I have a few concerns about my upcoming Total Knee Replacement surgery and would really appreciate hearing from those who have already been through this.
Main concerns.
1. Does this major joint surgery impact negatively on CLL? Thats big issue. Currently in post FCR remission.
2. What may I reasonably expect in terms of activity from the new knee.
Will I be able to ride my pedal bicycle? In otherwords will I be able to enjoy full pedal strength from my leg as I have done for the last 30yrs? I really like a good hill to pedal up!
Or am I going to be forced to invest in an ebike?
3. What pre-operative and post- operative advice, rehab and physio tips would be welcome.
4. And suggestions, encouragment and reassurance would be much appreciated.
Jig
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No knee op yet but two ops, abdominal and shoulder.
Both surgery episodes caused no problems.
Shoulder surgery was completed in early remission after FCR and no problems or effect on blood counts. The surgical team referred to the CLL consultant during pre ops. About to have a dental implant and the dentist has written to my CLL consultant.
Recovery time was as a normal person.
Physio for the shoulder was vital and very soon after the op.
No problem after one knee replacement and was walking normally 4 weeks later. Have regular physiotherapy sessions and do the exercises as recommended. The cryocuff was put on in the OR and was a terrific help. I bought that at the hospital so it was sterile in the OR. Good luck.
First of all, the "surprise" I had was that my leg was in a metal and foam brace, keeping it straight. As a result, Make sure you can get to a standing position with one leg. It took me a while to situate things in the bedroom so I could push myself up with my arms and my right leg. My bed was too soft to get good support for this, so my husband got a wood leaf from our dining room table which I would have to maneuver under my butt and hands. Then I could push down on it to get the traction I needed.
My surgery was not normal - the doctor did not attach my quad muscles properly. Within a month I rip the entire quad off and had to have another surgery. Of course a lot of blood was lost, but when I got blood work done 3 months later, my lymphocytes had gone from 22.54 in November to 10.21 . However, by July it was 20.42.
I am still having pain, but I understand from others that their pain was gone by now. I have a tricycle (Adult) and two weeks ago I took it out on pretty flat area to see if I'd be able to ride it again, and with pain, the answer is yes.(Please not that a lot of my pain is from the surgery not going right, and not what you would expect if it is done right). I went to physical therapy which helped a lot, but one of the therapist messed with my "good" leg and injured it, and I just had meniscus repair on it two days ago, and that is why I didn't say that I was riding my trike every day (plus this is Texas and it hasn't cooled off a lot yet).
If your toilet is low, you should inquire about a "lift" so the seat is higher while you recover. Getting up and down is tough. Practice on your toilet to see how getting up and down is with mostly your arms and one leg. We have two - one is higher, and I use the bathtub and sink platform to be items I can push on to stand up. Look on youtube to see if there are video's made by people who have had their knee replaced and are riding bikes. I think you will be fine if you go to the physical therapy.
I had total knee replacement surgery on my right knee about 3 years ago. It has taken that long to pretty much get back to close to normal walking. I had a long recovery because the hospital srewed up scheduling my post operative care which resulted in me not getting into rehad for about a month after the surgery. This resulted in me being unable to bend my leg fully and has resulted in a permanent slight disability/limp. I did have in-house rehab which was a joke. In my opinion, one needs as much rehab post surgery as possible, using all the machines available at the rehab clinic. Note that I was in a wheel chair for about a month after surgery, which made it very difficult to get inito the car and to the rehab center, which is why I decided for some in-home rehab care, which subsequently I discovered that it was a complete sham. I will probably get my left knee done at some point but not until is really starts to cause me problems. I had no issues with that surgery impacting my CLL. Note that I was under no treatment at the time of surgery. Am still on a w & w situation.
hi. I had total knee replacement in 2016. The first three months were frustrating but you will notice right away that the old knee pain is gone. There is pain from the surgery but that gets better every single day. Check out the web site “bone smart “ where people from all over the world post tips. Ice and elevation the first week are very important. Avoid oxy if you can. I took it for a week and got painfully constipated. My Dr said stop and take advil. Was better. Biking is actually the best exercise for knees. Strengthens every muscle and ligament. I bike, play pickleball, walk miles and miles and really feel that the surgery gave me my active life back. I can’t speak to the CLL ramifications but am going to guess they are few as long as you’re not on any meds that would interfere. I did have to take blood thinner for a short while. Go to physical therapy as soon as possible and bend knee every day a little more than the day before. The more you can bend the better the rest of life will be. I’ll stop here but if you have specific questions please let me know. Be brave! And I hope it goes well for you.
I’ve had two knee replacements and one shoulder replacement in last 6 years. I’m 7 years post BR treatment for CLL. No issues.
You should be able to ride a bike but not right away. Talk to your surgeon about timeline for recovery and activity.
Based on my experience, at 3 months you are walking without a cane but still limping a bit. At 6 months you are able to do most of what you would want to do, and at 12 months you are fully healed. At 18 months you have all your strength back.
It’s a long slog but worth it. Do your rehab work religiously. Running and other high impact activities are off the table. Walking, hiking, swimming and bike riding are good exercises. Maybe tennis, but again talk to your surgeon.
I have had both knees done1 in Uk before I was diagnosed with CLL, the second in France just 6 months before treatment. The French system of 6 weeks physio before surgery, and 6 after was fantastic- I was using just one crutch after 3 weeks and back to walking and gentle cycling in 2 months.
This pre-hab thing makes sense. Fortunately my legs are strong - while walking is tricky due to instability I can bike and even do weighted squats. I will persist! Jig
I had a total right knee replacement around 18 months ago. Recovery for the first 6 weeks was pretty darned painful but the scar healed in 3 weeks and I was back driving my car, in the pool aquajogging and using my exercycle within 2-4 weeks.
I have been on watch and wait for 4 years now with no symptoms but was concerned about the healing process. I think I asked for extra antibiotics but don’t think I had them.
I did the exercises religiously- 4-5 times a day and was lucky to have the use of a cryocuff machine for compression and icing. My sister works in sports rehab. I also bought a lazyboy chair and made sure when not in use that my leg was elevated.
I am due to have my other knee replacement in a month or so. The only thing I will do differently will be to ask for some stronger painkillers to go home with. I managed on just paracetemol and ibuprofen (trying to be staunch or maybe stupid) and some nights didn’t get much sleep at all. I’ve already talked about that with my GP and at my pre op appointments with the team at the hospital.
Oh yes I had a spinal anaesthetic rather than a general and that probably helped me a lot post op as well. Good luck! You will be fine.
I’m so looking forward to having two matching legs.
I am due a spinal - with a touch of sedation. Although I did have an inguinal hernia repair under local - was awake and watched! Is that weird - surgeon seemed happy I did!
Best wishes for you 2nd knee op! Mine is in 6 weeks - shall we stay in touch and share battle stories?
Yes it was pretty weird listening to the team talking about what they were having for dinner that night . Seems they were all into My Food Bag! And which trails they were going to cycle next weekend. For them it was all ‘in a day’s work’ I don’t think I’d want to watch. They put a big screen between you and them. Some of the sound effects were pretty 🤔
I’d be happy to keep in touch and talk about how we are progressing on different sides of the world.
Have you had your op? Mine was postponed on the morning it was supposed to happen, Hopefully now taking place on 10/01! NZ Health system in a bad way. Hopefully you have had yours by now and on the way to recovery. Go well!
My husband has CLL and had a knee replacement 2yrs ago. No issues re the CLL.
He’s previously had both hips replaced and, being absolutely honest, the knee was a lot more painful.
Two things helped his recovery; one was having twice weekly physio sessions at home - and the second was using a Continuous Passive motion machine. It’s a machine which we hired for a few weeks (the physio gave us details of where to get it from); we set it up on the settee and he used it two or three times daily ….. it kept his knee continually moving and he would adjust it gradually to get more movement. Nobody offered him one (even though the physio department at the hospital had one!) but fortunately I’d done some research and asked about it at the first appointment.
cannot comment specifically on knees, but I have had screws put in my rotator cuff and a total hip replacement with zero problems. My Ortho is very familiar with my CLL and assured me it had no bearing on my surgery outcome. Wishing you the best on your surgery and rehab.
Just a heads up on rehab, which I think is critically important. In Germany, where my wife's cousin had a TKR in a public hospital, the operation came with a several week rehab programme including physio. Don't expect the same from the NHS!
Just try to extract the absolute maximum commitment you can get by way of post-op physio, which may be very little, and get advice on how much more would be beneficial. They might give you one of those "exercises to do at home" handouts. 🙄
My ALC has been rising for about 4 years and am still in watch and wait. I had total knee about 6 years ago at the end of May. I was able to do a full rotation on an exercise bike the following August and downhill ski in December. I was biking up to 100 miles per outing the following spring. Skiing was never better with really tight control of the new knee. PT was very intensive. I asked my therapist to treat me like I was 30 years younger. It sure hurt but looking back it was so well worth it. My surgeon told me no running and try to ski on soft snow with bumps but not icy runs with bumps. Friends of mine have had very recent surgery with much shorter recovery times. One was walking a week after the operation without using her cane very much!
Go for it! Why waste time not doing the things you love?
My total knee replacement was 14 years ago and the healing was painful -- especially since I reacted badly to painkillers. I was on W & W at the time and didn't have numbers checked so don't know if there was an effect. I returned to horseback riding in about four months and haven't had any problems with that knee since. I've heard numerous stories of ongoing issues after surgery so I would suggest getting the best surgeon you can find and, as others have said, PT is essential.
Not knee but total hip replacement this past May. No problems with CLL. Had to stay off Ibrutinib for 10 days but that was it.
Most importantly…do the exercises! Do everything they tell you to do at the hospital and during PT. The elevated toilet seat is extremely helpful, but don’t use it for longer than necessary.
My orthopedic surgeon said that it is easier to get over hip replacement than knee, but some of the issues are the same for both. Even when your pain is gone, remember that it takes sometime a year to get “completely” back to normal. It takes a while for your “gait” to get normalized. You will not walk exactly the same way with your new knee as you did with your old one. It might take a while after your pain is gone. Also your balance might be off for a while, just be extra cautious. Good luck!
I have had total knee replacement on both knees. Both of my knees had worn away cartilage and were 'bone on bone'. I suffered excruciating pain in the knees for almost 10 years before I took the leap into knee surgery. In fact, I was scheduled for knee surgery and canceled 2 weeks before I was to report to the hospital because I watched the procedure on YouTube...where the ends of your bones are sawed off. A year later, the pain was too much (defined as you are lying in bed and your knees hurt with zero weight on them). I was a fool. I should have had the surgery years before. The surgery was OK, but the recovery/physical therapy afterward was not fun (but necessary). My docs told me No jogging, No running, No tennis, No activity that you have Impact on your knees. Walking, hiking, golf, bike riding, swimming, any non-impact sport is fine. I exercise 5 times a week on an elliptical machine for 45 minutes. My doc said that almost all his patients say "I wish that I had this surgery sooner". Oh, by the way, my knee surgeries were one year apart. I've read where some brave souls have them done simultaneously.......... my docs would never perform surgery on both knees in one sitting. The recovery would be a nightmare, I am sure.
Hi, I’m in UK and had two total knee replacements at the same time in Jan 2015. Yes two totals in the same op! Yes it was tough, very tough and very painful. But I’m so glad I had them done.
(This was pre my CLL diagnosis, I’m W&W)
My surgeon recommended two at once as I didn’t have a good leg to stand on while another recovered! Mine were bone on bone after many many years of tennis and netball with marathon running thrown in!
After 2 weeks the post op “brain fog” cleared and by 10 weeks I was nearly there. Within 12 weeks I was absolutely fine.
You’ll not regret having this done. Take those first few weeks easy. Don’t try to run (or cycle) before you can walk!
Rest and ice and keep your new knee elevated as much as you can. Do all your physio exercises as often as you’re advised then ice and rest.
I can honestly say I’ve not had a days pain since my recovery. It was hell for the first 10 weeks but by week 12 my surgeon was my best friend. I now chase around after my two grandchildren and do way more than I ever could before. I’m swimming again and my dog determines the distance we walk, not my knees.
I’m coming up to 65 now and just 3 months after my op I met my now fiancé. When we met I had to tell him I’d recently had two totals! Only the scars gave it away. That’s how good a recovery you can expect! I’ll skip down the aisle this December!
Take it gently and do the post op physio carefully, & remember ice ice ice! With only one knee you should be much less incapacitated than I was…
Good luck and take lots of care as well as the painkillers!
Hi Anne. I am 4th week post new knee. I have often thought about you and both knees replaced at same time. You have my huge respect, what a brave warrior you are!
My one knee is done, and I am grinding away at the rehab. But all good I think.
As an orthopedic surgeon that has done thousands of these procedures and having cared for my wife who had both of hers done here is my advice.
1. Be as physically fit as you can before. Make sure you work on your knee muscles and motion.
2. After surgery, get going the first day. Even if you have to work through some pain, that pain often dissipates a few minutes after getting going. For example, after a major back fusion, I was walking 4 miles a day within 3 days of surgery. When I hurt, I went for a walk outdoors. This was so therapeutic for my mental and physical recovery.
3. My wife, with bilateral knee replacements is skiing (4 months after surgery), biking in races, walking miles up hill every day.
4. It should NOT affect your CLL.
5. Your biggest concern with CLL after FCR is infection so make sure your CLL doc is on board to check things like your total Immunoglobulin levels and give you an infusion if they're low.
6. Take Covid precautions!!!
If you are aggressive about both pre-and post-op physical training, you should do great.
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