United Brachial Plexus Network, Inc.

Well, I thought I would look at some of my medical information from growing up and try to find and understand myself better. Try being the key word. I didn't find anything other than one reference to my C7 and I quote "Incidental note is made of synostosis between a rudimentary right C7 cervical rib and the proximal or posterior superior 1st rt thoracic rib, of uncertain clinical significance."
The rest of my information stated dumb stuff like "is able to hold onto pen", "Difficulty raising right arm" (duh!).And so many other blah, blah, blah...let's keep bringing her back and doing the same exact stuff but getting no where helpful.

I will find a good/nice/helpful/competent doctor for my child when I have one even it's perfectly healthy!!!

OK, I'm done complaining. But it comes in like mood swings. I feel fine, and lucky most of the time but I do hate what little I still know, and what little was done for me. And thanks for listening, I just needed to vent and maybe get a little help from others like me. Thanks again for listeng!

I have those moments everytime I go to the doctor. After having moved and having to find a new doc that would take my State Med I find there is only one in my new county that accepts it. Finally got in only because I needed refills on scripts. The first doc was "familiar" with erbs but for some odd reason he just didn't tie in my other problems with it. But he did believe in treating chronic pain with vicodin.

After three visits, he moves on. Now a new doc. He also is "familiar" with erbs and tells me "there is no pain pill or anything anyone can do about it" He does NOT believe in narcotics for chronic pain. He gives me this wonderful "pain pill that really works" HA HA HA Didn't touch any pain, but did give me a nasty rash in my left arm pit (my erbs side of course) Told him about it, gee "that's not one of the side effects, have you shaved under your arm lately?" I just sat there not knowing what to say when he asked me to lift up my arm so he could see it. So I raised it and was asked to raise it higher. (guess a couple inches away from my body didn't count and of course I can't raise it straight up, especially from a sitting position. Then I remembered his words, "familiar with erbs" lol lol The reaction was probably from a virus of some kind. Like I told him funny it went away after I quit taking the pills. The long and short of it, I had to just about beg for vicodin (making me look like I was addicted)

He informs me and lectures me that addiction to narcotics is far worse than the pain. About that time I had enough. I told him until he lived as I do, and had to deal with pain issues, he had no right to tell me he was right. Couldn't believe I spoke up like that. (knowing I could not find another doctor) Now, if he continues to allow me (I like that one: allows me) to take vicodin, I have to take a p*** test or blood test at random (to make sure I'm not selling my drugs but am really taking them.

Then, of course, try to argue or explain why you will NOT take any more antidepressents. They tend to make me "not care" and I get suicidal. Gee, that's not one of the side effects.

Hating doctor moment, I'm all for that one. Thanks for letting me vent. Can't say I feel any better or different thought. lol I have to go back in a week or so (before my script runs out) to see how I am doing and probably be subjected to a drug test. So I guess I'll stay in this moment just in case he gives me a hard time. But on the other hand, maybe I should send him nice thoughts and warm feelings, just to see if he receives them. lol lol lol
Sharon

All I can say is WOW... this is long but we have been in this position most of our lives. The lack of good sound medical information is just unbelieveable! I have been there, done that and won't do it anymore.

When I have to see a new doctor I bring Outreach with me - every one of the publications I have. I advise them that I am aware that care and treatment of the OBPI aka Erb's Palsy patient is not taught in medical school. I also speak to them about the lack of long range study and total body impact studies. Therefore, I explain I must be very pro active when it comes to my care and treatment and we need to be partners. I print out any of the material I feel he/she will need to read from UBPN website and leave them with my file.

I once wrote a full two page paper for my pcp explaining all of the little quirks that OBPI patients share. I asked her to insert it in my medical file so that all of her covering physicians would have access to this information. She was not aware of my lack of sensation on the right side. I explained the pain, range of motion, lack of strength, temperature, fatigue and the impact on the un- affected side of my body due to years of compensation. She was very receptive to this information. I think at first she was shocked when I gave it to her and asked it be placed in my medical files and was not sure how to take it… but we had a long conversation about it and how I was aware that this is a new field, so to speak, I wanted her to have a complete history on me. I was respectful of her feelings and in turn she was of mine. It takes a little diplomacy but it was well worth the effort.

I had to see a covering physician a few times recently and I had no quams about starting off my exam with taking control when it comes to the bpi injury. I spoke to him about asthma and my thought that I did not have asthma but partial paralysis of the diaphragm. He sent me for breathing tests because he wanted to make sure I was right... I had the breathing tests with the specialist... He was not fully familiar with OBPI but aware of it. He said the tests showed that I had a muscle fatigue similar to post polio patients and it probably was from the obpi. He said he had no proof except my history and breathing problems. He also said there is a machine he could send me to be fitted for, to put on at night to relax my lung and give it some rest. He felt I was not up to that point but there could come a day when I might need it. I explained I always get winded when out in the cold, wind or walking for long periods of time. He then informed me I had to have an inhaler in the car, my pocketbook and nightstand. I must carry it at all times now because it helps when I suffer from reactive airways to get immediate relief. He feels that I do not have the muscle power in my lung to support my breathing during those times. My childhood family physician stayed on top of breathing issues and commented about the problems with my lungs and diaphragm. Once he put on my records I had a spastic diaphragm for an absentee note needed for school. The more knowledge we have about OUR injury the more we can talk to physicians and get them to listen to us. I am glad that this young covering physician listened to me but he also did not just take my word but sent for a complete respiratory evaluation. If my diaphragm is truly partially paralyzed this would interfere with anesthesia for any future surgery and should be part of my medical records and a concern for any doctor treating me. One more step for me – my goal is to know the total body impact of my personal injury. I have that right and I need to know – I am tired of thinking something is connected but being told it is not without performing the proper medical testing to rule it out. I do not want to blame every ache and pain on bpi or connect the wrong dots. But so far my quest for information has surprised me. I was shocked to discover how many of my physical ailments were part of my injury. I am annoyed that some of it could have been prevented with proper medical advice. But how can anyone give you good advice if the studies are not there ?

Don't give up! Arm yourselves with information regarding OBPI. Request that they do tests that will confirm your problems and talk to them about the lack of medical information to support your medical needs. Speak to your doctors and explain that you need to see a bpi specialist about your medical needs. Tell them that you needed specialist’s advice on pain management, PT and all issues relating to your special needs as a bpi injured person. Do not allow them to say NO… that is not acceptable. I know, because I did that for years and then one day I had had it… I was ticked off, beefing to myself (who else would understand my frustrations) finally I just made up my mind “no more double talk” I was going to be in charge of my future medical needs. It works, if you go in with confidence and tons of information in the form of printed materials… get some extra copies of OUTREACH… I was amazed at the doctors response to the materials in Outreach it was so positive. I would be remiss if I did not credit those who formed UBPN with giving me the information and therefore the confidence, education to allow me to take these steps.


Oh my goodness I sound like a control freak! I am now, because I know most primary care physician do not know how to give me the necessary support and medical advice I need. I find I am not angry that they do not know about the necessary care I need. It is not their fault that they were not taught how to fix other doctors mistakes. We have come along way but still have a long way to go to get proper medical respect and care.
We have two choices – we can get very angry or we can take charge a step at a time… It’s not easy but you can do it. Just stay calm do not be afraid to speak up and keep the mutual respect between you and your physician.
Jumping off my soap box… LOL… well stepping down
I hope some of this helps… I used to be ticked off and frustrated now I just don’t let anyone tell me made up medical facts to get rid of my questions. I expect a proper medical answer based on facts not guesses.
Kath

So I know I'm new, but reading this I needed to say something. I've had problems with my left arm my whole life... My parents never really knew what to call it but did PT with me as an infant and then always treated me like there was nothing wrong. I started doing research when I realized that despite being able to beat the boys at arm-wrestling in HS, I couldn't do the pushups that they could...

Anyway, this topic caught my eye because I've worked in health care for years, emergency medical tech for a while and now in Med School, doing anatomy and dealing with the brachial plexus. Docs aren't as ignorant and uncaring as it may seem at times... Nerves are tricky, we simply don't know a lot about them, even when we can dissect cadavers. The dumb stuff is important - knowing that you can hold a pen makes a difference in your functioning. That's what docs care about.. How you can live your life. The C7 cervical rib reference is significant in that most people don't have a cervical rib - the brachial plexus has to swerve around it, which is likely why there's a problem.

Yes, take control of your medical care. But realize that the OB responsible for your birth is not necessarily at fault - there's some things you simply cannot predict or deal with effectively in a given situation. I know there are bad docs out there... but often, it's worth giving them the benefit of the doubt. Most of the time, when too little is done to help.. it's because we just don't know how to help or make a difference. It's not due to a lack of caring or empathy.

My daughter is the one with the injury. I've never felt that the delivery doctor was uncaring or did not have empathy, or any other of her specialists that we've seen over the years. I just think that they weren't taught right.
It gets extremely frustrating to turn to doctors, pediatricians, therapists, school nurses, ER, Medical technicians, and so on and not have them have any idea what my daughter's injury is. My daughter once at a Brownie troop outing went to an emergency medical ambulance station. She was excited, but the '911' crew giving the talk asked her to stand up and discuss her 'broken arm'. She tried to explain that it was a brachial plexus injury and none of the crew had heard of this injury before - but asked her to demonstate a broken arm for them - something that they knew - so she got to go up in from of her troop for that... I didn't chaperone this one - (a whole lot of side fears like - what would happen in an emergency - would they break her arm and try to straighten it or give her IV's on her left side?) It's scary for a parent just like I know it must be for any adult with an injury to wonder what would happen if you need medical attention and someone isn't right there to explain to the doctors or medical technicians - whoever - the ones that are SUPPOSED to know and you count on to know don't seem to know.

I hope that those who do have injuries and do go on in the medical field can make a difference for those who have been so frustrated for years with "wait and see what happens and if she can move that arm", or "what does she have again??" or "I have no experience or info on this injury", or "take the blood pressure in her LEFT arm - it doesnt matter - (when it does! She has a left arm injury!), or nurses wanting to give shots in the injured arm from birth on because it was her left arm... I have lots of years bottled up in me. Why do those injured and the parents of those injured seem to have to get their own medical degree because those who have one don't understand or learn what to do? There have been so many appointments that I've brought my daughter home from where I've felt more informed than the doctor that I'd spent 2 hours in the waiting room waiting to see with her. You go in for help and come out frustrated!

Also, a doctor does have warning signs that it could not be safe to deliver a baby vaginally and these injuries could have been prevented - the medical field just needs to learn this.

Christy

Sari
Welcome to the message boards. I am amazed that you did not know much about your injury.

I am 65 and always knew that the doctor made a mistake and applied too much traction and failed to use the information they had to prevent me from being injured ( like two dead babies due to birth trauma). They did, however, encourage my mother to accept a legal abortion instead of giving birth to me. Because they knew one of us would be injured or lost during delivery. Even in the good old days there was information to prevent this injury. They should have preformed a C-Section with the information they had...
Was it because they did not care... I don't think so... but I think they were more than careless and less professional then they should have been. They even hid the fact that I was injured from my parents during our two week hospital stay! That is not anger or rash judgment it is just the facts.
I see that you are involved with the medical community so, I am sure you are aware that there is very little information regarding this injury in medical text books and some of the information is just wrong. There are neither long term studies nor total body impact studies on this injury.

It is agreed that this injury, almost 99% of the time, is caused by excessive traction. If the injury was just one of those things then, why do the medical communities involved with the birth try to keep it under wraps? Why not have information available in the Maternity Wards instructing parents how to ROM and where to go with the child if they do not follow a pattern of movement. Why is it so hard to get statistics on this injury? I have lots of questions and feel at this stage of my life I am entitled to ask and get good sound medical information not guesses when it comes to my medical condition.

Many physicians do not know all of the necessary maneuvers to deliver the baby when Shoulder Dystocia is present. Some apparently do not know the warning signs of a possible difficult delivery.

I suggest you read our Prevention Page
http://ubpn.org/prevention/

I think the problem most people have is the lack of concern for the bpi injured persons. I am surprised that you feel it was OK for your parents to be left to formulate your care without proper medical support. I gather from your post that your parents were not given good medical support or advice. My parents were taught ROM 65 years ago. I was braced for almost 11 months and had PT. Then my family did all PT and care alone once I regained some movement. That was 65 years ago I am often puzzled when I see younger people, in their 30’s, who have not had better care and their families were not even given the name of this injury. This adds to the perception that this is a rare injury.
I think the lack of information and medical studies caused this problem not the doctors.
I don't believe that a doctor would not care if they injured a child or that patients were not getting proper medical treatment....
I feel it is time to change the education of physicians on the care and treatment of bpi patients. I also feel it is necessary for doctors to listen and not rely on old text books it is time for them to listen to their patients and do some research on how to best care for obpi patients.
When I buy a plant I check up on the care and feeding...
I would like to think a doctor with a patient with a so called “rare” injury would check up on the possible side effects and evaluate the full extent of the injury.
It is amazing how many parts of my body this injury has had an impact on. I am fortunate because I have a PCP who is part of a multidiscipline practice and listens. They have ordered appropriate testing to help solve some of my health issues. My most serious ones are related to OBPI... that is important.

Since each injury is different our healings are often very different and there is no one model for healings or secondary injuries. But compensation takes its toll on the human body and since not much is known about the healing process of untreated obpi you can be sure not much is known about secondary injuries and the impact they have on OBPI.

Go Kath, I love your passion. And, I might add, you are better informed than I. But, when it comes to talking, I can give you a run for top place LOL LOL LOL.
I don't post as often as I used to, but I can tell you that my parents did know about my arm as I found a "small" pamplet in my baby book of infintile paralysis. I also found out that the doctor who dilivered me had his son delivered with erbs? Only he was never able to use his arm at all. You would think a doctor with a child with erbs would do something different. Maybe he did learn. Not having a doctor other than him, he delivered my first born, but he took exrays about 10 minutes before delivery to make sure the baby was in the right spot.Before anyone comes back with "exrays are dangerous for the unborn", my duaghter hasn't shown any side effects and she was born healthy with no erbs. I guess we would call this the lesser of two evils.

I too, didn't know about my injury until I could'nt do things "normal" about 12 years of age. My parents did not baby me, but let me do whatever I wanted or could. But I would also think that my mom must have done some kind of ROM or she would not have had that pamplet.

Problem being, as you said, are the long term effects that the doctors are not aware of. But then, our problems are not cancer, tumors, etc the "bad" stuff that kills you, and there is not enough time allowed per dr visit to really talk thru the issues of the effect of related erb problems and yes, the doctors don't know what to do. And yes, perhaps there is nothing anyone can do about the pain issues and deteriation of muscles that occurs, but still, if one could be treated properly when younger and stick with rom and exercise it could extend the deteriation. Who knows...All I do know, is doctors are really too busy for the issues that don't show up on exrays tht seem to be minor ones.
I've been thru the rounds of pain meds only to now have my metabalism screwed up and now weight is an issue. Thanks to this board, I undestand more about my injury than the biggest share of the medical profession does.

One of the best recent incidents that made me laugh was: My current doctor said he was aware of erbs but there was nothing he could do for the pain. Then he asked me to lift my arm up. I did, and he said lift it higher. duh, It does not go any higher. That's his understanding of erbs LOL

Anyway, you tell em Kath... Go Girl
You have the passion it takes.
Sharon

Welcome to the boards and sorry my posting is so late! You are definately at the right place to find out more information on your arm. You can do a lot of research and digging around and you'll be amazed at the amazing people you will meet in here.
It's fine to vent and everyone needs to do it. I hope your feeling better and if you need to talk e mail me sometime.
*HUGS*
Hang in there.