I tried UW. Year waiting list. I have fought with them for years. I’m sorry I have a poor attitude at this point. Sort of resigned to the fact it it’s just gonna be like this. Fighting the medical community is like trying to swim upstream

Have you looked into hiring a Patient Advocate or going to UW's ombudsperson? Or a personal injury atty? I know you said you aren't the litigious type, but wow, if anything deserves a legal look, it seems to be your situation.

Well to be honest, I’m currently in the middle of a contentious divorce . I used to have (before knee issues) a career in environmental health and safety with a good salary which all fell apart when I had to go on disability and 2014. I’m already dealing with a lawyer who I have to file a grievance on. So basically my plates full
Protection orders property issues. It’s all ridiculous time consuming . et Cetera et Cetera et Cetera
I didn’t mean to actually go in that direction I apologize. And I can’t walk hardly. Things will get better you can’t pull off the floor. Smile

Thanks for sharing about mm. I called a doctor who prescribes, only to be told that he is not accepting any new patients. If you had said it was your ‘answer’ I would have been really bummed. I wish I had been given a cpm from the beginning, bi5 5here is no way to know who is a scar tissue former and who isn’t. I find comfort in this formum also.

@sarastafford You must really feel beaten down, I know I would. Too many things, all at once. I hope that when you get your other current issues settled that you will be able to get back into the fight for yourself and your pain. @babette has some good ideas.

@katp I really don’t know about prescribing mm, but is there only one doctor who does that in your area? Would the derivative oil (CBD?) help?

I did have a CPM after my first TKR and it did nothing for me.
JK

Nights are for me too, especially at 4 to 6 am.

They have those pill mills like Washington pain management .They are crazy. I went to one awhile back and spent 3 hours in the waiting room and 10 min with the doctor with a bill of 500

does anyone know what forms the scar tissue? Why is everyone so different? I found that the PT person makes so much difference. The first place I went was awful, the second one I tried was effective and kind. And I gained every week. Make sure you are using a really good Therapist.

and you've spoken with your Rheumatologist about your scar problems?

I understand what your going through. My doctors solution to the massive scar tissue I had was doing surgery again and again and again, 8 TKR, 10 Manipulations and finally hinged knee surgery. I can not lift my leg up from the floor and put it it on the couch All the pain for the most part is my knee xcap and sides. It feels like

@sarastafford It's hard to even imagine what you have been through. Do you see any relief in sight? Do your doctors have anything promising on the horizon? My two TKRs were successful but I think if I had read all of these that I may not have had them, or at least not the second one. I was in constant pain before the first one so that had to be done, ASAP.
JK

Thanks for asking and sharing. This is all in hind site but a doctor rationalizing a TKR every year with manipulations Thrown in at this point I’d I can’t comprehend. He knew it was scar tissue buildup excessive excessive scar tissue, Which really manifest after someone has surgery. And I don’t know if I mentioned it I did in my prior post that one of the surgeries he performed after he cut my knee/leg open it was completely infected. So that was eight weeks in a wheelchair with a pick line .The pain I’m experiencing now after the hinged knee surgery the last surgery is a different pain. It’s like the center of my leg where my knee cap is on the left and right side is hard as a rock. And the pain is excruciating. The last time I saw him he wanted to do another manipulation and send me on to a pain management specialist. Manipulation at this point I believe would be futile And then he wanted to refer me to a pathologist family medicine doctor .I don’t even know what they do or how they could possibly have anything to do with what’s going on with my my knee and my leg. If anyone has any clue what a family medicine doctor specializes in pathology could help me with I’d be glad to to listen. That was some great ideas on here about trying to go to one of the specialist at the University of Washington or something like that. No doctor will touch me and that at this point I don’t know what to do. No pain medicine no quality-of-life and no support from my doctor anymore

Yes, I did hear by phone that my rheumatologic profile is NOT responsible for the scar tissue formation. No testing was done, however. My recent sed rate was normal (high end, as usual) and crp is normal also. On CBC, platelets, high end of normal. Everything else is normal. I’m so normal, it’s ridiculous. My entire leg aches along with the pulling, ripping, and restriction of the scar tissue. I just don’t know how I can make it to the 6 month land mark for arthrolysis. It’s torture, its all torture. Staying busy is my only salvation. This is a mental/emotional as well as a physical battle.

it's all pretty awful. I can only relate a little because a girlfriend of mine suffers a similar pain, after being shot in the leg during a mass shooting at our local township meeting. She had to learn to control the pain with her mind, and it wasn't easy. She did say that after awhile, the mind does adjust and learns to minimize the pain. But it takes a long time. Have you had anyone check your veins/arteries (Popliteal especially) to make sure there is no constriction:?

I had TKR back in January 2019. I continue to build scar tissue that comes back right back. My PT claims "I lay scar tissue down faster than he has ever seen it. I'm working with my Doc ..mostly with NSAI's with on and off reduced tightness. I'm very active bikeing and Yoga all have made my leg strong but not without a lot of warming up to get it moving.

I'm sorry your are having do much trouble and I hope they solve the problem soon. Mine is minor in comparison if my blood work is clean no infection or bone problem I get ND MRI as I do have other issues a Burser, tendonites, AC issues. Again so sorry I can well imagine how hard it is. Hope you get ANSWERS SOON.