United Brachial Plexus Network, Inc.

Kath

Did you ever summerize the pain issue topic? I see my atty on Wed and am wishing I had some kind of summary. I finally got another court date for Oct for my disability case. My fourth with the Administrative Law Judge, and my second or third under an appeals from the "higher ups"

By the way Kath, if you have access to my name and pass word that I use, can you email it to me. Must be a bad day today as I'm have a hard time dealing with the pain and must have that brain fog. Or maybe its just because I'm getting older LOL When I created my user name and password I figured it was so "easy" that I would never forget it. (Story of my life lately) Thanks
Sharon from MI Sleinaar@webtv.net

Sharon
I e-mailed you
Our pain post is really for the purpose of validation for those who thought pain relating to obpi was all in their head.
Many of us and our parents were told that there is no pain with a brachial plexus birth injury or babies don't feel pain.
At least they know now that babies do feel pain.

When this post began it was for OBPI adults along the way it change and was not just adults and includes some children and parents.
It would be time consuming and impossible to work into a presentable document for SSD determination.
It is anecdotal information but not scientific.
I assume that scientific information is probably required by SSD, when they are trying to determine SSD be granted to you.

I attended the SSA conference on the revisions to be made in the Blue Book SSA uses to determine eligibility for SSD/SSDI.
They do not have a code just for bpi injury and one of the judges said he had to hire an outside source for information when he was adjudicating a bpi case for SSD.
We requested SSA to Assign a specific code just for bpi disability determination.
At present they use bits and pieces of the codes listed on the link below and try to apply them to BPI cases.
http://www.socialsecurity.gov/disabilit ... -Adult.htm

We truly need to be listed under a separate code or this code should include the words brachial plexus injury.

Sharon we (UBPN) cannot go into the website and edit or correct a post or registry. Why don't you go to the new registry that is up and re-register?
Good Luck
Kath

Along the same line. How does one begin to investigate the possibility of being considered for Disability? My pain is also getting worse everyday, and I don't really know how much longer I can sit at a desk and keyboard. I am 50, and not ready to retire (both financially and emotionally), but I just want to be prepared.
Any suggestions, Kath?
By tne way, it sounds like camp was very successful. Congratulations to all involved. Hope I can get to one of them!

Thanks!
Cyndi
50ROBPI

Cyndi
I began to suffer from secondary issues at your age and really did the wrong things!
I did not want to stop working I loved work so I decided to work part time...
As the pain progressed and my ability to stay at computer and projects without frequent breaks became more difficult,
I once again cut my hours in half. This also cuts your salary and contribution to SS...
I then realized that I was still having problems with any long time dependent projects.
It was too much and both arms were in such pain that I could not perform the tasks of active daily living required of me as a wife, mother and grandmother...
Women are assigned these tasks just by the nature of our society. I decided to only take on special projects.
Once again this cut into my salary and SS contribution.
I did not fully apply and retire until I was 61 because I just could not accept the fact that these issues could not be repaired and I would feel normal again.
I was always a strong active person and except for a “bad back, neck etc” I would heal again.
The outcome of following this particular course of action on my part was to drastically reduce the amount of my SS benefit checks for life.
I really reduced my salary over the course of 11 years struggling to stay active and assuming I would be healed of the secondary conditions plaguing me.
Just from a financial point of view this is not good for most people.
From and emotional point of view, as a woman, who worked most of her life and raised children at the same time I found it hard and frustrating.
If I were not married and did not have the support of my husband it would be a financial mess.

I had to wait 5 months without salary.
If you are approved it is two years before you are able to get Medicare.
Once again my husband has health insurance... but what if I were not married?
I found it difficult to be told it is a "new injury"
I was told it was because I always functioned on such a high level that I needed to prove why I could no longer do it.
I also found that my persistence and stubborn nature did not serve me well on this issue and my choices were poor.
I actually pushed my secondary injuries over the edge and did not preserve the full use of my unaffected arm and hands.
I assumed that the damage I was feeling was not secondary to obpi and the long term effects of compensation.

I would advise you to keep detailed records of doctor’s visits.
Copies of all your test results
Begin to document your problems with this problem now.

In order to be granted SSD you must present, to the person who determines your claim, a clear picture as to how this injury impacts your life.
You must also seek the support of your doctor when you decided to retire to preserve the use of you unaffected arm.
You should ask to see a copy of the letter he/she writes in support of you claim for disability.
Documents pertaining to this injury are very important to submit with your application because SSD uses the Blue Book to see what code you fit under.
The Blue Book does not have a code specifically for Brachial Plexus Injury either as a traumatic event or birth injury.

I was advised by the SSA worker assigned to my case to write a resume and include all the things I could and could not do.
I actually provided information on the function and pain level in both arms, hands and legs...
The more evidence you submit as to the extent of your initial injury and how it affects you now the better your chances of being awarded disability.
I also had to include every job I ever held and the tasks I preformed.
I was asked to include all volunteer positions … and the projects I preformed at those organizations.
It was an SSA staff member, in my state office, who gave me the best advice on presenting a true picture of my personal injury and health issues.


Over use of the unaffected limb is a major cause of pain and fear...
Fear of loosing use of our unaffected arms is a major problem for many of us... when we admit it...
Because of the medical professions lack of knowledge and the lack of long term studies on OBPI, neither I nor my doctors realized how these medical issues were related to obpi.
My natural need to compensate for the loss of full use of my arm and other areas impacted by my initial birth injury were NEVER explored by any physician except by my family physician.
Once we moved and I was in my twenties not one doctor even mention my arm or its impact on my body and life.
I call it the elephant in the room when I asked doctors I would get a “you look great for such a mild injury – duh not true, or “you hide it well and are so well adjusted”.
They are not aware of any connection to the rest of our health issues.
This is because of a lack of medical studies and education regarding long term effects of brachial plexus birth palsy.
Each medical issue I had was treated as if it was a new injury. I never realized it was connected to compensation nor did my doctors.
I believe that it was due to the fact that some physicians still feel it's only the arm that is affected, even in those with severe bpi.
I honestly believe it is not our doctors’ neglect but the lack of education in the medical schools regarding this injury that causes us to suffer from this type of medical neglect.
One a patient is released from pediatric care for obpi there are no physicians with the knowledge or specialty to continue to proved the expertise to advise obpi individuals.
I truly assumed that my arms, hands, neck and back would improve with therapy and my unaffected arm would be strong and the neck and back pain would be gone.
I hope this helps a little.
You should begin to really think about the care of this arm and the tasks we perform at your age, when we are not sure how they will heal.
We need to make the connection between ordinary pain of aging and the secondary extreme stress we place on our unaffected arms.

After attending the SSA Neurological meeting in July, I was impressed with the dedication of those who are responsible for determining disability claims
I truly believe that want to streamline the process so that cases will be determined in a reasonable length of time.
They seemed, to me, to be trying to get clearer information made available to them to make determinations and the process of obtaining SSD easier for people
They must be guided by the Blue Book and that is what must change for bpi individuals to be helped along with our process when we apply for disability.

E-mail me if you need anything more specific.

Kath (adult/obpi)

I have a ? for those that feel pain in their affected arm. Does there seem to be a difference for children who have had primary or secondary surgeries or have people affected been split down the middle on the pain issue?

Alec doesn't talk about it but am not sure if he blocks it out. Are other children who have also had surgery experienced the extreme sensitivity when having their affected arm touched or bumped?

Jeanne

WOW, KATH!
The information you gave me is invaluable! I can't thank you enough for taking the time to share your experience with me. As I had told you a few weeks ago, I'm looking into what can be done for the pain I'm experiencing in my neck, shoulder and back. I have an appointment @ the Brachial Plexus Clinic in the Hand Center @ Froedtert Hospital in Milwaukee on October 3. I'm checking into my options. I'm not sure I want to go through any surgery, and am hoping there are other alternatives. But, as I stated in my previous E-mail, the pain is continuing to worsen in my OBPI arm, while my "good arm" suffers from tendonitis and is losing strength very quickly. I am so truly afraid, and I feel very alone in this situation. It is really a shame that there has not been more research in the affects this injury has on aging. I'm so glad that the younger people have more options available to them now!
Your advice to document everything will begin immediately. I am gathering records for my appointment in Milwaukee, and will keep copies for my own personal use. This is so frustrating, that I want to just sit and cry. My family is trying to be supportive, but they can't possibly understand completely the pain and mixed emotions I'm experiencing now.
Your help and advice mean the world to me. You are truly angel!
God Bless You!
Cyndi

I am happy you will be going to get some help.
I have copies of all of my PT records.
They include measurements etc. The last time I had PT for my arms the therapist used ART therapy and I loved it.
I regained the ROM I had in my bpi arm before all my problems... not that my ROM is great...
I assume you will be meeting with Paula Galavez(I know I misspelled her name) She really seems to know her stuff when it comes to bpi therapy.
She is also very easy to talk to and you will be able to get some help.
Therapy has really helped me over the last few years and that was because my therapist cared enough to pull out his old notes on brachial plexus injury.
He also encouraged me to complain so he knew what was hurting.
I tend to be a bit stoic when it comes to pain but I think there comes a point where we just can't take it...
I had a real hard time explaining what was wrong with me...
I felt as if I was complaining.
But how else can they help us if we don't tell them what's wrong?
Kath

Kath,

It has always surprised me when people think that babies don't feel pain. I was taught that when a baby is born, the doctor holds the baby upside down by the ankles (allowing gravity to take fluids out of the baby's mouth), and slaps the baby's bottom. The baby will want to cry FROM THE PAIN. In order to cry, the baby will have to inhale first, thus the baby will start to breathe on its own. I've never had a baby, or witnessed the birth of a baby, so I don't know if that's what's really done, or if it was ever done that way, but it sounds logical to me.

My sister-in-law gave birth to her first child on April 1st. When she phoned her parents (my in-laws) to tell them, they thought she was playing an April fools joke. She pinched her daughter's arm to make her cry so that the new grandparents would hear the baby crying and know that she HAD been born.

Am I missing something? How can anyone believe that babies don't feel pain?

BTW, that April 1st baby just had her own first baby (a boy) while we were at camp.

Joanie

I do come to the OBPI boards alot, to learn what I can, even though James is TBPI.

Just want to say Thanks, Kath for all you wrote Here!

Well. I just created another user name and password, duh, that memory thing again. LOL Kath is sooooo right about getting ALL your med records. Even from the day you were born. My birh record stated that baby was listless but was normal. Guess I've looked "normal" all my life. LOL I've got so I just hate that phrase, you look so normal, duh one head, two eyes and so on, yea I kinda look normal. I was always glad no one could tell my left arm was a couple inches shorter.
We have all hid it so well and as Kath said, we are a stubborn bunch of people, we just don't give up easily if ever. I'm 58 now and I have to admit, I pretty much have given up on the possibility of returning to work, regardless what the ssd judge says I can do. While he denies me, his vocaional "expert" cannot come up with any jobs that I would now be qualified for. Imagine that. Your records are the only thing you really have going for you, and I too, used to think "I don't want to complain everytime I go to the dr" Even now, I'm hesitant. He says do you hurt, I say yea but you have already told me there is nothing you can do. Two months ago I mentioned and asked him if he would have any idea why my "erbs" hand and fingers would be getting numb more often, and off I go for another emg. Carpel tunnel now in both hands. duh, who would have guessed. He asked me why I copped out from having surgury. I'm not about to take the chance of losing my good arm and hand and who would wipe my butt while it healed. When I asked him for a copy of the report, he asked my why, did I keep my own file at home. Yep, I sure do now. At first he was reluctant, and after all my lawyer will ask for it anyway.

I think the more paper you have the better everyone likes it. It's just now days, I have trouble filing everything where I can find it again. LOL

Good luck and start now if you plan to retire and get ssd, your earnings do dwindle as Kath said and as I too experienced, although I went the route of temp positions thinking the time between assignments would give my arms, hands, and fingers time to rest. Wrong, didn't work that way. And I love the one statement "You worked all these years with your injury and headaches, why would it be different now. So make sure your dr writes down everything important that especially pretains to the downhill effect you experience so that it shows it didn't happen all at once or overnight.
Sharon L