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Author Topic: Was supposed to do ACI surgery tomorrow but the chondrocyte preparataion failed  (Read 9918 times)

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Offline sjunkerg

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So, I was supposed to do the whole ACI surgery with a Maquet tomorrow but was told two days before the surgery (i.e. yesterday) that the lab had not been able to expand the cells to the extent needed during the last phase of the grown procedure. Totally bummed out as I had everything arranged for doing the surgery and the rehab. I will now get another bonus surgery tomorrow just to do the biopsy again (I had the original biopsy done during a clean-up procedure in February when the lesion was discovered). The ACI procedure is now tentatively scheduled for November.

How often does the preparation of the chondrocytes fail? Has anyone else here gone through a similar issue and then been successful on the second time around? Apparently, the cells were just under the quality limit they had so it was close but not quite there.

Offline sjunkerg

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So I ended up just doing a cartilage biopsy last Friday. The procedure was quick and my OS also cleaned up some scare tissue from my original scope back in February. I am now a week out from the biopsy procedure and recovering well. I can walk pretty well without any pain and even up and down stairs without too much trouble.

The ACI procedure is now re-scheduled for 12/7. The main fear and concern now is that I will have the same bad news a couple of days in advance of the next procedure and the ACI will not happen (again). The OS is thinking about securing some Denovo material as a potential backup so the surgery can go ahead regardless of the outcome of the carticell growth success or not so I am spending quite a bit of time at the moment reading up on Denovo.

For now, it is back to PT for the next month to recover from the "bonus surgery" I just had and getting ready for December and once again reorganize my life for a couple of months of down time focused on rehab and telling everyone that it is for real this time (maybe).

Offline OCD in Portland

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Wow Sjunkerg, that really sucks.  I have never heard of that, but I had also never heard of ACI until last January when I was surprised with the need for it.  After my insurance approved it I was able to get my cells grown in two weeks with no issues, and I'm doing my other knee December 16th with left over cells from my orginal biopsy in January.  It seems really strange to me that they didn't know waaaay earlier that your cells weren't going to work, but I don't know exactly how it works.  If I were you I would call the Carticel rep and talk to them about it.  They can probably provide some details how often that happens, how likely it is to happen again, and provide status along the way.   And finally, I know it really sucks to prepare for the surgery and then have it pushed out, but the whole things sucks, and you get through it, and when it's over you won't remember details of why it sucked, or care that it took 4 weeks longer or 2 months longer, as long it works all will be good.   ;)

Offline sjunkerg

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Supposedly, it failed to reach specifications during the very last step of the lab process and I really hope they informed me as soon as they knew it was not going to happen. I have talked to the carticel rep directly about the process and whether to harvest new cells or try again with some of the leftover stuff. In this case, the surgeon thought it best to get some new cells and thus the second "bonus" surgery three weeks ago. I now have 5 1/2 weeks left until the next ACI attempt.

cdubb

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sjunkerg,
That actually recently happened to me also.  Not to the extent that it was cancelled right before surgery, but US bio got my cells out when we were starting the process for my right knee.  I had ACI with a TT to my left knee last November and am moving forward with my right knee now.  We were getting the insurance auth in place and my docs PA called to tell me that US Bio called them about my cells and it didn't look like they would be able to expand them.  They took them out on a Friday and said it didn't look good and tried to do something with them over the weekend, but that still didn't look good, so that is when my docs PA called me.  US Bio could still have tried, but there was a very high chance that surgery would be cancelled in the day or so prior to surgery...like what happened to you.   I was told that it was pretty unusual for that to happen.  Instead of getting a new biopsy, my Dr. opted to switch to DeNovo NT as my graft material.  I'm scheduled in December for that with the TT again.   My cells the first time around also took 30 days to proliferate, but I thought that was normal...but I see below that some people have had it done in 2 weeks.  I'm told that my initial ACI graft done last year isn't compromised...but it sure makes you wonder???

Offline cookstar100

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Hi sjunkerg, I had my MACI graft done in Feburary of this year however had a similar experience with the biopsy. My cells actually grew an infection whilst growing which meant they had to get rid of them and I had to reschedule for operation. A month after getting the original cells I had the cells taken out again and then in February had the impantation. I was extremely concerned that the cells might grow an infection again however everything worked out well. I am now 10 months post surgery and am now allow to perform small jumps (on a mini tramp) and also jog on a smongy ground. Jogging is still painful but am in the process of building up strength within the knee so hopefully things will continue to work out. Hope your operation works out for you.
2008 Left knee Lateral Release; 2009 Left knee cartiledge tear requring arthriscope & patella microfracture; 2010 2 x left knee athriscope; 2011 left knee patellofemoral MACI

Offline sjunkerg

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I am exactly half-way between the "bonus" surgery described above and the ACI surgery in early December. I have found out that carticel have changed their lab criteria this year and after doing that, they seem to reject more often than they did before. It is kind of an interesting situation where it does not benefit them financially to do this change but if it really makes a difference in surgery success rates, I am thankful that I am having my knee done after the change. Apparently, the failure rates are as high as 30% these days in growing the material. I have not yet found out how often it happens as close to the surgery date as it did for me.

My situation is a bit weird in that I really only have occasional pain in my knee right now and have few problems day-to-day but I am no longer able to do what I used to enjoy like running etc and every so often, I end up having bigger problems and have to do a couple of months of PT. I am thus about to change what is a fairly normal existence for the most part for a lot of recovery work for a long period of time. If I can go back to doing triathlons and skiing again and avoid a total knee replacement, it will all be worth it in the end.

cdubb

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Good luck on your surgery. I'll be about a week behind you with a Dec. 13th surgery date. Since we're both having TT's, we'll be essentially on the same recovery track.  We should compare notes as we go!

Offline sjunkerg

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Just got the word this morning that the production step worked for the next attempts and three vials are being flown in from Boston tonight. Given how much the cost to produce, I am assuming they are flying business class. Surgery is on Wednesday so less than 48 hours until they are installed.

cdubb

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I'm sure that the cells are overnighted!  They are ridiculously expensive to proliferate....my EOR last year came in at $61K...insurance negotiated rates was about $32K..but yes...crazy expensive! Good luck!

Offline sjunkerg

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Ok. Surgery now done and back home. We got a late start on Wednesday and I was not rolled in until 6 PM. I got a femoral nerve block and we were off to the races. ACI implantation, TTO and removal of old hardware in patella from 1996 surgery. They got done at about 9 PM and I remember pretty much nothing until I was in my room at 11. Got on the CPM machine around midnight and ran it pretty much continuously throughout the night at 50 degrees.

I was fairly nauseous on Thursday and had to stay until today, Friday, before getting discharged. I can't imagine doing this surgery outpatient. It would have been very rough.

cdubb

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Glad you're home.  Outpatient really wasn't bad...and I didn't even have a femoral nerve block.  I was discharged about an hour after I woke up last time...rolled into surgery at 2:30 pm, woke up about 5:30 pm and waiting for the valet at 6:30 pm.   I hope round 2 goes as well on Tuesday and I do just as well at home as I did the first time. 

Are you still at 50 on the CPM? I wasn' t allowed past 40 for 4 weeks, but that could be the patella vs. trochlea difference?

Offline sjunkerg

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I could not make it to the bathroom for almost 48 hours after surgery. Got really dizzy as soon as I got vertical.

I am at 85 deg right now after ~12 hrs / day. OS wants 90 deg after first week so I am ahead of schedule at this time.

Offline Rennschnecke

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I guess the difference is how we each respond to anesthesia sometimes people get very low blood pressure following surgery.  I know that I don't which makes me a good candidate for spinal (apparently!).

Now you're able to be a bit more upright it sounds like you'll be doing fine!
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 OCD in Portland

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I just got my ACI with a bone graft on the 16th, went great.  Glad you hear you guys are doing well as well.   I definitely couldn't imagine leaving the hospital same day.  Both this time and with my other knee last February I went in Friday morning and left Sunday.  For both surgeries I had a 8-12 hour period of really bad pain in the first 48 hours and I would not have wanted to deal with that at home.  I'm home now, hanging out in my CPM.  My doc wants me at 90 before two weeks, but I haven't gone above 75 yet, I really need to get on that.  90 is my max based on location of my lesion.  It's interesting doing the same surgery twice, especially in the same year, as I have expectations don't really hold true.  This time there is almost no swelling, but the pain is taking longer to wear off.  Last time I was off pain meds no problem 5 days after surgery, I'm 9 days out now and need light meds to get around.   Definitely hope that goes away soon.  The combo of the pain meds, anti-biotics, and residual anesthetic I feel pretty crummy right about now.

Offline sjunkerg

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I am now at 2.5 weeks post surgery and doing much better. After tapering down the dilaudid over the last week, I took my last half dilaudid pill last night. The horrible neausea and dizziness I was suffering from during the first 10 days is now largely gone.

On the CPM my OS is being quite aggressive and my progress has been great. I was at 45 deg within 12 hours of the op. 75 at 48 hours and 100 after 7 days. I maxed out the CPM after 10 days at 120 deg and have been there ever since. Down to 8 hours per day on the CPM now.

The swelling has gone down quite a bit as well by now.

Offline sjunkerg

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I am now at 7.5 weeks and doing much better. While I have not yet been allowed to ditch my brace and crutches, I can walk around at home without much trouble, drive a car etc. I went back to work at 4.5 weeks and don't have much problems with swelling at the end of the day so most things are good. Using the CPM, I got to 120 degrees within 10 days of the surgery but my ROM outside of the CPM has been at 115 for the last month. I am now off the CPM for 10 days and it would have been nice to have gotten a bit further by now.

My normal routine is 2 90 minute PT sessions per week and about one hour each night with my own exercises which includes isometrics, ROM exercises, patella and fatpad mobility as well as 15 min on the stationary bike with no resistance.

Offline Jamey1215

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Hi Sjunkerg,

It sounds like you are doing well after the surgery. Any regrets? I recently got approval for the ACI and TTT and am scheduled for surgery 2/23/12. I spoke to Genzyme today to make sure all was well and there was a little miscommunication between the doctors office and genzyme. Apparently they did not know my selected sugery date! For some reason I felt compelled to call today to make sure all was well. I am a bit OCD! Luckily I did because although they had all the approvals, they had not put the orders into the lab to start the cell growth and they need 15 days. I hope all goes well with the growth because I have mentally prepared for 2/23 surgery.

You mentioned you could drive. I am having my left knee done. Any issues with that? Also, I plan to go back to work after two weeks. I really can't get much more time off than that. Realistic at all? I have always bounced back from surgery pretty quickly but my most involved surgery was just the realignment on my right knee many years ago, no ACI.

Jamey
« Last Edit: February 09, 2012, 01:01:33 AM by Jamey1215 »

Offline sjunkerg

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No regrets here. Life sure changes when you have this surgery since it is a big procedure that disrupts your everyday life for quite some time.

As far as driving goes, having the procedure done on your left knee will allow you to return to driving quicker than on your right. I had excellent help at home and did not have to do any driving until 7 or 8 weeks after the surgery so by that time it really was not an issue and I was more than ready.

On how quickly you can return to work I would say that it differs a lot by person. My best recommendation would be to read a number of diaries on line (this board included) from people who have had the surgery before you. I was able to return at 4.5 weeks which was the right time for me. Before the surgery I was advised that I would need to take 1 - 3 months off after the procedure. 2 weeks is extremely aggressive. I have only read of one patient that has pulled that off. This is very different from an arthroscopic procedure. At the two week mark, you will likely still be on narcotic pain killers and thus not be able to drive. You will likely also have problems getting into a car on your own (I certainly needed help at that stage). The osteotomy is still going to be extremely sensitive and you will not be able to stand for long periods due to swelling and pain etc.

My state at 2 weeks after the surgery was one where there was no way I would be able to work no matter how much I wanted to. The drugs were affecting me quite a bit and I would only sit up for a couple of hours at a time. At that time I was also doing 8 hours per day in the CPM machine and did something like 2 hours in the CPM, 1 hour break throughout the day. Doing the CPM continuously for several hours was very hard. I still needed some amount of help at home for getting food etc. Each person obviously react differently to the surgery but that's where I was at 2 weeks and my recovery has been pretty straight forward so far. I think you need to prepare yourself for being out much longer than 2 weeks unfortunately.

Hope this helps.

Offline OCD in Portland

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Hey Jamey1215,

I got ACI with a femoral bone graft done on my right knee last February and my left knee last December and I am so happy I had the opportunity to get ACI.  I was nervous about getting my left knee done less than a year after my right, but for insurance deductible reasons really wanted to do them both in the same year, and my right knee has help up amazingly through my 10 weeks on crutches following surgery.  And the 10 weeks was due to my bone graft, and is much longer than most ACI procedures.

With the right knee I wasn't able to drive for 6 weeks when I started partial weight bearing, but again that was because of the bone graft.  With the left knee that I just did, I was driving in two weeks with no issues.  As for work, I only took a week off for the right knee, and two weeks for the left.  My right knee may have been a miracle surgery though as the pain basically went away 5 days after surgery.  With the left one I was in a lot of pain for the first week and a half (definitely glad I was off for two weeks), and a pretty good amount of pain for the first month. The hardest part about going back to work early is balancing CPM time with working.  You basically have to dedicate all free time to CPM and attempt to sleep in it, which I was never able to do.  I was definitely mentally overwhelmed during that time, and do not recommend trying that if you are still heavily medicated.  But regardless of how long you take off work, the results can be amazing, and long term if you miss a little more work than expected I think will be irrelevant. 

Finally, sjunkerg is totally right that help is needed.  In the beginning just getting your leg in and out of the CPM can be daunting, nevermind using the bathroom or cleaning yourself.  Take up any offers you can for food, transportation, cleaning, etc.  Hope your date stayed on the 23rd, it's an exciting opportunity.  I wish you the best of luck!

Offline Jamey1215

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Thanks for your reply. I am happy to see that driving and returning to work after two weeks was not too big of an issue for you. That is my current plan if all goes well. I have always healed pretty quickly and this will be my 8th surgery, but only my second really big one. I had a TTO on my right knee about 15 years ago and it was the best thing I ever did. The first week or so was rough but after that it was pretty much downhill. Training for marathons and triatholons along with fighting all of the injuries that come with that was not easy, but I survived that and the payoff in the end was amazing. I am hoping this is the same. I am pretty nervous with surgery just being days away now. I even had a little panic attack last night and started doubting if I was doing the right thing. I am giving up most of the horse show season and am hoping to be back in the saddle by the fall. My surgeon said 6 months to be riding again was not unreasonable, I hope he was being honest. I am hoping to catch next years triathlons and don't have any plans for long distance running again. Not really worth it as that is how I ended up where I am now.

You had a bone graft done with both knees??
« Last Edit: February 21, 2012, 01:26:06 AM by Jamey1215 »

Offline sjunkerg

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Jamey,

I too used to do triathlons but have not run at all for the last three years while trying to figure out what was going on with my knee. I hope to return to the sport at some level in 2013. I am now 10.5 weeks out from ACI and finally dropped my crutches 10 days ago. Life is looking much better now. The first weeks will be intense but after that, life gets a lot easier. At 6 weeks when you get rid of the CPM, you start having some spare time again etc (assuming that you returned to work in less than six weeks).

A big portion of this surgery is mental and while it was physically challenging and I was not feeling that well at all in the beginning, I did not have a lot of anxiety about the procedure beforehand and it has been pretty smooth sailing after the first 10 days for me post-surgery.

Good luck with your surgery!

Offline Jamey1215

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Wow that seems like a lot of time on crutches.  Is that normal?  I thought I read 6-8 weeks.  Maybe I was wrong.  I have tried to educate myself a lot but at the same time feel that maybe ignorance may be bliss.  If I know too much I will chicken out and I don't really have any other options if I want to return to some athletics at some point.  Eventually I was told I will be a candidate for replacement if the wear and tear continues.  I just want to get this over with because right now I feel like I can't plan anything and am just stuck. 

Offline sjunkerg

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Yeah, I was a bit of a late bloomer. I think more commonly it is the 6-8 weeks that you quoted above. In my case, I dropped the crutches at 8 weeks for anything indoors and outdoors at 10 weeks. It gave me a little bit more protection and helped out with not giving myself a bad gait by starting too early. In the end, 7 vs 10 weeks did not affect me much practically as I only used them outdoors at that point.

I too did my ACI due to fear of a total knee replacement down the line. I actually did not have much pain before the surgery, even if there was some issues occasionally. The biggest thing you will find with the recovery is that it is quite slow and you have to hold yourself back a bit and not step things up too quickly. I am resigned to the fact that this will be a slow year. I do my exercises religiously every night but I am not trying to push it in any way.

Offline OCD in Portland

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Hey Jamey,

I had OCD and basically had two big holes in my femurs.  It's genetic and tends to mirror itself, hence why I did both knees.  The lesions were too big to just do ACI so my surgeon did the bone graft with the ACI.

I was on crutches for 16 weeks on my right knee, and am 14 weeks out on my left and am still on one crutch, but my bone grafts are the main reason for delayed weight bearing, and I got stress fractures in my foot on my first surgery when I tried walking which is why the crutches were extended out to 16 weeks instead of just 10.  Lesson learned, talk calcium pills if you are going to be on crutches that long. 

But trust me, after 4 weeks on crutches, you kinda do get used them.  They still suck, but it's not the agony that first couple weeks can be since your body is used to them, and you start to learn all the tricks to get things done.  I just keep telling myself what's one more week of crutches if I can run a mile in a year. 

Anyways, not sure if you got your surgery yet or not, but if you did, congrats on getting the worst part over with, and good luck on your recovery.  There are plenty of us here to bounce thoughts off while you are recovering, and make sure to do all your PT everyday as assigned, it really does help.