United Brachial Plexus Network, Inc.

Hi everyone,

My name is Staci, I am 25 years old and have a ROBPI. I am scheduled for the Mod Quad Surgery with Dr. Nath in January. I'm very excited to see what benefits I'll gain. After going my entire life being told by doctors that they've never seen anything like this and there's nothing that can be done... finally maybe there's some hope.

I work as a News Producer for a TV station in SLC..KUTV (CBS affiliate). I recently told my managers about my injury.. and that I'd be taking some time off work, etc when I have surgery. I also mentioned it would be a good idea to to a "Healthy Living" story about brachial plexus. They were amazed when I told them about my arm and how I've compensated, etc... and couldn't believe how self-conscious I am about it. So we're totally going to do a story and I'm really excited because I think more people need to know about it.

This is where you all come in... there are so many different angles... from awareness to treatment... malpractice... and the controversy over surgery on adults...etc, etc. Give me some feedback.. what you think should be covered. It may be a 2 minute piece.. or we may do something bigger during "February Sweeps".. and do several segments.

Let me know what you think...

Staci

Don't forget prevention...for OBPI!

http://ubpn.org/prevention


great info on there

Could totally go on about the cost to the healthcare system because there are no real efforts for training and education of docs to prevent this leaving children andtheir famalies fighting for health coverage for surgeries, therapy and then the result of secondary whole body ailments resulting from the injury


Good luck!

-rich

staci I bumped an article from the last reporter.

Rich, you wrote: "result of secondary whole body ailments resulting from the injury". What exactly are you talking about here? Do you have some insight, some information about long term affects? I would appreciate it if you would elaborate.

Scared

Scared,

If you want to learn about long term effects, go to the adult obstetrical forum and just read. We openly share about these long term effects from our experience of living with this injury. A lifetime of compensation does take a toll on the rest of the body.

Staci,

Bravo for you, both for bringing awareness of the injury and for making a decision to undergo surgery. I wish you the best with both! I had the mod quad in my late 40s and it proved to be quite beneficial for me. I know other adults have had mixed results from this surgery, but it worked for me and I am glad that I did it.

Nancy Birk
UBPN President

I feel that I have been fantastically misinformed. Nancy are you suggesting that I will learn more about the long term affects of an infant BPI at the Adult Obsterical site? I thought that site was dedicated to BPI's that occur in aduldhood? So are you saying that all infant BPI parents should be advised that they should seek long term information at that adult site? And what exactly do you mean that compensation will take a life-time toll? Do you have insight as to my child's long term hardship? If so, I think that you should really share that information.

scared

Staci,

this is very exciting! Please keep us up to date on everything.

Peggy

Scared,

If you read any of the literature out there about BPI, you will understand that the injury (if it does not fully rcover in short order i.e. 3-6 months) then there will be secondary conditions that will predictably arise due to the injury, limb legnth shortening, decreased range of motion, frequent pain and arthritis in the unaffected limb (due to over use), neck pain, back pain, even leg issues since the normal gait pattern is changed, causing wear on the joints that s different than what is "normal".

Of course this is only what I have gelaned from articles and reading these boards. I would only suggest that you talk to a medical professional for the specific injury that your child suffers, and not try and take medical advice from this forum.

Most offer their experiences which will differ for any two people

good luck with gathering info

-rich

I have read every word that is available on the infant BPI. Further I have asked my child's doctor every question. I am not a silly person. I have taken great measures to be informed.

This forum is a Soap Opera, exploiting so many lives and very emotional issues....

Scared,
The Adult Obstetrical Forum is not for those who incur the injury later in life, that is the Traumatic Brachial Pleus Injury Forum. I think it is clear in the title of the forum -- Obstetrical Brachial Plexus Injured Adults. It is mostly used by adults like myself who have had bpi from birth, hence 'obstetrical'.

Yes, you can read that forum and learn what adults who have lived with this injury for a lifetime have experienced. We are pretty honest and upfront about our experiences, not to 'scare' you, but to be open about what we have and are still experiencing.

Nancy