I am looking for comments on my decision to delay my total knee replacement until I am either suffering too much pain or my mobility becomes to restricted.
I am 71 and suffered from arthritis in both knees for over Forty years. The right one has been the worse, until 2020.
RECENT HISTORY
29 Jan 2021 NHS X-RAY shows OA on both knee caps. There was no discernable difference between the knees but the left one was the problem. Advised to use Escape Pain app with exercise program which helped a lot.
End of Dec 2022 I lots of pain in left knee and severe difficulty walking at the start of three weeks holiday in a warm climate. I restarted the Escape Pain exercises and took the max daily dose (2 per day) of prescribed NSAIDS. I experimented with different walking methods, walking short distances with regular stops and gradually improved.
Private MRI Scan on both knees at end of Jan. This showed GRADE IV OA on both knee caps and wear on both medial joints with the left one showing complete loss of articular cartilage in places. Private consultation tells me "ultimately for me to decide" when to have TKR.
As well as the exercises given in 2021 and also had Private physio. In June I saw a GP as improvement stopped and I was finding the NSAIDS were affecting my stomach. She said the waiting list was 12 months. Therefore I asked to go on the list and reduced the NSAIDS to 1 every other day. I expected more problems with the reduced dosage but if anything I could do even more. By chance I read a newspaper article on correct walking technique and further improved my own. The waiting time was much shorter. I soon had a letter giving me options of 5 different hospitals to choose from to see a consultant. The earliest date was only two weeks. I chose an appointment at a private hospital, on the NHS list, the end of July and increased my activities as I thought I needed to feel worse in order to get referred. Again that didn't happen and at the consultation I was mostly without pain and could walk for more than 5 miles without problems if no steep hills and pain was only intermittently bad on certain movements. The consultant advised me that 30% of patients in my state found that TKR made things no better or even worse. However I agreed to be referred as I had already decided to wait at least until December as I had trips planned. I was given a form to fill in which included a question asking me to list unavailable dates. I decided to put down that I was unavailable until Jan 2024.
A few days later the hospital called me saying that they were under contract to operated within 18 weeks of referral. Therefore they would take me off the list but I would keep my place. I was told to call in December to fix a date.
I then received a letter inviting me for preoperative tests on 1st September. I was surprised as my understanding was that these only lasted a maximum of 3 months. I called them and was told that it was now 6 months.
Meanwhile my mobility didn't worsen, I kept doing the exercises and made all my trips with my friend, who was still finding that I was walking too much for her! Although that was less than I was doing on my own, with 7 or 8 miles being ok.
The hospital physio contacted me regarding my post operative situation as I was living alone. As I didn't have a date I couldn't provide details of who would take me home. I asked about deciding on a date and she suggested that I could choose a date in February and postpone if I didn't feel ready and they could do another preop.
Come December I didn't know how to proceed. I arranged a GP telephone appointment to discuss. I briefly explained the situation and said that I was able to everything I wanted to do, which isn't exactly true. There are many things I can't do which I would like to do. Some for more than 30 years as I can't sit for more that about 30 minutes with my legs bent, no theatre, cinema, or spectator sport, travel limitations. I just don't do them or find work arounds.
Running is not possible at all now having gradually reduced, walking down steep hills and within the last year walking up steep hills as well.
The GP seemed to understand but said he didn't think I would be able to put the op off indefinitely. He also said that he didn't think that I would have been referred in my current state, but I was giving him the glass half full view.
6 Dec I decided to call the hospital to discuss the options. It didn't go to well. She questioned the Physio's advice and couldn't advise me on the options. She said she would have to take advice and get back to me, but it may take time as a lot of staff were sick. I said that I was away for two weeks up to Christmas and wouldn't be contactable. I didn't get a call back that week.
The very next day I was struggling to walk again, my plans for walking more whilst away were reduced to recovery again. I had a few days at home then two weeks away to review my situation. Initially I was very cautious and considered calling the hospital to arrange a date. I didn't and after a week I was able to walk quickly and pushed myself too far and went back again. I looked at my consultations in detail and eventually reached the conclusion that I would know when I needed the TKN and hopefully I would be able to get one within two months. My knee has been locking about once a day, and it takes a few minutes until I can free it to enable me to walk. I am also finding that I am getting severe pain on certain movements more often. I recorded all my walking over the two weeks and it was actually over 100 miles. Nearly all was on the flat mostly slow, but a fair bit of brisk walking. Also walking up and down stairs to my 3rd floor room four times a day.
Back home, I am feeling very well and walking two or three miles a day. Less problems which suggest that I was over doing it when away.