Erbs Palsy Klumpskes palsy Horners Syndrome?

(erbs palsy) #1

Hello ,Im a 39 from the Wales in the UK , when i was born i was diagnosed with Erbs Palsy i have very limited movement in my left arm no wrist rotation without force .Its taken me to now this to find out exactly what is wrong with me after requesting my medical records , from the very few records i received only going back 10 years (the rest of my life from birth is missing ) i have found out i also have damage to T1 and T2 like in Klumpskes palsy and I also have droopy eye as with Horners syndrome. I have received my xrays and MRI scans that shows lumber scoliosis concave to the right.

Every medical professional i have been to see over the years dont seem to have much knowledge on what erbs palsy is so as you can imagine how hard it has been for me to gain any information at all. From birth i have never had any treatment or any physio up until the age of 26 when i had my first physio after my FIRST xray which was useless as the physio didnt even understand what was wrong with me , it actually made my arm worse and unable to use for a week after , i decided to give it another go so when i went back i was with another physio who then told me not to do the previous exercises and gave me new exercises to do which were just as bad and to top it off they had never heard of Erbs palsy either. So you can imagine my position.

I have problems with my neck turning my head sometimes huge shooting pains to radiate up my neck into my skull , I cant sit too long as my bottom goes numb i have pain in my tail bone and have to keep changing positions to stay comfy i cant stand in one place for more than a few seconds without pain and numbness in my back, if i lean forward in a standing position my legs go dead and cold, I cant lay on my front as this causes the radiating pain into my skull.

I have searched the internet far and wide to try and get answers as to what exactly is my condition my doctor is useless so im unsure where to turn other than ask the health professionals themselves. Just to be clear this is not with regards to a medical negligence claim as in this country i am too old to make a claim.

Erbs palsy is not just a birth injury its a life changing disability that doesn’t just affect your arm it affects all parts of the body but there never seem to be any information out there that properly addresses the issues that this birth injury causes especially from the medical professionals that have treated me.

So if anyone can advise me on my condition that would be amazing as i would like to know exactly what is wrong with me.

Thanks in advance from sunny South Wales UK