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Author Topic: MACI using CaReS system (1st in UK apparently) - follow my progress  (Read 10791 times)

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Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #15 on: November 21, 2006, 02:16:22 AM »
Just to let you know you're in my thoughts.  :)

Hope you're not experiencing too much pain and will be heading home soon.  I'm anxious to hear how you're doing. 

Kristi
2 x 1.2 cm defect of right medial femoral condyle
Microfracture, right knee, October 18, 2004.
MACI using CaReS, same knee, November 30, 2006

Offline gammyknee

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #16 on: November 22, 2006, 12:48:08 PM »
Had the implantation on November 16th and was in hospital for 4 days. I hate to be a conveyor of bad news but I had no idea how painful the first few days would be - thank god for morphine.

The area around the incision was very painful to say the least and U couldn't get out of bed for the first day. On day 2 I could use my crutches to get to the toilet but needed someone to lift my leg onto the floor - no way I could hold it on my own. Was moving very slowly - the pain just from my leg hangiong down was incredible and I really had to concentrate to move it.

Day 3 - CPM for 8 hours. I was very anxious about this but it wasn't painful - more that my knee felt tight and stiff.

Day 4 - still on CPM and when not, in a brace and on crutches. Stil very painflu and very slow movemnt but getting better.

Day 5 - CPM, visit from physios re exercises (can't take CPM machine home), brace flexion increased to 60 degrees and home. Being home is much more difficult in many ways to being in hospital. Stairs to cope with, can't adjust back of the bed to make it easier to sleep on back, guilt that my husaband is having to do everything and the realisation hitting me that I have to be in a brace and on crutches for 12 weeks!!!!

Hope your harvest went OK Kristi. I will write again when I feel up to it. Mixture of the op., drugs and managing oncrutchesd make me feel quite weak and tired. I'm sure it'll get better but still early days.

Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #17 on: November 22, 2006, 05:51:23 PM »
Glad to see you here...even if you are loopy and drugged.   ;)  Sorry to hear about all the pain.  I've been very anxious about this and am trying to expect the worse, so you haven't really alarmed me.  But,  I'm not sure you can ever completely prepare for it.  I hope you get more comfortable as you become accustomed to things and start to feel some relief.  I know it's hard to depend on others.  I remember with my microfracture it was very frustrating not being able to do "everything" like I normally do, but surprisingly everyone adjusted and it was fine.  I know this time is going to be much harder though b/c of no driving and also the more difficult recovery.

Hang in there and pop on when you can!  Just enjoy those drugs for now and try to stay as pain free as possible. 

I started a thread for my  journey....I had my followup/pre-op appointment today so I'm off to that to report. 

Kristi
« Last Edit: November 22, 2006, 07:57:15 PM by kalyjoe »
2 x 1.2 cm defect of right medial femoral condyle
Microfracture, right knee, October 18, 2004.
MACI using CaReS, same knee, November 30, 2006

Offline gammyknee

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #18 on: November 27, 2006, 12:46:11 PM »
Just re-reading my last post - I was so out of it on drugs that I'm amazed it makes any sense at at all.

Am now 10 days post-op. Pain is generally very good - no real problems sleeping for example other than the cumbersome brace making it very difficult to lie comfortably. the incision still feels sore but when I'm doing my bending exercises it's more a case of my knee feeling very tight and stiff than painful.

Much more of an issue than the pain is the feeling of uselessness and not being able to do the most mundane things - can't make a cup of tea and carry it into the living room - and the more important things like taking my kids out to the park. Another issue, particular to the UK I think, is that I couldn't bring a CPM machine home - it is much more difficult to do the bends myself and the reality is that whereas I sat with my knee in the CPM quite comfortably for 8 hours, I'm not likely to devote the same amount of time to doing them myself. I would advise people to look into hiring one if at all possible.

On an embarassing note - I'm in the Daily Mail today in all my braces and crutches glory (not very flattering). Makes me sound like an Olympic athlete cut down in my prime when the reality is that I'm a 38 year old who used to be pretty active but was reduced to not being able to do the things someone of my age could do - i.e. go for long walks, run around on the beach with the kids.

In terms of pain and the knee itself I feel quite positive but I go through periods of finding it very difficult to cope with not being able to do anything.

Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #19 on: November 27, 2006, 03:08:19 PM »
Glad to hear you are feeling more like yourself and are experiencing little pain.  It's a relief to me to know that it does get better.

I know how hard it is to not be able to do "everything" as you normally do.  Especially being mom....well, we do it all right?  It's hard to let others take care of you and to let things go on around you as you sit there helplessly.  I'm trying to look at it like this:  It's a small sacrifice to be so limited for maybe 12 weeks or so in order to have a "normal" knee back and be able to do what you normally do.  What keeps me going is the hope that I'll be able to do all the things I love pain free and without the constant fear of another injury.   Plus, I know how much I enjoy helping others out, so why take that joy away from people that want to help me?   As for the tea....with my microfracture what I did was take a larger than usual mug and fill it only halfway.  Then I would sort of pivot my good leg while holding the mug (no crutches)  as I made my way to the next room.  It took awhile....but I got there and was able to enjoy my tea on the couch. 

It's too bad you couldn't have a CPM machine at home.  It will be interesting to see how my recovery differs based on this. 

And hurray for you for being a local celebrity!  Enjoy your moment of fame.   :D

Keep us posted!

Kristi
2 x 1.2 cm defect of right medial femoral condyle
Microfracture, right knee, October 18, 2004.
MACI using CaReS, same knee, November 30, 2006

Offline TallPaul

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #20 on: December 04, 2006, 10:06:30 AM »
ooops! posted this in your previous thread when I meant it for this one.   :-[ Here it is again....

Hi Shivaun

Hope all is going well for you. My OS has referred me to another OS (who I am seeing next week) to talk about the possibility of ACI and I was just doing some research on it when I came across your story...funnily enough I found the article in the Daily Mail about you and was reading your previous thread at the same time thinking "this must be the same person" before I got to the bit where you mentioned the Daily Mail article!

Anyway, so now I'm thinking I should try to get my new OS to use CaReS or perhaps I should switch to your OS if possible. But of course I might still be told that any form ACI isn't appropriate for me.

Good luck with your rehab. By the way, when you mentioned the problem of not having a CPM machine at home it made me think of something in someone else's thread to help with that called an orthoslide. The website where they sell them is www.mdti.co.uk. I think they're about a tenner.

Best wishes

Paul
3/96 ACL
9/03 notchplasty
9/06 notchplasty/partial meniscotomy
currently considering MACI

Offline gammyknee

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #21 on: December 07, 2006, 09:00:07 PM »
Hi Paul

I have to say that my OS has been absolutely fantastic (Amit Chandratreya, Princess of Wales Hospital, Bridgend). He worked hard to get the funding, has always kept me informed (even phoning me on my mobile phone) and the nurses, anaesthetists, physios and everyone else I've come across at the hospital have all said, completely unprompted, that if they ahd to have a knee operation they'd want hime to do it. As for whether this will completely work for me ro be right for you who knows but it seemed like a good option to me.

Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #22 on: December 07, 2006, 09:35:41 PM »
Hey, forgot to add in my thread about your concerns for quad atrophy....it goes away fast, but it does seem to come back rather quickly once you can start going full force on it.  Don't be too worried about it.  Will you be doing any sort of PT?  Strength training will really help you get your muscle back.  Once you're allowed to put full weight down, even if you don't have a PT program you can do some strength building on your own.  That's my plan.  And at least it's the winter season..pants will hide that ugly shriveled up leg for now.   ;D

As for depending on people.  UGH!  I know....to be frank...it sucks doesn't it???  Just think though..we are moms and we do SO MUCH for everyone.  This is the time for them to give back to us.  I know for me, my family is eager to help, but my problem is just accepting it and accepting that maybe they don't do things exactly how I would.  And I'm pretty much helpless to do anything about it.  But remember...this to shall pass...just keep repeating that.  :-) 

Kristi

2 x 1.2 cm defect of right medial femoral condyle
Microfracture, right knee, October 18, 2004.
MACI using CaReS, same knee, November 30, 2006

Offline blue6226

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #23 on: December 08, 2006, 04:54:45 AM »
gammyknee:
Just wondering how big your graft site is?  I am due to have my maci implantation on monday  :-\
I'm enjoying walking up stairs and lying on my side in bed for the last few days.
Also, how is CaReS different to the normal maci?
Thankyou!  Hope you keep progressing from here on :)
16 yrs old
fractured femur + dislodged cartilage lateral condyle
2nd stage maci surgery in dec

Offline Jakem

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #24 on: December 08, 2006, 06:50:10 PM »
Hi Blue,

Are you in America or the UK?  If in America, are you part of the clinical trial?

Offline gammyknee

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #25 on: December 08, 2006, 07:37:13 PM »
Hi Blue

My defect is / was approx. 2.5cm x 2cm. In terms of the CaReS system the main difference is that the membrane is a 3D scaffold (5-6mm deep) so that it can fit the depth as well as the area of the defect.

Good luck with the MACI. It will be painful in the short term but already at 3 weeks post-op I have very little pain (only tightness and stiffness around scar tissue), no pain at implant site and apart from being in the brace and on crutches things are going well, so it looks good at the moment.

Offline blue6226

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #26 on: December 09, 2006, 06:46:15 AM »
Hi

Jakem:
I'm in Australia :)

gammyknee:
I think mine is 0.7x1.2, so slightly smaller.  I'm really not looking forward to the first few days, but i'm hoping that like you I can be relatively comfortable by NYE.  It will be interesting to see how your system works in relation to a normal maci treatment.  I've been told that all of my criteria (lateral femoral condyle, young, fit (supposedly), no other knee problems) are the best possible, so fingers crossed it will work for both of us!  

Heres another question though: when you woke up, what type of brace did you have on? One of those uncomfortable straight ones, or a comfortable one with the degrees dial on it?  I hope mine is comfy, I think the last thing I want when I wake up is a stiff cheap brace..lol not that i'm fussy or anything  ;D
16 yrs old
fractured femur + dislodged cartilage lateral condyle
2nd stage maci surgery in dec

Offline blue6226

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #27 on: December 09, 2006, 06:56:17 AM »
Also gammyknee, (sorry if you've already answered this, I can't seem to find it in your previous posts) - whereabouts in your knee was your implant? Thanks
16 yrs old
fractured femur + dislodged cartilage lateral condyle
2nd stage maci surgery in dec

Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #28 on: December 09, 2006, 01:17:59 PM »
Hi there!  Hope you're doing well.  Few questions for you.

At what point did you stop having pain at the impant site?  That worries me that you said you have none b/c I still have quite a bit and even in the brace, I often will get sudden shots of pain if I move my leg a certain way or twist it even slightly.  I'm thinking it's normal, but after reading you now have none.....wondering if it is.

Also, how in the heck are you sleeping in this brace????  I'm a side/belly sleeper and this thing is really hindering my sleep.  I am able to sleep on my side a bit, but not very comfortably.  I wake up a lot at night.  The thought of still having three weeks of broken sleep is kind of getting me down.  I just want to be able to stretch my leg normally.  Are you able to flex your quad comfortably?  And if so....at what point could you do that?  I'm able to flex it, but I do get pain in my implant site when I do and I can't hold it for long.  I am two weeks behind you....so that could be it.  But just wondering where you were at then!   :)

I go back to OS on Thursday, so I will address this with him as well.  I wish I could get in touch with the other people that had this done over here. 

Kristi
2 x 1.2 cm defect of right medial femoral condyle
Microfracture, right knee, October 18, 2004.
MACI using CaReS, same knee, November 30, 2006

Offline gammyknee

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #29 on: December 11, 2006, 01:23:47 PM »
First of all Blue, my defect is at the same site as yours - lateral femoral. I'm wearing a padded brace with the dials on so here's hoping for you - I'm not sure I'd describe it as comfortable though.

Kristi

Given that you're two weeks behind me I wouldn't worry about the fact that you're getting pain in the implant site. I'm sure it's normal and I think the reason I've experienced very little pain is because my defect is very much at the back of my knee and most of the movement post-op - moving in bed, slight twisting seemed to engage the front of my knee more than the back. As for quads, at 3 1/2 weeks post op with a food tin under my knee (very high-tech)  ;D I can lift my lower leg off the sofa but I really have to look at my lower leg, consciously tighten and squeeze my quads and even than can only hold my lower leg for a short period of time (5-6secs) and with pain (again more at front of my knee and at scar site than at implant site). I think it's great and I'm almost cheering at being able to do a small thing like that while my very sporty 10 yr old son is looking at me as if to say "So What?". It's only in the last few days that I've been able to move my leg on and off the sofa without hooking my other leg underneath my ankle for support - and that's a struggle. How pathetic  ::)

I think you're doing really well  :) - for the first couple of weeks I was out of it. Maybe you are just used to setting high goals for yourself and being disappointed if you don't achieve them. Keep your head up as I think you're doing much better than I was in the first couple of weeks.

As for the brace it's a pain in the ass!!!!! Sleeping is very difficult. I'm sleeping in the spare room as I seem to take up so much space. I've now perfected sleeping on my side - basically by moving my leg and whole body very slowly and carefully so its on the side and then putting a pillow between my legs (reminds me of when I was heavily pregnant). Even then I don't sleep for long stretches as I need to move position but it's not too bad.















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