KNEEtalk

The OSTEOARTHRITIS DEPARTMENT => KNEE ARTHRITIS - Articular cartilage repair => CARTILAGE REPAIR - ACI & MACI (autologous/matrix-induced autologous chondrocyte implantation) => Topic started by: barnee21 on August 04, 2010, 07:56:46 PM

Title: ACI on lateral femoral condyle
Post by: barnee21 on August 04, 2010, 07:56:46 PM
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
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 04, 2010, 08:25:21 PM
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 ...
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 04, 2010, 08:39:54 PM
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.
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 04, 2010, 09:27:47 PM
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.

Quote from: barnee21 link=topic=52455.msg510275#msg510275 date=1280948206
I am to have ACI and a bone graft, will these be carried out at the same time?
[quote
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.
Title: Re: ACI on lateral femoral condyle
Post by: tundi on August 04, 2010, 10:01:29 PM
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.
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 07, 2010, 12:13:45 PM
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
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 07, 2010, 10:41:56 PM
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.
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 08, 2010, 12:27:28 PM
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
Title: Re: ACI on lateral femoral condyle
Post by: thevoice on August 08, 2010, 12:35:54 PM
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.
Title: Re: ACI on lateral femoral condyle
Post by: thevoice on August 08, 2010, 12:40:56 PM
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).



Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 08, 2010, 12:50:05 PM
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
Title: Re: ACI on lateral femoral condyle
Post by: Vickster on August 08, 2010, 01:40:45 PM
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 :)
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 08, 2010, 03:55:48 PM
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!
Title: Re: ACI on lateral femoral condyle
Post by: Vickster on August 08, 2010, 05:32:33 PM
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!
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 12, 2010, 06:08:27 PM
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
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 16, 2010, 05:47:06 PM
Hi Tony,

I wonder if you could give me the name of the physio that helped you with your rehab in southampton, Feel that I need to make sure that I can get the rehab spot on to give myself the best chance of recovery and would hate to get there and have my PT say A.C....what?

Thanks

Lee
Title: Re: ACI on lateral femoral condyle
Post by: tundi on August 22, 2010, 09:15:47 PM
Hi Lee,

   I'm currently seeing Caroline Pepper at Spire Southampton. RNOS have a rehab protocol that is issued after your surgery, the physio team at Spire Bushey were also more than happy to provide  their contact details should my physio havbe any questions about the protocol - I'm sure this would also be true of the physio team at RNOS.

Cheers,

Tony
Title: Re: ACI on lateral femoral condyle
Post by: fed up nurse! on August 23, 2010, 06:55:06 PM
Hi Lee, sorry to hear of all your probs, knees are a nightmare! I have had an ACI at Stanmore ten years ago (I was one of the first on the ACTIVE trial) Unfortunately over the years it has worn away and so after much struggling and hasseling I got re-referred to Stanmore, I am now 3months post surgery. This time I had an MACI of the patella- femoral area, this is now apparently the preferred surgery, the ACTIVE trial has now ended. I was offered this or a partial knee replacement, I am 29 and so the MACI seemed the preferred option. I also had the surgery done under Mr Carrington. I was in hospital for three days and was given a nerve block post surgery, so pain was minimal. I was not in a CPM as you have to be in a straight leg splint for four weeks, after which I was allowed to bend to 40degrees only for another four weeks. I am now at the stage where I am trying to get back full ROM which is a lot harder then I remembered from last time! Pain has been very minimal and so far I am happy, apart from a probable infection, but hopefully that can be easily dealt with.

I hope your appointment goes well, remember to take a book, waiting times for xray can take AGES!!
Good luck xx
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 26, 2010, 06:19:49 PM
Hi fed up nurse,

Thankyou for your reply, I hope that the infection is cleared up as soon as possible and that you're progress carries on as well as it seems to be so far. Did you find Mr Carrington to be informative?, I suppose with having the surgery before you were already well informed, but I would just like to know if all the questions I have buzzing around my head are going to be answered or if i'll get rushed through. I did have an updated MRI back in febuary this year before the farce of trying to get referred, not too sure if i'll require another to get an updated view of the state of the knee. Just out of interest how long did you have to wait between you're initial appointment to getting the surgery?, Sorry for reeling off question after question but its nice to find someone firstly treated by my prospective surgeon and secondly to have been through the mill twice!!!....Ooh just one more was the nerve block offered as an option or is that normal protocal now?, think thats it for now lol.

Thanks

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 26, 2010, 11:37:17 PM
Lee, just jumping in here ...

MRIs will not necessarily be updated – they are costly to take and do not always show up the situation accurately.  As yours was recent (Feb this year?) they probably won't do another, but they may take and Xray.

Nerve blocks are not standard unless you have special medical reasons for requiring a nerve block for pain relief etc.  You can get a spinal as an option, but I've always had to request it.  Seems like surgeons don't like their piece of meat talking back to them in theatre.  However, mine was happy to talk and the anesthetist was taking photos of my knee to show to me.  Didn't think much of the fact that someone was looking at the BBC cricket news during my op though! Ha, ha!

Not too long now till your appointment.  Good luck!
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 27, 2010, 05:09:47 PM
Thanks Renschnecke!, Viewing sports during an op is a new one on me ha ha!!. Think the spinal is an option i'd rather not take, put me to sleep and tell me all about it after ha ha. Can't wait for the appointment now it feels like i'm actually moving forward, i'll be sure to let them know that I am free at any time for cancellations.....presuming I get accepted for the surgery. Need this knee to be fixed, it locked whilst I was on top of the crane today which is a new one, this hasn't happened in a while now, scary for a brief moment but after a quick kick out and disgusting crunch I was ok again. Little swollen and more painful this evening than usual. Roll on the 8th sept lets hope Mr Carrington can work some magic..................... ;D
Title: Re: ACI on lateral femoral condyle
Post by: ACE UK on August 28, 2010, 01:06:17 AM
Lee,

I had an osteotomy as well as MACI so i was given a nerve block. Great for relieving the pain but takes ages to wear off. It therefore took ages for me to pass water - no fun i can tell you! The alternative was a catheter which i was not going to even consider.
I have got a brace and i chased up the hospital before the op to ensure one was going to be provided as they cost over £100. If your op is covered by insurance then make sure they will pay for it. Generally, if it is provided/fitted after the op whilst your still in hospital, then it will be covered. If it is provided as you are leaving hospital or during an outpatients appointment then it is put in the same category as crutches and they wont. i havent been charged for crutches though!

ACE UK  8)
Title: Re: ACI on lateral femoral condyle
Post by: KartBoy on August 28, 2010, 08:01:00 PM
Hi Lee

I've just had my MACI done at Stanmore (6 days ago) under care of Prof Briggs, your going to the right place but patience will help as MACI are done on a trial basis and only if firstly they really think it will work for you, secondly if your case will tell them things that will eventually help it to become a NICE approved procedure. They have been doing ACI/ MACI's at Stanmore for years but number of patients is still in the hundreds.

Your right to contact central bookings and be prepared to put in the effort and see them at short notice as they really like that, I had to wait months but also shaved months off my wait. I'm not sure about the effect bone graft has on rehab, I'm NWB for six weeks and am strapped in a fixed brace for first week, I may have to wear the brace for entire six weeks of initial nwb, this is up to local physio.

Get a referral from your GP to local physio once you know your getting a MACI (best of luck), this establishes a connection and means that you can give Stanmore their name if/ when you go in for the op so they can send them all the appropriate protocols. I already knew my local physio's because they were involved in my TPF rehab 2 years ago but had a one-off useful session just before the MACI where I got good guidance on exercising the leg as much as possible to strengthen it before they operated.

All the best - Andrew

Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 29, 2010, 01:12:24 PM
Hi all,
Thank-you for the responses, ACEUK great information on the nerve block and I will be looking into a brace as soon as I find out that they are willing to do the procedure(fingers crossed!), although I am sure that I read somewhere that in some instances people were in a cast for a while, I guess this is all dependant on the location of the defect. Andrew - I hope that your recovery is going well, I will be sure to get a referral from my GP just as soon as I find out my fate. Just a quick question on the criteria of selection for the MACI procedure, I suppose because I had been referred by my OS in southampton (who can carry out the procedure but not in southampton as the hospital does not have the licence to do the job) I took it as red I would get approved. Now all I can do is keep everything crossed that I am a viable candidate....sorry i'm babbling.....back to the question does anyone know the things they look at to see if you are a good option for the procedure?, I am guessing that they take into consideration age, weight, levels of activity, willingness to commit to rehab, and of course the location and size of defect. If anyone knows of anything that I can do to make myself a better candidate please let me know, I am already strengthening my leg muscles as much as pain will allow, and smoking is now a thing of the past, I have dropped over a stone in weight that was actually gained after the microfracture and my levels of fitness are as good as can be expected.

Thankyou everyone again for you're replies only hope that I can be as helpful to others in the future :)

Lee
Title: Re: ACI on lateral femoral condyle
Post by: KartBoy on August 29, 2010, 04:39:56 PM
Lee

I have no idea why Prof Briggs thought I was a good candidate I was referred to him from an OS at Guy's & St Thomas' who was responding to my pleas that something must be possible, she knew of his work and didn't think I was a particularily good candidate due to the extent of the damage visible on the MRI. I had to do an extra scope at Stanmore by Prof Briggs before he would agree to go ahead.

I think its very much up to the individual surgeon as to what they have seen/ done before (themselves?) and what they think is possible. I have seen another opinion from consultant OS who thinks I'm a poor candidate who disagrees with the offer of surgery.

I think though that my activities prior to TPF two years ago are big factor, 1st degree brown belt, advanced skier, training for marathon etc and hence very fit. It meant that when I got to see Prof Briggs I was more than desperate, it was MACI or knee replacement. Prof Broggs although made it clear that my desperation had nothing to do with his decision as he wouldn't put me through a painful operation and long rehab unless there was a better than even chance that it would make a significant difference.

Best of luck when you see Mr Carrington
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 29, 2010, 04:51:00 PM
Other criteria include whether the defect has arisen from trauma or generalised osteoarthritis and whether there are stable margins for the defect to attach to.  I don't think these are things you will be able to influence.  There is a set of criteria which the surgeons work to, but I'm way outside these and my surgeon went ahead based on discussion with international colleagues.

If you're not already doing so, it may be worth taking some glucosamine & chondroitin complex (I take it with MSM: 1500mg/1200mg/250mg) and some omega-3 fish oil (1000mg/day).  They may or may not help.  There is evidence to suggest that the glucosamine complex can ease pain but this occurs only with longer term use, i.e. benefits accrue over 4 to 6 months.  There is a study by folks at Cardiff Uni that indicate that fish oil can inhibit the production of an enzyme that is implicated in the degeneration of articular cartilage.  However, I haven't found many supporting studies and my research is around 2-3 years old.

I'm also taking some hyaluronic acid with no particularly strong foundation for this apart from the fact that one OS suggested it for the Australian athlete who injured her meniscus around 1 month (or less) out from the Olympics.  She took it and with his help competed at Athens and won a bronze medal!!!!

I'm not suggesting that you'll be winning Olympic medals with this cocktail, but if you can afford it and your stomach doesn't object I don't think they will do you any harm!  ;)
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 29, 2010, 07:07:48 PM
Thanks Andrew, fingers crossed I am seen as a suitable candidate, keep us all posted on your progress through your rehab.

Rennschnecke, I will try anything to get things back on track, out of interest on the criteria for MACI you suggested that trauma or osteoarthritis could be part of the criteria. Initial diagnosis from my OS in Southampton was osteochrondritis dissecans, but after discussion about an accident at work it is now unclear as to what caused the problem, hope this doesn't complicate matters further!!!

Slight concern today the knee effectively locked up and after freeing it up a great deal of pain and muffled swearing(9 year old daughter close by) I am now in quite an amout of pain, the pain I can deal with, what is playing on my mind is that prior to the microfracture and the removal of the loose body this was happening quite frequently, I hope beyond hope that I do not have more bone/cartilege floating around. I will have to mention this to Mr carrington at the appointment.

Happy bank holidays (lays back on sofa and elevates knee)
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 29, 2010, 07:15:19 PM
Lee, just checking whether you're trying elevating leg above heart level to ease pain – much more effective than hip level ...
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 31, 2010, 05:26:44 PM
Thanks Rennschnecke, added some extra cushions and helped a lot.

Looking to comple a list of questions for my visit to Stanmore this evening, early finish from work and little one is around a friends for tea.

Any input as to questions that I should be asking that I might well oversee would be much apreciated.

So far I have the following queries: Approximate waiting time for surgery, Will the bone graft complicate or extend rehab?,Pain relief?, How much time will be spent in hospital after surgery. Rehab protocol, will I need to find my own physo with experience of MACI recovery? Estimated time of recovery( I know this is very vague, but I need to tell my employer something) Do I need to source a brace myself prior to surgery?. Also need to discuss my expectations of the surgery and how realistic they are. I have heard quite a lot from people on here regarding Prof. Briggs and Mr skinner but little about Mr Carrington I guess this is a little cheeky but I would like to know his previous experience of this type of Operation.

8 days until the next step, fingers crossed I hear some good news and not a knock back!!!

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 31, 2010, 05:54:14 PM
Lee,

Mr Carrington needs to be suitably licensed to perform the op, but I understand your concerns.  Are you having this done privately or on the NHS?  If it is NHS funded then he is likely to be part of an elite group who has been given a budget to use on this procedure.

As far as questions for the OS are concerned, perhaps rather than talk about recovery, as that term has a multitude of interpretations, you could ask when you might expect to go back to work and what adjustments may have to be made to enable this.  Ask the surgeon if he would be prepared to write any supporting letters required to assist the process.  Consider how you will be getting about, when will you be able to drive (assuming you already drive)?  Also ask about weightbearing constraints and whether you will need a CPM, would you be provided with one or should you sort one out yourself.  One thing I didn't have at the time and with hindsight wish I'd had was an icing machine.  Ask if one will be provided or whether you need to get hold of one – also ask for recommendations.

Can't think of much else at the moment. 

I actually didn't have much formal physio for the first 6 weeks.  I saw a hospital physio who didn't do much apart from give me loads of exercises which filled in all the time off the CPM.  My private physio who is ACI experienced said there wasn't much for she could do for me until after 6 weeks post-MACI so I wouldn't fret too much about the physio for now – you have time to sort this out.

Good luck next week!
Title: Re: ACI on lateral femoral condyle
Post by: Vickster on August 31, 2010, 06:06:58 PM
Mr Carrington, IIRC, is one of the ACTIVE trial surgeons at Stanmore, so I am sure he knows what he is doing.  Have you looked at his bio on the RNOH / Bushey Spire websites? :)  Is your op being done as part of the trial / on the NHS?  If so, from what I understand, for the trial, they cannot say for definite whether it will be (M)ACI or something else (like mosaicoplasty, AMIC).  As was said before somewhere, (M)ACI is not usually an option on the NHS, NICE says only as part of a trial.

When I saw Mr Skinner 10 days ago, he said 3-4 days in hospital, brace (which I assume they provide), crutches.  I didn't get into details, but these ops seem to come with 6-8 weeks off work and driving for starters.  I was also told a year to seeing much benefit at all and 2 years to real improvement (obviously varies from person to person).  Part of the reason I have not decided what to do.  Mr Skinner also said that he would need to scope first to even see whether the defect was appropriate for (M)ACI repair - if so, would harvest the cells at that point.

If you look at the ACTIVE trial site, there is lots of detail around physio & rehab protocols etc for the different types of procedure.
Title: Re: ACI on lateral femoral condyle
Post by: thevoice on August 31, 2010, 06:57:12 PM
its refreshing to hear the time scale to improvement/benifit put at between 1-2 years. Having gone through the MACI op and nealry 9 months down the line it derfintily seems to be a case of good days and bad days with it still.
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 31, 2010, 07:22:43 PM
Vickster,

The time off work tends to vary depending on what work you do, where the defect is and what the OS considers to be the likely outcome.  Some people have gone back to work at 2 or 3 weeks, albeit part-time.  But it was good enough for their employers.  Some people have had a full 6 months off because there was no way they could do their job before then.

That said, 6 weeks off work would be good as it allows you to do the full time required for the CPM.

If you have your left leg operated on and you have an automatic transmission car, you may be allowed to go back to driving sooner that 6 weeks, but insurances normally indicate it depends on your surgeon's recommendation.  The 6 weeks period is usually standard for major ops, but some people have been driving sooner than that because they were told that they could drive as soon as they were off narcotics.

I had my MACI done on the NHS but not as part of ACTIVE so I knew what I was going in for.  I was in hospital for 2 nights as I had to travel 100 miles post-op – I think they will keep you in for as long as the surgeon deems suitable to ensure you have adequate pain control.  So it could be 1 night or more depending on how you seem the next day.

Timescales to determine benefits may vary according to the severity of the op.  I'm considered a salvage case, so the outcome is uncertain but I have a 2 – 3 year timespan to establish whether I am any better.  The good news is that the MRI scan this month (at 14 months post-op) seems to show that the graft has taken and there is no bone issues, but the formal radiology report is still outstanding.  Still can't walk though! :(
Title: Re: ACI on lateral femoral condyle
Post by: Vickster on August 31, 2010, 08:04:03 PM
I'm only relaying what I was told by one OS (when discussing AMIC) and another when discussing ACI on a left legged lateral femoral condyle defect which is ~1.5cm2 (single traumatic focal defect currently filled with fibro) :)

I have an office job and drive an auto and was told 6 weeks off work and driving, possibly longer depending on how feel (from the AMIC OS)

ACI OS said 3-4 days in hospital (longer than I anticipated), brace and crutches...of course for the implant, not harvest op (for that he said I would likely need less rest etc than after the menisectomy and patella shave, that was 3 weeks off work and driving).  Neither mentioned CPM

I know it varies from surgeon to surgeon and person to person (I am no spring chicken at 38  ;D , am on the heavy side and have had the injury for nearly a year :( )

I expect to some extent I was given worst case scenario - certainly the ACI OS wanted to be sure I had all of the information before actually heading down the cartilage transplant road (rather than the decide whether you can live with the limitations road)!

Good luck with your recovery :)
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 31, 2010, 08:17:56 PM
Rennschnecke, thankyou again for the advice and the refinement of my questions, your help is very much appreciated!!

Vickster, thanks for the heads up, I looked at the website you suggested and it seems my concerns were unfounded  :). i'm sure you understand my concerns, most of the information I have found has been on here and unfortunatley Mr Carrington has been rarely mentioned, also there is so little information available on individual surgeries, mine for example, I have been referred for ACI and a bone graft. I cannot find any instances of this surgery even on this site (which is helping greatly). I have very limited information on the treatment or surgery I can expect, just a referral letter suggesting ACI and a bone graft from Mr Chapman-Sheath here in Southampton, I guess this is something I can discuss with Mr Carrington next week. My treatment is under the NHS and from what you say this has placed more uncertainty in my mind, if (M)ACI is not available on the NHS, why on earth are they wasting everyones time by referring me for this surgery, I have waited for quite some time now to get to this point and hope that it is as part of the trial although not mentioned in the referral letter. Hope everything goes well for you whatever you decide to do.

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Vickster on August 31, 2010, 08:27:47 PM
Again, as Rennschnecke says, they do (M)ACI on NHS but outside the trial in certain cases.  Maybe you are one of these :)  I was told by my private HC company that, in line with NICE guidelines, they would only consider any sort of cover for this as part of a trial.  I even read 60 pages of NICE gobbledegook and this does indeed seem to be the case (although the guidelines may have been reviewed, but the AMIC OS did say that this is indeed the case normally).  Just discuss with Mr Carrington next week, he'll be able to tell you for sure

Good luck with getting your knee sorted :)
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 31, 2010, 08:36:29 PM
Fingers crossed, list of questions ready, just hope Mr Carrington has enough time for them all ;D
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on August 31, 2010, 08:39:50 PM
Vickster,

I think the estimates given to your are conservative for your particular situation assuming that things do not get too complicated.  The worst case scenario is one that would mean you'd never have the surgery! :o

Whatever, this is no walk in the park.  It requires strong discipline to ensure you do the appropriate PT even when you can't see why.  It's hard to take it one day at a time, but I've done an ostrich act and just think that I'm evolving much as a baby would.  (Denial can be healthy!)

Lee,

MACI is available on the NHS beyond the ACTIVE trial by a small group of surgeons.  Mine is one of them.  I have had MACI despite being beyond the ACTIVE specifications, i.e. kissing lesions greater than 12 sq cm.  In my case there was no lottery, it was MACI or knee replacement.  My case only went ahead after some consultation.  You may want to explore your position in your meeting with Mr Carrington, but my surgeon said that he was funded to do so many surgeries a year and the results were to be added to the cumulative database of knowledge for NICE.  The review by NICE is now 2012 so I guess they're all busy doing as much as they can.

Your case is not straightforward, but then they never seem to be.  If you get any negative vibes from Mr Carrington, press him for any other options.  He may be able to offer you an alternative himself or refer you on.  By way of encouragement, I was told that nothing more could be done, just go learn to live with it until I needed a joint replacement.  I pressed again at my next review because I'd read MACI is for large defects and I had large defects.  Then at my second review, my OS, after he'd consulted with some international colleagues, said there would be a chance to operate and perform a MACI.  In other words, try to keep going until you get an answer you think makes sense to you (although it may not be one you like).  It's a long haul and you need to be sure that you don't regret your decision along the way.

I'm having a bag full of complications, but I know that I would still have made the same decision at the time because I'd lost the ability to sit for longer than 30 minutes and could hardly walk after I'd worked a few hours teaching.  If there was a chance of getting back to activity I would try it and hope that the interim would see improvements in technology that would mean any knee replacement would be superior.

Now it's the end of round 1 and on to round 2.
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on August 31, 2010, 09:44:30 PM
Hi again,

Just took a look at the ACTIVE trial website as suggested. It seems to be a little outdated, the last newsletter was back in june 09, is the ACTIVE trial still running?. Still, found some excellent information thankyou!!
Title: Re: ACI on lateral femoral condyle
Post by: KartBoy on August 31, 2010, 09:58:02 PM
If you check the news section of the Active trial website it would appear that they are no longer accepting new patients into the trial although MACI procedures are taking place most weeks at Stanmore I think on the basis that you are having an 'experimental' procedure where the surgeon feels you may benefit and they will learn from your case.

I fully agree with Lee, Mr Carrington should not be the end of the line, keep pressing for an alternative and under no circumstances accept that nothing can be done. If MACI isn't an option then perhaps its partial or total knee replacement, whatever don't take the pressure off until something happens. Its takes patience and persistance but you will get what you need if you keep trying.

Andrew
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on September 01, 2010, 05:48:20 PM
Thanks again Andrew, I should try not to be too concerned about things until I meet Mr Carrington next week and take it step by step from there. I tend to over think situations and possible outcomes and it rarely helps, but hey thats me. I have had this problem for some time now and want it fixed so I can move on with my life, my OS in Southampton would not have referred me for ACI unless he thought it would solve my problems, hopefully Mr Carrington agrees and I can take the next step. I will be sure to post every detail of my journey as reading other peoples posts and blogs has helped me very much and it would be great to try to do the same for someone else.

Lee
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on September 07, 2010, 05:54:52 PM
Hi all,

Well, first appointment with Mr Carrington tomorrow, nervous, but it would have been far worse without the help of you guys, thankyou.

I am sure I am as well prepared as possible, armed with a list of questions and all I can now do is hope for a positive outcome.

Wish me luck :)

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Vickster on September 07, 2010, 06:08:47 PM
Good Luck  :)

Make a list of all the questions you need answers to.  About the surgeries - scope and actual big op, coverage on NHS, waiting times etc, time in hospital, time off work, rehab, physio protocol, expected outcomes, return to activities etc
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on September 07, 2010, 08:07:41 PM
Thanks Vickster,

All questions logged and ready to go!!!

I hope Mr Carrington is a patient man Ha-Ha

Lee
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on September 08, 2010, 05:35:54 PM
Hi all,

Well, just returned from my appointment at Stanmore. Met with a collegue of Mr Carringtons who was very helpful and informative, but most importantly of all has suggested that ACI surgery is a good option for me. I will be booked in for my scope and that will take place in around 3 months (earlier if I can swing it by pestering the poor booking centre). Great news all round, feel that I am finally doing something that at least has a chance of success. The OS has recommended that I inform my employer of at least a 3 month absence, that will go down well ;D. Just a quick note, he was also impressed that I arrived at the appointment armed with pertinant questions about the surgery and the rehab, research prior to appointments seems to be the way to go!!!
Pre-operative tests were carried out today so no second visit required too soon.

So, fingers crossed that when the scope is carried out they find nothing out of the ordinary and the condition hasn't worsened too much.

All I can do now is prepare and try to speed up the whole process.
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on September 08, 2010, 06:23:22 PM
Lee,

Glad you got good news from your appointment.  Waiting is one of the hardest things so good luck with getting your appointment through.

Is your job seasonal in that there are times of the year that are busier than others?  If so, is there any chance of coordinating your time off with the low season?  Just a thought!

Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on September 09, 2010, 07:19:12 PM
Rennschnecke,

Thanks, unfortunatley the port is busy all year round, I have spoken to my manager and we are meeting soon to discuss my period of absence, limitations on return to work etc. I have decided to be as up front as possible about everything and try to give as much information as possible about the procedure and rehab, as you know very little is known about ACI as a rule and it's best to give a worse case scenario so as not to let my employer down at all. I'm not too sure how long it takes for the pre-operative blood tests and MRSA test results to come back, but I figured to leave it a week or so and then begin to try and get myself a cancellation. The down side to if I am successful is that it doesn't give my employer as much time to organise cover, but I really am in a hurry to get my knee back to some sort of reasonable level. The OS said that there is currently a 3 month wait for the first stage and then 6 weeks after the main surgery will take place, that would take me into 2011 and it seems daft but I want to start the year with only rehab to be concerned about.
So, lots of phonecalls ahead and pestering the lovely staff at Stanmore...............poor people ;D

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on September 09, 2010, 08:17:49 PM
Hi Lee,

Don't know what it's like at Stanmore but I know that my surgeon said he could only do so many ops per year (budget limitations) and then there is the Carticel process – don't know what their criteria are.  You may find that getting your first procedure moved forward would be difficult because the rest of the schedule is quite fixed, so they have to check that you can get the theatre time and the beds when you need them.  However, I do wish you luck!

Was given a date for my next op of 21 September yesterday but got a call today asking if I could go in on the 14th – yes!  Next Tuesday!  But mine is a stand-alone procedure not a two stage one.

Can you do any office/desk work for your employer between months 3 and 6?  That would be best for you if you can get it.

Best wishes  ;D
Title: Re: ACI on lateral femoral condyle
Post by: KartBoy on September 10, 2010, 11:21:21 AM
Lee, If you follow the same process as me then they need to do a scope which will then be followed by the two MACI procedures. You might be able to speed up the scope by telling the people at Stanmore that your available at very short notice, they are very good and put up with my pestering very well.

Once the scope is done you'll then have a review and be put into the queue for actual MACI which you may not be able to speed up much but again luck might be with you, I bugged them so much over the scope that I was also given a fairly short wait for actual MACI although had a nine week gap between harvesting & implant.

Just talk to them and be very nice, they are good people but its got to be hard talking to sick people day in/ day out. I couldn't do that as a job.
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on September 10, 2010, 06:51:28 PM
Rennschnecke, really pleased to hear your next op has been moved forward, what is it that you are having done?. Whatever it is I hope it is successful and wish you all the best. With regard to work I think it will become a little clearer after the meeting, I will wait to see if they are good enough to pay me for the lengthy recovery, if not then maybe look at other options such as office based work, this would be a last resort in some ways as the head office is some distance away from home and would require staying away from home a week at a time. Will be thinking of you on tuesday :)

Andrew, Thanks for the reply, I hope your recovery is going well. After my initial appointment I am not so sure I need the first of the two scopes as I had microfracture a year ago and recent MRI scans, I am under the impression that they will carry out the scope and as long as there have been no disasters and the knee has not degraded to a point it is unsalvageable they will harvest the cells. OS seems quite upbeat about my chances, although he did stress that final decisions will only be made after the initial scope with regard to both the bone graft and the defect itself. He felt that if the knee had got a lot worse I would be struggling a lot more than I am currently, so fingers crossed. I will try my utmost to bring the surgery forward and will be sure to follow your advice and let them know I am available at very short notice.

Thanks again for the replies have a great weekend!! ;D

Lee
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on September 20, 2010, 04:38:01 PM
Hi all,

Just a quick update, called the booking centre at stanmore again today and spoke to a wonderfully helpful lady, I have my first stage arthroscopy on the 22nd of october, a lot sooner than I expected and great news all round!!!. Just goes to show a little persistance and gentle badgering can go a long way. It seems to be very close all of a sudden and I have been in contact with my managers with regard to the length of absence, payment etc, fingers crossed they can see their way to helping.

Lee
Title: Re: ACI on lateral femoral condyle
Post by: KartBoy on September 20, 2010, 09:47:33 PM
Great news Lee, If they are harvesting cartilage on the 22nd then I suggest you get started strengthening the knee and leg muscles as soon and as much as possible, its shocking how quick the quads waste when your nwb even for only a month. I got to put weight on the knee today for the first time at +4 weeks and it is shocking how weak the leg is.
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on September 23, 2010, 04:50:21 PM
Thanks Andrew, will get to work on the quads, although at the appointment with the OS I did ask about strengthening the quads and he said that they are twice the size of his so not to worry. Still I think if I put the work in beforehand it can only help in the long run. After the microfracture surgery last year I lost a lot of muscle and it has taken a long time to regain it!!

Hope everyone is recovering well or at least not in too much pain  ;D

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on September 27, 2010, 08:30:42 PM
Hi Lee,

Getting yourself into good condition can only help as the better your condition going into the op, the better you are coming out of it.  However, I wouldn't obsess about it.  It's a long recovery and during the time you cannot do any strengthening work you may find the muscle bulk going down.  The god news is that your body has some muscle memory so when you do get back to training, you should find it much more straightforward getting back to fitness than getting there the first time.  (At least, I hope this holds even after 2 to 4 years of de-conditioning.)

Apparently, this is the reason why elite athletes can always return to extraordinary levels of fitness even if there is a big gap in activity!

Good luck with the journey.

R
Title: Re: ACI on lateral femoral condyle
Post by: tremy1977 on October 18, 2010, 09:33:52 PM
Alright lee, just been reading all your posts and questions.Your situation seems very similar to mine. failed micro frature etc and you have exactly the same size defect on the lateral side of your knee like i did. I had the ACI and a meniscus transplant operation in Oswestry(shropshire) in march this year. Being from Liverpool it was a decent drive. Anyways mate i'm sure after reading everyone's advice you've got, you know know a lot already. I'm 7 mths post op and to be honest i only started running 3 weeks ago on the treadmill but i must say i expected a lot worse after the operation with regards to pain and stuff.I have to say it wasn't that bad. I didn't the have CPM machine on my knee due to the menicus transplant getting done and with you having the bone graft it may be the same ?, they are very careful when after doing the ACI that the patch over the cartidige doesn't rip and sometime the CPM can cause that.I was in hospital for 5 days and for 4 of them i had a femoral block in my leg to numb any pain, soon as that was out then then they where looking to send me home. I had a straight leg brace on for 10 days until phsyio started also but i was pretty much FWB right after the op. Prof richardson that done mine is a big believer in that weight bearing and movement speeds up the healing process. obvioulsy everyone surgeon is different.
the 1st stage they'll take about 12 tubes of blood off you for the cell harvesting and then its normally just a day job or 1 night stay for the first procedure.
I'm also a part of the Active trail which i know a few people in your blog have mentioned. I was picked out randomlly to have the ACI which i was pleased about. My Active trial is through Keele university i've got lots of information on it if you've been offered the chance ?? sorry if i'm behind and you'v.e already sorted all that.
I was a semi pro footballer Lee and since i done my injury and since my operation i havent been able to do a thing sporting wise. Gotta say mate its a long road to recovery and you have to hold yourself back so its a good idea to get the mindset of a long rehab and if your getting it done on the NHS like i did then it'll be 1 day a week at the physio who by the way never seem to know much about these types of operations so i've found alot of the things you need to do are from your doings.

Hope some of that makes sense. if you need any advice or questions on things i'll be made up to help you.
best of luck
Paul
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on October 23, 2010, 12:21:24 PM
Hi all,

Firstly, thanks Paul I may pick your brains for some info as I progress.

Had the first stage yesterday and all went well, the staff at Stanmore were fantastic, I have never recieved care that comes close to how well I was treated yesterday. All went well, the cells were harvested and I will return in 6 weeks for the 2nd stage. Little bit sore this morning and slightly concerned at the level of swelling from an arthroscopy, the OS that carried out the 1st stage has said that they will use a gel for my surgery and no patch is required. Has anyone else had this type of surgery?.

The defect site had got slightly larger from when I had the failed microfracture its now 2 x 2 cm, but this is still ok for the procedure to go ahead. Really pleased that it is going ahead as there is always a nagging doubt that things have got worse between procedures and nothing can then be done to help.

So, now I look on towards the start of december when the real work begins to getting back my knee.....................

Thanks again to all that have provided me with infomation and encouragement to this point.

Lee
Title: Re: ACI on lateral femoral condyle
Post by: KartBoy on October 27, 2010, 08:26:14 PM
Lee

I found that the knee was more painful and swollen after the harvest than for previous arthoscopies, I think they clean up the graft site in preparation for stage II, not certain but makes sense. Your defect is similar size to yours and i'm nine weeks out now and very happy with progress. I agree with your comments about stanmore, its in serious need of a bulldozer but the staff were great. I don't know if you have seen my post-op diary http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=52704 but if you haven't its worth a read although it is my own experience, I hope yours is as good.

Keep us posted!

Regards Andrew
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on November 04, 2010, 06:40:30 PM
Hi guys,

Thank-you Andrew, had a good read through your post-op diary, great insight into (hopefully) what I can expect, I fully understand that no two recoveries are the same and there is always a possibility of complications.

Recieved a phonecall from my favorite lady at stanmore Phyliss in bookings to let me know that the harvest went wel and I am booked in for the 3rd December for the second stage ACI, I am still struggling to find any info on the procedure the first OS described where they mix my cells with a kind of gel, place this in the defect after it has been cleaned out, after the surgery I did not speak to the OS and so did not find out if a bone graft will be required, I guess this will be decided on the day of the surgery.

Really pleased that things seem to be moving forward, and can now plan the post-op requirements, I already have a list and am currently seeking out a ice machine and asking all friends for their boxsets and DVDS.

Will keep everyone posted as I progress


Lee
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on November 07, 2010, 08:35:03 PM
Hello everyone,

I am hoping someone can do me a huge favour and translate the findings from my scope that was performed two weeks ago. I am due for ACI second stage in 4 weeks and just recieved this letter yesterday, I don't think it is too much to be concerned with but would be nice to know!!

Findings - Grade 3, 2 x 2cm lesion laterally on the lateral femoral condyle and 1 x 1cm lesion medially grade 1.
Anterior horn of lateral meniscus - meniscal tear.
MP notch suggesting tear of ACL, ACL stump well fixed on PCL but with some laxity.

Medial compartment - and PFJ intact.
Partial meniscectomy performed.
Cartilage graft taken from lateral edge of trochlea.

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on November 07, 2010, 09:05:47 PM
Lee

The report indicates that the cartilage wear is not yet full thickness (which is Grade 4).  The greatest wear appears to be at the femur on the outside portion.  I am not sure whether they will perform an ACI in this instance as you may end up being worse off post-op.  This is because they have to remove the remaining cartilage from the bone (Grade 3 means the cover is thin).  However, the area is quite large so it will be down to your OS to make the call.  But from what you've said you may be having a different procedure done.

It sounds as though you might consider an ACL reconstruction as it is torn although attached to the PCL which helps to stabilize it.

You appear to have the area under the knee cap and the groove in good condition – no signs of wear there.

I think your OS has trimmed the meniscus (assume it is the one on the outside of the knee) and taken a graft from the outside portion of the femoral groove for the knee cap.  This may be taken for future use.

It may be worthwhile contacting your surgeon to discuss the second stage.  My understanding is the ACI is not performed unless the defect is already full thickness, which isn't reported.  But so much is going on in this field that the experts are the ones who are really up with the latest practices.

Hope you're recovering well from the scope! 
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on November 08, 2010, 07:16:12 PM
Hi Renn,

Thank-you for your time again, I am guessing that there is an error in the letter as far as I was concerned from previous appointments the defect was full thickness. Also I should have added that post operative instructions were mobilise full weight bearing, Removal of sutures 2 weeks, and then PLAN : For second stage in 6 weeks. The second stage appointment has come through and it will be on the 3rd December. I'm now hoping that there is not a disappointment on the horizon, I don't think that the surgery time would have been booked without the OK for 2nd stage to take place. There was also discussions about bone grafting, which again would point to a full thickness defect. Do you think I need to call Mr Carrington to get a little clarification on all this or from what I have said everything seems to be going ahead as planned?................WORRIED NOW!!!!!!

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on November 08, 2010, 08:05:23 PM
Hi Lee

I can't comment on what is going on.  I can only give you my interpretation of the letter and the questions that would arise in my own mind.

I think it would be worthwhile talking to Mr Carrington or his staff to check on the procedure.  As you say, it's unlikely you'd be given a date for the second stage if it wasn't necessary, but your info re. mixing a paste is also somewhat different from what is normally described for the MACI procedure.  It's possible that you may be getting a newer procedure or there may be a typo in the letter but the only people who can clarify that would be at Stanmore.

I don't think that you have any reason to be worried, but it seems that you're quite keen on being informed and you've said you haven't found the info you've been seeking so this is an opportunity for you to pump for a bit more.

Ask for post-op protocols (if you haven't already got these) and check on what adjustments you need to make for your home environment.  If it is one of the newer procedures the recovery time may be shorter and less restrictive, but only your surgeon can say.

Stay cool!  8)
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on November 21, 2010, 04:40:10 PM
Hi All,

Only 12 days to go.... Contacted Mr Carringtons staff at Stanmore on Renns advice and as thought they put my mind at ease!!!, I am booked in for ACI on the 3rd december, for a grade 4 full thickness defect, and as far as mixing a paste goes as described by OS that harvested the cartilage, no-one can shed any light. Purchased a Cryo-cuff this week and seem to be on top of all the items I need post surgery. Just one thing that is playing on my mind is post op medication, wondering if it is worthwhile making an appointment to see my GP prior to surgery to arrange this, or will this be arranged by the hospital ?

Hope everyone is well!!!

Lee
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on November 21, 2010, 07:10:23 PM
Lee

I don't know what your GP is like, but mine wouldn't prescribe pain meds unless given a slip from the hospital.  However, you don't want a repeat of Emma's experience so be prepared to make a fuss and demand the meds you want at hospital.

At this point, you won't know what you will need post-op as people's pain experiences differ, but I've always found leaving to be hindered by the wait for meds.  I've been known to be kept waiting since discharge at 10 am and only left the hospital by 6 pm.  I've also had a story of how a parent went to hospital at 7.45 am for med for her 4 month old, and only left at 10.00 pm!!!

I guess it's just a count down to Day 0 now.
Title: Re: ACI on lateral femoral condyle
Post by: barnee21 on November 22, 2010, 06:57:25 PM
Hi all,

Thanks for taking the time to reply Renn.

I had a phone conversation with my GP today and as you have said she was a little reluctant to prescribe medication prior to surgery, especially as by her own admission she has no idea about the surgery I am to have. Interestingly, she raised the issue of dependance on various painkillers, which after two years on and off seems a little too little too late, I did explain that even though I am very aware of the possibility, there is very little I can do, the pain is what it is and the medication takes the edge away, i'm sure this is something I share with many as we all wait for treatment!!.  I will be sure to get things sorted before leaving the hospital and i'm sure that everything will be fine. Strange dreams this week, all based around the surgery and waking up to be told its worse than they thought, or they tried microfracture again, aaahhhhh!!!!, I suppose it is natural as the op draws closer. I am not worried about the procedure itself but failure is unimaginable at this stage!!!

I continue the countdown!!!
Title: Re: ACI on lateral femoral condyle
Post by: Rennschnecke on November 22, 2010, 07:47:28 PM
Yes, there seems to be mixed messages about long-term use of pain meds.  However, for people with chronic pain it is a difficult issue to manage.

The main thing that will be an issue for you is tolerance to the drug so that it is no longer effective for you.  For example, I believe tramadol is really only for acute pain and tolerance to it grows over time.  If it fails to be as effective as it was once then your meds need to be reviewed to see whether you can switch to something else.  If you become tolerant to that then you may be switched back to tramadol.

If the GP is uncomfortable with the level of pain meds you're taking ask whether you could be referred to a pain clinic to talk through your issues.  The pain consultant will know more about the pain medication and can suggest different strategies for you to manage your pain even if you expect to get better after the MACI op.

If you're worried about getting your meds post-op then set up a repeat prescription service up with one of the pharmacies.  Explain the situation and hopefully you can set up a system for pain meds by phone.

Take care!