United Brachial Plexus Network, Inc.

Jaime,

I have to agree with Jenny but I was hesitant to say anything since you sound quite certain, but I have been informed that it does show on regular x-rays and others have been aware of it quite a long time ago. It has even been written about, especially in Europe. I know a few specialists that don't agree at all with what you have been told, it is just so DARN confusing, isn't it. It is hard for me to know what to think at times.

Kath,
If you want the scan I have a feeling you can get it. Just think of a good way to convince her that it is necessary. Could you get a bpi specialist to recommend it and write her? Maybe you would be surprised at her willingness to help and if you have established a good relationship with her, that can do wonders. Just something to think about.

I was always told that a bone in my shoulder did not develop. Just like the wrist bone that you can't see. There's know knob on the wrist like the un-bpi arm. My Dr. won't do any X-Rays related to OBPI because he says it is an old injury and insurance won't cover it. My shoulder pain is a lot less in the un-Erbs arm since I had the spinal compression surgery. I also haven't had any ocular migraines ( double vision and flashing colors in a circle) I do have the most horrible aches in both arms--especially when it rains--guess that is never going away.
Get the X-ray, Kath. It would be exciting if they told you you had damage to the brachial plexis LOL
Pat

Pat
I had both shoulders x-rayed. He did not even note that there is a difference between both shoulders.... I wondered who read them at the time, I got a copy of the report that says "reading normal" Hello, look at me don't need an X-ray to see the difference. Also had an MRI of cervical spine -- doctor said nothing unusual just a bit of arthritis... That was before I found UBPN and knew what to ask and I still assumed it was only my arm. I wanted an answer to the pain in both arms but did not get one. The MRI was not properly read and the report does not note the compression nor the cyst/tumor/avultion what every they want to call it - but its there! What if it was not part of this injury -- 5 years it could have grown and then what! Now I request immediatey copies of my films and doctors reports on every evaluation so I can make sure the report is correct.

It's a good thing I took the films because when I had my BPI - MRI in New York with Dr. Abbott - the first thing they noted was the bright spot in my spinal cord and compression. I had the MRI and he was with the radiologist reading them. Dr. Abbott upon reading the MRI immediately consulted Dr.Elowitz a spinal surgeon at Beth Israel. Dr. Elowitz also met with me immediately. I had the old films with me when they compared the results. They agreed nothing had changed... It was scary for a few minutes but due to the prompt attention and having someone with experience read the MRI eased my mind.

About a month later I saw my primary care physician's associate and I asked about the doctors report. She said it was nothing out of the ordinary and that cyst in the spinal cord are common at my age ... duh! Needless to say I will not go to that doctor again... I will wait for my own... Cysts are not normal! Boy was I ticked off...

Dr. Belzberg spoke at Camp UBPN and said when a nerve is avulsed it leaves this type of spot.

I think, the bottom line is, we must be seen by doctors who have experience with bpi... And obpi/adults must have a doctor that is familiar with pediatric impact as well as the changes made to our body as we mature. They really need to understand the pediatric aspect and then research the adult results of pediatric injury.

Kath

Kath,
It really scares me to think that so many Dr's can read MRI's CAT scans etc. in so many different ways. A bone is a bone,isn't it? I've had 2 brain MRI's due to my double vision--they were both totally different. When I asked about it--the answer was well, maybe it wasn't read correctly the first time....or the second time? You shouldn't have totell a Dr. what the problem is. Erb's has to be evident in X-rays and MRI's. My EMG just said consistent with brachial plexis injury. The Dr. was surprised that I had learned to train other muscle groups to do the work of the others. He said with the muscles I have, it's really amazing that I can move my arm to the extent that I can.
What I want to know is --what is injured. What muscles--what groups. Why is it so hard to get someone to find out the exact damage?????????? Argh-h-
Ok, I'm done. Have a nice day! Pat

Pat
I requested a copy of the emg report sent to my primary care physician. Now I know what nerves are injured then I looked it up on the Internet and then had my PT show me exactly how they worked and why so many muscles do not work. I use my shoulder to move my arm -- all movement comes from scapular and shoulder and my wrist moves -- three fingers weak and my wrist is very weak but all the DR. s think I do a fine job of hiding ... most just do not understand that its function and they do not see us function. However the PT I use was very aware of my lack of function and that helped because he understood and would explain how my arm should function and why it could not. That was a very positive experience.
Kath

As Kath indicated, it is important to have a doctor who is experienced with brachial plexus injuries interpret your reports. This is such a complex injury and even those of us with the same nerves injured still compensate in different ways, which confuses someone not well versed in bpi.

Nancy

> I've never had anyone mention that my clavicle or
> acromium is overgrown but I've not had a scan taken
> of my shoulder.
>
> The pain I have had in my bpi shoulder was lessened
> by the mod quad surgery. The pain I now have is from
> arthritis and it is actually worse on the no bpi
> shoulder!
>
> That's just my experience. It'll be interesting to
> hear what the other adults say.
>
> Nancy

BUMPING up for Marion.
Carolyn J
LOBPI