with my insurance company but I did get it and was fine for a few months then I pickup too many things and forgot that I can't do that anymore and back I again to PT and this time only 15 visits and I am back to a the best range of motion I have had in years.. and less pain...
We recently put in a Hot Tub on our deck I keep the temperature lower because I go in every morning and every night and do my stretching and range of motion as best as I can. When my neck and shoulder hurt I go in with jets on mild and again find relief. I don't feel that pills etc will ever help me.

When I was young my family doctor gave me regular b-12 injections and insisted that my mother give me B-complex vitamins... I had to take B-1 also for many years. Of course I did not take the shots for many years as an adult and doctors do not feel it does anything. I disagree and feel that B-12 shots are the reason my right arm stopped getting the shocks and shooting pains and went back to being back brain... I insisted that I wanted them and of course my pcp thought I was crazy but finally she agreed... my next visit she was amazed at how much better I looked and felt...
So Andrea that's it in a nut shell... LOL... or from a nut shell I am not sure which.... I hope it helps you...

Find a BPI specialist... write to them most will answer your questions... Some do not see adults.
I found that a pediatric bpi specialist truly understood my questions and was better able to answer me. I was examined by Dr.Abbott in NY just recently and it was a very good experience for me and I am glad that I finally did it. I had another MRI there that was done just for the brachial plexus.
Kath

[Andrea53]

Thanks to all of you for the advice.I an going to check some of the other websites that were mentioned.I had three s8urgeries when I weas young.One was a muscle transfer from right upper leg to left shoulder.Did not work'No.2 was a pulley type.They tried to connect tendons from left wrist to elbow.Didn't work.Last surgery was a shoulder fusion.Did'nt work.They were on the right track but it was 40 years ago.i refuse o give up.Right arm als.BP is getting weaker so I need to do something now.It also seems I have the worst kind.The nerves were pulled fom spinal chord.Thanks again.I don't know what i'd do without all of you.

[admin]

hi im 30 with robpi(im not sure of initials), actually im not sure about much when it comes to my arm. i was always treated as if i had no disabilities and noone ever asks me whats wrong with my arm....anyways this is the first time im writing anything here and i just found the site aug 8th...i woke up one sunday morning and decided to look up herbs palsy and this is where i landed...i was hoping for a chat room,,,i have no idea where this message will end up but i would actually enjoy corresponding with others who have erbs palsy just because ive always felt i was the only one....ok lets see maybe i will give my email address but i never open them unless i recognize the subject soo please write to me and put herbs in the subject box....ok thanks...here goes nothing.....lol... suzanne2234@hotmail.com
boy i had sooo much to say, i didnt realize how open i would be....

[Andrea53]

Welcome!I found this site the same way you did and it has been wonderful.You are not alone which is what I always thought.No one had erbs.I have erbs in both arms.My right was never diagnosed until seven years ago.Doctors thought it was all in my head.I don't like having it in both but at least I know i'm not crazy.Ask any question you want and someone will help or send you where others can answer your question.Again welcome.Andrea