Pain at night while waiting for TKR

I had total hip replacement in 2022 and was never able to regain mobility, which mystified my surgeon and caused PTs to think I was "faking it." In September 2024, the surgeon and I think we may have found the cause for my problems--my knee. I injured it in a sports accident when I was 16 (60 years ago) and tore up the tendon and cartilage pretty bad. I did not have surgery at the time. My doctor told me to work on strengthening the muscles around the knee and that, aside from the times that my kneecap would be pushed to the side of my leg and the times I wore a brace to stabilize it temporarily, I didn't have many problems with it. When I was in my 40s, arthritis developed. My doctor once again told me to try exercise before going to surgery. That worked really well and I lived pretty much pain and symptom free for the next 20 years. Or so I thought.

In August 2024, all systems seemed good. I had graduated to using a cane and often using nothing at all to walk. I started pelvic floor rehab and my therapist was great and my body responded quickly to the exercises she gave me to do.

At the end of August, I suddenly lost mobility and had to go back to my walker, plus I was having a lot of pain in my thigh. When this continued for 2 weeks, my PT suggested I go back to my surgeon and get an order for her to treat it. The surgeon took x-rays and gave me the same diagnosis I'd been getting during my unsuccessful therapy sessions for my hip--inflamed TFL and IT band. I was puzzled at why this was happening, but got the order and went back to PT. She knew about my previous failures at PT and so she started me slowly on the glute exercises. The results were amazing. After one week of doing the one exercise she gave me, I was back to using my cane and not even using it that much. I swear, if I knew how, I would have been twirling that puppy like a baton!

My joy was short-lived, however. Because that pesky TFL and IT band were tight, my PT decided to massage the muscles. That was fine--until she hit something beneath the skin in my knee area. I nearly jumped off the table from the pain and even after she immediately stopped the massage, the pain lingered. We decided to call it a day whereupon I discovered that I had to struggle to walk by holding onto the wall. Finally, with my PT's help, I was able to get to my car and go home, where luckily, I'd left my walker parked in the garage close to where I got out of my car. When the pain kept getting worse, I went to the ER 3 days later. They did an extensive workup and told me that everything looked good, except for my knee, which was covered on all planes with arthritis, there was no cartilage, and some fluid was leaking from it. They sent a report and all images to my surgeon and he said it looked like I needed TKR. My insurance company agreed.

Unfortunately, I had just started seeing a new cardiologist. I have a complex heart history. Two open-heart surgeries, one in 2014 and the other in 2019, to replace my aortic valve (both times) and aortic root (last time). I had endocarditis in 2019, which was the reason for the valve and root replacement. Along with that, the infection throughout my body was severe, and most did not think I would survive. I was in a coma for 6 weeks and then on a ventilator for another 5 months. As happens when the body knows something's wrong, but doesn't quite recognize it, it threw everything it could think of at the infection. My records from that time are very thick, plus I ended up with total heart block (likely caused by nerve damage when the aortic root was replaced), and 100 percent dependency on a pacemaker. The new cardiologist was clearly put off by all of this. (As I later found out, he had only gotten out of med school 5 years earlier and had never seen anyone with records like this). So when I went back to him and said I needed his approval for total knee replacement surgery, I think he freaked out or something. He kept finding ways to delay giving me the approval, saying that he was waiting for the results of tests that he thought someone else would be doing and generally ghosting me. When it became obvious that he was not going to give me the approval in time for the surgery to be done, I cancelled it and started looking for a new cardiologist. I have an appointment on Jan. 9 with one whom I really like. I saw him before and was impressed by his empathy, knowledge, and positive attitude. I hope to get reinstated with him.

In the meantime, I'm trying to stay as stress-free as possible and not think about the doctor who abandoned me. I must use my walker now because my knee cannot be trusted. It can lock up or buckle at will (its will, that is), but other than when I'm getting into my car, it doesn't both me.

Going to bed is a different story. That's when everything hurts and I mean hurts badly. My calf, ankle, and foot swell at night (note: this is the leg they harvested a vein from to do a bypass), plus the TFL and IT band go nuts and sometimes, pain radiates from my TFL up to a spot about 6" below my waist and 2" to the left of the middle of hips. This could be related to an equestrian accident I had in my 20s where my tailbone was broken. I'm having many odd pains, however. For example, when I extended my arm to grab the side of the bed, I felt a stretch and pain in my thigh.

Tylenol isn't working. The only thing that relieves the pain in my leg, ankle, foot, and hip is to get up and walk. I'm not getting much sleep and it's beginning to take a toll on me. Has anyone else had this kind of pain or have some ideas for handling it until I can get my surgery?