Pretty awesome stuff

[cdubb]

Surfbum, your defect location is different, which is why an osteotomy was likely not needed.  The people on here I've seen that have osteotomies wtih MFC defects, seem to have HTO's vs. TTO's  (AMZ same thing).  Patella and trochlea defects usually need then more often than not because of the shearing forces on the grafts in the PF joint they found that doing the AMZ/TT osteotomy unloads the graft site and protects the graft, which increased the success of the surgeries.  Plus, many of the people who have patellar and trochlea defects (myself included) do have tracking issues, which may be the cause of their problems to begin with.  Many are even subluxers/dislocators (I am not included in that group) that need the TT to correct that. 

[scmba]

Hi Cdubb

I'm really interested in how your surgery on 12/13 goes.  I've had PF problems in my left and had LR and Debridement in 1998.  Lasted a good 13 years until earlier this year when the pain wouldn't go away.  My left tracks much worse than my right (which started acting up the same time).  I was wondering what your symptoms were that you decided to do the surgery?  Like, I can do daily stuff (stairs, walking inside the house, sitting etc.) all without much pain.  But once I start exercising (very lightly that is) for example 20min walks, 10min on elliptical, any weight bearing exercises, I get burning/soreness/pain for a day while icing, etc.  I was used to play basketball (which I cut down significantly after the surgery), mountain bike, and was very active - depressing how you go from very active to virtually no exercise so quickly.

Anyhow, my questions to you are:
1.  How much pain were you in (or what were you not able to do) to make this decision for the ACI/TTT (now DeNovo)?
2.  What do you expect to get out of it (what have you heard)
3.  Where is your doctor and how many DeNovo's/TTT's has he done (and what is his name?)
4.  How are you (and everyone else on this forum) getting this treatment since its not FDA approved?  Is it a clinical trial?  Easy to get in the trial?

I know from MRI's that a have a large lesion on my left patella and deep groves in my right and I'm malaligned - so I see your 12/13 procedure in my future.  My MD here at Stanford mentioned DeNovo, but seems like nobody does them around here.

Thank you so much and best of luck!

[surfbum]

I can only answer number 4 for you...

First, Denovo Nt doesn't require FDA approval, but I think what you're asking is because Denovo NT is still considered by some insurance comany's as "experimental," how do we get it? Easy...cash...and lots of it ;-)

The cell packs are $4500 and on average two are used. My defect is 1.2x1.2 and the Dr. used two packs. So my total was $9000 for the cell packs, and the surgery portion (Surgeon, Anesthesia, etc...) is covered like any other arthroscopic surgery (my total for that was $210). In the end, blue cross did reimburse about $2000 for the cell packs.

Would I fork out $9,000 again for this surgery, you bet. 

[cdubb]

scmba,
Sounds like we have similar histories.  I was a Div. I athlete and managed with my PF issues with just the LR's and chondroplasties until my early 30's.  Then it was all down hill...and I'm only 32 now!

To answer your questions:
1. Prior to my left knee ACI/TT, my left knee had very rapidly declined for pretty typical PF problems to causing me daily pain even with walking on flat surfaces.  Historically, the right had been worse.  Not really much if any pain at rest, but it went for the normal PF issues to severe, sharp pains with any stairs/ramps and even on flat surfaces.  Anything at all that put any extra force on the PF joint would stop me in my tracks.  It impacted me daily to where I had to really consider what activities I could/want to do.  I would have to say that my right is not quite where my left is at for the most part, but it certainly has it's days/moments, but it still impacts me daily.  I am able to go to the gym and work out, but I find that by 15 minutes on the elliptical, I need to call it quits and stationary biking I usually can't tolerate more than 5 minutes most days.  It depends on when I get the first sharp pain. Once I get that, then it keeps happening to where I need to stop.  So, that being said, I was ready to move forward with my right knee.

2. What do I expect to get out of it? - I expect similar, if not better, results than with my ACI.  I have no aspirations to run, compete in sports again because I think it is too much to jeopardize knowing I am 32 years old and have a lot of years that these knees need to last me and that I also have PF issues, so it's not a matter of just fixing a fluke injury and and just being at normal risk again.  I know I will not have "normal" knees, but my goal is to just be able to get through my day and not think about my knees all the time.  I don't want to use my arms to push myself up from a seated position, I don't want to question a family vacation to Disney World on if I can handle the walking, etc.  I just want to function like a normal person and be able to keep us some level of general fitness with low impact activities.

3. My Dr. is out of Midwest Orthopedics at Rush in Chicago, IL. He had done many ACI's/ TT's and many DeNovo's, as well as many other cartilage resotration procedures such as meniscal transplant, osteochondral allografting, etc.  His name is Dr. Brian Cole and here is his website.  www.cartilagedoc.org 
There's some interesting information on there and there are some videos in the resouce library of some knee surgeries including an AMZ and a patella ACI.

4. Denovo NT does not require FDA approval. it is alrady post market and a Zimmer product.   I read about it somewhere as to why, but cannot recall the specifics.  It is considered an osteochondral allograft procedure, which is the coding that was used to submit to my insurance.  I am not in a clinical trial.  My Dr. does do many various clinical trials; however, to be a candidate, you have to have one good knee....which I do not have.  Unlike Surfbum, I did not have to pay up front.  I did have to give a credit card to my Dr. though, but he requires that for any procedure.  Other people on here have not paid up front either and the DeNovo packs were covered as part of the hospital bill.  So, that must be physician specific.  Insurance did have to approve prior before my docs office would schedule.

Hope that answers some of your questions, but please feel free to PM me with any other questions you have.  You need I think 20 posts to PM though.  Since my surgery is nearing, I've been popping in here more often, so I will likely see any questions if you don't have the PM ability yet. 

FYI...I think surfbum's doc may be in your area if you're in Stanford area???   

[scmba]

Surfbum & Cdubb

Thanks you for your replies.  I think I've learned more from reading both your historical posts than from any other source.  What I can't believe is that there are so few cartilage specialists in the U.S.  My OS is one of the best at Stanford and works with the 49ers, but i don't think anyone even does regular TT or ACI there - everyone just does ACL, chondroplasty, LR- basic hi volume knee stuff.  Why doesn't anyone else have my problem!

The thought of having to fly anywhere for such a major surgery and recovery adds so much stress.  I have relatives in LA, but need to get back to work also, so will be gauging how much time I need to be away from my desk job.

Yes, I have pretty much the same issues as you, Cdubb- I just want to get to the point of not thinking about my knees all day, be able to work out at a gym on most machines with no pain, walk, hike and bike and avoid TKR ever.  The way I see it is that being 41 and having to keep up with my kids for the next 30+ years I need to do something "big" like this to have a great 2nd half of my life.

Wish so much I don't have to do the TTT for the patella.  I'm trying to convince myself that if it took 40 years to ruin my 1st underside of my patella, shouldn't  I get more than that if I get a brand new one and be careful (no impact sports, etc) on it?   I know you've said DeNovo results are much better with TTT.

My next step is to get new MRIs in early January with my current OS, talk to him about DeNovo (which he introduced to me earlier this year, so he is knowledgeable, but told me it'd be a few years and he might have to send me to Germany to do it!) and ask who he recommends to do the procedure (I'm already assuming Mandelbaum in Los Angeles). 

I'm totally encouraged by Surfbum's success!
I'm thinking DeNovo & TTT are in my future - I will be thinking of you Cdubb!!
You guys are so brave.

I thought of another question:  Has anyone seems stats on the  success rates of ACI in general and/or those done on the patella?

Thanks again and keep positive!

[surfbum]

Definitely want someone that has a lot of experience with Denovo NT/ACI :-) I'm almost 100% positive Mandelbaum is going to want an MRI with cartilage mapping from you, so keep that in mind when you talk to your surgeon.

This stuff is wicked. I had a microfrature done 1 1/2 years ago and the knee was swollen, hot, and red for the last year. I'm at 4 months and the warmth is pretty much gone with minimal swelling and it doesn't hurt :-) Not healed though, did intermittently ache (slightly) the next day after doing wall squats, so it's still letting me know that it's remodeling and not ready to be used for skydiving.

[cdubb]

scmba,
ACI success rates are lower for the patella than other areas of the knee, but when they began doing them in conjuntion with the TT, they went up considerably.  I don't know exact figures though.  I want to say maybe 75% success rate with the TT?? My Dr. did tell me when he did my biopsy scope that if I had ACI in conjunction with the TT (vs. just the TT), that success would go up from 50% to 85%...so maybe 85%?  That was based on my centrally located cartilage defect and size though.   I just hope to be able to get to some realm of a reasonable age before I need a partial or total knee replacement...after all I am only 32.  The rest of my knees outside of the PF joints are perfect though.  Just those darn patellas!

[surfbum]

Week 18 (4 1/2 months): Few weeks ago I noticed a little aching the next day after doing squatting type exercises (i.e. wall squats/leg press) but can now say I'm having zero aching now. Daily PT: 40 minutes on bike with med/light resistance; and usual stuff like leg lifts, e-stim (VMO), bilateral squats, etc... Also 3 times a week I'm taking it in the gym and doing leg press (75% body weight x 50 reps), hip adduction/abduction machine, etc...

I'm doing more of a conservative approach and still on phase II (week 6-12) of the ACI protocol per PT guidance. My failed microfracture surgery was less than 2 years ago and left me sedentary, so waking these muscles up has been the biggest challenge. I found a great PT guy that has worked with 3 other ACI patients and understands the importance of being conservative and making sure the muscles can support the cartilage before moving forward. Should be on Phase III (week 12-26) in a couple weeks.   

[scmba]

Thanks for the update Surfbum.  What was your pain like before you did any sugeries?  Was it intermittent or constantly there?  I guess I'm asking what drove you to start searching out surgeons?

Also, who is your PT and what city is he in?  I have gone to two well respected PTs here in the SF bay area and both have not encountered many ACI patients.

Cdubb, if youre still reading posts, good luck. 

[paininmytrochlea]

I'm also in SF and about to get Denovo on my knee, and will need a PT with good ACI/Denovo experience. Know anyone?  I bet Stanford should have some...

For anyone who read my prior post about getting cut on 12/9, my orthopod started with a scope and in addition to the 3x3cm trochlear lesion, he found another 3x4cm full thickness lesion in the posterior lateral femoral condyle... didn't have enough Denovo (2 packs on hand) so just aborted.  I'm going under again on 12/14 for both lesions...with 6 packs.  hope insurance covers, because "there is no guarantee of payment until payment is received." So you're saying there is no money until there is money? yeah thanks for that.

[scmba]

Who's doing your DeNovo and where is he located?  Has he done many DeNovo's or ACI's?

Email me and We can talk about PT's.  It's on my profile.  I would like to hear more about your situation.

[etrusc0]

SCMBA,

Ask your doc who he recommends you go to.  In my opinion these surgeries need to be done by an experienced cartilage doctor.  My guess success rates of doctors with less experience goes down considerably.  Sure a MFX surgery is easy, and any doc can do it but it's the follow up instruction and care also.  The doctors know who the best doc's in a specialized area are, and they are much more likely to recommend you go to a cartilage specialist then to another orthopedic surgeon (that might hurt their pride).

If you can't find one in SF then take a quick flight down to LA - yes it is expensive, but so worth it to get the right care.  Plus if you have a desk job - you can return to work very soon.  Yes even with the TTO.   I program at a desk also, had my Allograft and HTO(worse then the TTO) on a Tuesday and returned to work the following Monday, just get your CPM time in at night.  I slept attached to that thing. 

My doc is a 3 hour drive and is so worth it.

To your other point about the PT - I have not encountered any with much experience yet.  When I had my ACI and was asked by the PT what my goal was from PT.  It was not to mess up the graft, so follow the PT script to a T.  Just work on motion.  No straightening your leg with your quad for a while because of both the graft area and the TTO.

Good Luck

[scmba]

Thanks Etrusc

That is so impressive that you were back to work that fast after your OATS. 
I saw that you  did OATS after ACI - is that because the ACI failed?  Do you know why the PT protocol and recovery is so much faster for OATS than ACI - I would think you still have to protect the graft.  Hope you're progressing well.

[surfbum]

Thanks for the update Surfbum.  What was your pain like before you did any sugeries?  Was it intermittent or constantly there?  I guess I'm asking what drove you to start searching out surgeons?

Also, who is your PT and what city is he in?  I have gone to two well respected PTs here in the SF bay area and both have not encountered many ACI patients.

Cdubb, if youre still reading posts, good luck. 

Well, I had a microfracture done that left me sedentary and did nothing for me. The aching was there after I was up on my feet for more than 5 minutes and I was just playing the wait game to see if it got better. My PT guy is in Pasadena at Vincent PT.

Week 22 (5 1/2 months) Just gets better and better from here. daily PT still includes leg lifts, calve raises, VMO, stationary bike 20 minutes x 2/day, etc... Stepping it up a little more in PT...doing 75% bodyweight one legged press's with zero pain. Biggest thing we found is my hip is really weak...so lots of hip exercises. No aching at graft site...little pain around the knee during PT because hips are weak and leg isn't aligning 100% properly yet when under load...working on it. Marathon not a sprint ;-)

Side note: I better have "buns of steel" after all of this crap and daily hip/butt exercises, haha.

[etrusc0]

I had 3 areas grafted when I had my ACI.  One of the 3 areas MFC just never got as strong as the others - the bone coverage was good but the softer cartilage did not protect well and I had pain after walking a lot.

So the Allograft was to the MFC, actually and an LFC plug since the doc saw an issue there as well.  I think the rehab protocols are similar, I just found it much easier to recover from the Allograft.  I think the Osteotomy's made things the most limiting for rehab.  I was biking fast because I got the motion back super fast.

I'd like to get rid of the plate they used for the osteotomy at some point this year.  It kills me when I do hamstring curls, but other then that been biking and using the elliptical a bunch lately and it feels different sometimes, but not painful.  I could not use the elliptical before so definitely in the right direction.

Good Luck