Finally... Hope after 15+ months!!
Hi Everyone,
First off, I don't know how to attach my previous thread to this one. Hopefully, the powers that be can add it to here so that anyone who doesn't know my story can read what they'd like.
A quick synopsis. I had a LTKR with the immediate onset of problems, the biggest of which is a femoral nerve that was damaged during the surgery leaving me with the inability to straight leg raise, or "kick" my leg out from the knee down. I have had MUA which in the end didn't "take" and am currently at about 60 degrees flexion and maybe 15 extension. My knee hurts all the time, I remain on Percocet every day, I use crutches to walk so that when my knee buckles I can catch myself and my knee has remained significantly swollen and stiff since day one. I also have this incredibly intense pressure above the knee/low thigh area when I try to bend it.
I've seen several specialists - spine surgeon, neurologist, neurosurgeon, an OS in my area and traveled to an OS in Manhattan, all to no avail. No one has had any suggestions whatsoever.
As far as I am concerned, my current OS "wrote me off" in early November. He has said to me... "you scare the daylights outta me and Im scared to do anything to you". We talked bizarre surgeries (removing the kneecap permanently, going in and "winging in", another MUA but he was afraid he'd break my femur this time given the massive amounts of scar tissue, etc), none of which thrilled me. My last follow up with him consisted of "if you want surgery, call. if you want a manipulation, call. if you want another appt, call". The only thing he/his office has done for me in the last four months is write my pain med script that I go pick up from the office every two weeks.
I called several big name OS in my area looking for another opinion, or even a new surgeon to take my case... and was turned down/declined by several. Most docs don't want to take on someone elses problem.
I decided to start researching myself and knew I was going to have to travel to get the care I needed. After many sleepless nights on my laptop, I ended up on the Mass General website and found the Chief of Ortho for knee replacements, read his bio and everything I could on him (along with a gazillion other docs) and called to see if he would see me.
Fast forward 9 weeks to my appt. last week. I traveled 5 hours to get there. And have NO regrets except that I didn't call him earlier. The man was AMAZING.. very kind, very thorough and sympathetic to my issues!! I brought all my test results from the doctors I had seen. They took their own xrays (in positions I have NEVER had xrays of my knee taken). He said what happened to me is very rare and he had only seen it once with a woman who had a hip replacement, but her nerve issues got better in several months. I spent 30+ minutes with him along with another doctor in the room as well. While he cannot fix the nerve issues (I totally understand that this is a permanent issue), he is completely confident that he can get me more ROM and less pain.
He asked lots of questions about my surgery and about my recovery since. He seemed bothered that my knee has always been terribly swollen and yet no one ever checked for infection.
He is going to do a total revision of the LTKR - which I ignorantly always assumed meant you replaced what went bad... but no. He is taking every bit of this knee out and replacing it all with new. He said I am full of scar tissue and it's everywhere. My scar will probably be twice as long as it is now and will cross over my original knee surgery scar from 8th grade so a skin graft or skin flap will be necessary. He told me the current knee replacement is very tight and that my femur is twisted. He said the surgery will be tough, the scar not pretty, and the recovery long. The two docs talked in great length mentioning things like quad snip and stuff like that, but I admit to being caught so off guard that he feels he can help me... I sort of got lost in their words. So I will be traveling to Boston in mid April, spending 5+ days in the hospital and then home to rehabilitate!!
So my bonesmart friends... I have hope! Finally. I have absolutely no clue what the future may hold, and I definitely know better than to say "hey, it can't get any worse" because I certainly know it ALWAYS can. but I have faith in this doctor and am comforted by his own confidence in his ability to be able to help me.
Im sure as the date approaches I will get more nervous and worried, but right now I am just excited that I have some hope!!! Anyone with any advice about knee revisions... I'd be very appreciative.
~Jill
United States
