United Brachial Plexus Network, Inc.

Just recently I have had some serious issues with my spine. I have spinal stenosis of the lower back L1 thru L5. I have been in therapy for the last few months and was talking to PT today. I have always noticed that one leg is smaller (thinner) and it seemed to be a tiny bit shorter. I know my foot is smaller just as my hand is. I have what seemed to be a lack of full range of motion in my right ankle... so I asked him about it... he measured and my left foot flex is 12 and my right foot remains at 0 or netural... once again proving it's not just an arm...
At least I know I am not crazy.

I assumed that my back was bad because of the muscle imbalance and added to that I have had three children and all three were large babies... Now, I think it maybe because of the compensation combined with the normal wear and tear of pregnancy... anyone else have lower back, leg problems?

Kath

Hi Kath,
Yes, I have everything you mentioned except your lumbar thingy.Back pain,in the small back area comes & goes and I believe it is all related to the spine not being aligned right,shortness on whole left side, & over-compensation of whole right side. I sure wish someone would do a study of a number of us adults and document our "similarities"....
Have a good weekend all,
Carolyn J

Well, you know I had cervical spinal cord compression and now have a titanium plate in my neck. I also have a herniated thoracic disc--which occurs only in 3% of the population, spinal stenosis in another cervical disk and also lumbar -- I think L-5 and S-1 along with a lot of disc degeneration and arthritis.
The Dr. told me Erb's has nothing to do with it.
They tune me out when I say imbalance, overcompensation etc.We all know better. When I told them about UBPN--the Dr. said--how many people are in that organization? There are thousands out there who have no trouble at all as they get older. Yeh, right!!!

Pat
If there are thousands out there how come we never met them? Up until 5 years ago I never met anyone with OBPI... nor did most of my doctors.
Ask him if he can put you into contact with some of the thousands?

I think you should get some copies of Outreach and give them to him.

How can you twist a babies neck and tug and pull on the spinal column and not have the total spine affected?
What about compensation it has no impact? I guess OBPI are the only population where compensation does not take a toll...
Answers like that make me crazy. I must be getting old because I don't let them go anymore I address them head on. I will not accept that type of off handed untrue statement anymore they are insulting.
That's they type of answers my mother got when she questioned medical care... everything was a secret then including our medical records.
Kath

Kath,
I sent you of picture of me in my Erbie splint at 5 months. Can't seem to convert it to a jpeg file to post--don't know why.
I just quit going to the Dr. I offered the outreach and I heard an under the breath comment about people who think they know everything. It just amazes me that we can't get someone to do some clinical trial on adults and the effect Erb's has on the entire structural system. I know my arthritis ,carpal tunnel, scoliosis and spinal stenosis comes from Erbs. I'm sure a lot of other body systems are affected also. I'm wondering about vision. I'm the only one in my family tree that had to wear glasses at 5.
Am changing Dr's to a different hospital system. It will be interesting to see if I get some different opinions from a new Dr.

Yeah you guys!! I am printing out this whole Topic page/s to present to, and have handy for, my present Dr. and all future Dr.s I'll see & consult in the future. Here it is, all in black & white!! I isn't just me!!!
Pat, please let us know what your new medical Doctors/consultants say. I do recomment printing this topic page/s out & take it with you to all appointments; they might listen to you better! Here's hoping.....
HUGS,
Carolyn J

Hey everyone! Oh my gosh! I have had TBPI for 2 years and am having problems with my lower back, neck, hip and knee problems! As a medical professional, I know that the human body is based on symmetry and so do the doctors! If one body part is off even slightly, it affects everything! Someone definitely should study OBPI's, and the cumulative effects.

Amen to that! But no one is interested in studying the long term issues we face. I guess it some of them are proven it will come back to lawsuits and the $ awarded to children who are injured.

OBPI population are really IGNORED by the medical professionals. I guess they think we are cured or perhaps use to it... Sometimes it really gets to me. Medical professionals don't like patients to tell them their business... Yet they don't take the time to study us when were are their patients. When I buy a new plant I try to learn everything I can about it... I think many doctors don't want to take the time to put two and two together.

It is rare when a doctor asks how this injury has impacted us or how dealing and living with it affects our daily life...

Thanks for commenting on this problem.

Kath robpi/adult

I don't even know if I was a teenager yet when my back locked up sort of and I couldn't move. I have never known any other 12 year old to have lower back pain so bad they couldn't move. Now looking back I think most of my lower back issues were connected to my back pack or something because though it still comes and goes it hasn't been as frequent as when I was in school. Wish we had those wheely backpacks back then. Also I'm more aware of my movements. I use my lower back to help me reach...I told someone once that I know it was due to my BPI, she said no you're just getting old. I was 20 years old...

I also get sciatic pain down my leg. And if you are out of alignment your leg will be shorter. I've known lots of people that have had that too. Or maybe Chiro's just like to tell people that...who knows.

-Traci

I have arthritis in my lower back, right hip and right knee. The doctor I was seeing for a while said that those are all side affects of compensating for my LOBPI.