TKR Knee from hell

[maryo52]

Not many of us can comment, nor should dare to second-guess your second opinion doc. I was lucky in that my PCP recommended two 2nd opinions. I would suggest you go get another second opinion. If they agree, you know what you need to do. If they disagree, then you can seek still another opinion, or go with your best judgment.

The Steadman Clinic in Colorado specializes in scar tissue. Amazing that the word "arthrofibrosis" didn't appear in your notes. No matter. Here an informative link for you: https://arthrofibrosis.com/practitioners/.

 

[sreilly24590]

Seems you've done all you can. As with any health related matter I try and get the best medical opinions I can and if there is a consensus no matter what that may be I have to trust the opinions of the doctors. I can't imagine the pain and frustration this has caused you. I start my EMT training in a month and am somewhat weary about kneeling but have been assured I can't hurt the knees although it may be uncomfortable. For you to get back to a more normal routine it seems you still have a journey ahead. I sincerely hope it goes well for you.

-Steve

 

[Dhare63]

Wow Eileen, sounds like its a challenging situation and no easy answers. I will tag the experts and see if they can weigh in; Orthodoc, Josephine

Thinking of you,

Dawn

 

[Orthodoc]

Kneefromhell,

I have just read through your agonizing ordeal... I wish you did not have to go through this daily pain. In your most recent note you did not mention if the second opinion thought that you suffered from CRPS.

Revision of the femoral component with more distal femoral resection (removing alittle bone from the end of the thigh bone) is potentially a good means to help restore your extension. In fact, during routine total knee surgeries, the OS will consider removing some extra distal femur (more than just removing the amount needed to replace the thickness of the prosthesis) if the patient suffered from a pre-operative flexion contracture.

Orthodoc

 

[Josephine]

I noticed that, Orthodoc! No mention of CRPS at all.

After a period of cast immobilization she could then work had with physical therapy to try to regain her flexion.

Thing is, if you do have CRPS, a cast immobilisation and aggressive PT are going to be a nightmare.

 

[hhilltop]

Eileen,
I see you have already collected some healthy responses. I can only really add that I empathize with your situation. My post op knee experience hasn't been a smooth ride, either, but it does pale in light of yours.

I will also encourage you to talk to the Great Physician - the one who made you. While on earth, He did a lot of miraculous healings. He still does. There never is a bad time to check in with Him for a second opinion.

Love and prayers,
Martha

 

[kneefromhell]

Can I just say, you guys are the best! I appreciate all the encouragement & guidance! No, he never mentioned CRPS. I have an appointment at the end of August with the original OS to review what Mayo has said. I won't be able to have any surgery until after the school year is over in June. I misses 4 months last year for the surgery and MUA. It's a long time to have to wait but hopefully it will go fast! Thank you for everything! Have a wonderful day!

 

[Dhare63]

Hang in there!

 

[kneefromhell]

The saga continues! Surgery for my revision is now scheduled for 9/26/13. I will be having it done with the OS that did the total last December (it hasn't even been a year). His plan - to replace all the parts, clean out the scar adhesions, use radiation to slow the growth of scar adhesions and then put me in a straight leg cast for about 6 weeks. My knee (& I) have been through so much I don't know how much more we can take, but I have to try something. Right now, my quality of life stinks. I could see, if I was 80 or so not doing anything, but I am far away from 80!!! I do worry that I will be stuck with a leg that doesn't bend. Right now I can only bend it 35-80 degrees. It makes walking very difficult. I have my fingers crossed and prayers to anyone that will listen that this works!
Thanks for listening to me rant this morning! Have a wonderful day!
Eileen

 

[bottomshollow]

kneefromhell, I do hope this revision, the radiation treatment and the cast are going to be the answer for you. And you know you can come here and rant and whine anytime you need to. You have every right to be frustrated and angry.

I'm going to add your name to the September surgery list. And you'll be in my prayers and thoughts during this long journey you're about to undertake.

Take care and keep us posted. We care.

 

[maryo52]

When I saw where you initially were going to put off any further surgery until after the school year, I thought, "This is going to be a very long year." So I'm not surprised that it is scheduled for September.

Having had arthrofibrosis, I am very interested in how the radiation therapy works out. I'll be keeping an eye on your thread. Best of luck to you.

 

[hhilltop]

I've been a teacher, too. Hobbling around all year with a bunch of kids would be no picnic. Soooo sorry, you are having to endure all of this. I've been picking up a lot of valuable information that I hope I never have to use reading your thread. I wrestled this year through a maze of arthrofibrosis unknowns, too, but no where the extent of yours.

I'll also be keeping an eye out for you and praying for you, too. There are healing prayer rooms all over the world that have some powerful testimonies to share. I know it isn't everyone's cup of tea, but I'd encourage you to check it out. Can't hurt and it doesn't cost. There's over a dozen locations in PA. Even if you can't get to them, you can find contacts and ask them to pray for you without you needing to go there. https://healingrooms.com/index.php?src=region&l=us2 These rooms originated with John G. Lake. You can find him at en.wikipedia.org/wiki/John_G._Lake. This site used to include information how Spokane, WA, where he started the healing rooms, was known as the healthiest town in the US. He prayed for every patient in the hospital and they became well. Seems incredulous, but it happened. I have several books about his work. I hope you will consider exploring this.

Hope you can find rest and respite from your pain and mobility issues soon.

 

[Dhare63]

Hi Eileen,

I'm glad you are getting on with the revision and scar tissue removal. I am curious about the casting your leg thing though. Long ago after ACL repair, I had an MUA. They cast my leg straight and left the cast on for 3 weeks. In my case it didn't help. I would inquire how they will keep the swelling down with the cast on. I'm sure they must have experience with this course of treatment, so I don't mean to question the OS.

I do wish you all the best. Please keep us posted as you get closer. Someone is always around to listen!

Dawn

 

[kneefromhell]

Hi everyone! It's been three days since surgery. I thought I'd check in and share my experience so far. The day started at hospital #1 for radiation therapy. It was uneventful and quick. Hopefully this treatment will slow down the growth of scar tissue. Then we headed to hospital #2 for the actual surgery. I was in recovery for about 5 hours, so they say. I really don't remember! OS said there was so much scar tissue that he had to remove. It was so bad that when I would try and bend my knee, it was actually pushing my femur out of alignment. I got all new parts put in and closed with 50 staples! OUCH!
I was supposed to be put in a straight leg cast but I now have several huge blisters (never had them before) and extreme swelling from my foot to my hip. Someone is coming tomorrow to make me some kind of custom brace to keep my leg at 0 degrees.

So, instead of going home today I am still here. Hoping to go home tomorrow.
Does anyone else have experience with blisters? They say to just leave them alone. I just want to be sure.
Thanks for listening!

 

[new knee in June]

Oh, My Gosh,
I am so sorry I missed your surgery, I wish I could of wished you the best. You have been in so much pain
For so long. I this is the answer you have been looking for. Please, take care, rest & know we care
About you
Thinking of you,
Hugs & best wishes coming your way,
Diana

 

[maryo52]

If TKR requires Herculean amounts of patience, what level of patience is required of someone in your situation? I cannot even begin to fathom. Sounds like you are in good hands. Try to remember this is a bumpy road, and most likely yours will be even bumpier. I have my fingers crossed that this does the trick. Yes, a leg with poor range of motion is not only a restriction but in my opinion a safety issue.

 

[hhilltop]

Oh, my TFH, your leg is certainly putting you through the paces. Hope you can find a comfortable position, somehow. I also hope it isn't far to your home from the hospital. That first transport can be challenging. My husband wanted to make a quick stop and I was hopping about in great pain waiting to get home and feeling every bump of the road. I haven't heard of blister reactions. You may be in a good place at the hospital where they can observe how your body is reacting - that's my very uninformed comment. I'm sure you are eager to be home, too.

Keep us posted. Thoughts and prayers and long distance hugs!

 

[kneefromhell]

This is a picture of my knee - 1 week after surgery.
The blisters seem to be getting smaller but my knee looks more black and blue every day. I am loving that my leg is straight enough to put my foot flat on the ground. Pain hasn't been that bad and I am taking Percocet throughout the day. I go back to the OS on Wednesday. I am anxious to hear what he has to say. I am dreading having the staples removed next Thursday. Any pointers on how to get through that? It was rough last time and now there are even more (52) . Thanks for all the well wishes!

Eileen

 

[new knee in June]

Hello Eileen,
So glad you are back to posting The best part was your pain is being controlled. I,m glad the blisters are getting
Smaller & you can put your foot on the ground. You sound pretty happy You shouldn't ask me about staples
I am a big baby
Take your pain meds before & look away.
Sending Best Wishes your way,
Diana

 

[speedy2]

Oh how brave you've been. You have obviously had such a rough time of it but hopefully things can only get better from now on. Keep thinking about all of the wonderful things you are going to do once you are fully recovered which will hopefully be in the not too distant future.
Big hugs. x