Banner - Hide this banner





Author Topic: My proposed extensive MACI - Feb 3rd 2010  (Read 16967 times)

0 Members and 1 Guest are viewing this topic.

Offline goobervision

  • MICROgeek (<20 posts)
  • *
  • Posts: 8
  • Liked: 0
Re: My proposed extensive MACI
« Reply #15 on: January 19, 2010, 07:33:26 AM »
I have had MACI over the full  femoral medial condryte in December, apparently that's better than partial.  And microfracture to the rear of the patella at the same time.  So far all is going well and the sofa is OK for my laptop, but I am avoiding work as I don't want to hinder physio (I had microfractures 4 years ago and got into work too early meaning that physio suffered).

I have bought a static bike as I was allowed to cycle without resistance from about 2 1/2 weeks, that and some DVDs help to burn an hour!

My wife works during the day and takes the kids to nursery, so when home alone the most difficult thing I  find is carrying things like plates to emptying bins.  Mind you there are so many annoying things about crutches. 

Anyway, good luck.  It's not that bad, the worst thing for me is getting back in the gym to get the muscle back, hours of hardwork and boredom.

Offline SevenofNine

  • MINIgeek (20-50 posts)
  • **
  • *
  • Posts: 49
  • Liked: 0
Re: My proposed extensive MACI
« Reply #16 on: January 19, 2010, 11:22:35 AM »
Hi goobervision, nice to hear from you & that you are managing alone in the daytime; that's great news about cycling so soon! It's a coincidence that I have been scanning eBay for an exercise bike as I thought it would aid in getting range of motion back and I understand from this site that movement assists in flushing the knee fluids through the site, that in turn supports healing.

I've just been for my pre admission check at the hospital today and asked about the CPM but it is not used here so I'm thinking the bike is the go - there doesn't seem much that the physio can do in the early stages, though the support and encouragement to keep taking those 'baby steps' are important too; I'm not dismissing physio but feel that it really kicks it further along the rehab - as you seem to agree from your previous experience.

I take it you are NWB? how are you finding being in a brace and on crutches?

Cheers,
7of9
May 22 2013 RK LR & medial capsular plication, debridement, meniscus repair
Feb 3 2010 LK MACI
Nov 4 2009 LK scope - meniscus repair, debridement,      biopsy for MACI

Offline goobervision

  • MICROgeek (<20 posts)
  • *
  • Posts: 8
  • Liked: 0
Re: My proposed extensive MACI
« Reply #17 on: January 27, 2010, 07:56:53 AM »
Hi 7of9,

My rehab has been something like....

Day 1) 5 hours sleeping while MACI and Mircrofractures done, I don't remember much of the entire day due to anasthetic and morphine  :P
Day 2) CPM to about 50 degrees (I think)
Day 3 to 2 weeks) Orthoglide to so passive knee bends and NWB in locked brace
2 weeks to 4 weeks) Orthoglide and "touch weight" with 40 degree bend in brace, other leg raises, ankle pumping etc.
4 to 6 weeks) 25% WB and Orthoglide, static bike no resistance and the other stuff
6 to 7 weeks) 50% WB with a couple of other excersises, nothing major and nothing that I would consider muscle building.  Slight  increase in resistance on bike
7 to 8 weeks) 75% WB and keeping up with the last stuff

I'm at 7 weeks and a day, some slight pain which feels like it's from the microfracture rather than the MACI.  I want to do more but am sticking with the protocol.  I have done something like 70,000 passive knee bends but they are no more :) as the bike and general walking around makes this.  In terms of degree of bend I am ahead of the protocol and have the full range of movement without pain (heel to bum) and full extension.   Swelling is slight and other than the odd dull ache everthing feels good.

I'm fairly experienced in this having has about 8 operations including microfracture on my left knee so may have a bit of an inside track on getting through this.

The NWB - pain in the rear as the locked brace doesn't help with walking.  Carrying stuff is difficult, picking things up/down is hindered by crutches all of the time.  I have two braces, one which doesn't flex at all which is my preference for sleeping as the flex-brace has lots of lumps and hinges that don't help sleep - made worse by the fact I sleep on my side.  As my strength improved on crutches getting jobs done is much easier (plasic containers etc for food and drinks help, as does a backpack), as WB comes in I feel more confident in carrying but don't over balance as a result of carrying some stuff!

That's about it at the moment, hopefully I can say goodbye to the crutches next week and be FWB.


Offline SevenofNine

  • MINIgeek (20-50 posts)
  • **
  • *
  • Posts: 49
  • Liked: 0
Re: My proposed extensive MACI
« Reply #18 on: January 30, 2010, 09:54:54 AM »
Hi Goobervision, thanks for the detailed rehab protocol you followed in the early weeks; I've no doubt you will celebrate the dumping of the crutches! I find it encouraging that you could toe-touch as early as two weeks - post the removal of staples/stitches? I wonder how you know 25%/50%/75% wb - is it a best guess? with pointers from PT?

I managed to buy a used stationary bike yesterday and will move my living area furniture tomorrow to accomodate a clear run (hahah) on the crutches; only three days left for me waking; time certainly has a way of moving quickly; you are already about 8 weeks which is fantastic.

Cheers,
7or9
May 22 2013 RK LR & medial capsular plication, debridement, meniscus repair
Feb 3 2010 LK MACI
Nov 4 2009 LK scope - meniscus repair, debridement,      biopsy for MACI

Offline thevoice

  • Regular Poster
  • ***
  • Posts: 132
  • Liked: 0
Re: My proposed extensive MACI
« Reply #19 on: January 31, 2010, 02:30:29 PM »
SevenofNine - out of intrest, after your first op a few months back - does your knee feel better now then it did right before that op? good luck for wens.

Offline SevenofNine

  • MINIgeek (20-50 posts)
  • **
  • *
  • Posts: 49
  • Liked: 0
Re: My proposed extensive MACI
« Reply #20 on: February 01, 2010, 10:24:16 AM »
thevoice,
my knee does not feel any better post the scope - it burns & burns & burns - though I have to say I'm becoming used to the burn somewhat. Also my quad strength has improved as I've been working them hard - yes through the burn hahah.

thanks for your well wishes for Wed; I've been racing around like a mad thing getting supplies and things done whilst I can walk & drive - well not exactly racing but you know what I mean - one day I hope to run again and not continually seek an alternate route to the dreaded stairs.

Cheers,
7or9
May 22 2013 RK LR & medial capsular plication, debridement, meniscus repair
Feb 3 2010 LK MACI
Nov 4 2009 LK scope - meniscus repair, debridement,      biopsy for MACI

Offline Lottiefox

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • Posts: 2393
  • Liked: 16
Re: My proposed extensive MACI
« Reply #21 on: February 01, 2010, 12:29:46 PM »
Good luck for the op this week, hope all goes smoothly. I've been told I'm a candidate for ACI here in the UK or possibly the new cartifill that is being trialled at one of the UK hospitals - big patella defect and smaller medial condyle. I'll be watching your progress with intertest - you've got the right mental attitude and I'm wishing you well for the op, a smooth recovery and a return to that running one day!

Lottie  :D
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline SevenofNine

  • MINIgeek (20-50 posts)
  • **
  • *
  • Posts: 49
  • Liked: 0
Re: My proposed extensive MACI
« Reply #22 on: February 02, 2010, 10:46:04 AM »
thanks for your well wishes Lottie; my big day tomorrow. It's certainly come around quickly and I'm as prepared as I could be; I'll keep posting to the boards and share my pain hahah.

good luck with gaining access to the trials in the Uk if you decide he ACI path is for you.

Cheers,
7of9
May 22 2013 RK LR & medial capsular plication, debridement, meniscus repair
Feb 3 2010 LK MACI
Nov 4 2009 LK scope - meniscus repair, debridement,      biopsy for MACI

Offline Lottiefox

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • Posts: 2393
  • Liked: 16
Re: My proposed extensive MACI
« Reply #23 on: February 02, 2010, 11:08:37 AM »
One more sleep!!! ;D

I'm envious - you're making the right choice and every day after tomorrow is going to be a step forwards - literally! ;)

Ahh the ACI trials......unfortunately we don't have private insurance at the moment, and many of the ACI trials require you to have had a failed previous surgery - oh great!! I am not going through failed MFX thank you very much just so I can get another operation! Ridiculous, surely if you *need* ACI you need it. MFX on the patella doesn't work, chondroplasty gives temporary relief if you're lucky on the patella (unlikely as I have a big lesion!!)....so one surgeon I saw just said he'd do a chondro then go straight to PFJR! We may end up paying. But I'm currently progressing through an Extended Choice Network referral with the NHS to a leading private specialist - you can demand referral under ECN to a private hospital that has opted into the scheme and the one with the OS I trust has, thankfully! He has already said MFX won't help, and if he says I need to go straight to ACI/MACI/Cartifill then I have a case to enter a trial I hope. It isn't cheap if we need to pay, but what price your health (we've spent far more on stupidly fast petrol eating cars over the years I am sure, so knee health would be a beter investment!) NICE need to wake up and smell the coffee..ACI is getting good results and whilst it costs more, in the long run it will save money. but NICE is all about cost short term, not patient health!!!

*Rant off/* :P

Good luck, I'll be thinking of you in damp chilly Britain!

Lottie ;D
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline Rennschnecke

  • SuperKNEEgeek
  • *****
  • *
  • Posts: 881
  • Liked: 1
Re: My proposed extensive MACI
« Reply #24 on: February 02, 2010, 12:14:55 PM »
Lottie

I think your criticism of NICE is a bit one-sided. NICE is concerned about how to spend their limited budget across a large number of conditions and the upfront cost of funding ACI has to be justified by them against putting those costs towards treating those with cancer, Alzheimers, MS etc.

I appreciate your own personal concerns I'm having extended knee problems myself. However, I also understand that NICE need to be sure that they recommend the optimal treatments that are available based on the best clinical evidence. The problem is that there has been little research conducted as randomised trials to establish whether ACI is better than other treatments. They were due to issue guidance last year (I think), but they have postponed this to 2012 (?) pending further research.

The NHS will fund some MACI procedures performed by a limited number of surgeons. If your OS is one of these then he can just put you on his waiting list like any other op. Entry into a trial may not necessarily mean that you will have the procedure of your choice. You would need to chat through all the ins and outs if offered I guess.

I can fully understand your current concerns and distress about how to get the best treatment (been there and still there ...) and ACI/MACI seems so clearly superior to the other options. However, as I'm one of the lucky (???) people with complications to those around me it seems stupid not to have gone for PFJR which would have a shorter recovery and probably fewer ops. Having done further research, it seems as though I could have returned to my life far sooner and maintained a good level of activity as well. I guess what I'm trying to say is that the choices are not clear cut and whatever an OS suggests is influenced by their own perspectives as well as their training.

Rant over!

I wish you all the best in sorting out your difficulties though. If you're with an OS you trust and are happy to work with then that's great.  Hope it all goes through smoothly. :)
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 SevenofNine

  • MINIgeek (20-50 posts)
  • **
  • *
  • Posts: 49
  • Liked: 0
Re: My proposed extensive MACI
« Reply #25 on: February 05, 2010, 08:05:38 AM »
well I've come out the other end - two days post.

I actually slept last nite - the nite before I arrived on the ward around 6pm and the racket continued all nite, obs, pans, lights on, lights off, drugs, was all a bit of a nightmare & was happy to spend just one nite there.

I'm in a zimmer brace which PT advises I can weightbear as tolerated with crutches - this surprised me as I was expecting NWB so after a bit of argy bargy I gave it a go.... not too bad. I see OS next Wed with staples removed a few days later.

All good, still taking the drugs, just not as frequently.
Cheers,
7of9
May 22 2013 RK LR & medial capsular plication, debridement, meniscus repair
Feb 3 2010 LK MACI
Nov 4 2009 LK scope - meniscus repair, debridement,      biopsy for MACI

Offline Lottiefox

  • SuperKNEEgeek
  • *****
  • *
  • *
  • *
  • *
  • Posts: 2393
  • Liked: 16
Re: My proposed extensive MACI
« Reply #26 on: February 05, 2010, 09:10:46 AM »
Woohoo!! Good to hear from you! You're through the other side! Excellent news, hope each day and week brings progress for you.

Interesting that you can WB as tolerated - they probably expect you only to tolerate short bursts! (hiking to the bathroom and kettle and stuff!!). What does the scar and stuff feel like? (Read into that a girl's question - does it hurt like ****?!!  ;)) I'm assuming you're in a fixed leg brace - when do they allow you to start doing any bending?

Big best wishes for a smooth recovery from Britain!

Lottie  ;D
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline SevenofNine

  • MINIgeek (20-50 posts)
  • **
  • *
  • Posts: 49
  • Liked: 0
Re: My proposed extensive MACI
« Reply #27 on: February 05, 2010, 10:09:27 AM »
Hi Lottie, I can assure that only short bursts are possible - it's amazing how exhausting it is just transversing a couple of rooms:-)

Yes I have to keep the brace on with exception of showering. They removed all the padding in hospital when I asked to shower and lef tonly the waterproof dressing on. I can see the staples through this dressing, not sure how many but multiple which have to be removed in 10-14 days or else your skin grows over them - nice!! It was funny when the hospital nurse gave me the pack with the de-stapler and authorisation for the community nurse (apparently they make a home visit here to remove the staples - I was impressed with that) & said to me to make sure i was home when she called - like I'll be off dancing around town hahaha

I don't know about the scar but am not bothered - bit of a battle scar, you could make up lots of stories about that. I've got pics on my phone but don't have the link to my laptop to upload :( sorry.
Cheers,
7of9
May 22 2013 RK LR & medial capsular plication, debridement, meniscus repair
Feb 3 2010 LK MACI
Nov 4 2009 LK scope - meniscus repair, debridement,      biopsy for MACI

Offline goobervision

  • MICROgeek (<20 posts)
  • *
  • Posts: 8
  • Liked: 0
Re: My proposed extensive MACI
« Reply #28 on: February 05, 2010, 01:45:12 PM »
7of9, I hope all is going well.

I nearly managed to get rid of crutches, I'm down to one. I seem to be getting some pain from the microfractures on the back of my patella which makes getting up a small step too much.  Starting to try wall squats, not much in them but it's getting the back of the kneecap used to the weight.

Thank God I don't need to do the knee bends on the orthoglide anymore, after about 70,000 they get a little tiresome.

And I joined the local gym (membership start on hold) as apparently I can walk on a treadmill soon but to be honest as soon as I am off crutches fully I am off there, mainly upper body but something to fill the days and get me used to going to the gym again.  There's only so much daytime TV I can stand.

Offline SevenofNine

  • MINIgeek (20-50 posts)
  • **
  • *
  • Posts: 49
  • Liked: 0
Re: My proposed extensive MACI
« Reply #29 on: February 06, 2010, 06:59:02 AM »
Hi Goobervision,
you must be about 8 weeks post now - I can only imagine, seems a long way off - and you are doing so well -keep up the good work.

The only exercises I have been doing are ankle pumps (DVT prevention) and weightbearing as tolerated with crutches - that in itself is certainly exercising the 'bad' leg!! I am now at day 4 & see the OS on day 8 so will know more about his rehab protocol then.

I'm having difficulty moving the operated leg from vertical to horizontal and vice versa. I am fine when upright and fine when sitting / lying horizontal but find the transition hard from one to the other for example getting into bed my 'bad' leg feels like a dead weight and is very sore to raise..... anyone any suggestions on this would be really appreciated.

Take up the gym as soon as you can Goobervision but go easy on that leg - my gym is currently on hold but I intend to go back to the water first.

Cheers,

7of9
May 22 2013 RK LR & medial capsular plication, debridement, meniscus repair
Feb 3 2010 LK MACI
Nov 4 2009 LK scope - meniscus repair, debridement,      biopsy for MACI