Six weeks to a new knee - ACI for TPF after hardware removal

[KartBoy]

I thought it was time to start a new thread, I went into hospital on Friday for Arthoscopy so RNOH Stanmore could assess me for Autologus Cartilage implantation (ACI). Its taken almost four months since I was first referred to Stanmore but great news on the friday night after I came out of the general, The consultant said I think I can help you and ACI is a much better option than a partial knee replacement so he has harvested some healthy cartilage and the clock is now ticking. It will be about six weeks before the cartilage is ready and I'll be seeing him in three and finding out as he put it 'What I can and can't do for you'.

Its been thirteen months since I had the hardware removed http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=46051 which helped a little but pain just kept getting worse and reliance on medication more extreme. Its going to involve up to six more weeks when I can't put weight on the leg but I can handle that as I just could not go on as things were. I'm still a bit groggy and tired after the op but really have something to look forward to now.

Andrew 

[KartBoy]

I have appointment for follow up consultation in one month but gutted to find out when confirming appointment that he didn't harvest cartilage. I'm not sure exactly what happens next although ACI I think is still on, just don't know when at the moment. Its a major lesson, don't let them out of your sight until you have had your questions answered and understand what's happening. Its not the first time that the NHS had failed me in this area although can't fault the actual treatments to date.

[KartBoy]

I saw Professor Briggs a couple of evenings ago and he said he was happy to go ahead with the procedure, I currently under RNOH Stanmore starters orders now with possible wait of 8 - 12 weeks for first stage of MACI unless I can get my solicitor to authorise private treatment in which case the first stage can happen as early as 14th May!, no prizes as to which one I want.

I am part of a long running study but would like to read some of the papers that Professor Briggs has published as part of this study, apparently there are some on kneeguru but can't find them, anyone seen these. He has also prublished recently in the British Medical Journal, March 2010 but again not yet seen this.

Its both scary and exciting, need to know more about the rehab and actual procedure to be comfortable, Prof Briggs is great but not easy to pin down unless you have very specific questions but what he has siad so far is very encouraging.

[ellabenz]

Hi,
 Glad to hear it is going okay. Hope you get the treatment soon private or NHS. I am two weeks away from a PKR . Getting a bit nervous as it gets closer! Really don't want it but have run out of options as my patella is wrecked and after 5 years something needs to change.
Hope it goes well.
Ella 

[KartBoy]

Thanks Ella

Best of luck for your operation in a couple of weeks, I spoke to Stanmore today and they hope to be able to fix a date for first stage of MACI sometime in June, I can't imagine what five years is like, I'm struggling with dealing with two years +

Healing thoughts

Andrew

[ellabenz]

Hi andrew,

 Hope you have a date for your procedure. I am slowly recovering after my PKR. Getting used to bad pain again but hopefully it is all short term and will go.
I hope all goes well for you..
Ella

[BrokenDevil]

Thanks for starting this thread. I have been reading about MACI and have been curious as to how effective it is. Not sure what my future holds, but arthritis is definitely in the cards for me. I am hoping that I can manage it without anymore surgery. At least not until I am old enough for a knee replacement. But the MACI is a very interesting option. Please keep us posted on how it goes for you. Best of luck getting your surgery covered. I am in the US, so your terminology is a bit lost on me. As I'm sure you have heard, our way of doing things is pretty screwed up. Fortunately, my wife & I have good insurance. My hospital has billed my insurance company over $65,000 so far. Glad I'm not on the hook for that.

[KartBoy]

The first operation is a week on saturday, I still don't know anything about the rehab, hoping to learn more about that when I go in for the harvesting operation. I won't get the date for the main operation until later as this is under the control of the company that grow the new cartilage on the matric alhtough lef to believe its always six weeks so currently loloking at around 2nd August as harvesting takes place on Saturday surgical list while implantation takes place on Monday list.

Would really like to hear from someone whos' been treated on the NHS via Stanmore in the last six months or less so I can pick their brains.

12 days and counting!!!

[KartBoy]

Back home for a few hours with stage 1 of the MACI complete, the knee is very sore but I can get around on crutches ok. I've had to up my medication to Tramadol but pain knee will settle down in a few days. The surgeon (not Prof Briggs) who harvested the cells in rather pessimistically giving me a 50%+ possibility of success because the bone surface is damaged where it fractured but nurses said not to worry about that, reckon he has a habit of talking down the success rate, I don't much care at this point as anything is better than PKR at my age.

They were really on the ball at Stanmore,I arrived at 7:00am and was in theatre at 9:00! and back to ward by 10:30, nice staff on the ward and a great experience all around. I'm not sure about date for stage II but six weeks is fairly standard so were are looking at around 2nd August.

I'm not looking forward to six weeks NWB plus all the physio, etc but its a price well worth paying if I get back a functional knee.

[Grandhoux]

I'm keeping my fingers crossed for you Andrew, you deserve some luck. I hope it's successful ... you're used to pain now, it'll go away! 

[KartBoy]

Stiches out tomorrow but have to wait 8 weeks for stage 2, provisional date is 23rd Aug, its three weeks longer than expected as company wants a few more weeks to grow the implants for current 'crop' of patients  , At least the knee has settled down and its back to pre-op pain and mobility but was getting a bit concerned after 5 days.

It seems like a long wait but it will pass soon enough I guess

[KartBoy]

The loss of ROM and additional pain in the knee since they harvested was worrying me as I was instructed to strengthen the leg as much as possible before the main operation. I have now managed to see my local physio who is all set to help me once I've had the operation who also helped me with excellent advice on how to strenghten the leg, especially as I'm off on a holiday so can use the pool to push things a bit.

The advice was to exercise the lego to point of fatigue (very easy) then rest the next day!, I was exercising everyday and nothing was happening, now I know why. Still don't know how things are going to go but less than four weeks now which I know will fly by.

[KartBoy]

Its now Wednesday and I got my new knee on Monday afternoon. I posting to a diary http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=52704 but will also post here as it tells the full story. I'm too tired tonight to write anymore but happy to be home and the knee looks good.

[KartBoy]

I had the MACI a week ago today, knee still swollen but pain more than manageable. I like the design of the brace (orliman) as its much easier to open it up from time to time to allow the leg some breathing space. I have first physio on Thursday when we will try bending the knee for the first time although brace stays on until physio says so.

[KartBoy]

Its now two weeks since the MACI and recovery is doing well, rom still very limited but staples came out today which means don't need dressing anymore which will help mobilising the knee. Its still swollen but doing all the physio exercises and just hanging in there.

Stable on the medication, 4 x 50mg tramadol through the day with 500mg paracetamol plus anti-inflammatories, stomach feels ok and still mostly sleeping ok which is a real result. It really hasn't been as painful as I thought it might be although nwb is a real pain! Two more weeks of nwb, then two weeks of partial which is when we really get stuck in I think in terms of the physio.

[KartBoy]

On Monday its four weeks since the MACI and I get to put significant weight on the knee for the first time. I've been doing my exercises four times a day and have got rom up to around 95 -100 degrees although quads have really thinned down. I have been working on flexion and extension and seem to be able to get the leg almost straight which is an improvement as I had to have the brace locked at around 10 degrees the first week as I couldn't wear it locked fully straight.

In the last week I've also been able to reduce the amount of tramadol a bit which is nice so pretty much couldn't be happier although really look forward to full weight bearing in a bit over two more weeks.

[KartBoy]

Five weeks today and progress continues, It would be nice to get down to 2 tramadol a day but can't quite manage that but getting a bit more rom although being careful to not overdo exercises or push limits too far as knee swells up a bit too much by the end of the day. One more week of partial weight bearing, currently i'm putting about one third to half my weight on the leg and it feels ok.

I jarred it a few times which is painful and still wearing brace at night although now not wearing it alll during the day. I feel the progress is good and although we won't know for months if the graft has fully taken there are no obvious contraindications at the moment, I'm back to see the surgeon a week on Thursday and i'll be weight bearing by then possibly even using a cane rather than crutches but that will depend on how stable it feels with full weight on the knee, I've waited too long for this op and am not going to take any dumb risks.

[KartBoy]

Back to the clinic today for a review, just over six weeks since the surgery and weight bearing (with help of crutch). I can't say I was too impressed, the appointment was for 2:45, I got into see the registrar sometime after 4:00 and I don't really feel that he knew enough to answer my questions and give me confidence in the answers, I understand the pressures of the NHS but there has got to be a better way.

He said that hydrotherapy wouldn't do any harm and that it seemed to be healing ok but didn't give me much in the way of guidance as to the next few months except to not overload the new cartilage in the first three months. I plan to get my physio to call the Stanmore physio's and grill them for some guidance and go ahead with the hydrotherapy anyway.

[KartBoy]

Had a call from the private hospital with the hydrotherapy pool yesterday, it now looks like up to six weeks before they will be back in operation. I think by then I will be into the muscle strengthing phase which may not be so bad. Things are still going well and last couple of days have got down to just two Tramadol on waking and late evening which is great.

[KartBoy]

Just past the nine week point now and much more mobile. I'm driving but limit the distance because leg doesn't like it too much if its in the same position for too long. I had another visit to the physio on Tuesday and got a couple more exercises to torture my poor quads which are coming back steadily.

Were still working more on flexibility rather than outright strength as graft is still only at partial strength, I have rom of just under 120 which is excellent and can do five minutes on exercise bike at low resistance without a problem. I'm also cutting back the medication steadily and now find that in the evening ice is enough to settle things down.

[Grandhoux]

I'm really pleased your knee is coming along, you deserve some good luck. Sounds a bit painful, but worth it if it does the job. It may be worth you going for private physio, though, and then see if you can get it back on your compensation claim. I'm just coming to the end of a 30 x 1 hour physio sessions course and although progress was slow it's made a hell of a difference. If I'd just stuck with the NHS I'd never have got to where I am now. It really is worth it, even if you need to pay yourself. My treatment (in France) comes to around £450 which is a fair amount of money but hasn't broke the bank. I'll claim it back from the insurance when I get the final bill.

I as just thinking about the chances of a MACI over here; I'm sure the isurance would go for it, but then I realised that one of my main problems is the bend in my leg which looks to be getting worse. It's due to the tpf dropping on one side and, as it's all healed up, would be probably be impossible to remedy. I think my only option is a new knee if I want a straight leg; pity! 

[KartBoy]

I actually doubt that a private physio could beat the one I have on the NHS, it helps I think to live out in the country because its a small physio department and I see the same one everytime. I had a different physio after the original accident who was also fantastic, it may have helped that I had a TPF and now MACI as perhaps as a result they assigned me to a senior physio although they would probably say that all there physio's are really good.

Grandhoux, see if you can get a consult at Stanmore with Prof Briggs or Mr Skinner etc. You would probably represent an interesting case for them with all your tribulations, see what options they suggest. It would really be worth comparing what Royal National Orthopaedic have to say vs the doctors in France.

[Grandhoux]

At the moment we're living in France and I'm trying to get the building work done so I really don't have the time. I'm just getting on with my life as best as possible and the leg is a nuisance that I won't let hold me back. I'm hoping for a decent financial settlement which will help realise our plans but that will be some time yet, I suspect. We're about to become grandparents for the first time this Christmas, too, and life is good.

I get some pain and it does stop me from doing quite a lot of things but I'm learning to cope. It's amazing what I can do by applying a little brain power ... mind over muscle. I have made all sorts of lifting and shifting devices, trolleys etc and will be hauling full sheets of plasterboard upstairs in a week or so using a pulley system. I really enjoy this sort of stuff! I'm just finishing off installing a new kitchen, the worktops were a bit heavy but, again, a little bit of application goes a long way.

In a couple of weeks I get my hardware out, which is a nuisance, I just hope it doesn't hold me back too long. To be honest, rather than discussing my medical treatment I'd rather just forget about it! 

[KartBoy]

I've settled into doing twenty minutes of hydrotherapy in the local pool, I also try to do 15 - 20 minutes on the exercise bike every day at low intensity as we are still working on flexibility and general muscle tone rather than outright strength, were not loading the cartilage too much yet and won't for probably another six months. I haven't noticed anything after stopping the celecoxib anti inflammatory and have managed the odd day with any tramadol which is really good but still need my cane if on my feet for too long.

[ashley14]

Wishing you all the best and fingers crossed for you...im going for reconstructive surgery on a broken Tibial plateau which happend january 2010 i was also told on the 24th (after seeking a second opinion) that they could fix my knee so it will be better and the biggest worry is always the cartlidge which can only be harvested in small amounts, i go in 9 weeks time to have the fixations removed and then a small recovery period and then the rebreak and replacement of the tibial plateau break as my bone grafts are squint....let me know please how you get on...the injury is so uncommon here in Scotland especialy where i live it seems that no one understands how it is..came across the forum and sooo glad to relate to others that know what this awful situation is like.

[KartBoy]

Ashley

With all due respect to your surgeons in Scotland whatever you do don't settle for anything less than the very best treatment. If that means getting a referral to a specialist orthopaedic hospital like Stanmore then keep pushing until it happens. I would also question the surgeons about worst case recovery period, if I could change anything about the last three years (as of March 2011) it would be to have been informed better at the start and have had my expectations managed better.

I hope the surgery 'works' but your in the right place to research your injury, tpf's I think routinely cause moderate to severe cartilage damage which then leads to early onset arthritis, in my case hopefully the new cartilage they grew from a small sample has addressed the problem before the damage became untreatable. It will take up to another year or so for us to know how hard the new cartilage has become, but so far so good.

All the best

Andrew

[KartBoy]

Just came away from my third guided hydrotherapy session, its a private company but they are working well with my NHS physio and have been sent over my hospital notes. They even had a couple of students there tonight who got some useful experience with a quite rare injury (not as rare as what we would all like), maybe that's why I got an extra 10 minutes even though I was delayed and arrived late. I have been taught some useful new exercises and am happy with the way it is all going. I do self guided sessions twice a week at local pool and at six months it feels like I'm starting to make good progress although still need to be patient. It will still be a long time before we will know how well the new cartilage will bed in but the signs so far are very positive and my mobility is improving week by week.

[KartBoy]

Moved on to three sessions at the gym every week, still needing pain medications most days but manageable and have been able to rebuild the quads a little although progress isn't fast. Its about seven weeks to first anniversary and need to talk about pain with consultant. The graft has worked as I have plenty of mobility in the knee, just struggling with a knee that tires too easily for my liking.

[KartBoy]

Its a year now and been for a review at Stanmore, still getting significant pain from knee so up for MRI & arthoscopy. I've decided to start a new thread where I can report hopefully some positive developments http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=57380, I won't add any further to this thread.