United Brachial Plexus Network, Inc.

I was just wondering how many adult/obpi have ever had emg and mri's ???

I had emg and mri only within the last two years because I asked for it. I wanted to know the full extent of the damage and did not want anyone to guess or just say "its the old injury" ...

I knew how to connect the lack of use in some muscles to my injury but felt it was guess work. After all I had to point out the Horner's and then had it confirmed and I always knew one eye was smaller,my ear canal is a little smaller and my pupil dialates slower...

I finally got copies of my emg and mri. When I called to get results I was told it was the same injury a... Yet when I read the reports I see the extent of the injury... not that I full understand the report I am still looking up words and medical terms since it seems that is the only way I will get a full explanation.

How many others have had these tests and were you given a full explanation?

Kath

kathleen- how about meeting up with the docs at a gathering somewhere and bringing the report with you so they can explain it?

Kath,
Mt EMG report says something like: consistent with old brachial plexis injury. Noone wants to tell me-whether Ihave and bicep or deltoid etc. I can't even get an answer on how severe is the scoliosis? Just that I have it. Or, no you don't seem to have a wristbone in that arm. I want to say-well X-ray it!! I want to know what I'm missing. They act like our interest is like bringing up an okd argument-a wate of time. Pat

Thanks Francine I intend to bring it to NY Picnic but not sure the doctor would be interested enough to explain it!

Pat that is exactly my point.
I think we have to take more control of our health care.

I asked for emg and mri and just recently went to hand specialist and he was interested in my shoulder and my arm... even checked my range of motion and reminded me to check my posture because of the crooked way I sit.. I was impressed... now to get the results of the shoulder xray...

I feel that I am entitled to know the full extent of my injury. I realize that they cannot tell fully at this point what the initial injury was.

The thinking when I was born was that my arm was going to stay that way.
The doctor who took care of me tried something new in the traffic cop brace... it worked for me I move.

I have a case number for treatment from the clinic but don't know if they still have the medical records when I requested them years ago they only released them to doctors. I was not allowed to have them. The law has changed but is it too late for any of us to see them???

Kath

I had a test on my good arm for carpal tunnel about five years ago. I don't know the medical name of it, but it was done with pins sending electrical charges to my arm and then measuring results. I asked the neurologist doing the test if we could test the nerves in my OBPI arm too just for the heck of it. The readings came back normal!I told him I couldn't understand how that could be because of the extent of my injury. He said that the nerves rejenerate but by the time that happens the connections that control the functions are already broken.
I guess I understand that. Does anyone have a similar story? The name of the test would be nice,too! LOL!

-Stephanie

Stephanie,
That was an EMG. They hurt.
Kath, I'm tired of the looks from Dr's that don't understand why I would want to know anything. It's almost like they change the subject.Course, it's not their arm! Pat

All

I was so tired of doctors telling me it was the "old injury." The only reason that they started to test was because I had lost soooo much use of the healthy arm I would not be put off...

I hate when I can't just be nice and tell them what I need. Sometimes when you are too polite they misunderstand... they mistake polite for dumb!!!

Well I had it! I was loosing my healthy arm... both hands are so bad and I was reading so much on the board and 2+2+2 was coming out to 8 ... so I became very firm and just very business like. I did not enter the office without reading all the literature on the Awareness and the internet I could get my hands on....

I know the following were injured= I was paralyzed and my arm was a cold piece of marble and I wore a brace for a year only removed for rom and massage... I had Horner's and today my face is not aging the same on both sides... horner's side less wrinkles and crooked smile... eye smaller... but you have to look to notice... even the first neurologist MISSED IT... it was not noticed until I pointed it out... Just call me 0062....LOL...can I meet 007...ops!

C-4 c-5 c-6 c-7 c-8 & T1... which means it was both Erbs and Klumkies as I suspected from reading...

They did not check my shoulder or back but I suspect that c-4 was also included because I've had problems like being short of breath and spasams in the diaphram... that remains to be checked...

I do not fully understand the junk they found in the mri - I need to read more to understand that...

However I realized that it was no just the upper plexus... I just compensated really well... in fact I received several compliments on "how well I compensated and how it was hardly noticable" Duh no one get's it... it's not vanity!!! it's function!!!

I have copy of my emg...
First Dorsal Interosseous Ulna Nerve c-8 T1
Extensor Digitorum Communis Radial Nerve C7-C8
Flexor Carpi Ulnaris - Ulnar Nerve C8-T1
Flexor Carpi Radialis - Median Nerve C6-C7
Brachio-Radialis - Radial Nerve C5-C6
Deltoid - Axillary Nerve C5-C6
Biceps Brachii Musculocutaneous Nerve C5-C6

Needle EMG testing of the right upper extremity reveals evidence of chronic denervation of selected muscles as indicated above. (wonder why right upper when he stuck me right to the fingers and palm of hand)

MRI
damage at C5-6 & hyperttrophy at Luschka's joints degenerative foraminal impress C-5-6 also decreased signal in nucleus pulposus and disc spacing narrowing at c5-6 and c-6-7 reflecting intrinsic desiccation and degeneration of disc material not associated with visible spinal cord flattening c5-6 and c6-7 posterolateral bulging of the annulus fibrosis with further impression toward the right and left laterial recesses. Bulging annuli at C5-6 and C6-7
The report read no herniated discs... (this mri facility told me that I needed to really have a bpi specialist read it... that was not their specialty)

This is what I would like checked out next... just not ready to do more testing ... But I wonder about trapezius, and diaphragm.
They want to do another emg on the "healthy" arm because of all the electricial pulsing and I feel like I have constant e-stim going on the Scapular.
I have Scapular winging on the right side.
wasted muscle also on right trapezius... These areas appear to be damaged also... need to check it out.
Trapezius Upper
Spinal Accessory Nerve C3-C4 Pectoralis Major

C2 area; motor to head and neck extensors, infrahyoid,longus capitis, longus colli; levator scapulae, scaleni, and trapezius.

C4 Sensory to lower lateral neck andmedial shoulder area; motor to head and neck extensors, longus coli, levatorscapulae, scaleni, trapezius, and diaphragm.

I just had shoulder x-ray and both hands... now can I please have the results!! no still waiting... ok I have to get off my seat and be a bit pushy... I try polite first if that does not work my persistent mode pops in... and then I have no back button... I guess that is how I learned to move by being persistent...did'nt all of you learn to be persistent??? so do it... Speak up ... Ask for emg and Mri... tell them you need some sort of closure and that you expect to get some answers which will give you closure and healing.

Finding out just what is wrong also allows you to make life plans...

I know that the condition of my hands is getting progressively worse... so I reserve them for only the tasks I choose to do and I must constantly remind my self that I need them to operate for as long as I can and only I can take care of them... part of a life plan... that means those who are working must adjust their life styles not to cause any harm to their "healthy arm" it will suffer from overuse but why damage it more by being and over achiever!

The doctor just told me he would correct my hands when the quality of my life was gone! Wow I can hardly wait!!!
Now that I know the extent of the damage I wonder why I felt that I had something to prove to anyone... but I realized I was always proving to myself that I could do anything I wanted... I still do... and I guess that is just part of who I am... or how I overcame bpi...

Example of being to stubborn to ask for help!!!!!!
this week when I was downloading files for my cd-r my darling new puter lost some files... instead of asking for help I read the books and started to repair... I ended up installing a second operating system ... and now I have one that does not work with all my bookmarks and files and one that works... and none of my files.... grrrrr so much for not asking for help.... I spent hours on the phone with support getting my files and now have to wipe out my hard drive and start from scratch... so the moral of this story is .... ask for help... expect help... accept help.... don't be a thick head like me... or you will have more problems with arms, hands and computers...LOL...

Don't wait for the doctor to offer to take tests --- they never will... speak up and tell them you need to know the answers.... you need LIFE PLANS... save the arms and hands for fun!!! ok so you do have to work too!

I will be away next week with my Ya-Ya's ... we go to the beach every year just the "girl friends" and have the men join us on the weekend... We have been friends since we were in our late TEENS...
We will laugh all day... stay in pj's all day, eat cake for breakfast, wine for lunch... out to dinner and no phones... or kids... LOL... I need the rest after this post....

Someone please check my spelling.. but don't bother to tell me I can't spell ... its my bpi thing...LOL...
and besides spell check is not working on my puter...
Kath