Posted , 12 users are following.
I had a TKR of my right knee in 2014 (early in the year). I did well for about a week and a half. Then pain increased, my ability to walk decreased. My wound opened began draining at about 5 weeks post op. I did exactly what my surgeon suggested ( no wound culture, no tap, no antibiotics, worked hard to febrile a get the wound closed. Constant, unimaginable pain.....exponentially more than initial post op period. I told him repeatedly I felt that it was infected, that I felt I was having too much pain. Day 85 post op I could not touch my foot to the ground without excruciating pain. Labs showed likely joint infection and tap of knee confirmed it.
1 week later joint removed and antibiotic spacer placed.....worst day of my life from a pain standpoint. Went home with a PICC line and 8 weeks of IVantibiotics, Groin to knee immobilized ....I lost 55 pounds, my eyelashes and lots of my hair. A new knee was placed after 12 weeks and went as planed. I'm left with neuropathy in right leg, ongoing knee pain as well as pain from the neuropathy. I hear people say " I tease arched my surgeon so I didn't have problems"...so did I. "I did antibiotic showers and had antibiotics after so I didn't get infected" so did I. I did exactly what my surgeon told me and did my PT so I didn't have any problems"....so did I. I'm left with pain and made to feel like it's my fault. My other knee is just as bad....is anyone pain free after this? My right leg is ruined....terrified to "fix ". my left. I did my best; why can't people accept that I didn't cause this?
2 likes, 21 replies
mary0606 Jeannenp
Posted
I am so sorry this has happened to you. I am helping a very young man on another group Hip that has lost his his hip due to infection 6 months post op.
it is highly likely you got this low grade infection from the surgery itself.why are people saying its your fault ?
as far as the neuropathy have you been prescribed gabapenitn/ Neurontin, or Lyrica they help with nerve pain.
i also know a lady that has a low grade infection in her knee, and she has been put off surgery to remove her knee until end of March, I told her that was unacceptable and if she got sick she would be really unwell she also has Rheumatoid arthritis. I told her to get another opinion it's not like she has anything else to do until March as she can barely walk...
her surgeon is too old I know who he is, but some people just don't want to know.
I hope you can get some relief soon.x
Jeannenp mary0606
Posted
I am treated by a neurologist and have been treated with gabopentin and Lyrica without improvement. She has said that at this point my situation is unlikely to change.
I am comfortable that his was not my fault. It is upsetting the way people respond to my plight.....like "buck up sweetie , what a wimp".
I appreciate your response. At this point, I just live with it!
sue64229 Jeannenp
Posted
As I've said before, different things happen with different surgeons and different countries. It shouldn't be happening these days. If operating theatres were cleaned like they're supposed to and prosthesis were sterile, infections as bad as yours shouldn't happen. When it does happen, like with you, they should go out of their way to fix it.
I really feel for you. You must feel so miserable, especially with Christmas so near. There but for the grace of God .........I hope things improve for you soon. Don't pay attention to people that don't support you. You need caring, positive friends and family around you. You will get through this.
Please know im sending love and positive thoughts your way.
Sue xxx
sueisobel Jeannenp
Posted
My left TKR is over 11 years old and I have not been out of pain for over 10 years , but the one thing that eventually helped me cope were Guanethidine Blocks. You have to have a light sedative beforehand, a tourniquet is put around your raised thigh and the block is injected into your foot. It washes the nerves with an anaesthetic and calms them down; for a few days/week after you may experienced more pain than ever but, that wears off and you should experience diminished pain, if you are lucky it should last 3 to 6 months but you must have quite a few on a regular basis in order for it to work long term. The reason for the sedative; as the Guanethidine fluid enters your foot and works it way up your leg, you feel as if you are on fire inside your leg. Once done you rest until the sedative has worn off and you are discharged from the Day Surgery, You are supposed to have someone with you for 24 hours (you just sleep) and take it easy for a week or two after. This is not an alternative to the meds ou are already on, it is as well as. Worth a shot! Pain is never your fault, it is if you don't do anything about it, so kick up a stink.
The downside is NICE, you need a strong willed pain mananagement consultant on your side to say you NEED this treatment (apparently it is so expensive they are loathe to permit its use). Hope this helps
Gaby21 Jeannenp
Posted
No one really really tells you of all the pitfalls with joint replacements. Bit of a minefield I'd say.
I had my right knee 2.1/2 years ago, all was pretty fine( to a point) I've always known I've got it, if you know what I mean, the little "click" the weight of it, etc.
7 weeks ago I had a full hip replacement on my left side( opposite to knee) All great until my knee, from taking the strain off of the other side, just started playing up big time! Well actually Hamstring,which has caused my knee to go into full spasm and pain and instead of walking walking walking for the hip the last 6 weeks I've been virtually laid up unable to walk! The pain and swelling are awful! I'm on pain meds, pain patch, pain machine, I've , Physio, ultrasound and soon a cortisone injection. Now it seems to improve for a few days then go again!
My life is on hold! My hip needs strengthening and my knee now is weak! My knee bend is worse at the mo than day after knee op. Ironic!!
Thinking of you. Xx
Oldfatguy1 Jeannenp
Posted
As far as giving up on the leg as a lost cause I suggest you think about starting over in PT and take a very slow, methodical approach to rehabbing. Do the excercises, icing, elevation, rest, heavy hydration and lots of rest. You may never be an athlete again but at least you'll have some use of the leg and a better mental state. I have one additional concern that motivates me. My wife of 57 years is in a declining health situation with advanced Parkinson's disease and can no longer drive or do much around the house. She tried valiantly to keep on going but can only do the very basics of cooking and housekeeping. We have a lady come in every couple of weeks to do deep cleaning but the cooking, laundry and all the running is on me. I push myself to the point of exhaustion many days but still know I must do the basics to continue my rehabbing as I don't dare let myself go. You have a tough journey but do not give up.
As far as others and their mindset........you aren't going to change that. Narrow minded ignorance is just that. You have too much work to do to accept their problems. I had to tell a couple of my so called friends to go screw themselves. I had far to many problems to try and solve theirs. A couple quit coming around. So be it, I'm better off without them.
Gaby21 Oldfatguy1
Posted
sue64229 Oldfatguy1
Posted
About 4yrs ago, I got a cracked heel. The skin on my heel was so dry, I was always on my feet, always had stockings and closed in shoes but I got the dreaded " golden staph". It was a black hole that hurt so much and smelt terrible. I was put on antibiotics but looked after the wound myself. Eventually got rid of it, scary stuff. My leg was already weakened by post thrombotic syndrome and ulcers I get from time to time. I thought I'd lose my leg for sure but it's still there, new knee, no clot, no infection. I thank God it went so well.
Life is is a lottery. Some of us fend better than others but no one is more deserving. We are all equal there. I used the public system. Didn't cost me a single dollar for two new knees. I can't complain. I feel very lucky when I read how some, like poor Jeanne and yourself suffer. I'm 59 by the way. I had to wait 3 yrs because they reckoned I wasn't old enough.
I love over this forum. It's so good that we can advice and support each other. Thank you all.
mary0606 Oldfatguy1
Posted
Oldfatguy1 sue64229
Posted
Jeannenp Oldfatguy1
Posted
Jeannenp
Posted
Nice to have people that can relate. My deepest gratitude.
sueisobel Jeannenp
Posted
jemma33320 Jeannenp
Posted
People that have had very successful replacements without post-op complications just seem to look at us as though we're unusual and perhaps we just didn't work hard enough at rehab. It's major surgery on a weight-bearing joint and not everyone heals the same. There are so many variables that effect outcomes, and I wish I had been prepared to expect disappointment before my first surgery. Of course, we all want to think positive, but it doesn't always happen that way.
sueisobel jemma33320
Posted
Pain is no joke, but we do have to live with it. To be upset with our outcome is depressing and debilitating so, think of yourself as a minority. Minorities have more rights than those who are ok (except for those who know how to milk the system, don't get me started on that subject!!!!). We can get away with bad moods, we can insist on getting that last seat on the bus, we can get ferried around airports terminals (if we wish to), we can park our cars practicably anywhere. We are also more tolerant. I would love to have no pain, that is not possible, so I have learned to live with it, not allow it to get me down (well most of the time). There will come a time when chronic pain, like the common cold, will be defeated.
So until then, here's to the "I'm in pain and I don't care" club.
Merry Christmas, Seasons Greetings, health and happiness in 2016 to my fellow in-pain people; mines a gin & tonic please, no ice xx
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