United Brachial Plexus Network, Inc.

How many visit this board on a regular basis but do not post anymore or feel uncomfortable asking questions that sound silly?

This message board is for us to share our feeling regarding growing up obpi and the challenges we face in a society that does not recognize us has having anything wrong. And the medical challenges we can possibly avoid in the future by learning from each other and from reading all of the Awareness Materials. Many of us have just begun to go back to PT and using other holistic methods for pain relief due to overuse yet we never realized it was overuse causing the problem. We must be our own long range study.

While the majority on this obpi/adult/teen message board have not had surgery nor on going medical treatment we still have problems that relate to our personal injury. Most of the time it is a matter of connecting the dots...

It is also important to remember that our unaffected arms should and must be protected from injury. Overuse is just around the corner for many and for some of us we have already damaged our unaffected arm because of a lack of knowledge on the need to preserve the use of the unaffected arm.

Any one else beside Tina and myself have trouble with our eye glasses? Or loosing remote's or keys ...
Any one have problems with balance... Those who shared on this board on a regular basis a while back helped me to connect the dots pertaining to my personal injury so I thought I would start a post for those who have not connected their dots yet.

Kath

Kath~~

Speaking of connecting the dots and eye glasses!!! Just got my new pair. STILL can't see any better, then with the last two pairs!!!!!!!!!!!!! The guy said there's nothing wrong............I SHOULD be able to see better. GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR

So much for that!!!

Hi Kathleen
I am a male 48 y/o l/o/b/p/ injury (rupture at birth) My left has about 15-20% use. it was behind my back at birth and surgerys at 7, 14 and 21 have it so I can see it and have some use.
I have successfully screwed the reast of my body by proving to everyone that anything they could do I could do if not better. There are very few sections of my body that have not been broken, bruiced, banged etc. I am on first name basis whit the emergency dept. like Tim the Tool Man.
I could not help but notice your comments on balance, eye glasses, etc. Has these problems been linked to B/P injury and if so is ther any studies that show this. Doctors do not believe it exists if there is no write up in the American Journial of Med.
These are some of the problems I am having along with left side of my face feels like novacane since X-Mass, left leg keeps screwing up, lower back is spasmed to hell along with my left leg, left eye drooped and twitches like hell sometimes, etc
I am seeing a nuro. and an ortho. and have had an MRI on my shoulder and C-Spine with a followup April 16th. on my pea brain, They think I have MS.
Glasses are a curse to get correct, just recieved new ones and the right lense seems scewed up and this happens every time with one eye or the other. My balance is the shits, I have been of work since May/02 and use walls, shopping carts etc to assist in movement.
Just a thought, could this be related to the B/P injury
Thanks
Mervin

Hi Mervin

Welcome to the Boards glad you posted. There are so many thing connected to this injury it really takes time to stop and pay attention to our body to learn all of them. You can begin by reading the Awareness information on the Home Page. Although you have had three surgeries so you must know more than I did about our injury.

I almost started to laugh when you said that you messed up the rest of your body by proving to everyone that you could do anything anyone else could do and even better.
That seems to be the theme song for obpi kids We spend most of our lives proving to others we were just the same as they are but I think now we were really proving to our selves that we were just as good as those who had two good arms and hands. And now many of us are paying the price for our vanity because we are suffering from overuse or cumulative stress injuries. But many of us have been able to accomplish so much more than was expected of us or anyone imagined we would ever do . I think it was our determination and stubborn nature that saw us through.

Horner's Syndrome-. if your eye droops could it be because you had and injury to T1 also your face will not sweat on that side. I discovered it when I saw that one side of my face is aging more than the other. I found it quite interesting so I take all photos from the right side. LOL LOL. There is also a loss of feeling on the right side of my face I guess its connected because I know I have Horner's ( of course my Mom blamed the smaller eye on my Dad’s side of the family when I asked) One way to check to see if it was present when you were a child is to look at old photos and you will see one eye is smaller. Also your pupil will not dilate the same in fact it is slower to adjust to light. Which could be a problem if we were in an accident the ER staff would think we had some thing wrong with our brain. I guess many of us should wear medic alerts. I keep thinking I am going to order one but then I forget about it until a post like this comes up.



If they suspect MS you need all the tests and hopefully it will not be MS... This must be ruled out as the cause of your medical problems. That is very important.

Notice that all your problems seem to be on the left side. Balance seems to be a big issue with bpi injured. We loose the reflex to put our arms out to protect our selves when falling and we are a bit off balance. Some people say that they have no depth perception and I know I have no body boundary on the right side that is why the darn walls are always jumping out and hitting my elbow or I poke someone with it.

I hope some of the other OBPI/adult will jump in here and help you.

Welcome again
Kath

Tina

The Adventures of bpi and glasses -- I bet we could write a book...but then we could not read it... LOL

I bought glasses last August they give me such a headache and the right eye is blured so I can't read with them... but the doctor says they are perfect so I guess I can see out of them but just don't know it...

It will take two years for these to catch up to my eyes.. He gave me contact lens one a higher strength then the other... I could not see I have always worn the same strength on both eyes... well you guessed it I can't see again... so I just wear the same number on both eyes and I am in balance and can see again... since I am in control as to which contact to put on my eye...I can't win when it comes to glasses...

My family makes fun of me all the time ... they never saw anyone have so many problems with eye glasses... and they all wear glasses

Now I will have to introduce them to you so they know I am not the only one... LOL... but its not funny... LOL

Kath