Advertisement - Hide this advert





Author Topic: To MACI or not to MACI  (Read 94 times)

Offline Xxiomara

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
To MACI or not to MACI
« on: November 10, 2017, 09:38:36 PM »
Hello all, this is my first time posting and I found this site after my Dr recommended I do thorough research on the MACI procedure. I am a 35 yr old female with no prior knee surgeries. I had a pretty nasty fall in Mar 2009 and have gone through years of physical therapy, more than a dozen steroid shots since 2014 and been prescribed numerous pain medication (including narcotics) and nothing really seems to help. I have tried to get my medical providers to refer me to a specialists and I finally saw one today. I was diagnosed with chondral defect on my right knee (I cannot at the moment remember the name of the location) and I have fluid build up under the kneecap. Since my initial injury in 2009, I have had almost constant fluid buildup, sharp stabbing pain, aching pain, knee locking / buckling, and constant bruising on the original injury area for years I have my good days where the pain isnít that bad at all and I can walk without a limp or climb stairs without using the handrail...then I have my bad days where just getting up and moving around is painful. My knee pops and grinds all the time. I try to stay as active as I can and love running but the pain sometimes makes it so unbearable for me. Unfortunately my jobs requires me to be physically fit and I am on the verge of loosing my job because I cannot stay 100% fit all the time because of this.

My Dr gave me the option to do the MACI surgery now (after the scope and after cultures grow) or wait until after I finish some upcoming physically demanding training my job requires me to complete. 

If I wait on surgery until after my intense training, do I run the risk of further injury?

The biggest question is...how do you know when itís time to actually opt in for the MACI surgery?  Iím afraid to jump the gun on it but Iím also afraid of further injury which may lead to me no longer being a candidate for this surgery and may need more server surgery in the future.

Thank you all for any insight or assistance!  I have read through a great many posts and everyone is so supportive here.

Offline Vickster

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 3792
  • Liked: 264
  • Neelie knee!
Re: To MACI or not to MACI
« Reply #1 on: November 11, 2017, 05:02:40 AM »
Depending on where the defect is, youíre likely looking at 12 months+ to recover to feeling better but not fixed. Youíll also probably have an extended period on crutches and/or braced (3 months), youíll likely be out of a physical job for 3 months too

Sounds like waiting to finish your training would be sensible if youíre able to do it

This gives good insight (MACI has a longer history in the UK than US)

http://www.kneeclinic.info/problems_articular_cartilage.php

http://www.kneeclinic.info/download/CKCGHCFTCCIRehabGuide040612.pdf

Thatís for femur/tibia, patella different

http://www.kneeclinic.info/download/CKCGHCPTCCIRehabGuide150111.pdf

Itís a seriously big surgery with a very arduous and exacting rehab if you want success

Good Luck :)
« Last Edit: November 11, 2017, 05:14:32 AM by Vickster »
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
LK New MRI shows lat & medial meniscus tear & other stuff
RK MRI lat meniscus tear
8/1/15 RK Steroid jab,
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation

Offline Xxiomara

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: To MACI or not to MACI
« Reply #2 on: November 12, 2017, 05:06:52 PM »
Iím terrified I wonít be able to complete my training (itís a months of physically demanding training then months on the site with no access to medical care). The training part that Iím concerned with relies heavily on me staying in a crouched position for hours at a time and Iím not sure if my knee can handle it. If I do end up opting in for surgery for my training, my job allows me recoup time and I can get back in the game once Iím healed. Iím just worried about getting worse and dropping out of training. A month ago the hole was only 4mm, now itís already 1cm. Between that month itís gotten bigger, my knee has constantly given out on me and Iíve fallen. My knee is also locking which makes it difficult to sit sometimes (my knee just wants to stay straight and it takes some force and pain by me to get it bend). My quality of life is already dramatically affected. I havenít been able to run in 2+ months and I havenít been about to run more than a couple of miles for years without collapsing in pain from my knee. Stairs are my ultimate nemesis and I always have to opt for the elevator even if itís just one flight up.

I guess my biggest question is how do you know when itís time? 

Offline Xxiomara

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: To MACI or not to MACI
« Reply #3 on: November 12, 2017, 05:10:37 PM »
I forgot to mention that the chondral defect is at the apex of the petella.

Offline Vickster

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 3792
  • Liked: 264
  • Neelie knee!
Re: To MACI or not to MACI
« Reply #4 on: November 12, 2017, 10:04:27 PM »
If itís progressing you need to know why, how is the patella tracking? If maltracking you need to address that before considering it as a patella MACI also has only about 50% success rate even if everything is working right due to the shearing forces

I went down the MACI route for a femoral defect in 2010. Had the scope but the surgeon wouldnít harvest cells due to kissing defects and mild knock knees

Discuss everything extremely thoroughly with the surgeon. Understand the success rate data and what the rehab will be like. Also are there any better options especially for the patella . Definitely think in terms of 3 months of doing little to allow the graft to harden and a year to feel back to pre op and another year to feel better

Iíd question also whether any job is worth the risk to a knee that you need for another 40+ years. Maybe consider something more sedentary within your organisation. What is it you do?

Good luck
Came off bike onto concrete 9/9/09
LK arthroscopy 8/2/10
2nd scope on 16/12/10
LK New MRI shows lat & medial meniscus tear & other stuff
RK MRI lat meniscus tear
8/1/15 RK Steroid jab,
RK arthroscopy on 5/2/15
Lateral meniscus trim, excision of hoffa's fat pad, chondral stabilisation

Offline Xxiomara

  • MICROgeek (<20 posts)
  • *
  • Posts: 4
  • Liked: 0
Re: To MACI or not to MACI
« Reply #5 on: November 13, 2017, 01:58:35 PM »
When I had my initial consultation, the surgeon said that they would more than likely have to do a bone alignment for me while they have me opened up for the MACI.

Other option were discussed-I have the option to wait for a cadaver who fits my knee shape and recovery time it much shorter, the success rate is about 5% higher but that means I have to wait on something that will fit and will only have about 5 days prep from notification to surgery. I need more than 5 days to get work and personal life in order. Surgeon also said i could be waiting anywhere from a month to a year for surgery.

Iím an accountant for an organization which does international humanitarian efforts. Iíll be traveling to some pretty remote areas and normal medical care will not be available. The training Iím going to is something along the lines of a survival/self-defense and what to do when kidnapped kind of thing. From the training pamphlet itís a pretty intense and physically demanding class thatís a few weeks long. The timing for me finally being selected to go on this trip just isnít right and I think I will have to pass it up.

Thereís always the option for me to go after recovery if I am selected again. I guess I was just looking for a definitive answer on Ďhow to know when itís timeí for surgery vs keep putting it off.

The surgeon I went to said that with my type of MACI surgery, there is an 80% success rate. I know this may sound like an a dumb question and I truely do not mean it be-but how are success rates figured?  Doc says one (80%), I google and find a range (80-95%) and then another one is 50%. 50% is honestly not worth the time and effort for me at all. If I have to go through life limping in pain everyday of my life and basically being a couch potatoe it might be better then making it worse then it already is.

 















support