Around September 2018 i was diagnosed with a chondrosarcoma in my upper left arm i was brought into stanmore RNOH on the 17th December 2018 and had it removed along with the humerus and ball and socket joint which was all replaced with titanium but i also suffer with grand mal epilepsy and on the 2nd January i had a seizure and fell to the floor landing on my left shoulder due to previous experience i knew how brittle titanium was so i rang my macmillan nurse to explain my worries to which she replied if you have no pain then you probably havent done any damage to it so i left it at that but while out walking i could feel my shoulder clunking about 3 times per step when i returned to stanmore on the 2nd February i had it xrayed i was told id dislocated it so the consultant pushed it back into place and sent me for another xray after the xray was taken i put my shirt back on and felt a big clunk in my shoulder once back with the consultant i only showed him my shoulder and he knew it was out again so he tried again and again to put it back in place but each time it clicked out within a few seconds it was out again a few weeks later my consultant wanted to see me and said that the medication i was on for my epilepsy sotens the bones so he would custom design me a replacement joint while this joint was being made the consultant moved to the other side of the planet and i wound up with another consultant who said that the custom joint ordered by the first consultant was wrong and that she would design and order me a different one well now its September and this replacement isnt finished being made i keep ringing the woman in the prosthetics department who keeps telling me when the rep turns up on friday she will have wordsas they know im fed up with the messing about i just think its going beyond a joke now
Hi Graham and a very warm welcome to the online community
I'm sorry to hear how much of an ordeal you've gone through and that you're still waiting for your custom joint. Although I've not been in your position I can understand how frustrated this must make you.
I'm hoping that you've had good news today as you said that the lady in the prosthetics department was going to be speaking to the rep today. However if things haven't moved on maybe it would be an idea to speak to the Patient Advisory and Liaison Service (PALS) at your hospital. Every hospital has one and they can help resolve problems you're having with the NHS.
I hope this gets resolved very soon
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
