United Brachial Plexus Network

UPDATE!!!!!
Wow, still getting email about the study, which is great, but I have actually moved from Rochester and am now no longer helping out. I would send any inquiries to the Mayo Clinic in Rochester , Mn.
Also, I sadly closed the videos down because it was brought to my attention that they could too easily be copied and reposted without my permission and they were just meant to be viewed on this site alone. A bummer.
Take care all.

Angela-
I am interested in participating. I live in Baltimore. NY or DC more convenient for me than FL. Are there others in my vicinity who wish to participate? Please let me know how to proceed.

Extremely interested....I am 39 & am a OBPI. Had a total of 3 surgeries (first one in 2004). Have some other issues that I'd like to discuss with the dr's at the Mayo Clinic & have no idea where to begin.

Thanks,
Deanna

Wonderful ladies! I really hope you will be able to participate. Please email me questions on the email address I provided in the initial posting so I can more personally get everyone's needs known so I can hopefully either organize a few meeting places that are convenient for everyone or see about individual meetings.
Thanks. Ang

I'm interested in joining this study. I'm 71, no surgeries and very disappointed in the fact that the medical community does not understand this injury.

I attended, on behalf of UBPN, Disabilities Across the Lifespan Conference at the NIH a few years ago.
They were shocked to learn that "we" OBPI adults did not have on going care once dismissed from pediatric care. They were also surprised to learn that those who had surgery had some coverage but the rest of us were just told... "that's as good as it gets". For so many years nothing has been done regarding education of doctors on the care and treatment of OBPI injured teens and adults. Many pediatricians never even mention our injury. I often refer to my arm as the "Elephant in the Room." Most doctor never even mention it or examine it.

I hope that this will be a study that will produce a care plan for adult/teen/obpi in the future. If it is just a study that is read and cast aside it would be so sad. It's time that the medical community did something to prevent secondary injuries and overuse. It has been my experience that many PT/OT people do not know how to treat bpi or have a full understanding of this injury. Many of them use tools that are great for various other injuries but do not even realize that cross body movements torque the spine on a regular basis and later in life we pay for that encourage movement. We need some protocol that is strictly geared towards bpi birth injured.
Thanks for working with the doctor and trying to get this off the ground. He sounds like a really good person to undertake this challenge.

This will be a wonderful tool to begin to educate the medical professionals on the care and support of adult/obpi. We survive but are often neglected medically.

I have many MRI's and xrays that I would be happy to share. While I am 71, treatment began at 2 weeks old in New York Hospital. I have one record or case # but have been unable to get hold of the records.

Hello - I just emailed you. I am definitely interested in participating. I am a lifetime LOBPI and would like to become more involved so we can see these avoidable accidents from happening in the future...

Update

An excellent question was emailed to me asking if people who participate will also recieve an evaluation or will the info just be written up in a study and they will not have access to it. Here is the reply from Dr. Elhassan:

"I'm willing to evaluate and give my recommendation about potential treatment to any patient who requests so. This is one of the main reasons I decided to see all patients myself"

So just to sweeten the pot a little, though the participants must pay travel expenses (travel, room and board, food, etc), it is a chance to get a free evaluation by a Mayo clinic BPI surgeon. This type of consultation usually costs around $500 and many people can't even get the the referral to get the consultation so this is a rare opportunity for many of you to get a free consultation from a Mayo BPI expert and also, hopefully, helps justify some of the travel expense.

Count me IN!!!!! I am so excited for this study! I have talked to Judy some so she knows I want in on this. I am willing to drive down to the Mayo as its only a 6 hour drive from northern MN.

Angela or Judy,
Do you know if Dr. Steven Moran is at all involved in this study? He did an awesome surgery for me to relieve 99.98% of my pain...At the time it was not a typical procedure but four years later and I am still pain free! Just curious if he is working on this study, I know he has been involved in a couple but not one like this.

Thanks again for getting this going!!!!
Amy 24 years old ROBPI from MN

UPDATE: X-rays

Here are some extra details about the process of the xrays for those who chose to have them done at the local hospital of thier choice (this is especially in the cases where he would fly to meet people do the physical evaluation and it woud much more convenient to have the xrays already done)


1) Q:

How recent do the xrays need to be (as in if they've had xrays in say
the last 6 months would they still need new xrays?)

A:

Xrays obtained over
the past 2 years are acceptable especially for those older than 20 yrs

2) Q:

Do they need a referral from you to get the xrays done (I think most
will) and if so, how do they get it?
A:

If they are willing to do the xrays, then let them email me with their
information and I will fax xray request for them

3) Q:

If they get xrays in their hometown, by what method do you plan to
reimburse them? (Check, cash, etc. )?
A:

I can do it either way, money or check.

Update: IMPORTANT!

Hello everyone! So far it's been a real privilage to hear from so many of you about your interest in the study. As I have been working with you all, I've noticed certain concerns keep popping up:

1) How will this study be used (will it actrually benefit us prposefully or just be another write up for a medical journal)

2) Will it also addres prevention of secondaty injuries?

I thought that Kath Mallozi did an especially nice job at summing up these concerns in this statement (part of a longer post):


"I hope that this will be a study that will produce a care plan for adult/teen/obpi in the future. If it is just a study that is read and cast aside it would be so sad. It's time that the medical community did something to prevent secondary injuries and overuse. It has been my experience that many PT/OT people do not know how to treat bpi or have a full understanding of this injury. Many of them use tools that are great for various other injuries but do not even realize that cross body movements torque the spine on a regular basis and later in life we pay for that encourage movement. We need some protocol that is strictly geared towards bpi birth injured. "

I decided to personally ask Dr. Elhassan if he would write a sort of "mission statement" to all of you to discuss why he was inspired to do the study and how he hopes it will be used. I've copied the message in full, but I also highlighted what I feel is the heart of the statement. I really hope that this helps give some insight into the purpose of the study and the sincerity of the doctor performing it.

Ang


From Dr. Bassem Elhassan:

"As you know I came out with several surgical procedures that did help
improving the shoulder function in adult patients with brachial plexus
injury. Then I started to see the older obstetric patients with brachial
plexus injury and I learned from what has been published that there are
very limited options to treat this category of patients. I was really
surprised specifically that all these procedures were more salvage
procedures rather than attempt at reconstruction of the normal anatomy.
So, I started to attempt at reconstruction of the normal anatomy and had
very promising results. Then I was wondering what could potentially give
these patients the best long term outcome.
So I started to ask the older big name shoulder surgeon around this
country, whether they have seen in their practice adult patients with
OBPI and how did they treat them. I was very surprised when most of them
said that they did not see much of these patients during their career.
Then, surprisingly, one time I took couple of my suits to a famous
tailor here for some adjustments, and I noticed that one of his arms has
features of OBPI. So, I did ask him about it. He answered with surprise:
you are one of the very few people who did notice this. Then I asked
him: How much do you use this hand in your daily life? He said that it
used to be much better when I was younger that it got worse over time
and now I use it only as a helper hand. He also mentioned that his main
problem now is painful rotator cuff problem on the other normal shoulder
and he already had surgery on it once and he described the hustle and
struggle he passed through to get his normal shoulder working well
again.
All of this inspired me to think about this research. My purpose was not
to get a research to publish it but much more to really try to have
answers to my question and I was hoping indirectly to use this data to
go back to the beginning of the problem and give the right
recommendation regarding the treatment that may give the best long term
outcome. In fact I have already started to give lectures about this
topic trying to orient the OBPI surgeon to my thoughts about this topic.
We really don't have a unanimous recommendation about what should be
done, what age, later intervention...I feel there are so many different
opinions with so many different outcomes and of course there is nothing
much written about the older patient with OBPI.
Trying to get his data out to the public is the best way for me to
improve the awareness about the problem and most importantly to try to
intervene earlier with the right intervention to give the best outcome.
Now, there are different ways to improve the awareness about possible
problems in the contralateral shoulder, but I do believe that after
getting the full data from our study, I am hoping the UBPN group will be
able to help with this. There are so many sets of information that could
be taken from this study. We are already getting the information about
which injuries based on type of delivery and depending on the nerve
deficiencies at birth that more likely require intervention that may
lead to better outcome.
I am hoping to be able to determine from this study the issues of the
quality of life, type of job, sports...issues with the contralateral
shoulder, possible procedures in older patients....in addition to many
other important information.
I do believe very strongly that it is a unique study that MUST be done to
explore an unknown information about the natural history of obstetric
brachial plexus injury. In addition to what has been mentioned above, I
want to use this study to help guide me and all surgeons about how to
manage patients with OBPI and try to give them the best treatment
possible. In my opinion, without this study, nobody will know about the
natural history of OBPI and we will not know which treatment is the
right treatment that may give the best possible long term outcome.
In addition, I also believe this will not be one another publication
but more a document or reference that hopefully gives the true
information that nobody know about what happens to the OBPI as they get
older, what kind of problems they face, their pain, work, life,
family..."
This is my sincere answer to your question
Regards
B