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Author Topic: Potential MACI with Dr. Frank Noyes - advice?  (Read 4567 times)

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Offline Jordan1

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Potential MACI with Dr. Frank Noyes - advice?
« on: March 03, 2017, 01:26:16 AM »
Hi Everyone! I'm looking into getting the MACI procedure done with Dr. Frank Noyes out of Cincinnati Ohio and was looking for other folks who may have had it done, to hear about their experiences, symptoms before, outcomes, physical therapy etc.

I've had 5 previous knee surgeries. The kneecap pain I have gets pretty bad, I've tried  bone marrow stem cell injections, more PT than I thought possible but nothing seems to get rid of it. Three years of chronic pain and not being able to make it through the grocery store, I'm ready for just about anything- but also want to be smart about what I'm getting myself into with the 50% failure rate associated with this surgery. Also the doctor said if the MACI procedure does fail, they do not try to re-do it, and instead go back in and do a partial replacement - I'm worried about PKR because I am only 25 years old

I would more than appreciate any advice or personal stories! ....and promise to repay the favor if I go through with it.

Look forward to hearing from you MACI vets.
« Last Edit: March 06, 2017, 04:55:24 PM by Jordan1 »
Left knee Mensicus repair 2005
Left knee ACL Reconstruction 2005
Right knee ACL reconstruction 2010
Right knee ACL reconstruction 2014
Left Knee Scope debridmt (for chronic pain) 2015
PRP Injections & Bone Marrow Stem cell injections to both knees - 2016
Left knee Chronic kneecap pain 2014 - present

Offline willrunagain

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #1 on: March 03, 2017, 04:36:36 PM »
Hi Jordan - I have not had MACI, but I did have cartiform surgery on a central patella defect about 1.5 years ago.  I was actually first diagnosed with the lesion by Dr. Noyes and had it scoped by him for mostly "clean up" purposes two years ago.  This surgery only provided mild relief, so I researched cartilage restoration options like ACI, Denovo, OATS and cartiform.  Dr. Noyes recommended Denovo for me, quoting me a 50% success rate and telling me to never play impact sports again.  My heart sank when I heard this, so I decided to search for other surgeons and methods.  That's when I found out about Dr. Farr and the new cartiform procedure.  Dr. Farr quoted me 80%+ success rate and said I could be back to running in about 12 months.

As far as MACI, I am not as familiar with that procedure.  Did you already have your biopsy done?  I thought I heard that MACI just got approved by the FDA less than two months ago.  No doubt an innovative procedure, but not a whole lot of testimonies on it.  All I can say is I am very happy with my knee after the cartiform surgery.  I can do one legged squats without pain.  Before surgery this was impossible.  I have also started running more.  My knee is not perfect, but I'd say it is about 85%-90% what it was before I injured it.  It only gives me some mild discomfort at the incision site, if I do too much impact the day before.

Online Vickster

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #2 on: March 03, 2017, 04:50:51 PM »
MACI has been around in the U.K. for at least 7 years. It's a variation on ACI / Carticel, there should be some testimonials if you search on MACI or ACI

http://www.kneeguru.co.uk/KNEEtalk/index.php?action=search2

However, as above the success on patella defects of ACI and MACI is lower than say on the femur

There's some quite good info here from a U.K. Hospital (quite old now but that's because the procedure is), note it takes at least a year for the graft to take properly and probably another year to recover to pre surgery levels.

http://www.kneeclinic.info/download/CKC_GNHFT_ACI_RehabGuide_101106.pdf

All that said, it's not done much more in the UK I believe, there's limited public health system funding now the main trial ('Active') has concluded a couple of years ago (the body that determines funding decided that there was limited clinical benefit in many cases and it's very expensive so...)

And as a result of that body's decision, private health insurance companies often won't fund either and people won't pay out of pocket.  Other new things are slowly coming through in trials etc
« Last Edit: March 03, 2017, 05:19:36 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 Jordan1

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #3 on: March 05, 2017, 09:52:32 PM »
Hi Jordan - I have not had MACI, but I did have cartiform surgery on a central patella defect about 1.5 years ago.  I was actually first diagnosed with the lesion by Dr. Noyes and had it scoped by him for mostly "clean up" purposes two years ago.  This surgery only provided mild relief, so I researched cartilage restoration options like ACI, Denovo, OATS and cartiform.  Dr. Noyes recommended Denovo for me, quoting me a 50% success rate and telling me to never play impact sports again.  My heart sank when I heard this, so I decided to search for other surgeons and methods.  That's when I found out about Dr. Farr and the new cartiform procedure.  Dr. Farr quoted me 80%+ success rate and said I could be back to running in about 12 months.

As far as MACI, I am not as familiar with that procedure.  Did you already have your biopsy done?  I thought I heard that MACI just got approved by the FDA less than two months ago.  No doubt an innovative procedure, but not a whole lot of testimonies on it.  All I can say is I am very happy with my knee after the cartiform surgery.  I can do one legged squats without pain.  Before surgery this was impossible.  I have also started running more.  My knee is not perfect, but I'd say it is about 85%-90% what it was before I injured it.  It only gives me some mild discomfort at the incision site, if I do too much impact the day before.

Willrunagain - thanks so much for your reply. I had my knee scoped for a similar sounding clean out over a year ago that left me in worse shape than before. I was actually considering getting a second opinion from Dr. Farr, he's the next closest surgeon to me that does those procedures.

I have no had my biopsy done yet, and with the MACI procedure that was suggested to me only being approved by the FDA within the past few months I'm committed to doing my homework on researching what might be best.

Have you had previous surgeries or other damage to your knee? Was your pain pretty constant before the cartiform procedure?
Left knee Mensicus repair 2005
Left knee ACL Reconstruction 2005
Right knee ACL reconstruction 2010
Right knee ACL reconstruction 2014
Left Knee Scope debridmt (for chronic pain) 2015
PRP Injections & Bone Marrow Stem cell injections to both knees - 2016
Left knee Chronic kneecap pain 2014 - present

Offline dal_knee

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #4 on: March 05, 2017, 11:36:29 PM »
jordan

How did the clean-out surgery leave you worse-off?  Can  you give a little more background here?  These are generally supposed to be "no harm done" surgeries so I'm curious.   Technically, do you know what the surgeon actually did in the "clean-out"??
2007 - partial medial meniscectomy
2010 - full thickness chondral defect & adjacent subchondral edema MFC.   Direct result of stupid partial mensicectomy from 2007.
2014 - Subchondroplasty, chondroplasty, unauthorized 2nd partial medial meniscectomy.
2015 - partial failure of subchondroplasty.

Offline Jordan1

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #5 on: March 05, 2017, 11:57:34 PM »
jordan

How did the clean-out surgery leave you worse-off?  Can  you give a little more background here?  These are generally supposed to be "no harm done" surgeries so I'm curious.   Technically, do you know what the surgeon actually did in the "clean-out"??

Hey dal_knee,

The debridement I had done was to "clean out" previous scar tissue as well as clean off the back of my kneecap to try and help relieve chronic pain - he also wanted to check for any torn meniscus because I was having medial pain as well but everything looked good there. I unfortunately did not get any pain relief from the surgery, and lost most of the muscle I had been maintaining before hand. Was in the same amount of pain after surgery (and a hefty amount of PT) with less muscle to support and had a hell of a time trying to put muscle back on (pain was inhibiting muscle at that point). Also battled complex regional pain syndrome that crept in after that surgery.
Left knee Mensicus repair 2005
Left knee ACL Reconstruction 2005
Right knee ACL reconstruction 2010
Right knee ACL reconstruction 2014
Left Knee Scope debridmt (for chronic pain) 2015
PRP Injections & Bone Marrow Stem cell injections to both knees - 2016
Left knee Chronic kneecap pain 2014 - present

Offline dal_knee

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #6 on: March 06, 2017, 12:05:26 AM »
Shoot, um were you around 13 years of age at first ACL reconstruction for which you are seeking MACI for patella??   You are saying you are currently 25 years old.

Also please know that MACI within UK is most likely a different animal compared to MACI within U.S.   You should do extensive comparative analyses.    Consider Cartiform as a possibility but it seems like they are only taking patients who have no other concomitant issues.   And just because Dr Farr accepts you as a possible Cartiform patient does not mean he has your absolute best interests in mind.   He is much involved in a "treat-and-observe" scenario.
 
2007 - partial medial meniscectomy
2010 - full thickness chondral defect & adjacent subchondral edema MFC.   Direct result of stupid partial mensicectomy from 2007.
2014 - Subchondroplasty, chondroplasty, unauthorized 2nd partial medial meniscectomy.
2015 - partial failure of subchondroplasty.

Offline plaidwandering

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #7 on: March 06, 2017, 12:26:20 AM »
not undead of for a clean out to leave you worse

happened to me in my original arthroscopy in 2013

Offline dal_knee

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #8 on: March 06, 2017, 12:36:02 AM »
yep but there's something entirely wrong with the system when the surgeon offers a non-invasive surgery to help matters, that leaves patients worse off.   I want to know what exactly is involved in the clean-out.   I've heard differing descriptions, like whatever floating & loose cartilage material is simply removed from the joint space , to pieces of cartilage hanging off the edges of the defect are removed, to actual (assertive?) removal of intact & normal cartilage removed from bone surface......so what is really going on technically? 
2007 - partial medial meniscectomy
2010 - full thickness chondral defect & adjacent subchondral edema MFC.   Direct result of stupid partial mensicectomy from 2007.
2014 - Subchondroplasty, chondroplasty, unauthorized 2nd partial medial meniscectomy.
2015 - partial failure of subchondroplasty.

Online Vickster

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #9 on: March 06, 2017, 01:47:07 PM »
I'm not sure how it differs to that used in the UK?  Cells harvested arthroscopically, seeded onto porcine membrane, membrane implanted into knee?

https://www.fda.gov/downloads/BiologicsBloodVaccines/CellularGeneTherapyProducts/ApprovedProducts/UCM533182.pdf

Sounds very much like the procedure I discussed with two surgeons back in 2010.  I had the initial scope, but the surgeon (to whom I was referred thanks to an awkward insurer) decided that due to a slight valgus alignment the repair would only have about a 20% chance of working unless I had a DFO first, recovered and then went back for the MACI.  I decided against :)

Be interesting to know what is different :)

I also discussed a different procedure called AMIC, single procedure, microfracture, similar membrane over the top.  Would have been my usual surgeon, insurer wouldn't cover

From the Royal National Orthopaedic Hospital cartilage repair rehab document:

ACI technique:   For this technique cells are harvested following arthroscopy and cultured.  A periosteal flap is used or bilayer collagen membrane is sutured over the prepared cartilage defect, and the cell suspension is injected underneath. 

MACI technique:   For this technique cells are harvested and cultured following arthroscopy using a collagen membrane matrix seeded with the cultured autologous chondrocytes.  This cell-scaffold only requires fixing with a fibrin sealant without sutures (occasionally sutures may be required).  This can be performed via a mini-arthrotomy, a less invasive approach.

AMIC technique:   This technique is similar to microfracture but it involves using a collagen membrane to stabilise the microfracture clot, providing a more stable environment for new cartilage tissue formation.  The membrane is attached with fibrin glue or sutures via an arthrotomy

My next option after the HA injections I just had would probably be some sort of clean out and then a replacement down the line
« Last Edit: March 06, 2017, 02:13:21 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 Jordan1

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #10 on: March 06, 2017, 03:44:32 PM »
Shoot, um were you around 13 years of age at first ACL reconstruction for which you are seeking MACI for patella??   You are saying you are currently 25 years old.

Also please know that MACI within UK is most likely a different animal compared to MACI within U.S.   You should do extensive comparative analyses.    Consider Cartiform as a possibility but it seems like they are only taking patients who have no other concomitant issues.   And just because Dr Farr accepts you as a possible Cartiform patient does not mean he has your absolute best interests in mind.   He is much involved in a "treat-and-observe" scenario.
 

dal_knee,

Unfortunately was 14 when I had my first surgery on the left - and that is the knee that I'm considering the MACI on. The pain is constant and very limiting for ADL. I'm looking for second opinions but also scheduled for a scope coming up in April with Dr. Noyes for a possible carticel biopsy.

Does anyone one the differences between MACI in the U.S. (the one that was just approved) vs. UK? How has anyone else's scopes for MACI/ACI procedures gone?

As far as surgeons not having me in their best interest, that is something I'm worried about. Does anyone have any other surgeons in the midwest they would recommend for second opinions on these types of procedures?
Left knee Mensicus repair 2005
Left knee ACL Reconstruction 2005
Right knee ACL reconstruction 2010
Right knee ACL reconstruction 2014
Left Knee Scope debridmt (for chronic pain) 2015
PRP Injections & Bone Marrow Stem cell injections to both knees - 2016
Left knee Chronic kneecap pain 2014 - present

Online Vickster

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #11 on: March 06, 2017, 04:35:29 PM »
On further research, I'm not sure it's very different at all to the EU/UK MACI...Vericel which has approval in the US acquired the original tech from Sanofi (which has been used in the UK)

http://www.bioworld.com/content/fda-nod-makes-vericels-maci-1st-tissue-engineered-autologous-cell-scaffold

The article explains the history of the acquisition

This was the EU trial which concluded a few years back

http://www.active-trial.org.uk/ChondralDefects.htm

Not sure if it's fully read out yet :)

Indeed the link explains that EU surgeons have been over in the US training surgeons to do the procedure
« Last Edit: March 06, 2017, 04:58:42 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 willrunagain

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #12 on: March 06, 2017, 10:26:38 PM »
Hi Jordan - I have not had MACI, but I did have cartiform surgery on a central patella defect about 1.5 years ago.  I was actually first diagnosed with the lesion by Dr. Noyes and had it scoped by him for mostly "clean up" purposes two years ago.  This surgery only provided mild relief, so I researched cartilage restoration options like ACI, Denovo, OATS and cartiform.  Dr. Noyes recommended Denovo for me, quoting me a 50% success rate and telling me to never play impact sports again.  My heart sank when I heard this, so I decided to search for other surgeons and methods.  That's when I found out about Dr. Farr and the new cartiform procedure.  Dr. Farr quoted me 80%+ success rate and said I could be back to running in about 12 months.

As far as MACI, I am not as familiar with that procedure.  Did you already have your biopsy done?  I thought I heard that MACI just got approved by the FDA less than two months ago.  No doubt an innovative procedure, but not a whole lot of testimonies on it.  All I can say is I am very happy with my knee after the cartiform surgery.  I can do one legged squats without pain.  Before surgery this was impossible.  I have also started running more.  My knee is not perfect, but I'd say it is about 85%-90% what it was before I injured it.  It only gives me some mild discomfort at the incision site, if I do too much impact the day before.

Willrunagain - thanks so much for your reply. I had my knee scoped for a similar sounding clean out over a year ago that left me in worse shape than before. I was actually considering getting a second opinion from Dr. Farr, he's the next closest surgeon to me that does those procedures.

I have no had my biopsy done yet, and with the MACI procedure that was suggested to me only being approved by the FDA within the past few months I'm committed to doing my homework on researching what might be best.

Have you had previous surgeries or other damage to your knee? Was your pain pretty constant before the cartiform procedure?

I never had any previous surgeries to my knee before the cartiform except for the exploratory scope.  My pain before cartiform was pretty bad whenever loading my knee in a bent position.

Offline Jordan1

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Re: Potential MACI with Dr. Frank Noyes - advice?
« Reply #13 on: April 12, 2017, 02:04:17 PM »
Hi everyone - an update in my knee situation. 

I am still debating on MACI procedure, but in the meantime got a lot of other opinions and an MRI. 2 other surgeons said they would recommend MACI as well, but they can't be certain that it will fix the pain I am having - worried that the burning around my kneecap could be a nerve disorder or something of the sort - but 2 pain management specialists have ruled out CRPS and just went for medication, Cymbalta and ibuprofin. Cymbalta made me feel horrible so I stopped that, ibuprofin does help calm things down a little, that and lots of ice.

My MRI showed significant cartilage thinning involving the medial patellar facet inferiorly near its junction to the patellar apex with concern for full-thickness cartilage fissures at the patellar apex. No bone stress reaction was found - my doctor said since there was not a bone reaction he can't be sure what is causing the pain, and said MACI would be more of a "leap of faith" instead of a 50% success rate. My failed scope from 2015 also showed grade 3 and 4 changes on the retropatellar surface with loose articular cartilage flaps on the medial ridge extending over onto the lateral facet of the patella in the area of 1.5-2 cm. Those lose flaps were removed, but also found grade 2 changes in central trochlear region.

My question is, could what I have going on be enough to cause the pain without that bone reaction? Has anyone had a situation like this or had cartilage restoration surgical success without having any bone reaction on MRI?

So appreciative of any response!!
Left knee Mensicus repair 2005
Left knee ACL Reconstruction 2005
Right knee ACL reconstruction 2010
Right knee ACL reconstruction 2014
Left Knee Scope debridmt (for chronic pain) 2015
PRP Injections & Bone Marrow Stem cell injections to both knees - 2016
Left knee Chronic kneecap pain 2014 - present