5 months since partial knee replacement and things are worse
Posted , 10 users are following.
Hi all,
I am now 5 months post op after having a Patellofemoral Joint Replacement. Despite being young and fit, I made slow progress at first and had awful pain. After the 8 week mark I felt I was making decent progress and by the 14 week mark had achieved full ROM, although i was still experiencing a lot of discomfort rather than severe pain in the knee (it felt like there was something tight and pushing up under the bottom of the knee - i liken it to having the edge of a shovel digging up there). At the end of August i was however managing quite long walks (up to 5 miles) on fairly steep hills despite this discomfort . Nevertheless, I never reached a point where it was less painful than before the op.
Since returning to my job as a secondary school teacher in September, everything has gone wrong and i have gone significantly backwards. Yes, I have full ROM, but the pain and discomfort has escalated significantly. The 'shovel blade' sensation is way worse and I have terrible catching and snagging of the ligaments below the knee into the calf that make me gasp in pain each time they 'snag'. There is also a sharp, quite pointed lump on the top of my tibia at the lower knee joint which seems to have appeared in the past 6 weeks. I often have a lot of pain here. There is also a great deal of pain on the outer side of the knee and an area which is painful to light pressure (feels bruised) at the top of the knee above the kneecap. The back of my knee experiences painful twinges and seems constantly swollen. I can feel strange movements and popping in my knee and the whole knee still feels tender.
I am so frustrated because i am back to limping badly, taking painkillers and and don't feel able to do any of the walking that i love. It is more painful than it was at the 3 month mark and definitely more painful than it was before i had the op. I feel i have totally ruined my life by opting to have this op. Before it, I was still managing to climb mountains and even jog, even though i had no cartilage left at all, but that is totally out of the question for me now. I keep rerunning in my head the day the surgeon said 'Ok, so are you sure this is what you want?' and I feel physically sick that i said 'yes'.
I realise my job is demanding as i am on my feet all day but I have to go to work and i don't see how i can have regressed so badly and feel something is wrong and this is a failed op. My mum had a TKR age 70 and she was pain free by the 5 month point. My neighbour is 12 years older than me and had a double TKR just 4 months before me and he has been pain free for several months and is delighted. Why am i not feeling that and only had a PKR??
I have been to my GP and am waiting to see a surgeon (who, by the way I have not seen since the day of my op and only have seen his registrar once for a five minute checkup since the op). I am terrified I will have to go through the hell of the op all over again, or even worse, be stick with this current hell for the rest of my life.
This operation was sold to me as something that would give me more of my life back, not take it away. The surgeon was a highly respected one and i trusted him. I feel angry and depressed. I am currently so depressed i haven't got out of bed today and have spent it crying. This isn't good for me or my family (i have two children age 10 and 12) and they are scared by me crying all the time.
My partner doesn't 'do' emotions and offers me no emotional support or empathy and just gets stressed by my stress. I feel in a terrible place right now and feel it's all self-inflicted because I said yes to the operation.
Sorry for this offloading (i expect most have dropped out with boredom by now!) but I feel very desperate and writing this has at least been a bit cathartic.
0 likes, 15 replies
jamesAB Caitibean
Posted
Dear Caitibean,
Please take heart, it does and it will get better.
I had a TKR 11 months ago and I can't yet walk without the aid of a Walker because of pain around the knee. However every day now it is getting better and the pain which has prevented me walking properly and which has travelled all around the knee over the months, is now slowly receeding. I am fairly confident that by Christmas I shall be walking at least with a stick.
Wishing you the very best of Luck,
Jim
Flockerx3 Caitibean
Posted
hi
this forum is the place to be , you off load all you can we are here for you and believe it will get better
RangerJack Caitibean
Posted
CBean: so sorry to read about your PKR recovery nightmare. This is an excellent forum for support and I applaud your willingness to share. I would feel exactly as you do if a similar situation happened to me after either one of my two TKRs. First order of business: please take a minute and forgive your-self, this is not your fault or punishment for some past misdeed. Also, projecting your condition into the future makes the situation much worse and can be become overwhelming and hopeless. Now, let get started. You know that the most important part of any recovery is a can-do, positive attitude. Its important to heal for your family as well as yourself. Nothing else matters including time or amount of effort required. You do whatever is necessary to recover your health. Finally, a thought. You didn't mention if your surgeon did an x-ray to check the implant for proper fit and alignment. I am thinking an error was made in the implant measurement for you knee. Similar to any part of our body, any mis-alignment causes inflammation, pain, and loss of mobility. I sincerely wish you God-speed in your recovery. RJ.
gillian65440 Caitibean
Posted
So sorry to hear that you are in so much discomfort. I wonder, with 5 mile walks etc., if maybe you have done too much too soon. That was my downfall, after doing spectacularly well after my operation.
Purplebamb00 Caitibean
Posted
I would love to hear a followup from this post I'm at 5 months from doing partials on both knees. I'm a fitness instructor and a big hiker. My right aches but my left one has severe pain. My limp has gotten much worse in the past month. I can't hike or teach my classes without major pain. I'm extremely depressed. I'm going to Yosemite next week & am so desperate for pain relief!
Caitibean Purplebamb00
Posted
I had an arthroscope to look for reasons but nothing was found other than a bit of scar tissue. Unfortunately, all that op did is set me back even further and exacerbate things.
Over the last year it has become clear that i sustained nerve damage ad a result of the op and the strange digging, pulling feeling i feel in my knee will probably never go as it is all nerve related. When i lightly tickle one area of my knee i feel strange electric shock type tingles in a completely different place in my knee. It is worse when clothing is against it as i feel a tight, deep digging and pulling deep within the knee but apparently it is caused by the damaged nerves near the surface (a kind of hypersensitivity so is worse when something moves across it). It is improved with either wearing nothing near it or compression. As a result, i try to wear loose fitting clothing (my skinny jeans have been replaced by maxi skirts) and for hiking i have discovered amazing compression leggings by 2XU. They don't move so the hypersensitivity from clothing movement is reduced. Prior to discovering them i was using sports tape or a neoprene sleeve to compress but the tape was killing my skin and the sleeves slip down.
As well as the hypersensitvity, i still get a lot of pain at the lateral side and back of my knee (and all the way down the sciatic nerve) and sometimes through the patella. All of this fluctuates and is sometimes really bad and sometimes better. It's hard to establish what makes it worse - lifting / carrying heavy things definitely contributes. So, why?
Not totally sure but it appears i am suffering from sciatica (MRI showed slight herniation of disc) and this is contributing to the pain i feel at the side of the knee. My physio says i also have ilotibial (IT) band syndrome and this is causing my patella pain as the patella is mal-tracking (pulling out of the groove) due to the IT band being tight. Frustratingly, the sciatica is improved with exercise but the IT band syndrome is exacerbated by it so i cannot win. To me, both these issues have been caused,( or at least exacerbated) by my partial knee replacement. I didn't have IT band syndrome before nor was aware of any sciatica on that side. Now the sciatica radiates from my lower back all the way down to my hip!! One consultant has tried to suggest that the pain i suffered in my knee pre-op could have been largely down to the sciatica, not my degenerative arthritis, and therefore the op didn't really solve a lot of that pain, but i was not aware of the sciatica then. He suggested the two ops and limping for a year worsened the sciatica so hence my knee pain is worse than pre-op! What a total mess!
So, what can i do? i am hiking again, but have to take gabapentin (a nerve drug, which i hate) and ibuprofen to do it. i have to use poles and i have to accept that after a particularly big hike my knee is going to hurt. I walked a lot over lockdown, clocking up about 1,200 miles in the past year and by building up my muscles i have been able to go further and further, although there are days where the pain is too bad to hike. I have been up mountains and descend slowly, often through gritted teeth.
I am bitter, because i have more problems than i had pre-op. The only thing that has improved is that awful crunching noise. Would i recommend a partial? I'd say this: be aware there are risks they don't tell you about. No-one mentioned nerve damage to me, or problems that could ensue due to walking with a limp etc following the op. Clearly, I had a particularly bad experience. I was in far more pain than i should have been post op (something was not right with that op from the start - probably sliced through nerves). No-one i knew who had had a knee replacement had experienced the pain level i did. This then set all kinds of other issues off (the sciatica, IT band issue). The second investigative op then set me back further as i was then incapacitated again, walked with a limp for longer and it probably worsened the nerve damage as well.
Maybe if it had been done on a different day, by a different surgeon, things would be better (it always niggles me that i was last on the list - was he tired? overly rough / slapdash as a result? Didn't pay so much attention to where my incision was hence the nerve damage?). Maybe.
All i know is, unless i was in total agony and unable to walk AT ALL, i wouldn't be having a partial knee replacement again because sadly, it has not made my life better. Yes, I'm hiking, but only with heavy pain relief (more than pre-op as i didn't use gabapentin then).
Ask lots of questions, do lots and lots of research. Ask about the incision - say you want nerve damage to be avoided as far as possible. Explain your pain and make sure your docs are 100% certain what the cause of that pain is and that a partial will fix it.
Caitibean Purplebamb00
Posted
My long reply was more 'my story' but didn't address what you are going through - sorry.
I wonder if, like me, your expectations were too great too soon because you are so active? Be careful because i am sure that it is the walking with a limp that caused my sciatica / IT band issues which have in turn made my knee worse. Perhaps taking it steadier now, so you don't cause inflammation that will make you limp, might help in the long run? I realise it's hard with your job but you should perhaps slow up a bit, concentrate on building up the surrounding muscles but lay off the stuff that puts pressure on your knees. Also, walk often but shorter distances and stop when you start to feel pain. I didn't because i was so desperate to be back out there, but i probably made things progress more slowly as a result.
Also, use pain relief at this point to help you avoid the limp. Naproxen maybe? I HATE using pain meds, and i think this was a problem. I avoided them as far as i could, which made me limp, which caused other issues, which exacerbated my knee pain. If i had taken them then, i might not be still taking them so much now.
I wish you all the very best and empathise with you greatly. I think it is very hard for those of us who are extremely active because we have such desperately high expectations. It makes me cross that my sister has two perfectly good knees and sits on her backside all day!!
Anyway, good luck; I hope things improve quickly - keep me posted with your progress and with any advice you might pick up!
deb71604 Caitibean
Posted
hello, sorry to hear about your troubles.
i had a bilateral knee replace feb7th . its been four months and i have go e backwards as well. My left knee is doing great , some pain and stiffness in the morning however my right knee has lots of swelling and pain around the knee and across the petella . My Physio guy thinks it is a petela tracking issue and has taped my knee and relieved some pain on the outside of my knee. however , i have pain below the knee cap which feels like shin splints and off to the outerside of the knee which is super painful . both my knees are stiff and sore in the mornings plus i find it painful to stand and walk. i have gone backwards in recovery very stressful for everyone i was walkinf and biking and now unable to do those things with being in pain
Caitibean deb71604
Posted
Hi, sorry to hear you are struggling. Remember 4 months is early days and most people improve between 6 months and a year. i think i was unlucky, particularly with the nerve damage issue.
I'm interested in your patella tracking issue because my physio said the same and taped my knee but it made no difference and i still have the issue now. After a big hike (sometimes during), I get a burning pain on the outer side of my patella and i hear a clicking noise, which i think is the patella maltracking. It coincides with sciatic pain in my lower back and down my thigh. Yesterday i went body boarding (not a sport I do regularly) and today that pain and clicking is bad. My lower back is really bad on that side too. I think it is all linked but not sure how or why!?
Persevere and focus on the goal of doing what you love. I am in pain but i am nevertheless now doing things like big hikes, biking and bodyboarding because i refuse to let this darned knee stop me. I hoped the op would take the pain away. It hasn't, but I'm not giving up yet. Off to see a new physio next week. Fingers crossed!
mary12001 Caitibean
Posted
i feel sorry for you
Im in the same boat as regards sympathy and understanding. x
Lizziefin Caitibean
Posted
hi im 16weeks post patella femoral replacement. i have horrid tightness around my knee. i also feel i was better off before op. im aware of my knee all the time. flexion and extension fine but the discomfort from tight band feeling getting me down. trying a lymphatic massage next week see if that helps
Caitibean Lizziefin
Posted
hi, sorry to hear you are having issues. 16 weeks is still early days and you may well find that the tightness improves with time. It depends what is causing the sensation i suppose. 2 years out from mine and the tightness has improved to a point, but sadly damage to my nerves has left me with a permanent odd tight feeling (particularly when wearing clothing against it) and a permanent tenderness which feels like touching a bruise, so i am still constantly aware of my knee. I have learnt to live with that better though - i remember last summer i couldn't bear to wear leggings when out on walks (had to wear shorts) but this year I can bear it. I think I have been particularly unlucky though as most people don't sustain this kind of nerve damage, so fingers crossed you will improve by the six month mark, as most people do.
I would be very interested to know how your massage goes! Good luck!
Lizziefin Caitibean
Posted
thank you for replying and I'll certainly let you know how the massage goes
Knackeredknees Caitibean
Posted
Oh Caitibean
i feel your pain i am not quite that bad but i too feel that i am worse off than before . It's meant to be life changing but in a good way. i can walk no further than i could before, can,t drive far, can't exercise, can't kneel, stairs are painful. daily constant pain, disturbed sleep. i am so angry, sad, depressed too. i've been told 12-18 months before it's normal . you are not alone and i hope you get it sorted
Knackeredknees Caitibean
Edited
Oh Caitibean
i feel your pain i am not quite that bad but i too feel that i am worse off than before . It's meant to be life changing but in a good way. i can walk no further than i could before, can,t drive far, can't exercise, can't kneel, stairs are painful. daily constant pain, disturbed sleep. i am so angry, sad, depressed too. i've been told 12-18 months before it's normal . you are not alone and i hope you get it sorted