surgeon that does patella instability & understands bjhs

[welshgirl_michelle]

i live in south west wales and i suffer with patella dislocations of both knees & i have bjhs - i am unable to find a surgeon who specialises in patella instability & hypermobility!! i have no problem in finding surgeons who operate on patella dislocations/patella instability - but i am yet 2 find sum1 who also has a keen interest in hypermobility. ive been seen in stanmore & im awaiting 2 go in for more rehab .. even the ortho surgeon up there doesnt deal with hypermobility!! i need surgery to fix my problem but im not willing 2 go under the knife again with a surgeon who doesnt deal with the hypermobility side of things (ive had 4 major surgeries already and all have failed) could anyone point me in the right direction please?? names of surgeons who deal with patella instability & has a keen interest in hypermobility - desperately needed info .. ive suffered for 5 years now and enough is enough!! thanxs all

[nonyanomemory]

Hi I am sorry you have had such a rough time. The problem here is I think not so much that surgeons don't understand the impact of bjhs/hms/eds on the individual, its the condition itself that causes the problem. In essence surgery cannot cure stretchy collagen. It may be worth searching on knees and surgery to see if you can find any relevant posts but i am afraid many with the condition find that surgery 'may' cause more problems due to failed procedures. Each persons experience of the condition is different so no one's case can be the same as anothers. I am sure you have done just about every strengthening exercise there is to help. Unfortunately bjhs/eds/eds is not a condition that can be cured by surgery alone I only wish it were. Some I understand have found temporary relief with surgery but many have experienced great disappointment. I wish you luck in your quest.

[welshgirl_michelle]

hi thanxs 4 your reply. yes ive found that since ive had surgery i am worse off!! had a few operations before being diagnosed with bjhs!! if they could fix my dislocations i could live with bjhs - at the moment both knees dislocate on average once a month & due to the pain ive got 2 have an ambulance 2 hospital (imagine how much im costing the nhs!!!!) tried every exercises possible! i tend to give up after time tho because i dont see improvement - i should not give up i know but its easier said than done!! thanxs again

[Rosie]

Hi Michelle

Can't help with the name of a surgoen, sorry, but Stanmore shoudl definitely have an ortho who understands HMS. My DD1 had her spinal surgery done at Stanmore and we were really pleased cos she had an ortho who understood HMS, so they do exist. I know there is a shoulder guy there who understnds HMS too as he was reccomended by the HMS clinic at UCHL. Maybe ask around aqt Stanmore? I know it is a pain travelling from W Wales to Stanmore but they were excellent at providing ambulances to transport my daughter - 3 return trips in total.

Rosie

[Stone]

Should also point out that if anyone has heard of a surgeon please PM Michelle directly rather than using their name on the forum.

Stone

[welshgirl_michelle]

rosie

thanxs for your reply. i will deffo be asking next time im up in stanmore for rehab (just waiting 4 a date now) just wondering where abouts ru from?? im asking because i remember my mum mentioning that sum1 through work with her had 2 take their family member to stanmore for surgery on their back (story sounds similar to yours!!) thanxs