Why is the first things drs. tell me...."Sorry surgery isn't an option"?

This board is for adults and teens to discuss issues relating to BPI since birth (OBPI).
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kissygoose

Why is the first things drs. tell me...."Sorry surgery isn't an option"?

Post by kissygoose »

I'm so tired of hearing that. Why is that have to be the only thing I'm looking for. Then when I tell them I'm not looking at surgery as an option they look at me like I sprouted 2 heads. And of course they have no idea what to tell me.

So far I have struck out with every dr. that my case manager has found for me. They all say the same thing. You aren't elegible for surgery so we can't help you at all.

There has to be help somewhere that I can get. I mean I dropped my daughter the other day because my arm was hurting so bad and my grasp was real weak. But it seams like every dr. I talk to says sorry it's happening but there isn't anything we can do. My back is so bad I can hardly move in the mornings. My unaffected hand hurts doing certain things that require fine motor skills probably cause I'm getting carpel tunnel or something due to using it exclusively. I'm so frustrated right now.

Sorry, just needed to vent.
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: Why is the first things drs. tell me....

Post by Kath »

How about talking to your case manager about seeing a "real BPI specialist"? Do you think you can make a case to see one of the doctors who specialize in bpi injuries? Try talking to the case manager and tell her/him that you MUST see a doctor who is trained and has the medical expertise to understand your injury.

Glad you came to vent... it is so frustrating to have doctor give you the run around because they do not have the courage to admit they don't know anything about obpi and the care of the adult/obpi.

Kath (robpi/adult)
Kath robpi/adult

Kathleen Mallozzi
njbirk
Posts: 1806
Joined: Wed Oct 24, 2001 10:09 pm

Re: Why is the first things drs. tell me....

Post by njbirk »

I agree with Kath.
It really makes such a difference to find a doctor who truly knows this injury or at least is willing to find out more.

My primary care physician does not know that much -- I am his only patient with this injury, but he is completely willing to listen to me and to send me to a specialist as necessary. He does not belittle my complaints.

You seem to have found a good therapist. Perhaps your doctor will listen to what the therapist has to say about your situation, which is certainly being exacerbated by caring for twins.

Nancy
kissygoose

Re: Why is the first things drs. tell me....

Post by kissygoose »

I have talked extensively to my case manager and she understand the need for me to see a specialist. The major problem is that my Insurance requires me to go "in house" if there is an acceptable substitute within the net work. She found 3 places that said (and this was after she talked to them about my condition) they could help. She was actually the one that encouraged me to call and ask more specific questions before making the trip out (the nearest one is 4 hours away). I actually have two more I have to talk to before I can appeal to go to Dr. Adelson who is the nearest specialist. Even then she was told that I have to see dr. adelson before he will refer me to the clinic he's director of. Which is going to be difficult as it's in Pittsburg which is also 4 hours away.

Luckly my pcp is great and has no qualms about sending me to a specialist. He wants me to have the best care and since he has no idea what to do he is all for sending me to whomever I can find that can help.

The other two places I have to check out are the University of Maryland and Thomas Jefferson University (where ever that is). Anyone know anything about these places?
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: Why is the first things drs. tell me....

Post by Carolyn J »

"Kissygoose",... Thomas Jefferson Hospital is in Philadelphia PA.
Good luck on your "Journey along BPI Highway to Help".
Keep on keeping on.....
((((Hugs))) & Camp 2007 or Bust!,
Carolyn J
Carolyn J
Adult LOBPI
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