ACI on lateral femoral condyle

[barnee21]

Hi everyone,

If possible I would like to get a little advice on the condition of my knee and what to expect in the near future.

First, a little background...My name is Lee and I have a 2.5cm x 2cm defect over the lateral femoral condyle. Back in september of last year I had extensive microfracture and removal of loose body, this was after a year of pestering and complaining to get things moving(another story). 6 months after the surgery I met with my OS who stated that it is unlikely that the microfracture will have any effect on the size of lesion and that ACI surgery and a bone graft will be required. As I am 33 years of age, physically fit (with the exception of this dodgy knee) I am apparently an ideal candidate for ACI. Referral has been sent to Mr Richard Carrington at the Royal orthapaedic hospital Stanmore.

There are a million questions and concerns running through my mind at the moment, some of which have been answered by the excellent posts on here from people who have already been there. Most of these I know I should ask the OS but given that this problem is now going into its third year it may be a while before we meet!!. Please bear with me and forgive my ignorance on the subject.

As I mentioned I am to have ACI and a bone graft, will these be carried out at the same time?, I have read that although recovery time ranges a fair bit the average time is 3 months, will the recovery time be lengthened by the addition of the graft?. Has anybody been under the care of Mr Carrington and what were your thoughts? The surgery if I ever get there will be performed in Stanmore, however I live in Southampton and hope that my physio can be carried out locally, has anyone had any experience of this. Sorry to go on loads more questions to ask and my frustration with the pain and waiting grows daily, I'm sure this wil be as hard mentally as it will be physicaly, I am ready for both, just want my pain free life back.

Thankyou in advance for your time and help.

Lee

[Rennschnecke]

Lee

I'm not quite sure why you think the recovery time for ACI is 3 months.  I think most people on this board are working on the basis that it will take at least 12 months to recover and it may be longer for those with kissing lesions and patellofemoral joint repairs.

Studies indicate that improvements continue for at least 4 years.

However, your definition of recovery may differ ...

[barnee21]

My apologies, my understanding was that after 3 months I would be up walking, not a full recovery, my bad!!! Do you by any chance have an answer to any of my questions, I am very confused and you seem knowledgeable.

[Rennschnecke]

Hi Lee

There are many people on this board who are highly knowledgeable and some of them are health professionals (e.g. doctors and physios).   I haven't had the procedure you will be having so some of my thoughts will be totally uneducated guesses.

I don't know, but I would guess they will be done together.  I am surmising that the bone graft is necessary for a base for the ACI.

will the recovery time be lengthened by the addition of the graft?

I don't know if the recovery time will be lengthened overall by the graft, but you may find that the early stages need to be modified.  The lateral femoral condyle is weight-bearing so you would have to be on crutches for a significant period of time post-op and either NWB or PWB.  I'd guess you would need to be like this for the bone graft as well.  The question is then whether you will be placed into a brace/immobiliser to allow the bone to strengthen at the graft.  I would imagine that you may be unable to do some of the early ROM work that many with LFC grafts can do because of the bone graft – but bear in mind that I'm making uneducated guesses here so I may be thinking along the wrong lines.

Has anybody been under the care of Mr Carrington and what were your thoughts? The surgery if I ever get there will be performed in Stanmore, however I live in Southampton and hope that my physio can be carried out locally, has anyone had any experience of this.

I have not been treated by Mr Carrington; my OS referred me on to the Midlands although Stanmore is closer (and I trusted my OS to do things in my best interests).  As a result, I have experience of living over 100 miles away from my surgeon.  I have my physio more locally but put some effort into find a good physio with experience of rehabbing from ACI.  As a result, I am still travelling but only 30 miles each way, not over 100.  I was referred to my local hospital physio initially, but it was too aggressive and I was discharged too soon.  A personal friend who is a physio said that there was no way I should have been discharged.  My personal advice is to find some physio locally who is highly experienced/knowledgeable combined with flexibility in approach and blessed with a good inventive imagination to adapt drills for you.  As you are in Southampton, I'd suggest poking around the medical school with your enquiries in the first instance.  Don't know how you would do it otherwise apart from asking Mr Carrington.

The aftermath of ACI is mentally challenging, and I am still being challenged at 13 months post-op.  Not the usual success story, but battling arthrofibrosis.  This is a common complication and it is a risk if you are likely to be immobilised for any significant time post-op.  If you find out that you will be immobilised, ask them about how they will manage the potential complications of loss of ROM etc.  Ask them about the success rates and expected recovery times for that scenario.

I know there are lots of things you will want to know (and I used to keep churning it over and over again).  There may be others out there who can help you further.

Best of luck with prepping for the next stage.

[tundi]

Hi Lee,

  I'm currently 3 months post op from my second MACI procedure performed by Mr Skinner at Spire Bushey. I also live in Southampton and have had my physio at Spire Southampton both times so there's no need to worry about having to travel up to Stanmore for all of your physio sessions.

Good luck.

[barnee21]

Thankyou very much for the replies, I am going to spend some time prior to the procedure getting as much knowledge as possible and sourcing a good trustworthy physio, from what I understand the rehab is a vital part of the process. This week the knee has been a lot more painful than usual, I work within a dockyard on some very large machines and there is a lot of climbing involved (This is not helping). My concern is that as the wait is soooo long for this procedure that I may be causing more damage to the knee, my OS seemed to think that I could carry on as normal, but with the increase in pain, instability and crepitus I am getting worried!!. Has anybody had experience of a condition worsening due to a hellish long wait for a procedure?

Thankyou again for the replies!!

Lee

[Rennschnecke]

In the two years between identifying I had a cartilage lesion to treatment, I'd gone from a 1x2 cm defect in the trochlea to kissing lesions on the trochlea and patella which eventually led to grafts totalling around 16 sq cm.  The initial try for repair didn't go ahead because the defect had grown so large.  I actually got my MACI grafts 6 months later and I don't think the defects had deteriorated much in that time, but by then I couldn't really go up steps normally anyway and had to make many adjustments including keeping my leg elevated and using a crutch.  I certainly wasn't able to be as active as it sounds as though you need to be for your work.

However, some people seem to have their defects for years before getting treatment and they don't have much deterioration.  I think it may depend on many factors so it's not easy to predict what will happen for you.

Hope it works out well though.

[barnee21]

Rennschnecke, thankyou again for your responses, its nice to hear of other peoples experiences and to know that although I am in a fair amount of pain and discomfort there is always someone worse off!!! It seems you have had quite a torrid time with your treatment and recovery, I hope it all ends well for you.

Regards

Lee

[thevoice]

I had the MACI op at Stanmoore last year - I think they usually use MACI now instead of ACI however I may be wrong on that. They will phone your local physio dept before your discharged and physio will be done locally - the MACI guidelines (from stanmoore) are weight bearing from 6 weeks although may take longer from person to person. Normally you will be in for 2 or 3 nights and sent home either in a straight leg brace or a plaster cast for 7-10 days then you start physio. MACI scar is about 3 inches normally on the inner or outer part of knee cap (yours will be outer if its lateral side). They use staples which get taken out at same time as brace/plaster comes off. Normally you see them at 7/10 days post op(although u can have the staples taken out locally like i did), 6 weeks, 12 weeks (i wasnt offered the 12 week app) 6 months, 12 months.

[thevoice]

Thankyou very much for the replies, I am going to spend some time prior to the procedure getting as much knowledge as possible and sourcing a good trustworthy physio, from what I understand the rehab is a vital part of the process. This week the knee has been a lot more painful than usual, I work within a dockyard on some very large machines and there is a lot of climbing involved (This is not helping). My concern is that as the wait is soooo long for this procedure that I may be causing more damage to the knee, my OS seemed to think that I could carry on as normal, but with the increase in pain, instability and crepitus I am getting worried!!. Has anybody had experience of a condition worsening due to a hellish long wait for a procedure?

Thankyou again for the replies!!

Lee

I was first made aware of my defect in summer 2008 and I had first stage MACI in Oct 2009 – the defect was no bigger than it was before. So the knee had not worsened. In fact because I was strengthening the knee/leg up in preparation I went in to the op in good condition. Some people will have a defect and get by for years with modification to their actives ( I avoided high impact stuff and kept to weights and cycling while waiting to get it sorted).

[barnee21]

Thanks thevoice, can I ask who carried out your surgery?, was the procedure done through the NHS or privatley? and how long did you wait between referral to treatment?

Regards

Lee

[Vickster]

thevoice - I am in the process of investigating the Active trial (ACI/MACI vs other) having been turned down by my private insurance company for AMIC (one op microfracture + membrane) but they will consider my entry into the trial and I am seeing Mr Skinner (privately) on the 20th to discuss.  My understanding is that none of these procedures are available on the NHS as NICE considers there to be insufficient data (but presumably will get involved at some level with trial funding - not quite figured that one out from the Active blurb).  I know that some insurers cover, just not mine  !  I have a 1.5cm2 lesion on the lateral FC, currently filled with fibrocartilage but tender, hence looking at options for better repair.

I assume you had your MACI done privately?  For the Active trial, it would appear that patients are randomised into either the ACI/MACI arm (surgeon decision) or other (debridement, mfx, mosaicoplasty, AMIC) and that there is no choice other than within each arm (thus both arms need to be clearly indicated and neither clearly contraindicated)

Thanks for clarifying

[Rennschnecke]

Vickster

I had my MACI funded by NHS but not as part of ACTIVE trial.  MACI is only available with NHS funding as part of an approved ongoing research programme.  This is a grey area for me.

If you have grade 3 cartilage defects you may not be considered for MACI for fear of you being left worse off.  The reason for this is that cartilage grafts are normally put onto exposed bone and if you have any cartilage covering this would need to be debrided first.  I may be wrong, but I would guess that no surgeon would undertake to remove original healthy cartilage on the off-chance that you would be better off following the graft.

However, you can discuss the options with Mr Skinner at your next appointment and hopefully you will have up-to-date MRIs for him to view.  Grade 3 defects are a bit of a bummer as you're in a kind of no-man's land – not really at bone on bone and so eligible for the range of treatments and not necessarily 100% either.  The problem is that physical condition does not necessarily correlate with function and pain but OS can only apply themselves to the physical structures.

Good luck!

[Vickster]

Hi Rennschnecke
Thanks for replying

My defect is a weird one - I knocked the cartilage off in a cycling accident, along with picking up some rather lovely bone bruising and a meniscus tear.  I had a scope 6 months ago - partial meniscectomy, shaving of a grade 3 retropatellar wear & tear defect (also have a grade II defect on tibia, left in peace) and then this wretched lesion.  My current surgeon said it would have originally been through to bone but it is covered with fibrocartilage which at the time of scope appeared to be ok - so a scarred over grade IV defect (which would be the desired outcome of microfracture). So he left it alone too (I would have had mfx if still exposed bone)

However, it has not settled - constantly swollen, sore, stiff, sometimes ore painful and is basically restricting my activity.  I can use the gym and cycle but would be lying if said it was pain free, even swimming starts to hurt after about 30-40 x 17m lengths of crawl - I cannot jog/run or swim breast stroke.  I have been resting the knee (other than swimming and normal walking) since late May as the surgeon thought it may settle, but to no avail   I can't even walk for 10 minutes without the knee starting to flare...basically it niggles constantly and I also have a swollen ankle/foot too as a result 

I had agreed to have the AMIC procedure (so debriding of the nasty tender scar tissue, no normal tissue) with a membrane applied to microfracture.  as my OS thinks this the only way to try to reduce the symptoms (he isn't a fan of MACI, I think more from the hassle and 2 op point of view rather than anything outcomes related).  However, as I said my insurers will not cover it due to lack of NICE approval (not enough data)  I have had all my treatment privately to date so am not in the NHS system. 

It's a tough one - my current OS thinks it is the only way to reduce the problem, but I can't get it paid for, hence going to see Mr Skinner about the trial (OS recommended him and will refer me).  Luckily, the insurers have agreed to fund the second opinion. I had an MRI and Xray in October which showed up the defect (and meniscus tear), patella defect found during scope.  More scans will be covered if needed - I guess that my OS will explain all the findings from the scope in the referral - better than an MRI ultimately.

It's all somewhat complicated and very frustrating.  I am not in huge amounts of actual pain, but it is abnormal, swollen and uncomfortable all the time

Apologies to the OP for the hijack!

[barnee21]

Hi all,
Firstly thankyou so much to the good people of this site for taking the time to answer posts and for the information shared that I am sure has put many minds at rest in the past as well as my own.
Vickster, hope all is going well and the pain is a little easier. Just thought I might post an update, I have been pestering the poor secretary of Mr carrington since the referal from my OS in southampton to Stanmore. Today I managed to get some more information, I had been put on the waiting list for an appointment, sooo I thought I might push my luck and called the central booking office and tried to charm the lady making the bookings!!!. Failed obviously lol but I was assured that I was on the list and would be informed in due course of the date and time,at a guess the lady reckoned that it would be late september or early october. At this point I asked if there was ever cancellations and that I would be very grateful for any notification of one to speed up the process, unlikely but worth a try I thought!!. 2 hours after the call I recieved a call back and was told of a cancellation, now booked in to see Mr carrington on the 8th of september, really pleased, it really is worth calling once a week just to keep your name in peoples minds, although I am sure I am a pain in their backside. The bottom line is pain can make a person very selfish, it sometimes makes you feel like the only person suffering, and if by being a fly in someones ear once a week I get treated quicker then so be it!!
Now I just have the small matter of what to ask Mr carrington when I see him, the A.C.I.procedure itself I have researched a lot, need to ask if the bone graft will be carried out at the time of the A.C.I. If anyone that has been in this situation can help with any questions I should be asking, please help!!!!
Rehab is something that I guess is singular to each individual, but I will need as much information prior to the procedure to prepare. Has anyone out there had a bone graft at the same time as A.C.I ? as I can't seem to find any info or posts on the subject. Also as a general rule of thumb how long will the wait be between the appointment and the first stage of surgery. Plaster or brace?. Nerve block or no nerve block?. CPM or no CPM due to the bone graft?
I have so many questions really sorry if i've asked too much!!!

Thanks in advance for any replies

Lee