OATS - MACI Almost 7 months out from “triple MACI” procedure

BSN50

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I have been looking for a forum to share my journey to see if anyone else has had the same experience as me.
When I first sustained my injury in 2019, I was able to rehab myself with my clinical experience as a nurse. Fast forward to 2021 and my knee started to really hurt and affect my workouts and daily life. I had my knee tested and was told I had no ligament damage so a MRI was ordered. The MRI showed 2 “lesions” located at the trochlear notch of the distal femur and lateral femoral condyle. I was a OR nurse for almost 10 years so I knew the drill. I interviewed 3 surgeons and finally found one who has experience in “Chondral defect surgery”. Our plan was to place Arthrex putty with PRP via a arthroscopy.

My surgery was scheduled for November 11th, 2021 and with my family ready to help and short term disability approved I took the plunge.

When I woke up, I was informed they were not able to complete the procedure due to another lesion being found on the “medial condyle” and since she would have to work in all 3 compartment of the knee a MACI would have to be completed. The 2nd surgery was schedule for January 6th, 2022 but was canceled without my knowledge by the “My Cartilage” company and my surgeons office didn’t let me know until I called regarding pre-op directions. :what: I had family in town from Texas with short term disability approved but the surgery was delayed until January 27th, 2022.

I had my surgery in January while being instructed to be none weight bearing for 6 weeks and locked in my brace. I started my CPM 2 weeks after surgery but I couldn’t go past 30 degrees to ensure the integrity of the grafts were safe.
During the follow up, my surgeon would seem to be confused as to when she completed my grafts and pushed me to get out of my brace and start weight bearing. I didn’t feel comfortable since before the surgery she told me I was going to be recovering slower than usual because of my triple grafts.

So here I am almost 7 months out with 1 MUA behind me (4 months ago) and still unable to climb stair or walk normal. I am going to get a MRI this evening to check the grafts but my surgeon told me they can be inconclusive. I am still in PT 3 times a week and I am fading fast with hope I am going to not have to get yet another
surgery to be able to walk again.

Has anyone had a triple graft? How do you know if the grafts failed? I feel my surgeon is not taking my recovery seriously and it’s truly frustrating.
If you have read this far, thank you for your interest and time.
 
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Hello and Welcome to BoneSmart. Thank you for joining us. I read your post with interest and I am sorry for all you've been through. Regretfully, I don't have have anything to offer through familiarity or personal experience. Hopefully someone that does will read and respond. Please know we're here for support. Best wishes only!
@BSN50
 
@BSN50 I really don't recall any members who have had extensive grafts as you are describing. You have already been on @Peter Mac 's thread and posted. But he had only one graft.

I am sure your recovery is going to be pretty complex. Patience will be required in large doses.

The MRI should give your surgeon information on how the grafts are holding. Please do update us when you get the results.
 
I interviewed 3 surgeons and finally found one who has experience in “Chondral defect surgery”. Our plan was to place Arthrex putty with PRP via a arthroscopy.

I've found it very difficult to find a surgeon experienced in both Arthrex and MACI so that is a positive.
When I woke up, I was informed they were not able to complete the procedure due to another lesion being found on the “medial condyle” and since she would have to work in all 3 compartment of the knee a MACI would have to be completed.
This doesn't make too much sense, but I'm not an expert on the limitations of Arthrex Autocart with PRP.

The 2nd surgery was schedule for January 6th, 2022 but was canceled without my knowledge by the “My Cartilage” company
The My Cartilage company is Vericel. I wonder if they had a processing delay.

I had my surgery in January while being instructed to be none weight bearing for 6 weeks and locked in my brace. I started my CPM 2 weeks after surgery but I couldn’t go past 30 degrees to ensure the integrity of the grafts were safe.
I was told the same things. I started CPM 10 days after surgery. I feel this was a mistake. I feel my outcome would have been better to start CPM 24 hours after surgery like Vericel suggests.

During the follow up, my surgeon would seem to be confused as to when she completed my grafts and pushed me to get out of my brace and start weight bearing. I didn’t feel comfortable since before the surgery she told me I was going to be recovering slower than usual because of my triple grafts.
I've found my surgeon and PT's seem to not be well versed in the MACI rehab. Have you gone to the Vericel website to find a physical therapist who is trained in MACI rehab? They have a list of MACI trained physical therapists on the MACI website. Sadly, there were only a few in my state.

Has anyone had a triple graft? How do you know if the grafts failed? I feel my surgeon is not taking my recovery seriously and it’s truly frustrating.
I read about a lot of graft failure stories with the old Carticel implants. The patients said you could tell when the graft delaminated--excruciating pain. Graft delamination is only one possible type of graft failure though.

The MACI recovery quick reference guide says with multiple defects, older age (sorry I know it's not nice they consider 50 "older age" but you are "older" for MACI) that you are < 20% weight bearing week 1, increase by 15-20% each week. Full WB won't occur until 5-6 weeks.

At 6-9 months your cartilage is supposed to maturing and remodeling and you said:

So here I am almost 7 months out with 1 MUA behind me (4 months ago) and still unable to climb stair or walk normal.

I'm at six weeks today and I'm chomping at the bit to get to the gym. I can't give medical advice, but if I couldn't climb stairs at 7 months, I'd first wait until 9 months had passed and then I'd see if arthroscopy was an option to film the MACI graft sites to see what they look like.

Some research suggests that the MACI graft absorbs by 6 months into your body.

Finally, even in MACI clinical trials there was always at least patient with a graft failure who required a corrective surgery.
 
Hello,
I had OATS surgery back in December 2014. One graft, under the patella. My recovery was similar to yours. Non -weight bearing and locked within a certain degrees so the graft wouldn't fail.
I had a terrible time for a year. Did my PT each day like a good boy and then hurt so bad I couldn't walk on it at all. Begged for an MRI and the surgeon wouldn't give me one. Finally got a second opinion and that surgeon ordered a new MRI and found out the plug had fallen out and that is was causing my knee to lock up. He did a chrondoplasty to remove it and I instantly felt great. Walked out of recovery after surgery. He didn't order any PT for me. My knee wasn't perfect but I walked on it comfortably for years.
How do you know if the grafts failed? I feel my surgeon is not taking my recovery seriously and it’s truly frustrating.
For me, Me knee just could not bend past 90 degrees like something was physically stopping it. Also after just a little amount of standing and movement on it, it was painful and swelling would start. Luckily they never MUAed me. They did act like it was something mental in me, like I was "resisting." I walked out of PT one day and never went back and that's when I went to get a second opinion.

Looking back, I think PT is where stuff went wrong. 4 days after surgery they took me out of my brace and had a basketball under my knee and I'm doing kicks and bends way past the limits set on my brace. I asked "why can't I bend like this all day, but now I'm doing this during therapy?" They replied, "it's ok to go past your limits when you are under supervision." Well, the graft doesn't care if I'm under supervision or not. I think they were
giving me just a general PT routine for a generic knee injury or surgery.

I know how painful and frustrating it is. If you feel your Dr isn't taking you seriously then maybe it's time to get a second opinion. I've done it several times dealing with health issues and it's never hurt.

Good luck.
 
Hello,
I had OATS surgery back in December 2014. One graft, under the patella. My recovery was similar to yours. Non -weight bearing and locked within a certain degrees so the graft wouldn't fail.
I had a terrible time for a year. Did my PT each day like a good boy and then hurt so bad I couldn't walk on it at all. Begged for an MRI and the surgeon wouldn't give me one. Finally got a second opinion and that surgeon ordered a new MRI and found out the plug had fallen out and that is was causing my knee to lock up. He did a chrondoplasty to remove it and I instantly felt great. Walked out of recovery after surgery. He didn't order any PT for me. My knee wasn't perfect but I walked on it comfortably for years.
How do you know if the grafts failed? I feel my surgeon is not taking my recovery seriously and it’s truly frustrating.
For me, Me knee just could not bend past 90 degrees like something was physically stopping it. Also after just a little amount of standing and movement on it, it was painful and swelling would start. Luckily they never MUAed me. They did act like it was something mental in me, like I was "resisting." I walked out of PT one day and never went back and that's when I went to get a second opinion.

Looking back, I think PT is where stuff went wrong. 4 days after surgery they took me out of my brace and had a basketball under my knee and I'm doing kicks and bends way past the limits set on my brace. I asked "why can't I bend like this all day, but now I'm doing this during therapy?" They replied, "it's ok to go past your limits when you are under supervision." Well, the graft doesn't care if I'm under supervision or not. I think they were
giving me just a general PT routine for a generic knee injury or surgery.

I know how painful and frustrating it is. If you feel your Dr isn't taking you seriously then maybe it's time to get a second opinion. I've done it several times dealing with health issues and it's never hurt.

Good luck.
Hi Robobob,
Thank you for replying and sharing your experience with your knee. I am sorry you have had a hard time as well. I get a fire in my belly when I hear providers making their patients feel like it's all in their head. I am sorry. :( As a patient you have rights and if you wanted a MRI the provider should have ordered it.

I was not able to flex my knee past 90 degrees 3 months post operatively and that is why they proceeded with a MUA which helped tremendously. I was still progressing two weeks ago. I didn't go to PT until 7 weeks after my MACI but I was using my CPM machine and only bending to around 20 degrees.

I know I haven't posted in a while because I was having so much going on with my knee so I will bring you up to speed. So I did have another MRI and it showed my grafts are growing in a "ripple" shape so areas are just touching my bone. My surgeon still didn't seem to be worried about my lack of progression in my ADLs and half heartedly offered to do a scope but I have lost confidence in her.

I reached out to my surgeons "old" PA who was in my first 2 surgeries and he was able to ask a MACI rep for a surgeon regarding 2nd opinion. Thank you God I was able to get into another surgeon and he agreed to take on my case.

After a delay in my 4th surgery, I was able to get a scope on Friday (October 14th) to check the integrity of my grafts. I haven't been able to speak to his MA directly but from what my family said he only had to shave a couple of graft in areas that had overgrown and some scar tissue behind my patella.

I am praying this will be my last surgery on this knee and I will start to progress to my normal daily activities.

I will keep you guys updated on my progression after the 2 MRIs, 2 scopes, 1 MUA and 1 Triple graft MACI. Wow that is a lot!

Thank you again for sharing your story as well. :)
 
Hi BSN50, welcome to BoneSmart! I was offered a MACI procedure for my knee last year…two lesions, one under my patella and one on my trochlea. My damage was deep (4 out of 4), and they were ‘kissing’ lesions (opposite each other) so my odds of success were lower because of that. Also my age was a factor because at 44(!) I too am considered ‘old’ for MACI. I had already had two difficult hip surgeries and an arthroscopy on that knee…way too much time spent on crutches and partially immobilized. Looking at the type of recovery for the MACI plus my steep odds of success, I decided to forgo it and opted for a patellofemoral replacement instead. I may never know if I made the right choice, but I hope so. And I hope you have gotten the treatment you need to set you on the path to full recovery and the confidence that you did make the right choice! Please do keep us updated and I wish you the absolute best.
 
MACI has been clinically tested on patients over 50. I wonder why you were told 44 is too old.
 
Hi Peter Mac! I’m guessing this question is for me? They didn’t say I was TOO old, just old (haha!). That was pretty far down on the list of concerns, but they did cite it as a factor, saying if I was 23 I’d have better odds than I would at 44. But they were ready and willing to do the surgery. I considered it but decided against it. My surgeon gave me a 50/50 chance of it succeeding and that was just way too risky for me.
 
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I like to read MACI studies and I'm just perplexed that your doctor gave you such low odds. The study results seem to indicate better outcomes than your doctor suggested.
 
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Peter Mac, the main factor was the kissing lesions, have you read about those? And their location in the central trochlea and patella, along with the severity of the damage (4/4). But let’s not hijack BSN50’s thread talking about my knee! :)
 
Here is @JusticeRider ’s thread if you want to discuss things there:
 
So I just had a triple MACI last Thursday, and my experience has already seemed vastly different from yours. I’m not far in yet, 5 days post-op, but I am already feeling for you, as this recovery is not going to be an easy one.

My brace is currently locked at 0 and 20, I started my CPM day 1 post op and started PT day 4. They took my brace off and did a couple minimal exercises, told me I am able to take the brace off for the CPM, and am currently 20% or less weight bearing, but will progress along with the CPM.

They did mention the “triple threat” is a special situation and has a separate combined PT regimen, because the condyle and trochlear recoveries are different and can be contradictory.

I think finding different providers is going to be your best bet. I think I got very lucky with my team, but this was also my 3rd opinion in almost 10 years.

I wish you luck and further relief from your pain!
 
What did they start your CPM at degree wise on day one? I'm a MACI patient and it's been incredibly difficult to find physical therapists skilled in MACI. You seem to have lucked out and found a good team.
 

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