Well, that was helpfull....NOT. back from ortho
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kissygoose
Well, that was helpfull....NOT. back from ortho
He told me I have a severely frozen shoulder. I'm not a candidate for surgery and there isn't anything to be done but PT.
As for the accident he said it sounds like normal pain but couldn't confirm that for some of the neuro pain I was feeling. So we have no idea what to do next.
Again I come home severly frustrated and depressed.
As for the accident he said it sounds like normal pain but couldn't confirm that for some of the neuro pain I was feeling. So we have no idea what to do next.
Again I come home severly frustrated and depressed.
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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: Well, that was helpfull....NOT. back from ortho
Christina,
You need to be seen by a BPI Specialist.
HUGS,
Carolyn J
You need to be seen by a BPI Specialist.
HUGS,
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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kissygoose
Re: Well, that was helpfull....NOT. back from ortho
I'm working on it Carolyn. I have had my medical records sent and will be doing my videos this weekend.
Oh and that's to dr. nath
Oh and that's to dr. nath
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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: Well, that was helpfull....NOT. back from ortho
Kissy
I am so glad you will see a doctor who understands bpi.
It is so hard for us always trying to find any doctor, who will listen and truly understand our injury.
It seems as if we are dealing with doctors who have a preset text book notion of OBPI and never seem to update their understanding. They all seem to think it's rare and if we have other problems it has nothing to do with our initial injuries. Very frustrating at times and sometimes we just give up. Don't give up keep tying to find a doctor who will help.
good luck
Kath robpi/adult
I am so glad you will see a doctor who understands bpi.
It is so hard for us always trying to find any doctor, who will listen and truly understand our injury.
It seems as if we are dealing with doctors who have a preset text book notion of OBPI and never seem to update their understanding. They all seem to think it's rare and if we have other problems it has nothing to do with our initial injuries. Very frustrating at times and sometimes we just give up. Don't give up keep tying to find a doctor who will help.
good luck
Kath robpi/adult
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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brandonsmom
- Posts: 1401
- Joined: Mon Nov 22, 2004 4:43 pm
Re: Well, that was helpfull....NOT. back from ortho
Kissy, I fyou only knew how many doctors offices that aI have walked out of because they knew nothing aboaut BPI, and refused to learn anything about it. I had a doctor tell me recently that my son did not have a BPI, I was imagining things, what nerve, mind you Brandon has had two surgeries, YES, IDIOT, he has a BPI, you have to find a good doctor and stick with them. Good luck !!!GAYLE
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kissygoose
Re: Well, that was helpfull....NOT. back from ortho
Apparently my pcp doesn't think too much of the ortho. I went to see my pcp yesterday because my shoulder is getting worse from the accident. When I told him what the ortho said about the frozen shoulder he asked why I wasn't a candidate for surgery. I didn't know but he gave me a look and a scoff. He's sending me to pt and also trying to get me an e-stim machine for home and wants to see me next week. He said if it doesn't start working by then he wants me in for testing to make sure there is no damage to the muscles and ligaments. I'm still on muscle relaxers. Of course all of this is for the added pain I'm having due to the accident.
He doesn't know anything about bpis and admits it freely. He just doesn't know who to send me to for for it.
He doesn't know anything about bpis and admits it freely. He just doesn't know who to send me to for for it.
Re: Well, that was helpfull....NOT. back from ortho
Kissy,
If you look in the Medical Resources there are several BPI specialists listed in your area. Or if you're interested in another just ask him to refer you to them. That is what we did with Dustin. Dustin's Dr also knew it was a BPI but freely admitted he didn't know how to treat it. He was very willing to write the referral when I told him I wanted Dustin to see the team at Mayo.
Sue
If you look in the Medical Resources there are several BPI specialists listed in your area. Or if you're interested in another just ask him to refer you to them. That is what we did with Dustin. Dustin's Dr also knew it was a BPI but freely admitted he didn't know how to treat it. He was very willing to write the referral when I told him I wanted Dustin to see the team at Mayo.
Sue
Re: Well, that was helpfull....NOT. back from ortho
You are lucky in your regular Dr...at least he admits he doesn't know alot about it. That helps sooo much. The Dr. we had before in Houston was that way. It made so much difference because it meant he was open to at least listen when I came to him with problems. So often Drs. just scoff and tell me get used to it, or it is in my head or something. Once you are able to get in with a Dr who had BPI experience, your regular Dr will still be a great help, and sounds willing to learn from the whole situation.
