Banner - Hide this banner





Author Topic: MACI - 6 years on and still doing great!  (Read 13767 times)

0 Members and 1 Guest are viewing this topic.

Offline slyguy1

  • Regular Poster
  • ***
  • Posts: 133
  • Liked: 0
Re: MACI - 6 years on and still doing great!
« Reply #15 on: June 11, 2010, 03:53:20 PM »
Hi Jules,

             Can I ask you if your lesions were in weight bearing areas? I've heard that ACI is 3 times likely to fail after microfracture....you are quite lucky to have had success. Also if you can run 5 miles in under 40 minutes....you are in excellent shape. You probably never had any weight issues.....which is a big advantage. Thank you for inspiring everyone and sharing your success.

Offline JulianUK

  • Regular Poster
  • ***
  • Posts: 76
  • Liked: 2
  • User's Text
Re: MACI - 6 years on and still doing great!
« Reply #16 on: June 24, 2010, 08:21:09 AM »
Hi Slyguy1,

The legions in both knees were on the weight bearing area of my femoral condyle. Also both did follow MCF surgery, however there was a gap of 18mnths - 3 yrs between the procedures.

I did put on weight when I became immobile and I went from 12stone 4lbs to 14 stone 12lb in under a year, mainly due to total inactivity and my healthy appetite at the time. The first thing my OS did before I had the op was to tell me to try and lose weight as it would help my rehab if i did. I managed to shift just over a stone beforehand through careful eating. The other stone took a lot longer to shift and even now I regularly exercise and watch what I eat. I don't count calories or diet specifically, but we all know what's good for us and what isn't. I must say though that I do reward myself from time to time with something I know is full of calories and bad for me but it tastes fantastic. Otherwise why do all the hard work!

I am taking part in a 4m race tonight and will let you know how I get on.

all the best,

Jules
Julian

Offline slyguy1

  • Regular Poster
  • ***
  • Posts: 133
  • Liked: 0
Re: MACI - 6 years on and still doing great!
« Reply #17 on: June 25, 2010, 03:57:46 PM »
Jules,

         Again amazing success story....i do envy your running. Most former recreational runners only dream of just jogging across a grassy field without pain. I am curious if there is another success who is able to run like you. I went to one of the top rated doctors here in the US and the first thing he said to me was that he would have to break the leg to realign it....sort of like aligning the front wheels of a car so they wear out evenly. The people that had the aci surgery here......very few if any are able to run again. Even if they are somewhat pain free there are numbness issues around the knee that may be permanent.

        Another question if i may Jules.....did you have any meniscus tears removed or repaired in addition to the other surgeries? They took out a majority of my meniscus in addition to MCF surgery causing a lot of instability in the knee. I am assuming you still do leg raises like most ....which exercise helped you the most in getting strong? Good luck in your upcoming run.....

Offline JulianUK

  • Regular Poster
  • ***
  • Posts: 76
  • Liked: 2
  • User's Text
Re: MACI - 6 years on and still doing great!
« Reply #18 on: July 13, 2010, 08:17:39 PM »
Hi Slyguy1,

Well I managed the 4m run, but it was on a hot evening on an undulating course and I ran it 33mins, was hoping to break into the 32min mark. Will be running a 5m at the end of July so hope to run that in sub 40mins, as I have done in training.

I didn't have any meniscus removed or repaired as part of MACI, but did have some cartilage repair when i was about 26. I had partial tear in my ACL at that time as well.

Just to let you know I played my first 18hole round of golf yesterday, carrying my bag as well for the four hours. Managed to shoot sub 90, having not played for 12 years apart from par 3 golf with my son last year. Today the muscles ache, but so far no probs with the knees despite the rotation during the swing. This is the most encouraging sign for me that the knees are nearly 100% recovered.
I will of course let you know if this changes.

I think the core stability and balance ball exercises my PT gave me last year suddenly gave me a lot more confidence in the new cartilage. Up until then I had avoided lateral movement and probably been a little too cautious. Of course the thousands of leg raises and walking in the pool helped as well.

The running has just helped to strengthen my muscles more than any exercises in the gym could do.

anyway keep in touch,

Jules
Julian

Offline mccartjt

  • Forum Faithful
  • ****
  • Posts: 152
  • Liked: 1
Re: MACI - 6 years on and still doing great!
« Reply #19 on: July 24, 2010, 02:44:41 AM »
Jules

I have just one question for you, was your original MACI surgery an open procedure or a procedure done arthroscopically?

Thanks

JM

Offline JulianUK

  • Regular Poster
  • ***
  • Posts: 76
  • Liked: 2
  • User's Text
Re: MACI - 6 years on and still doing great!
« Reply #20 on: July 25, 2010, 10:41:02 PM »
Hi mccartjt,

Both of my MACI op's were open procdures.

regards,

Jules
Julian

Offline KartBoy

  • Forum Faithful
  • ****
  • *
  • *
  • *
  • Posts: 347
  • Liked: 7
Re: MACI - 6 years on and still doing great!
« Reply #21 on: July 28, 2010, 12:10:22 PM »
Julian

Just over three weeks to go now, really not sure what to hope for but connected up with my local physio who seems very good. She managed to find some good physio guidance on the Stanmore website and really helped me with some exercises to strenghten the leg ahead of the second operation, I was doing it all wrong!

Keep posting news, its very encouraging

Andrew
7th Mar 08 - Pedestrian hit by car
10th Mar 08 - TPF (Plate + 6 screws)
12th Mar 08 - TPF Revision
Feb 09: Hardware removed + scope
Jun 10: ACI Stage I
Aug 10: ACI II (Stanmore)
Oct  11 - MRI + Scope (In pain)
Aug 12 - MRI + Scope (In more pain)
Sep 12 - TKR ruled out :(

Offline JulianUK

  • Regular Poster
  • ***
  • Posts: 76
  • Liked: 2
  • User's Text
Re: MACI - 6 years on and still doing great!
« Reply #22 on: August 04, 2010, 09:19:17 PM »
Hi Andrew,

All the best mate and if I can help in anyway then just pop me a private message as I will probably answer it quicker. Don't always come back and visit that often.

Jules
Julian

Offline mlashmar

  • Regular Poster
  • ***
  • *
  • Posts: 54
  • Liked: 0
Re: MACI - 6 years on and still doing great!
« Reply #23 on: October 06, 2010, 10:49:16 AM »
Hi Julian

Firstly, great news on your MACIs, glad to hear you are able to do so much, very pleased for you and I hope that I can emulate that.

I note that you are happy to share experiences with people, so if you don't mind, I'd like to bend your ear.

I've also had a MACI done at Stanmore, under Mr Carrington.  All seemed to be going OK, albeit there was still swelling and pain at week 6 that left me a little concerned but I gather this is par for the course. My physio started me on strengthening exercises, which are indicated in the Stanmore protocol from week 6 onwards.  Various things including mini-squats, sit to stand, wall slides and dramatically increasing range of movement exercise - all of which were relatively low level (not squating very low, using other leg to support etc).  All seemed to be going ok for the first few days and I was getting really positive.  But, since the Sunday (a few days in) the knee got really swollen and painful and has remained as such since (it is now Wednesday) despite me giving the knee complete rest and plenty of ice. 

I just wanted to see whether you had a similar reaction to initial exercise (if you can recall 6 years back) and whether at any point you had similar reactions that subsequently died down.  My concern is that the exercise has been overcooked and the MACI has damaged/failed (although I appreciate you cannot tell me that).

Fun times!

Cheers

Mike
Left knee
Full thickness defect (20mm x 20mm), Trochlea
Arthroscopy x 3 (1997 - 2006 NHS) - lose body removal, lavage and debridement
Microfracture 2008 Spire Southampton - diagnosis of trochlea defect
MACI Stanmore 2010

Offline JulianUK

  • Regular Poster
  • ***
  • Posts: 76
  • Liked: 2
  • User's Text
Re: MACI - 6 years on and still doing great!
« Reply #24 on: October 06, 2010, 08:53:03 PM »
Hi Mike,

I think in the early days I took everything far less agressively than the some of the PT that people are doing these days. Possibly because they understand that the new cartilage responses very well in most patients.
I certainly had my ups & downs though and I used to get periods of a week or two before I made any progress at all.

Just keep icing it regularly and let it rest. Sometimes I went to see my physio and we'd just sit with the knee on ice for 20mins and have a coffee. He used to say if it was sore & painful then don't push it and just give it time. I know it's easier said than done and it used ot frustrate me to hell, but in the long-term it worked out far better than I ever expected.

Keep in touch and I hope it is ok in a week or two.

Jules
Julian

Offline mlashmar

  • Regular Poster
  • ***
  • *
  • Posts: 54
  • Liked: 0
Re: MACI - 6 years on and still doing great!
« Reply #25 on: October 06, 2010, 11:03:03 PM »
Cheers Jules, great to have people like you and Renn for some words of wisdom!  :D
Left knee
Full thickness defect (20mm x 20mm), Trochlea
Arthroscopy x 3 (1997 - 2006 NHS) - lose body removal, lavage and debridement
Microfracture 2008 Spire Southampton - diagnosis of trochlea defect
MACI Stanmore 2010

Offline Thabo

  • Regular Poster
  • ***
  • Posts: 82
  • Liked: 0
Re: MACI - 6 years on and still doing great!
« Reply #26 on: April 13, 2011, 03:21:48 PM »
Jules

Thanks for coming back after all these years. You would know how much it means for people to read about some success stories!!
I have had my surgery done by Mr Briggs as well-R patella- 5 wks ago. If this works well I will definitely do the L knee as well.
Please keep coming back from time to time.
Overuse injury 2003.
Chondroplasty and medial synovectomy May 2006.
Now bilateral grade 3/4 chondromalacia.
Bilateral patelar microfracture 04/2009, R HTO 10/2009.
R hip impingement surgery 05/2010, L hip impingement surgery 09/2010
Stage 1 MACI  14/01/11
Stage 2 MACI R patella 11/03/11

Offline JulianUK

  • Regular Poster
  • ***
  • Posts: 76
  • Liked: 2
  • User's Text
MACI - 6-7 years on and still doing great!
« Reply #27 on: June 02, 2011, 09:31:50 PM »
Hi All,

Well i'm approaching my annual follow-up at the end of this month and so far the new cartilage has stood up well over the last 6-7yrs.

As some of you will know I was running really well last summer, that was until I trapped a ball coaching football and strained a medial ligament in my right knee. Thought the worst at first but finally I am now running again. I guess it's still in my head and that will probably never go away.

Anyway as always if anyone needs some advice then feel free to message me direct as I don't log on as much as i used to.

All I can say is that MACI does work, but you have to give it time and be careful the first few months.

If you are having physio then keep up the hard work and believe it is worth it in the end.

regards,

Jules
Julian

Offline NeilG

  • MICROgeek (<20 posts)
  • *
  • Posts: 2
  • Liked: 0
Re: MACI - 6 years on and still doing great!
« Reply #28 on: August 17, 2011, 03:12:23 PM »
Hi.

A bodged microfracutre left me with permanent pain in my right knee. Another surgeon performed a lateral release with failed to alleviate my symptoms.
Like Julian I eventually found my way to Prof Tim Briggs. In February of 2008 he carried out an ACI on my knee. I would describe my initial recovery as quite atypical. It is mentally very tough being non weight bearing and feeling house bound. Once weight bearing the leg is week and you are paranoid that you will disturb the implant.

Over the next 24 months I would describe my progress as 2 steps forward, one step back followed by a period of no progress. If I am honest I felt that the operation had not fully worked. I was still in permanent pain. When I was sat the bend in my leg caused my patella to aggravate the implant on my trochlear. The only relief I had was when the leg was elevated and supported. However Proff Briggs reassured me that he believed the operation was successful and that the increase strength in my quads bore testament to this and that, hopefully, I would continue to progress.

A colleague the recommended me the Head physio at Third Space medicine in Soho. He gave me fresh belief and a more comprehensive rehab programme that included hamstring, calf and gluteal work. This was dull and repetitive but very effective. He also worked to break down some of the scar tissue that existed around the knee because of my previous multiple surgeries.

Within months I had had a noticeable improvement. The strength in my leg increased significantly. He gently introduced me to running. However I was told to run on an incline of 3% and run quickly for short distances as this would put less pressure on my joint.
I am now almost 3 1/2 years post surgery. I still have a little bit of pain in my knee when seated - but it is a fraction of that previously. I run intervals on the treadmill 2 or 3 times a week (never on consecutive days) and continue to maintain all round strength in my leg. I also feel that I am still improving.

In summary I have no regrets about having the operation. I must admit to having had some dark moments along the way. However I would urge anyone in a similar position to persevere with their rehab' and to keep the faith. It's a long journey to recovery!
 
Good luck to all.
Neil.


Offline Rennschnecke

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 881
  • Liked: 1
Re: MACI - 6 years on and still doing great!
« Reply #29 on: August 17, 2011, 07:41:37 PM »
I really appreciate your post Neil.  I've been struggling with my MACI post-op recovery.  The initial op was in June 2009 and I've had two scar tissue release ops since as well a referrals into pain clinic as it's been extremely hard to manage the pain.

I have begun to see some positive changes this summer.  A change of meds has meant I no longer sleep excessively and there are days I could almost say I feel 'almost normal'.  However, I've recently been getting sharp pain behind the patella again probably a symptom of strain and I've been fretting about it wondering (like yourself) whether it's all a lost cause.

However, your post gives me hope that things may be better next year.  I will hang in there and I'm just so glad that my OS is committed to getting me better.

Once again, thanks for your post.
1/05 Ski accident: 5/05 ACLr LK; 10/06 Scope debridement, trochlear cartilage lesion (Gr4); 12/08 Scope chondroplasty, hematoma; 5 & 6/09 MACI patella & trochlea 'kissing lesions', ROM 0 to 80; 9/09 Scope LOA, IPCS & patella infera; 9/10 Scope AIR & LR.