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Re: New here and seeking information and advice

Posted: Wed Dec 01, 2004 4:17 pm
by Kath
Hi Linda
Welcome to the message boards.

I have never had surgery and have c5,c6,c7,c8 & T1 injury. There are some indications that c-4 was affected also. I have problems breathing and have been told I have restrictive airway problems... they think it is Asthma. I have always had problems walking in the cold or a windy day kills me.

I can't help you with surgery or a choice of hospital or doctors because I have not used any of the doctors for surgery. I would suggest you read the medical resource page on the website and then research and speak to doctors offices... get a feel for them and ask how many adult/obpi they have treated. See what your insurance will cover and of course what they offer in the way of treatment for your injury. While we are all obpi injured each injury is different in the way it heals and the progress we each made in gaining range of motion.

Treating adult/obpi is fairly new because most of us assumed we were the only ones with rare injury.
I was examined by a doctor in NY who is a pediatric neurosurgeon. He ordered my first real MRI for BPI.

I have restricted range of motion and Horner's. I have no external rotation nor can I supinate.

Just keep asking question and there will be so many nice people here who can help.
Welcome again
Kath

New here and seeking information and advice

Posted: Sun Apr 20, 2014 2:11 pm
by kissygoose
I never knew there was a place like this. I have Erb's Palsy in my left shoulder due to dr. neglegence. My parents didn't want me to grow up thinking I was disabled so they didn't do anything about it legally and told no one of it. I did however under go some tests and therapy but it didn't help much. All of this caused a lot of problems for me growing up but I learned to live with it. I am now 30 years old and am slowly losing more and more use of my arm. As it was very limited in the first place it frightens me. I'm also suffering from more pain and spasms than before. I'm terrified to go to the dr because I still remember some of the testing I had to go through as a child. I felt like I was in a torture camp. I've also always lived with the belief that there is nothing they can do for me especially now that I'm an adult. There are so many things I want to be able to do like just putting my own hair in a ponytail. And now with the increasing pain and weakness I'm afraid I may lose total use of my arm. I'm really not sure what to do or where to even start looking for help.