ADULT OBPI Study being done by TCH - read & share with all other adults.

[BPPFoundation]

http://www.surveymonkey.com/s.aspx?sm=Q ... 4Qow_3d_3d

PURPOSE OF THIS STUDY

Treatment of the shoulder in patients born with brachial plexus injuries is changing. A more aggressive treatment at a younger age is being performed, but has not shown consistent improvement and in some cases it has resulted in stiffness of the shoulder.

The goal of this study is to find adults who had birth brachial plexus as infants. We are attempting to understand the long-term effects of these injuries on the shoulder. This knowledge will assist in decision making regarding best care for pediatric patients with a birth brachial plexus injury.

The purpose of this study is to survey adults that sustained a birth brachial plexus injury to determine if they have of any remaining shoulder problems such as pain, discomfort or limitation in use.



Please post this link and information anywhere you know to find other adults with OBPI. Thank you.

[Kath]

I just completed this questionnaire and hope it helps.
It's a chance to let the medical world know what happened to us as a result of obpi. Perhaps they will begin to evaluate the full impact of this injury on the entire body. I hope they will learn that we were designed to be bilateral and loosing function causes many complications over the course of our lifetime.

Most of all I hope education of younger doctors will take place. It's time doctors learned that our birth injury does not heal and does have an affect on us and how we mature and age. Lets not forget it's time to acknowledge the pain issue that this injury creates.

I sooooo want a doctor who understand pain and really tries to see what they can do to help... I can deal with the chronic pain during the day but get no sleep at night... So please take the survey it will help the way children are treated in the future.

Kath robpi/adult

[Carolyn J]

Hear hear!, KATH, I took this survey too. I do want all Doctors to learn about our Lifetime of Care for our OBPI'S and "Secondary Injuries" as we age and Over-Use

I hope all adults over 18 will partake in this Survey!!
Carolyn J
LOBPI


Message was edited by: Carolyn J

[marieke]

I did the survey but frankly it is NOT well done! They say they want info on how we are affected in "pain, discomfort or limitation in use." but they don't give enough categories for that ONLY for PAIN. So they don't actually get any info on discomfort (this is not necessarily PAIN) or limitations in use (other than that for PAIN)...

Marieke 33, LOBPI who has NO PAIN but PLENTY of discomfort at times and lot's of limitations in use!

[F-Litz]

Marieke - they just started getting the word out on this survey.... I would highly suggest the you contact the authors - Dr. Gharbaoui and Dr. Gogola and express your thoughts...maybe they can rewrite... after all - they are looking for detailed information and since they themselves are not OBPI - it's just that they don't know WHAT questions to really ask. Please - contact them - their contact information is on one of the screens inside. It's important to get out the full picture of it.

-francine

[Carolyn J]

I agree, Marieke. With us adults there is more limitations, sometimes, than pain and then there are those invisible secondary injuries that affect all of our life decisions; heathy emotional developement and self acceptance/body image stuff.
Didn't the delvelopers read our Adult Message Boards?? That would have given them clues on what questions to ask on their survey...Did they consult at least one Adult with OBPI'S?? doesn't sound like it...huh. we do what we mus,t but it still fals short with no follow-ups included in our "participation" They should come to CAMP 2010 and talk to us face to face.

Carolyn J
LOBPI/70 & cranky sometimes


Message was edited by: Carolyn J

[Carolyn J]

BUMPING UP.
Something is better than nothing.
Carolyn J

[Evan J]

I too took the survey and was surprised at the vagueness of the categories but I thought some of the questions were specific enough. I think that it should be a longer survey covering a larger amount of categories but overall I didnt think it was terrible. Hopefully they can take suggestions, make some changes, and try it again. Just a thought.

-Evan/18/LOBPI

[Carolyn J]

BUMPING UP
THis is important...

Carolyn J

[mkoepplinger]

I'm the Hand & Upper Extremity Fellow working with Drs. Gharbaoui and Gogola on the Survey, and wanted to thank each and everyone of you for your time and suggestions. Please continue to "get the word out" about the survey.

I'd like to hear about any suggestions you have regarding changing the survey. Please email me at:

mattkoepplinger@hotmail.com

Again, thank you for your time and consideration!!



Matt Koepplinger, DO
Hand & Upper Extremity Surgery Fellow
Baylor College of Medicine
Texas Medical Center, Houston, Texas