pain, depression, anxiety in the adult OBPI situation

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
karenrn
Posts: 1
Joined: Thu Oct 22, 2009 1:15 pm

pain, depression, anxiety in the adult OBPI situation

Post by karenrn »

hello. I am working as a nurse life care planner, currently helping about 20 children. I have been unable to find any research literature on the subject of pain development as the children age---either from neuropathic pain, overuse syndrome, contracture, arthritis, spinal pain (scoliosis), or general pain throughout the neck, shoulder, arm, or hand. if anyone has experience and would share that with me, please contact me through the forum or through my e.mail account: sheltonk@comcast.net
kissygoose

Re: pain, depression, anxiety in the adult OBPI situation

Post by kissygoose »

I would be happy to give you some information. I'll email you later when I can collect my thoughts.
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: pain, depression, anxiety in the adult OBPI situation

Post by Kath »

Karen

I'm sorry to say, there are NO long term studies on the impact of this injury on our bodies. It is something the medical research community has ignored.

Once a child is released by their bpi doctors they are not given any medical support or information on how this injury impacts our entire body.

Due to compensation our injury begins to affect our unaffected side early in our teens. We are supposed to be bilateral and the full extent of our injuries are often not evaluated. It is as if no one is willing to connect the dots. It is not just the arm that is injured. If you have Horner's it is our eye, face, skin and sympathetic nervous system on the bpi side.
There are so many ways that this injury alters a persons life. I think it was a good thing at times that I did not know that I would have so many secondary issues. Perhaps if OT/PT was more in-tune with this injury and the toll that compensation plays, they would do many things differently.

I always had pain and it was worse during puberty and growth spurts. Once I had children all the lifting and carrying, laundry etc... caused more damage to the unaffected side. Better OT on this type of work would greatly support the bpi injured to prevent secondary issues.

Secondary issues have been a major problem as I matured and began to age. Most OBPI have reported high pain threshold and this does not serve us well because we have had a lifetime of pain and often neglect to report pains that we should be paying attention too!

Kath robpi/adult 69


Message was edited by: Kath
Kath robpi/adult

Kathleen Mallozzi
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: pain, depression, anxiety in the adult OBPI situation

Post by Carolyn J »

Karen,
Since BPI-ers have been basically ignored...States/Health Depts have NEVER counted/kept statistics on Obstetrical Brachial Plexus Injuries. You will have to post an "Appeal" for Parents and Adult Injured, to share our LIFELONG Battles with: 1)OUR INDIVIDUAL Secondary Medical issues RELATED to OBPI's; 2)Pain ; DEPRESSION/Anxiety and SELF ESTEEM/emotional issues specific to growing up with OBPI's.

Personally, I would definitely want to know more about what and HOW you use my information if I CHOOSE to share it with. Also, I would like more information about your Nursing Credentials and education.
Thank You.

Carolyn J
LOBPI/adult age 71
Carolyn J
Adult LOBPI
Judy-T
Posts: 557
Joined: Fri Nov 02, 2001 11:59 am
Injury Description, Date, extent, surgical intervention etc: Right arm OBPI One surgery at age 40 Ulnar nerve retransposition
Location: Florida

Re: pain, depression, anxiety in the adult OBPI situation

Post by Judy-T »

Karen,
I think I either talked to you or your daughter a while back. If you need more info feel free to e-mail me on this issue.
Judy
Master DIVER TOM
Posts: 759
Joined: Tue May 05, 2009 11:51 am

Re: pain, depression, anxiety in the adult OBPI situation

Post by Master DIVER TOM »

To me there is the emotional issue by trying to overcome some way old or new limiation of our injurys . I read a lot of messages of person with this injury who did a lot in there life and have been damage more threw life. It terrible to thing how bad will it get. But you can think more about what you did overcome in your life that in the end( Maybe) you can get past some of the emotional issue but never get over your pain. I stress Its what I wish to do and I know your words are True to about over use and more pain to for sure.

Tom
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: pain, depression, anxiety in the adult OBPI situation

Post by marieke »

As a child and teen I had no pain unless I over-stretched or overdid something (like lifting/carrying heavy things).

I never really had any pain until I hit my 30's, when now I all of a sudden have pain in my LOBPI shoulder and at times in my neck on my right side from strain/stress from using it more than the left side.

Overuse of my "good" side is a worry, so far I am lucky and have not had that problem BUT it does seem to be affecting the OBPI side.

Marieke 34, LOBPI
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
gooftwo
Posts: 27
Joined: Wed Jan 27, 2010 1:34 pm
Injury Description, Date, extent, surgical intervention etc: c4,5,6,7 and t1 all avulsed,no left arm movement and fingers twich but no control.Had left arm removed at the shoulder.
Location: tacoma,wa.

Re: pain, depression, anxiety in the adult OBPI situation

Post by gooftwo »

i had my accident 9-2-09 ,i'm in alot of pain can't do my job anymore, afarid of whats going to become of me
GetHealthHelp
Posts: 1
Joined: Thu Feb 25, 2010 6:20 pm
Injury Description, Date, extent, surgical intervention etc: ERB's palsey diagnosed at birth, no treatment received. Now 65 years old. Left brain complication. Nerve damage and range of motion getting worse. Looking for adult OT services.

Re: pain, depression, anxiety in the adult OBPI situation

Post by GetHealthHelp »

I am a Patient Advocate. My patient is a 65 year old women diagnosed with Erb's palsey at birth. She had no treatment during childhood. She has severe nerve damage and complications on the effected (L) side including an aphasia like effect. She is healthy and lived a productive life in every other way. She does receive PT when she has severe back and shoulder pain. We are looking for Occupational therapy and possible speach therapy for her in NYC. Any suggestions for home exercise would be appreciated.
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: pain, depression, anxiety in the adult OBPI situation

Post by marieke »

A physical therapist and/or the OT would be the best people to ask about for exercises as no two people are injured the same way and what may be ok for one person to do may not be good for another.
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
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