Not sure this new Dr. is going to be very helpful

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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: Not sure this new Dr. is going to be very helpful

Post by Kath »

I hear you loud and clear.
I have had way to many visits with doctors like this.
When my third child was born I went to a specialist and he told me nothing could be done and I looked like I had a mild injury.
He did not know anything about OBPI.
Instead of being honest and telling me he was not sure he lied and said nothing could be done.
He also added how good I looked and maybe I did not really have Erb's but a very mild form of it.
I called my family doctor in tears and asked what I really had.
He was so furious with this "Big shot Specialist" that he called him while I was waiting on the other line.
I cannot repeat the things he said. I was shocked at him.
He was such a good gentle person but he lost it.

Now after tests and education and putting the pieces together I know I have a global injury.
I look good because my arm just hangs down and I can use it a little and my hand works ( sort of ).
My arm moves because I have scapular winging and I compensate because I move from my shoulder....
I have a very limited ROM. I have Horner's Syndrome also and always knew my diaphragm was spastic... MILD...
Unless this doctor knows about OBPI and/or does some testing he can't say mild or you look good.
It is now how we look but how we function that is important.

Does your insurance allow you to go out of network for specialists.
Can you get a case worker to approve of your seeing a bpi specialist?

OK, I am rambling and upset because at 33 I was right where you are... and at least I can accept that answer 33 years ago but not now!

Kath ( adult/robpi)

Kath robpi/adult

Kathleen Mallozzi

Re: Not sure this new Dr. is going to be very helpful

Post by kissygoose »

I don't know if they will let me go out of service because to them the dr. I have is acceptable. I mena they don't even want to let me have an MRI so I think going out of network is going to be a big no no. I wouldn't even know where to begin to get a case worker.
Posts: 77
Joined: Sat Nov 03, 2001 9:29 am

Re: Not sure this new Dr. is going to be very helpful

Post by Sharon »


I, too, hear you loud and clear. The dr I just (finally) convinced about the pain, left and now I have a replacement. I explained, etc, a couple minutes later, he asked if I could raise my arm about my head and showed me how he wanted me to do it. I thought, "here we go again" Next he wanted to know if I could put my arm behind my back. Ah, no I can't. He says "gee, you can't even brush your hair, can you? Dah, that's why it's short and straight.

What I'm going to do, and I'm sure he probably won't like it or find time to read it, but I will be making copies of articles found at UPBN as well as other web sights on pain, esp as it pretains to whatever area it involves. A good one is chronic pain issues and muscular degeneration. I did this when I had to appeal my denial for my disability. Sent 2 inches of paper work to the appeals court, and they must have read it because the sent my case back for a remand. Twice now.

I think the key word right now is "muscular" and how everything has affected the muscles. In the past, I have had two nerologists tell me that surgury would make it worse and they would not do the surgury. At my age, even back then, I would not opt for surgury, as I do have some use and would not take the chance of making it worse, but needed the input.

Kathy is lucky that she has a dr that would really listen. I have had two in the past. One retired and I still saw him at his home, but passed on well into his 90's and the other died from a heart attack. The only other person who has helped was the sacral cranial (sp) therapist. She actually started to get the nerves "jumping" around, but better yet, she helped me with my headaches and the lightning bolts that would go thru my head. Now, I can't afford to go back, unfortunately.

Try and gather what you can from UBPN and also print some of the pain issues talked about on this board and how it has effected them, and by all means, search for muscular degeneration articles and associated problems that occurs. You'll be surprised of the problems that go along with the muscles. Go in the back door because Erbs is the front door and it still does not register with most dr even if they know about erbs, like some us that "look" normal, I guess we shouldn't hurt.

Oh yea, what Kath said about lifting the arm with the shoulder, duh, it never ceases to amaze me what I can learn from these boards. I never realized that's what I do. No wonder my whole left quadrant is messed up. Thanks Kath for mentioning it. Not sure yet on how to do it different, it's one of those compensations issues that one does automatically without thinking.

Hope this helped a little.
Sharon 58y lobpi

Not sure this new Dr. is going to be very helpful

Post by kissygoose »

Saw the neurologist yesterday. Got off to a bad start. The first question he asked me was "when did you give birth". He thought I sustained my injury giving birth to the twins. So he said well, if you've had it since birth I'm afraid surgery isn't an option. Ok, well I'm not looking for surgery right now. So he did all the "regular" tests..."raise your hand above your head", "pull on my arm", etc. He told me that my injury wasn't that bad becuase I didn't hold my arm in a certain way. He said he thought some of my shoulder pain could be because my shoulder is freezing up for which he ordered x-rays to see if he needs to send me to an Orthopedist. He also ordered a MRI at my request but my insurance doesn't want to pay for it (mostly because the dr. didn't give a good enough reason) so I don't know if I'll be having it done or not. He gave me a script for Neurontin and told me to start taking Ibprofin for the pain in my unaffected arm and back. He is waiting to get the test results back to deturmin whether or not to send me to PT. I see him again at the end of the month. So basically I try the meds and wait. The dr. was very nice and did have some knowledge regarding BPI's but he just wasn't familiar enoughwith the long term affects of OBPI's. But this is my only option for right now because insurance doesn't want to send me out of network and because it's something I've had all my life they don't think I need treated.

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