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Author Topic: New member - 3 weeks post MACI and struggling...!!  (Read 17111 times)

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Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #60 on: October 04, 2011, 01:39:25 PM »
12 Month Update
I have finally reached the 1 year mark and things are not as I'd hoped. :( I'm still worse off than preop, but still continueing to improve, so that's the positive I'm clinging on to.
I saw the consultant yesterday and he did not say it had'nt worked, but rather as I have not plateaued in improvement, (albeit up and down), there is the possibility of further improvement and perhaps the location of the defect and the ongoing erratic VMO function is what is putting a damper on things.

Over the last 3 months, ever since my VMO "woke" up, I have had difficulties and set backs galore. It has been functioning erratically, tiring quickly (so that I had to significantly dial back activity for it to catch up slowly) It constantly tightens up after movement ie not relaxing after contracting especially if just standing still or eccentric contractions. This leads to excessive forces and abnormal movement over the graft site with consequent irritation. (although I would have expected the graft site to not be tender any more after 12months :() . I wonder therefore if my improvement is just a reflection of improving muscle strength and coordination rather than maturation of the graft site.

What my consultant as well as my physio have found interesting is, and I'll mention it to help others who may have similiar difficulties, (although my consultant has'nt had others with a similiar dilemma). I by chance found that rubbing the muscle would let it "let go" (much like stretching it) but as it's impractical to do so between alsmost every step  I then tried a tubi grip which worked and then subsequently I have put a band accross my thigh which gives slight compression, but hey presto the muscle does as its told. Why this makes such a HUGE difference I dont know. Have been wearing it for last week constantly and hope that in time my VMO will snap out of it's "misbehaviour" spontaneously and I can then function without this band. Walking with the muscles working is smooth and pain free. Only when for some reason the VMO does'nt kick in normally, I get a sharp catching pain over the graft site. By concentrating on doing an exaggerated heel plant with foot extended I am also able to initiate normal VMO function for the rest of the walking action, but this requires constant thinking about it and is not practical in the long run.

I still cannot do stairs properly, but it's close enough to not be a problem, as long as there is a handrail.. This is because the graft site still cannot take the full weight on one leg.

I have finally stopped diclofenac( 4 days ago) It featuring in the news did have something to do with it. Interestingly, I recently met someone from Genzyme involved in trying to licence MACI in the UK. I asked about the issue of NSAID and MACI and was told that the official line is that it's OK to use as there is no real blood supply to the graft site so levels affecting chondrocytes would be negligible.

I continue to live in hope...! ::)

Offline Rennschnecke

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #61 on: October 04, 2011, 05:23:24 PM »
I'm sorry you're still having problems.  We ought to have our own little section perhaps  ;).

It's possible that people may have problems with muscular dysfunction even if their cartilage is perfect, so don't dismiss the fact that your improvements may be more muscular in origin.

Are you still seeing a physio?  Have they considered taping for you?  Have you been using an E-stim machine for your quads?

It's good to hear what you found out about NSAIDs and MACI.  I couldn't find any in vivo studies that indicated that NSAIDs would be harmful for cartilage or chondrocytes.  All the studies I found were in vitro.  I guess that accounts for the controversy!

Anyway, chinny up!  I'm still improving at 2 years post-op.  I'm not able to walk as freely as I did pre-op, but I also don't wake up with that strong deep bone pain in the mornings either.  I'm not as strong as I was pre-op because of how long I've been struggling with rehab, but I'm starting to almost achieve a low level of CV workout.  I anticipate being even better this time next year.  8)
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.

Offline Youthist

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #62 on: October 05, 2011, 03:27:25 PM »
Hey CR, can you believe its been a year?!

I am too feeling the same soreness around the graft site, some days worse than others (see my post earlier today). Skinner says we might have to scope it, but only if it has stopped "improving". I am really not sure, its soooo slow in that area to show any change, I really no longer can tell if the soreness is getting better or not. My hunch is it isn't and its worth scoping, but I really do not want to set myself back by having a scope unececessarily either.

Also I do get a catching when I bend my knee after it has been straightened at a certain angle, but its hard to replicate and sometimes just does it and catches my by surprise.

I am seeing Skinner in couple of weeks and I will update then on what his suggested course of action is. Maybe I am just being impatient with it?

Offline CR_UK

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Re: New member - 3 weeks post MACI and struggling...!!
« Reply #63 on: October 09, 2011, 05:36:37 PM »
Hey Renn/Tony
Thanks for your replies. I have been away at a conference and for the first time used the tube in London on route to Manchester returning on a Friday evening at peak time. It was quite scary with the crowds, escalators and negotiating a bag but survived. I'm not able to deal with a stumble or side way movement as yet. That precipitates the sharp catching pain  on the graft site.

Tony, I somehow feel reassured that you too are experiencing the pain over the graft site. Maybe this means it's normal?? Skinner did not suggest a scope in my case , I'm seeing him again in 6 months. I just received a copy of his letter to my GP and in it he said I'm doing "spectacularly" well.(very different from my impression!) Does this mean he is then not concerned about the tender graft site and that all will eventually be OK...?? :-\
Renn, you are still continueing to improve despite all your setbacks , so I will hold on to that , persevere and NOT give up.
I remember crushing my finger in a car door a few years back, losing the nail, fracture etc. After a year all looked normal again but it took another year before the tenderness went, soo maybe the knee is the same...the graft is there but the tenderness takes longer to resolve.
Hope you have acclimatised to the cold after such a lovely "Indian summer" just 1 week ago.
Best wishes