Hello...new member

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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HelenGrace
Posts: 2
Joined: Wed Nov 14, 2007 11:04 pm

Hello...new member

Post by HelenGrace »

Hi, someone referred me to this website and so... here I am! I just had some questions regarding different treatments, therapies, etc.

Over 22 years ago I had a traumatic birth where I ended up getting stuk in the womb and long story short I was diagnosed with brachial plexus. I don't believe much was done at the time of the injury. To this day, I am not even sure if the nerve was pulled, stretched, etc... When I was about 11 yo I had several surgeries at Shriners in which the bone in my arm was broken so that I could straighten out the arm more and so that the fingers wouldn't lock up. Currently, I have limited function in my arm. My arm never fully developed so my wrists hangs down and the fingers are small and curled. I have minimal sensation in the arm and my strength is limited as well. I cannot lift the arm above my shoulder and I can barely grasp objects. Fine motor coordination is impaired as a result. I was curious if there was anyone else in my position that has been able to gain additional function in the arm this late in the injury.

Also, I am currently in Nursing School (2'nd year out of 3) and was wondering if there were nurses, students, etc in a similar situation that could offer advice regarding skills (ie injections, working with tubing, suctioning).

Thanks for your time and any advice/suggestions would be helpful. Thanks!!
User avatar
hope16_05
Posts: 1670
Joined: Tue Jul 01, 2003 11:33 am
Injury Description, Date, extent, surgical intervention etc: 28 years old with a right obstetrical brachial plexus injury. 5 surgeries to date with pretty decent results. Last surgery resolved years of pain in my right arm however, I am beginning my journey with overuse in my left arm
Location: Minnesota
Contact:

Re: Hello...new member

Post by hope16_05 »

Hi Helen! Welcome to the boards, hope you are able to find all the information you may ever need and more.

My best suggestion for you is to search out a CHT (hand therapist) who does splinting and see if you can get a splint to rest your hand/wrist in a better position and gain some use and maybe even sensation in your hand.

I am 20 and until 17 really didnt have a lot of use of my hand. At 17 I started seeing a very creative occupational therapist who is also a hand therapist and have since gained the use of my hand (my fingers used to stay in a fist) Now, I can open and close my fingers quite functionally! Never give up! Thats even better advice for you.
I had surgeries at Shriners at ages 6, 10, 12, and 18 and my most recent surgery at Mayo at age 20.

Please feel free to ask any questions you may have no matter how small the questions may seem, many others often have similar experiences and havent shared.

Sorry I dont have any tips for nursing school but good luck!!! I am going to college for Occupational therapy! I just turned in my application to the masters program today actually. Starting classes next fall.

Hope all is well,
Amy 20 years old ROBPI from MN
Amy 28 years old ROBPI from MN
Mare
Posts: 708
Joined: Mon Mar 10, 2003 5:30 pm

Re: Hello...new member

Post by Mare »

Welcome Helen
I'm Mare my son is Frankie 14yr old lobpi he has about the same amount of function as you described maybe a little less. The Mayo Clinic has a great BPI team there maybe that could get you started in finding out what is damaged and what is just weak and you could maybe get splinting done for your hand that helps make Frankies hand more functional also find out about options for surgerys if interested.
Good Luck Keep us Posted Mare
HelenGrace
Posts: 2
Joined: Wed Nov 14, 2007 11:04 pm

Re: Hello...new member

Post by HelenGrace »

Hi,

Thanks for the warm welcome. I've started asking my doctor for some more information and I guess I'll start from there then possibly try the Mayo Clinic. I saw an OT a while back because I wanted some assistance with performing the nursing skills but she wasn't very helpfull (at least in that regard). Yea, I'll start with my doctor and see what I can do from there...Kaiser takes awhile... Thanks!
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Hello...new member

Post by marieke »

Hi HelenGrace,

Welcome to the boards!
I too have an injury, but have good hand function, not shoulder though, same as you, I can't lift my arm above my shoulder level.

I too am in nursing school, 3rd yr out of 3! So yes, graduating this year (May 2008)!

Not sure if I have any tricks, though I do modify the way I do some things too..sometimes I don't even realize I am doing that.

Marieke (32,LOBPI)
http://nurse-to-be08.blogspot.com

email me if you like,
marieketrp@hotmail.com


Message was edited by: marieke
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: Hello...new member

Post by Kath »

Welcome Helen Grace

I was hoping Marieke would check in because she would be the best one to advise you about nursing skills and obpi.
I knew that Amy would have more information on surgery.
I'm glad you found us and hope that you will feel comfortable asking any questions. There are no silly questions when it comes to obpi.

Kath robpi/adult
Kath robpi/adult

Kathleen Mallozzi
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