KNEE ARTHRITIS - Autologous chondrocyte implantation (A.C.I.) :
The start to hopefully a more painfree life!! - - Posted by Jules (Jules), 22 September 2004
Hi there,
I've had a history of knee pain since my early 20's, now 38 years old and have bi-lateral osteoarthritis grade four behind the patella. Due to no injury!
Had 3 bi-lateral arthroscopies, with lateral releases, micrscopic drilling, debriding you name it, its been tried.
Now have a date for ACI at Oswestry Orthopaedic Hospital.
Went for my pre op assessment today, made me feel that after almost two years after my last op that I am finally getting somewhere, and its really going to happen.
Had bloods taken, usual observations done, and then my discussion with the registrar. Well that was not what I expected him to say.
The plan, 1st Oct have to go for my MRI on both knees, not had one of these before, so any info would grately be appreciated, he said it will take 2 HOURS!!
Then on the 19th Oct, in for not one but both knees to have yet another scope and possibly medial releases, and the right knee to have the 1st stage of ACI.
Then the 9th Nov if all goes to plan I'm to have the 2nd part of the ACI and possibly realignment and fixing of the patella.
Now in the past it has taken me up to two months to recover back to work after bi-lateral arthroscopies, so how am I suppose to non or partial weight bear on a leg that only had a scope and medial release three weeks prior!! Should I invest in a wheelchair I ask myself!! Also doing this would slow down my rehabilitation programme on the right knee (which is having the ACI treatment) wouldn't it?
Any experiences or thoughts would be gladly received as it does concern me.
Look forward to many replies... please.
Best regards
Jules
Posted by JulianUK (JulianUK), 23 September 2004
Jules,
Glad to hear that you are finally getting somewhere with ACI.
I have just has my 1 year biopsy on my left knee and it looks very good. The patella and femoral grafts have both taken and doing vey well.
I also had my right knee scoped at the same time and am back on 26th October for the second stage. Although this time only having the medial femoral condyle grafted as patella is ok.
With regard to your non-weight bearing situation I think it would be wise to get hold of a wheelchair. I'm stuggling on crutches having had both knees scoped and am worried about weight bearing on the knee that's already been done in four weeks time. I see my OS in two weeks and maybe he will have an idea as to how good my left knee will be in terms of taking all the weight.
The only consulation is that if you can't get about much than you will be less likely to damage the grafts. As the first 6-10 weeks are when you are more likely to tear them off.
Let me know if you need anymore advice.
Kind regards and good luck,
Jules.
Posted by Jules (Jules), 23 September 2004
Hi Julian,
Thanks for your reply. I have been having a look on ebay for a wheelchair, not bad prices, but the P&P is half the cost of the chair almost.
So you had ACI on one knee a year ago, is that right? and now having the other one done?
So it must have improved the knee for you to go through it again.
Did you have any MRI's, I have been looking at some replies about it and have to say that they don't sound too good, that most show no problem with the knee whats so ever, even though an xray or scope proves differently.
You will have to let me know how you get on with getting about having had ACI and a scope on the other knee. Although I should be going in for my second op 2 weeks after you have had yours.
I would like to keep in touch and compare notes, even though you can compare with your last ACI, if thats ok, may ask some silly questions along the way too, but bare with me.
Not looking forward to the 2 hour MRI, I've heard it is very noisey.
Also didn't realise they took 16 tubes of blood from you prior to the first stage, its seems unsettling that the full plan is not toatally explained, and then the next little surprise keeps popping up, you will have to have this, we will have to do that, and you will have go to that
But still holding onto the fact it should all be in a good cause.
Best Regards
Jules
Posted by blue_ezzie (blue_ezzie), 24 September 2004
Hi Jules
Can you hire a wheelchair from a hospital or pharmacy or even an ordinary rental place? Might be the best thing just to be on the safe side - you don't want to jeopardise the ACI in those early weeks! Everyone's situation is different with weight bearing though, so check with your doctor.
Also, with the MRI - I really didn't find it to be too much of a hassle at all. Mine only took about 1/2 hour and I actually drifted off! Only half of your body is in the machine, so it's not too loud, just sounds a bit like a construction site. Also, my MRI showed up more than the X-ray.
If you have any other questions, please feel free to ask (I had the second stage of the MACI procedure on my left patella in May this year)
ezzie
Posted by JulianUK (JulianUK), 25 September 2004
Hi Jules,
Just want to say that you're more tham welcome to keep in touch during your recovery. Like you say having been there it should be easier.
I did have an MRI on my left leg about 2 years ago before I underwent microfracture. It was'nt too bad although it did'nt particularly show a lot more than an x-ray. It just confirmed I needed an op, but I knew that anyway from all the pain!
One thing I am curious about is the amount of blood they want to take. I had a sample taken pre-op for testing but that was it. I would question as to why you have to undergo it. I hate having blood taken so would'nt be happy anyway.
The left leg looks very good compared to before - I have pictures of before and after. Once I scan them into my PC I'll send them to you if you want. I had my patella and femoral condyle done and the patella is the one to be more careful with. This time I don't need it doing in my right so recovery should be easier. Plus I don't have the muscle waste that I had in my left leg - as I waited a year before I got it done. Guess I'm lucky to have this one being done so quickly.
I'll know more once I've seen my OS on the 6/10. He'll be able to tell me the results of the biopsy.
By the way the Red Cross rent out wheelchairs, so try them first.
Take care,
Jules.
Posted by Jules (Jules), 25 September 2004
Hi Ezzie,
I have looked for wheelchair hire, and it cost anything between £15-£60 per week, to £40-£80 for a couple of months, so I thought it would be cheaper to buy one second hand, as I will need to use it for two or three months and then need it again when I have the left knee done in 12 months time.
Is a construction site not loud then?? Think that kind of noise would give me a huge headache after 2 hours.
Well I know how bad my knees are on xray, so don't really need to know the results of MRI, as me and the docs know I need the ACI on both knees.
How are you getting on now with walking, are you still using crutches, and are you back at work?
Best regards
Jules
Posted by Jules (Jules), 25 September 2004
Hi Julian,
About the blood taking, the reg said that they needed a decent supply of blood samples to keep the cells cultivating (if thats the right term?). Not that it bothers me too much, as I don't mind needles or blood test, I don't even mind the arthroscopies, but I am a little scared about the second ACI op, as never had open knee surgery before, and this is alot more major to cope with for me.
Yes would love to see your pics, I have a couple of my knees on my pc post three bi-lateral arthroscopies, and they are awful, don't look like knees at all, mis-shaped, swollen, and I always wear trousers because of them.
I'll send them to you if you post me your email address.
I am intending to take photos as my op and rehabilitation progresses too. I would like to ask though, did you ever get shooting pains in you ankles associated with you knee problems, the past three months since my right knee gave way badly, I have shooting pains in my right ankle and at night the severe aching pain from my knee through down to my ankle is unbearable, but the strange thing is, it goes for a short while, if I get up and walk around for a few minutes, then after a couple of hours sleep it wakes me up again.
Strange?
I have alot of muscle wastage above both knees, tried to strengthen them but the exercise bike aggrivated my knees even more, catch 22 situation I believe!
Good luck with your appointment, and I'll let you know how I get on with my MRI, and I'll also check out the red cross ... thanks.
Best Regards
Jules
Posted by blue_ezzie (blue_ezzie), 26 September 2004
Hi Jules
That's a shame that renting a wheelchair is so expensive - the hospital I was taken to after my fall actually lent me crutches free of charge for several months. If buying a wheelchair is a bit expensive, also consider an office chair - I have wooden floors in my apartment so I scooted around on an office chair to carry food and other essentials. This came in really handy because I was on crutches for about 4 1/2 months in total (2 1/2 months prior to the MACI).
With regard to the walking, I was totally non-weight bearing for about 3 weeks after the MACI. I then gradually increased the weight I was taking through my foot, finally coming off the crutches 9 weeks after the MACI. I carried a walking stick for another 6 weeks but this was mostly for security - crossing roads, catching buses, going down stairs, being in crowds etc. This was apparently pretty early to start weight bearing but my surgeon was pretty keen to get me off the crutches asap. Now my walking is pretty good - I can walk reasonably quickly without a pronounced limp, although I do get tired after walking about 10 mins or walking uphill. About three months after MACI I was back at fulltime university study and working two afternoons a week. The big difficulty I am having now is getting full flexion back in my knee - my range is 0-115 degrees, increasing slooowly.
The muscles above my left knee are still noticeably smaller, particularly the VMO Quad muscles. I spend loads of time working them - and it's particularly important for you to do so prior to the ACI because those muscles will waste away further. What exercises are you doing? Are you at physio?
With regard to the MRI.... I think I was given ear plugs actually - but I seriously do not remember it being too loud! After all I did drift off
all the best
ezzie
Posted by blue_ezzie (blue_ezzie), 26 September 2004
I forgot to add that I was also not informed about the fact that blood would be taken prior to the operation. In fact, I was never informed!! I just woke up from the first op, the harvesting op, with a huge bruise on the inside of my left arm.
Also, I have had pain in my good knee and ankle like the pain you describe...I figure it's just from the additional stress they're taking. I use heat packs, ice packs, muscle cream etc and it seems to manage it. It's a pain though!
Posted by Jules (Jules), 26 September 2004
Hi Ezzie,
Just been round the car boot, saw two wheelchairs, one had four small wheels so didn't go with that one, but it was only £25, the other was a well used large wheel one, and he wanted £45 for it, but wasn't worth it, I have my eye on one on ebay, the auction ends today, but will have to pick it up from Bedfordshire, not sure how far that is from me, have to check, but its only up for £20 so far and is only 6 months old. So will be worth the travel to pick it up.
The office chair is a good idea, but won't really work around my house, the chair is mainly for getting me out of the house in the early weeks, it will drive me mad staying all the time.
You have done really well, they have told me that I should be off work for 4 months, as I'm busy on my feet all day on the wards (midwife), but I think it will be nearer to the 6 months. But fortunately the NHS pay 6 months full pay and then 6 Months half pay for sickness.
To be honest I'm not doing any excerises now, as I did join a gym and that aggrevated them too much, I then tried to use just my exercise bike that I used after my three bi-lateral arthroscopies, but again it aggrevated them so much, I was stiff and in so much pain all the time.
About the MRI, I hope I get ear plugs too, was hoping to take a book in with me, but not sure if I will be able to lie down and hold it up for two hours, may just have to have a snooze.
Did you how much blood they took, Julian seems to think this is a lot?
The ankle pain is actually in my worst leg, the right, this is one of my worries, that having to put all my weight on my left leg, which is also bad, and it will have been scoped and maybe a medial release, how will I be able to weight bear on it, thats why I think a wheelchair will be a good investment, especially for 12 months time again when it is all repeated again.
Nice to hear from you again.
Best Regards
Jules
Posted by JulianUK (JulianUK), 27 September 2004
Hi Jules,
Firstly blue_ezzie is right about the blood taking. My PT says they do need that amount, and would explain the bruising on my arm. Did'nt have any after my first op so did'nt think to ask, and my OS never told me they needed that much. Explains why I felt faint after getting up for the first time!
Anyway still progressing Ok and the left knee is starting to calm down. I'm going to do some pool work on Wednesday and that should help get my muscles going.
When I get my latest photo's scanned in I'll send them to you.
On the ankle pain front I've never had any, however I did get a lot of hip and back pain due to poor posture and referred pain from my knee. It's probably down to your posture and gate when you walk. You're bound to be over compensating on one side more than the other.
I also had and still have muscle waste on my left leg. I have only just started to get it back, but I have to a lot of leg raises with 10kg weight on my thigh. Don't worry post-op about trying to push it too hard as I found that even the slightest overload, particularly leg presses, was enough to upset it for a week. You will have lots of up's and then some big downs, but if you take it slow and careful then it should do the job. It's the longest rehab I've had by far.
Take care,
Jules.
Posted by Jules (Jules), 27 September 2004
Hi Julian,
Glad to hear your recovery is going well. I too was interested in the pool thereapy after my previous ops, but never was offered it. Will definately use this time, heard so many good things about hydrothereapy.
I thought the ankle pain was due to how I've been walking lately, did go through a stage of hip pain but not at the moment. Its just that its only really worse at night.
Yes glad to see your photo collection, I'm not sqeemish in any way, can't be in my job!!
Hope you get on ok wednesday.
Kind Regards
Jules
Posted by blue_ezzie (blue_ezzie), 28 September 2004
Hi Jules,
Just wanted to say that hydrotherapy was probably the single best thing after MACI. Unfortunately had to wait about 6 weeks until the scar had totally closed over and I felt confident enough to go into a slippery wet area on crutches, but as soon as I got into the pool there was an enormous immediate improvement in my rehab. I still go once a week, just to walk up and down.
Julian UK is right in saying don't push it...anything that aggravates your knee like that can't be good for it. There are some things you can do yourself though, like tightening and relaxing the quad muscles and doing straight leg raises without a weight. Are you having physiotherapy?
The wheelchair sounds like a goer! Good on you. And good luck for the MRI.
ezzie
Posted by blue_ezzie (blue_ezzie), 28 September 2004
Sorry Jules, also wanted to mention that it is fantastic that you are able to get so much time off work. Make sure that you do take off as much time as you can and don't feel pressured to go back earlier than you are comfortable with. It is a major op, with a major rehab, but it's so easy for others (eg employers!) to consider it to be "just a knee".
Posted by Jules (Jules), 28 September 2004
Hi Ezzie,
Well won the wheelchair on ebay, but the seller hasn't got in touch with me about the collection of it, the auction ended Sunday?
I will definately make sure I go for the hydrotherapy as soon as they say I can start it.
I'm seeing a physio at the moment, but I will try the exercises you suggested, though on count down to two and a half weeks till first op date, its not going to do much in that time.
About my time off work, no I won't go back too soon, made that mistake the first bi-lateral arthroscopy I had, ended up having to have a further 4 weeks off.
Let you know how my MRI goes Friday, though will be Monday before I post here as going away for the weekend. Making the most of my mobility whilst I can.
Best Regards
Jules
Posted by Jules (Jules), 29 September 2004
Hi
Good news, picked up my wheelchair tonight, best thing was, won it on ebay for £71.50, but due to some wear on it the seller dropped the price to £40, BARGIN!! So very pleased I got it for the price of maybe 2 weeks hire charge.
Hope everything is going well for Jules and Ezzie. Get back to you after the weekend, if my head permits me to after a whole wedding celebration weekend away.
Best Regards
Jules
Posted by Jules (Jules), 3 October 2004
Hi,
Back save and sound.
Well the MRI was awful, felt like i was in a coffin to start with, my whole body was in and my head was just completely inside the opening. Soon got to grips with that though.
Had music on whilst was being scanned. they had to do one knee at a time, so it took just over 2 hours in the end.
But the awful bit was, that the last half an hour, as I was so stiff from lying still, that the aching in my legs became unbearable, I was in floods of tears by the time they finished, and really badly struggled to get off the scan bed.
Not in a hurry to go and repeat that experience again.
But it was was down to my legs hurting not the actual MRI scan that made my experience so bad.
Should get the results when i go into hospital in 2 weeks time for the 1st stage of ACI.
Hope you are all well.
Best regards
Jules
Updated Tue Dec 2 2008