Advertisement - Hide this advert





Author Topic: Possible MACI - HELP?!  (Read 2662 times)

0 Members and 1 Guest are viewing this topic.

Offline Jordan1

  • MINIgeek (20-50 posts)
  • **
  • Posts: 21
  • Liked: 2
Possible MACI - HELP?!
« on: April 13, 2017, 02:44:25 PM »
Hi everyone! I am a 25 year old female, I'm looking into possibly having the MACI procedure done on my left knee. I've had 3 other surgeries to this knee, the current pain I have gets pretty bad - burning around my kneecap, swelling, pretty constant pain and can't walk or stand for very long. It started 3 years ago and have since developed a lot of muscle pain in my quad, pain in my other knee etc. I have tried cortisone, arthroscopic debridement, bone marrow stem cell injections, a ton of physical therapy but nothing gets rid of the pain.

I've gotten several opinions, 3 surgeons have recommended MACI but 2 of them said they can't be certain that it will fix the pain I am having. They are 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. It made me feel horrible so I stopped that. Ibuprofen 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?

I've gotten some great responses on my other thread, any further help or similar stories out there are beyond appreciated!
« Last Edit: April 13, 2017, 02:46:53 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 stevew4270

  • Regular Poster
  • ***
  • Posts: 74
  • Liked: 3
Re: Possible MACI - HELP?!
« Reply #1 on: July 11, 2017, 01:31:53 PM »
Hi Jordan

Sorry to hear of your pain I m in the same position as yourself!!

What country are you in? If the UK I went for treatment at The Royal National orthopaedic Hospital in London and can say I have received good treatment from there. I Am unaware of the bone reaction your on about, the stem cell treatment is a long process of rehab going to hard(my problem) or to slow will be a major part of the success. However I know your pain and feel if you dont try the treatment your not going to get anywhere this I m sure you know. Its always agamble ut a ggamble worth trying in my opinion.

Good luck!!

Offline Jordan1

  • MINIgeek (20-50 posts)
  • **
  • Posts: 21
  • Liked: 2
Re: Possible MACI - HELP?!
« Reply #2 on: July 12, 2017, 02:38:55 PM »
Thanks for your reply stevew4270. Its definitely a rough kind of pain - would you mind sharing more about your story and what you had done? Did it help?
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 stevew4270

  • Regular Poster
  • ***
  • Posts: 74
  • Liked: 3
Re: Possible MACI - HELP?!
« Reply #3 on: July 12, 2017, 03:28:45 PM »
For sure. Emails my best point of contact [email protected]  but more that willing to share my experience.

I broke My tibula Diagonally into the joint at age 19. I was full of drink and fun fighting with friends not knowing I had broke it I tried to run on it crushing the bone worse. When the bone was pinned and reset in hospital it was set to low causing me to walk slightly bow legged. However this was not obvieous to the untrained eye but over the years and me doing lots of exercise the medial side of the trochlea grove due to me walking slightly bow legged had excess pressure causing the articular cartilage to deteriorate and wear out.

When the pain stopped me from doing normal activitys I went to see a few surgeons in london. I had the stem cell implant MACI type done where the put the camera into your knee observe the damage cut a small bit of cartilage out a non weight bearing area of the knee and send it across to coppenhagen lab and grow from 100 to between 10-15 million cells on a collagen membrane, the second op they open your knee up glue, stich or both the cells into the damaged area of the knee.

The rehab of his surgery has to be taken very seriously. Unfortunately due to the mechanics of my knee being out mine failed, BUT I have since had a high tibial osteotomy to correct the mechanics and am now pushing to have the stem cell treatment again. My Cartilage implant did work for about 6 months before it failed though. In hindsight the mechanics being out had damaged perfectly good cartilage so the stem cells did not have a chance. As long as the mechanics of your knee are ok then the surgery has a good chance of working.

The pain your feeling is horrible, you wonder if this is you for the rest of your life, I know this first how depressing it is and probably feel nobody understands. Its hard and have my full symethy, but your knees wont heal by doing nothing I doubt. If you have any questions fire away I could go on forever about my knee pain but best you ask what you want if any info. I would describe my pain as a throbbing ach when aggravated it was piercing pain. I think its worth the suffering if operations work, but nothings a garuntee. My knees alot better now since mechanics were corrected but still agony if i do to much and the part of the knee the articular cartilage is missing rubs against the patella(knee cap).

Offline stevew4270

  • Regular Poster
  • ***
  • Posts: 74
  • Liked: 3
Re: Possible MACI - HELP?!
« Reply #4 on: July 19, 2017, 11:05:44 AM »

Offline ayoung555

  • MICROgeek (<20 posts)
  • *
  • Posts: 3
  • Liked: 0
Re: Possible MACI - HELP?!
« Reply #5 on: August 23, 2017, 08:36:41 PM »
Hi

I was diagnosed with Osteochondritis dissecans 10 years ago and ended up having a mosaicplasty surgery. I more or less was living a normal active life but it's only the last year or two, i started feeling discomfort.

After another MRI scan last week, i got the results back.

The medial femoral condyle showed extensive sub chondral bone lesions/changes associated with overlying cartilage regularity, areas measuring 35mm in transverse diamter.
In layman terms...not good!

I am only 32, male :)

The surgeon who carried out my last surgery has now recommended doing a MACI surgery due to the size of the lesion.

I did some research today and came across this site...really appreciate anybody else going through a similar situation.

Some guy who I contacted even mentioned this...not sure it's valid?
"Now there doing stem cell transplants using bone marrow out your hip bone. It cheaper and quicker as only need one operation now using bone marrow."