Had neuro appt yesterday
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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: Had neuro appt yesterday
Christina
It is so frustrating trying to explain our issues to people who should understand and don't.
The medical professionals really don't seem to have the knowledge to care for us nor the interest.
When we were small they seemed to care but once we reach a certain age they seem to think it's not a big deal to us.
Kinda like being a new puppy... once we grow up we are no longer cute or interesting.
hmmm that sound a bit sour but sometimes I am sick of trying to talk to deaf ears and ask them to pay attention.
What really cracks me up is -- the very same doctors who turn deaf ears to us would be nuts and breaking down door if it were a member of their family in our position.
They would not want to suffer and not know the cause, reason and possibility of relief.
If they received the vague brush off answers we get they would be going from specialist to specialist and taking test after test until they had an answer.
But we are expected to just accept things they way they are and not complain after all we are use to it!
Hugs to you....
Kath ( adult/obpi)
It is so frustrating trying to explain our issues to people who should understand and don't.
The medical professionals really don't seem to have the knowledge to care for us nor the interest.
When we were small they seemed to care but once we reach a certain age they seem to think it's not a big deal to us.
Kinda like being a new puppy... once we grow up we are no longer cute or interesting.
hmmm that sound a bit sour but sometimes I am sick of trying to talk to deaf ears and ask them to pay attention.
What really cracks me up is -- the very same doctors who turn deaf ears to us would be nuts and breaking down door if it were a member of their family in our position.
They would not want to suffer and not know the cause, reason and possibility of relief.
If they received the vague brush off answers we get they would be going from specialist to specialist and taking test after test until they had an answer.
But we are expected to just accept things they way they are and not complain after all we are use to it!
Hugs to you....
Kath ( adult/obpi)
Kath robpi/adult
Kathleen Mallozzi
Kathleen Mallozzi
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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: Had neuro appt yesterday
Christina,
You continue to be in my prayers...until....
Carolyn J
You continue to be in my prayers...until....
Carolyn J
Carolyn J
Adult LOBPI
Adult LOBPI
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kissygoose
Had neuro appt yesterday
Well, my neuro appologized for the neurontin putting me in the hospital for a heart attack. It seemed that after all it was the main culprit. Now that I'm back on my old dose, my chest pains/palpitations and tightness have all but subsided. So he switched me to Lyrica because I wouldn't let him switch my anti depresants to something else (my depression is too bad right now to mess with those meds). He also prescribed PT for me but I don't know if we're going to be able to swing in financially. I have some calls to make in regards to that. He has also refered me to a Neurosurgeon for a consult on the CTS and OBPI though he said that since my tests showed only minor CTS it was unlikely that the surgeon would do the surgery. Unfortunatley my CTS, although acording to the test is minor, causes me severe symptoms. I think my dr. was trying to tell me I was a wimp. He also said that if the lyrica didn't work and the PT and surgery fell through that the only thing that might be possible would be seeing a pain specialist for temporary blocks. I can't tell you how much this depresses me. I'm going to be 33 next month and I'm facing the possibility of a life with almost debilitating pain at it's worst.
I'm still trying to get to dr. Nath but it's not easy with everything going on. I also have the letter to Dr. Addleson drafted but have been told not to be too optimistic where he is concerned. I'm considering sending a copy of the email to Dr. Nath as well. It's all just so frustrating.
I'm still trying to get to dr. Nath but it's not easy with everything going on. I also have the letter to Dr. Addleson drafted but have been told not to be too optimistic where he is concerned. I'm considering sending a copy of the email to Dr. Nath as well. It's all just so frustrating.
Last bumped by Anonymous on Mon Apr 21, 2014 5:09 am.
