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Author Topic: ACI on lateral femoral condyle  (Read 18434 times)

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Offline Vickster

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Re: ACI on lateral femoral condyle
« Reply #30 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.
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline thevoice

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Re: ACI on lateral femoral condyle
« Reply #31 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.

Offline Rennschnecke

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Re: ACI on lateral femoral condyle
« Reply #32 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! :(
1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

Offline Vickster

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Re: ACI on lateral femoral condyle
« Reply #33 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 :)
« Last Edit: August 31, 2010, 08:12:37 PM by Vickster »
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline barnee21

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Re: ACI on lateral femoral condyle
« Reply #34 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

Offline Vickster

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Re: ACI on lateral femoral condyle
« Reply #35 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 :)
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline barnee21

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Re: ACI on lateral femoral condyle
« Reply #36 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

Offline Rennschnecke

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Re: ACI on lateral femoral condyle
« Reply #37 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.
1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope – debridement, trochlear cartilage lesion (Gr4); 12/08 Scope – chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope – LOA, IPCS & patella infera; 9/10 Scope – AIR & LR.

Offline barnee21

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Re: ACI on lateral femoral condyle
« Reply #38 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!!

Offline KartBoy

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Re: ACI on lateral femoral condyle
« Reply #39 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
7th Mar 08 - Pedestrian hit by car
10th Mar 08 - TPF (Plate + 6 screws)
12th Mar 08 - TPF Revision
Feb 09: Hardware removed + scope
Jun 10: ACI Stage I
Aug 10: ACI II (Stanmore)
Oct  11 - MRI + Scope (In pain)
Aug 12 - MRI + Scope (In more pain)
Sep 12 - TKR ruled out :(

Offline barnee21

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Re: ACI on lateral femoral condyle
« Reply #40 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

Offline barnee21

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Re: ACI on lateral femoral condyle
« Reply #41 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

Offline Vickster

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Re: ACI on lateral femoral condyle
« Reply #42 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
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation
LK scope 10.1.19 medial menisectomy, trochlea microfracture, general tidy up

Offline barnee21

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Re: ACI on lateral femoral condyle
« Reply #43 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

Offline barnee21

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Re: ACI on lateral femoral condyle
« Reply #44 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.















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