Revision TKR Despair.

[Solar Cycles]

It’s been a while since I posted here.

I’m now 9 months into my second revision and all isn’t well I’m afraid The first revision was for a misaligned prosthesis, then I had a ruptured extensor mechanism that needed reconstructing, and finally a revision for a loosened prosthesis in early January this year….. I’ve also no Patella from an accident some 35 years ago.

The last visits to my consultant resulted in him requesting an ultrasound to identify continuing tibial pain that wasn’t resolved from the revision. The results came back showing varicose veins and the consultant thinks they could be contributing this, so referred me to a vascular surgeon back in June…. Still waiting for that.

Since then I’m experiencing acute pain in both the inside, outside and back of the knee, to the point that just bending down to pick my crutches up etc ( been on them for 3 years now ) results in excruciating pain in those areas.

To me it feels like a ligament issue, and this could’ve started after a Physio session in which the Physio tried to bend my knee past 110 degrees, that didn't half hurt and resulted in me making a formal complaint, which isn’t like me,

I’m now due to go on holiday to Jamaica for a belated 60th birthday celebration in 6 weeks time, I’m pretty downbeat at the moment ( again not like me ) because in the space of a few weeks my pain has gotten much worse,

I will be seeking a second opinion but to be honest I’ve lost all faith and hope in walking again pain free and without crutches.

 

[Jaycey]

@Solar Cycles So sorry you are suffering this undiagnosed pain! What was the date of your revision in January? I'll update your signature for you.

Have you tried going back to basics - ice and elevation? Something is aggravated in that knee. To get you to your birthday celebration I suggest backing off most activity and focussing on getting that knee to settle. It's obvious PT was not helpful!

Please don't give up on this. There are experts out there who can help. Where are you in the UK and who have you seen previously? I might be able to recommend someone.

 

[Solar Cycles]

Thank you for the reply.

The revision was done on the 15th January. I had my first revision and extensor mechanism reconstruction done under Mr Peter James at Nottingham, he’s now a clinical director in the private sector.

I did see Mr Richard Spencer Jones thereafter at the Robert Jones & Agnes Hunt Orthopaedic Hospital, it was planned for him to do the revision until I received notice that he was winding down from performing big revision jobs. I was then passed onto a newly qualified consultant Mr Edward U, lovely chap but not what I wanted to be honest.

I’m from Lancashire but am prepared to travel (as you can see) if it means getting the best. I may request an appointment down at Stanmore in Middlesex seen as it’s highly regarded. To be honest I’m at the point now wondering if it’s really worth putting myself through it all again, I’ve gone downhill and each op has left me in a worst place than before.

 

[Solar Cycles]

Just to add that I also suffer from impingement in the left shoulder and a torn rotator cuff in the right, which is exacerbated now by using crutches for so long, I saw a consultant regarding this but he’s reluctant to do anything after trying physio and cortisone injections. Like he said being on crutches makes it nigh on impossible for any surgical relief.

 

[Jockette]

I am so sorry to read how badly things have gone for you.

Would a frame with wheels help you, instead of crutches? But I guess we lean on a frame also, which can harm our shoulders.

 

[Layla]

Hello Solar Cycles,
I am sorry for all you've been through and also for the pain you are currently suffering from the torn rotator cuff and impingement. Hopefully your crutches are adjusted properly and not adding to the discomfort you're struggling with. For proper crutch height and position ensure the pads at the top are a couple of finger widths below the armpit. Additionally, with your arms dangling, the crutch handle should align with your wrist.

Your apprehension in moving forward is understandable, but I hope you give it another chance in an effort to lose the pain you're living with. Wishing you comfort as you make decisions and move forward.
@Solar Cycles

 

[Jaycey]

Were you OK with Robert Jones and Agnes Hunt Orthopaedic Hospital? Tony Smith (Antony Langley Smith) is a consultant specialising in knees. His numbers on the National Joint Registry are very good. If you look him up on the hospital website his bio stresses complex knee issues.

Can you afford to see a consultant privately? My strategy for both my hips was to see the consultant privately and then get on the NHS list for the op. This would work well for you as your issues are more complex. Private consultations give you time to assess whether the consultant is someone you can work with.

Please let us know how you get on!

 

[Solar Cycles]

Hello Solar Cycles,
I am sorry for all you've been through and also for the pain you are currently suffering from the torn rotator cuff and impingement. Hopefully your crutches are adjusted properly and not adding to the discomfort you're struggling with. For proper crutch height and position ensure the pads at the top are a couple of finger widths below the armpit. Additionally, with your arms dangling, the crutch handle should align with your wrist.

Your apprehension in moving forward is understandable, but I hope you give it another chance in an effort to lose the pain you're living with. Wishing you comfort as you make decisions and move forward.
@Solar Cycles

Thank you for the reply.

I’ve bought my own flexyfoot crutches to help with impact and stress caused by long term dependency mon crutches. They’ve made things a lot better in that score.

 

[Solar Cycles]

Were you OK with Robert Jones and Agnes Hunt Orthopaedic Hospital? Tony Smith (Antony Langley Smith) is a consultant specialising in knees. His numbers on the National Joint Registry are very good. If you look him up on the hospital website his bio stresses complex knee issues.

Can you afford to see a consultant privately? My strategy for both my hips was to see the consultant privately and then get on the NHS list for the op. This would work well for you as your issues are more complex. Private consultations give you time to assess whether the consultant is someone you can work with.

Please let us know how you get on!

Don’t mention him….

He was the guy who’s responsible for the misaligned TKR I had. I’m going to get the initial consultation done privately, I’ve messaged Professor Peter Kay’s secretary at Wrightington Hospital just to make sure he’s still active on the NHS, he is thankfully and his record is very good.

Failing that it would be Stanmore, but the long 4-5 hour journey down there is off putting as you’ve to remember that you’ve got that journey to make post op as well.

 

[Solar Cycles]

I am so sorry to read how badly things have gone for you.

Would a frame with wheels help you, instead of crutches? But I guess we lean on a frame also, which can harm our shoulders.

Thank you for replying.

I had thought of that and did try one but it did make things worse.

 

[Jaycey]

Peter Kay is still practicing but as you can imagine he is hard to get into see. He is one of the best. Good luck!

 

[Solar Cycles]

Good Afternoon.

I thought I’d resurrect this thread.

I’ve been persevering since I last posted as I’m due to go on holiday next Wednesday to Mexico. Up until Monday this week nothing had really changed bar night time, where my sleeping pattern had become affected due to pain whenever I moved in bed. Then I underwent an Ultrasound on Monday looking into the pain on the lower tibia of the leg and it possibly being vascular related, big mistake.

Soon after undergoing this procedure my knee swelled up like a melon and I couldn’t weight bear, I think this was down to the 30 minutes of having my leg twisted here, there and everywhere for the scan. It was excruciatingly painful for a 48 hours after.

I’ve now just got on top of the swelling with a combination of Naproxen 500mg and a Cryo/Cuff on every hour. I was really worried I’d have to cancel for next week, but now the swellings going down hopefully I’ll be ok.

it feels to me like the ligament balancing in my knee isn’t right at all, the pain is in the back of knee, and both sides at nighttime, this probably the reason why my knee swelled up so much after scan etc.

My first port of call when I come back from my holidays is a referral for a second opinion, I just hope nothing goes wrong form no to then when I’m away on holiday. I’m worried for sure and have got everything crossed for next week.

 

[Layla]

I am so sorry for the pain, lack of sleep and uncertainty you're facing. A second opinion sounds like a logical decision at this point. I wish you safe travels and hope you're able to enjoy your vacation to Mexico in peace and comfort. Please keep us posted and enjoy!
@SolarCycles

 

[Solar Cycles]

With hindsight I wish I hadn’t bothered with the Ultrasound, it’s definitely inflamed matters. Prior to that I didn’t have much swelling.

 

[lrj]

Failing that it would be Stanmore, but the long 4-5 hour journey down there is off putting as you’ve to remember that you’ve got that journey to make post op as well.

I'm in the US. I traveled 6 hours for my surgeries. If you have to do that, I'll warn you that the drive back is brutal. But the 2 trips were brutal in different ways. I was able to plan better for the second surgery, but still very rough. However, my knees are doing fantastic. I wasn't able to get the help I needed around home, so I'm better now than if I didn't go that far. Knowing everything I know now, I'd do it again.
If you decide you need to travel for surgery, message me and I'll give some pointers.

 

[Jockette]

If you decide you need to travel for surgery, message me and I'll give some pointers.

Please keep your tips on the public forum so many others can benefit from them.

 

[lrj]

Tips for travel
1. Get a power inverter to run the ice machine on. I have one that runs off the batteries for my power tools.
2. You will be sitting a long time. There are leg squeezy things that are similar to the what they use if you stay in the hospital to prevent DVT. This also helps reduce swelling. Can find many options on Amazon. I got some that charge up and then can run without being plugged in.
3. Take a wedge pillow to elevate your leg.
4. Have you pain meds where you can get to them.
5. Be prepared for nausea/motion sickness. See if you can get the anti nausea patch from the hospital. Have barf bags handy. Try any other remedies for nausea. I had some lemon/ginger/mint hard candies I ordered off Amazon. Didn't taste good, but not bad. I was not as prepared as I needed to be for the first trip.
6. Depending on the distance, break up your trip. I had to go 6 hours. Around 4 was the point that I started getting sick on the first trip. So the second one, we stopped at my aunt's which was 4 hours from the hospital. The next day, we went the 3 more hours home.
7. You don't know what will be comfortable before hand. If you know someone with a minivan with seats that fold up into the floorboard, take that. Ride home after first surgery, I was fairly comfortable sitting sideways in the back seat with a wedge pillow on the seat. After the second surgery, we kept having to stop because I couldn't get comfortable. Finally, my sister folded one of the seats down and I road the rest of the way on the floorboard.
8. Tell the hospital/doctor that you are traveling and want to spend a night in the hospital, not go home the same day.
9. When you make bathroom stops, you may need someone to help you. Obviously, use the handicap stalls, but it's different and new enough, you may need someone.
10. See if you can borrow a wheel chair. It makes maneuvering around easier when you make you bathroom stops. It's so early, and you've been sitting so much, walking more than a few feet can be very challenging.
11. Remember why you had to travel and that it will pay off in the end. I couldn't get surgery around home because I was "too young." Going through this allowed me to reclaim the rest of my life back from my knees. I'm doing wonderfully now! But the long drive will make you question your decisions. Just remember the drive is temporary and will be over when you get home.