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Author Topic: MACI using CaReS system (1st in UK apparently) - follow my progress  (Read 10792 times)

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Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #30 on: December 11, 2006, 09:29:26 PM »
Well, I will cheer you on even if your son doesn't.   ;D  I think you're doing great!  Are you doing leg lifts on a regular basis?  I do....I do them with my brace on to add some weight and I've got 2.5 lb ankle weights I want to put on, but not sure if I'm allowed yet.  Another question to ask OS on Wednesday I guess.  I'm able to lift and hold them pretty easily, but I do have some pain and pulling in the implant site.  My incision site is just now starting to itch and pull a bit, but nothing too bad. 

Thanks for the words of encouragement.  I guess I do expect a lot out of myself and my body and that is probably the reason for my impatience.  I was VERY active prior to this surgery so I know my state of mind is probably affected by that.  I feel pretty good today b/c I did some running around with a friend and picked up some things for the holidays.  Of course, I'm exhausted now and stressed to fit my six hours on the CPM in...but it was worth it just to get out.  Are you able to get out often and if not....how are you dealing with it? I think that has been my biggest struggle and I'm only 11 days out. 

Glad to hear you aren't the only one whose knee has kicked you out of bed.  I've been sleeping on the couch b/c it's just easier and more comfortable, but I did go to bed the last few nights because I missed my husband.  :-[  It's very hard to cuddle though with that big brace on.  UGH!!  I do like you do now...I put the pillow between my legs to sleep on my side, but like you said, it's hard to move comfortably.  Every move has to be thought out and well executed.  Out of desperation this morning, I took the brace off just to try to see if I could lay on my stomach...just for a moment b/c I miss it so much...but it was impossible.  I can't really straighten my leg all the way yet and that is a problem with belly sleeping. 

Keep up the good work!  You're moving along nicely!   :)  BTW, did you ever get my PM? 

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 kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #31 on: December 14, 2006, 02:09:25 AM »
Hi there!  Had my check up....just wondered...can you extend fully?  (I know I'm not supposed to compare, but just curious.)

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 #32 on: December 14, 2006, 06:29:18 PM »
Hi Kristi

First of all I agree with your OS and with your friend who posted on your thread. You are doing really well at only 13 days post-op  ;D (I struggle to hold a lower leg raise for any length of time and you are wondering if it's OK to put weights on your ankles!!!) and you shouldn't really compare defects.

Now on to the bit that is bound to get you thinking the worst - I can almost fully extend and the reasons I can't quite are: my normal leg almost hyper extends slightly and I don't think my bad one will get back to that, plus my knee locked in a bent position in May (when the defective cartilage tore away) and I haven't really been able to fully extend since then. I do think that differences in our experiences re. leg extension and pain at the implant site are more to do with the fact that we've got different defects at different sites.

I had a scare today - going upstairs, just at the point where my full weight was on my crutches, one of the crutches slipped off the end of the step. Even though i was wearing my brace, my knee bent sharply and twisted a bit. Halfway up the stairs i had to steady myself while feeling like crying and feeling sick :'(  I was OK but quite shaky afterwards - it reminded me that while I've been feeling very positive I've had big surgery and my knee is fragile (brought me down to earth with a bump almost literally). Now getting pain on the inside of my knee near the front whereas my defect is on the outside of my knee at the back - hope I haven't done anything.

Keep your head up - you're doing really well and you seem determined to do everything you're told and whatever it takes to make this work and I'm sure you'll be extending that leg in no time.

Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #33 on: December 14, 2006, 11:37:09 PM »
Oh no!  I feel sick for you about your near fall!  I'm so sorry that happened.  How is your knee feeling now?  I hope you didn't do any further damage.  Aren't stairs scary?  At home, I go down the stairs on my backside b/c I feel safer doing that.  But when I'm out, obviously I can't do that.  I'm always nervous going down any step outside.  I do think we tend to get quite comfortable with ourselves in this condition and you're right...forget how fragile we are.  What a wake-up call for you and a reminder to me to be careful as well. 

When do you go back to your OS?  What have you been told in regards to how long you'll be NWB and on crutches and in the immobilizer?   I know you've talked about it before, but I don't remember you saying what your OS has said.  I know it's different over there.....you guys are sort of at the mercy of the NHS and seeing the OS, but I was thinking since you are the first to get the CaReS, they'd be a little more attentive to you. 

Keep us updated!

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 Judey

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #34 on: December 17, 2006, 10:54:35 AM »
Hi Gammyknee,
I read your story in the mail, and was filled with hope. I even cut it out and keep it in my bag for inspiration when Im feeling down (how sad is that). My defect is on the patella. I wonder if the CARES system would be an option for me. Im also wondering how I can find out which other surgeons are qualified. Have you been given hope that your knee will be anywhere near as good as new. I struggle with stairs, and would love to be able to squat down again, however, I wonder wether this is just a pipe dream, and that no procedure will restore these two skills.
 Im a young fifty (or thought I was) now I feel old and knackered. I have recently had my first grandchild, and worry that I wont be able to run about with him and go for long walks etc. I know that you have young children so I expect you had the same worries. what do you think.
Yesterday is history, tomorrow is a mystery, today is a gift, that's why it's called "The Present"

Offline gammyknee

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #35 on: December 18, 2006, 03:37:59 PM »
Hi Judey

My main piece of advice would be to get yourself to a surgeon who can at least decide whether you're a candidate for cartilage implantation ASAP. i'm not sure where you live but  I can't recommend my surgeon highly enough - he's a very nice man, doesn't treat his patient like a number, kept me informed at all times and everyone I came into contact with said if they had a knee problem they would want him to operate. His name is Amit Chandratreya (Princess of Wales Hospital, Bridgend). If this isn't possible your existing knee specialist should be able to find someone. If you haven't seen a specialist yet you need to do it soon (could you pay for a private consultation for example). My only concern for you is that you are at the top end of the age range that was mentioned to me in terms of suitable candidates and of course I have no way of knowing whether the defect you have is suitable either but go for it.

I am extremely postive, if a bit fed up with the whole crutches thing, and am looking forward to the end of my recovery. There is no way of knowing at this point whether I will be completely back to normal and pain free but the results from Europe are very encouraging.

Offline gammyknee

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #36 on: December 23, 2006, 02:03:06 PM »
5 weeks post-op

Brace degree of movment increased to 90 degrees - was doing 60 degrees quite comfortably but 90 degrees now feels tough again. This whole process has taught me that progress is very slow, you need to keep pushing yourself and you need to be patient.

 :) Things feeling very positive - no painkillers for a while now.

Physio is going well - working on leg extensions and particularly building quad strength and lower leg control. No pain at all at implant site (at the back and iutside of my left knee). However went to physio and she did a lot of work on leg extensions - e.g. resting heel on rolled up towel and me concentrating on pressing back of knee down - and afterwards the back of my knee was quite sore so now I'm paranoid about whether it was just a result of the physio work or is it the implant hurting?? Is it just me or do others agree that physios are never happier than when they're inflicting pain ("That's sore", "OK just push it a bit further"!!!) Only joking, she's been excellent.

In general, apart from inconvenience I'm feeling very positive and haven't had any setbacks at all (hope I'm not speaking too soon) and would certainly recommend this procedure to others  :). I suppose the real test though will be after my scan in January and once I'm without brace and crutches, fully weight-bearing and using it again.

Offline gammyknee

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #37 on: January 03, 2007, 08:56:12 PM »
6 Weeks Post-op

Things still going very well in general if slowly. Main concerns now are:

- what exactly does PWB mean?: according to my protocol I can weight-bear up to 30kg but this is very difficult to judge. As with kalyjoe I feel like I could do more but don't want to compromise implant

- when can I expect to be off crutches completely?

- how much can I push my quads? - there's a constant internal negotiation I have with myself between wanting to make quicker progress but being very worried about the implant and the long-term. I've been very cautious but I don't want this to mean that my progress is hindered.

- how is the implant looking?

I can ask my physio and OS these questions and the scan will help but there is the issue of it being a relatively new process and things changing all the time. Having another person on this site who is going through the same process is great but there are still some questions.

As I said though things are still going really well in terms of the knee and the implant (although I have developed a slight twinge at another part of my knee nowhere near the implant site - either I've done something or I'm paranoid about the slightest thing -  and when exercising my quads the area just below my kneecap is relatively painful ). Much more mobile by the week, no pain (other than the slight problem mentioned above) at all, no pain relief, flexion and extension good and feeling positive if a bit impatient. One slight setback - at 6 weeks post-op (?) I've got a slight infection at the base of my scar - v small and antibiotics clearing it up but a bit confusing. Seeing OS next Thursday (11th) so may have more info re current status and outlook for the next month or so.

Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #38 on: January 04, 2007, 12:35:16 PM »
Hey Gammy!  I feel your frustration.  I really feel like, why isn't there a more clear recovery protocol for this type of thing?  Especially over here with this being a clinical trial, why wouldn't they have a more specific plan for each patient to follow in order to obtain accurate results?  I guess since nobody's defect is the same, or even in the same spot and everyone is different as far as activity level, etc... I can understand why they can't say "everyone do exactly this."  But I don't see why there can't be at least some guidelines.   I guess that's the price we pay by being guinea pigs.  ::)  I'm really anxious for you to see your OS and pose some of these questions to him and also to get your scan so you can "see" what is happening. 

I'm still awaiting the phone call back from my OS regarding the quad vs. implant thing.  I've actually been somewhat limping without my crutches around the house and really feel like I can be walking normal in the next week or so if I continue to strengthen my quad and practice walking.  BUT...like you...I don't want to damage my implant.  ???  Don't you feel like it's the blind leading the blind sometimes?

Hang in there!  Just think what we'll be posting about in a year.  Hopefully all this won't really matter and we'll be out dancing and running around with the kids, thinking to ourselves "thank God it isn't last year!!"   ;D

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 kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #39 on: January 11, 2007, 09:56:27 PM »
Well??  How was your appointment?  <impatiently tapping my foot> 

 :)

Kristi
« Last Edit: January 12, 2007, 01:16:09 AM 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 #40 on: January 11, 2007, 11:40:53 PM »
Hi Kristi

Bless you. You have been so supportive during this process and I can't explain enough how important it has been to have someone going through the same process as me. Not like you to be so impatient though!!!  ;D

Anyway ..... appointment went really well, the only drawback is that I'm not having scan until next week and don't see my OS for two weeks after that!! I assume if there's anything wrong with scan he'll phone me and see me sooner. Pleased with my extension and improving quad strength but really wants me to start pushing the bend into a full range of movement - at the moment, I'm struggling to get it past 90 degrees. Says everything is progressing as it should and he's convinced that if there were something wrong with the implant I would know it by now. The best news is that I don't need to wear the brace  ;D but should keep it and maybe wear it if I'm going out for a long time in a crowd  :(  I might have to delay the ceremonial brace burining for a little while. Also now allowed to put quite a lot of weight on leg. Not full weight - so probably still needing two crutches - but almost  ;D My physio will be pleased and I think will start to push me a lot more - I think the first step will be hydrotherapy and the thought of being able to move myself forward without crutches, even if its in water, is great.

Couple of points he made, being cautious as usual. Given the size of my defect, how much bone was worn away and how long I'd had it before being discovered he thinks its possible I won't be completely pain free. Also says its possible that rather than this being a cure it will buy me an extra 10 - 15 years before I might need a knee replacement. I can live with all of those things given that the alternative was extreme pain which was getting worse and the prospect of waiting unti I was old enough for knee replacement.

Feeling really positive but still know that the real test may be when we are both back to being fully active again.

Thanks so much again for your support.

Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #41 on: January 12, 2007, 01:29:56 AM »
Sooooo glad you checked in tonight!  I was worried I'd have to wait a day or so to find out how it went!   :)  I'd have to pop a few Percocet just to get through the night!!   ;D

Sounds like things are moving forward nicely.  I'm so glad to hear about that brace.  You are even two weeks farther along than I am and I seriously think you should get a medal (or some really good chocolate) for being such a good sport about it.  There is NO WAY I would've lasted that long with that thing.  But...now you are liberated!  Hurray!  That is great news about the implant most likely having worked.  What a huge relief!  I agree with you that the PT will probably start pushing you more and that is good news.  You will be ditching the crutches in no time, I'm sure.  It seems like once you get on that road, it goes quickly.  I really think you have the advantage over me that you started PT so much sooner than I did.  It was five weeks before I even began and I'm really struggling to get my quad strength back.  I'm sure you are way ahead of me in that area and that should really help you with the weight bearing and further recovery.  The hydrotherapy too sounds like a great plan.  We won't be doing that here....so I'm envious of you. 

I also agree that it has been great having someone else going through the exact same procedure.  One frustration for me has been the lack of information on this and being able to look something up and say "oh, that's normal."  It's the not knowing if everything I'm experiencing is okay that seems to cause me the most amount of stress.  Having you here to say "yeah...I feel that too.." has really helped a lot and eased some of my anxiousness.  So..right back at ya with that!   :)

I've been limping the last few days with no crutches and trying to do my PT exercises at home.  I'm still not having a huge amount of success getting my quad where it needs to be and it gets frustrating.  I see the PT again tomorrow and I'm going to ask her if me walking with no crutches and such little quad strength could further be harming my knee.  I guess my frame of mind was that walking would help strengthen my quad, but with the way I'm limping, I really don't think I'm using my quad.  So...I haven't quite put the crutches away yet and in fact, am using them at home tonight because my knee is a bit sore. 

Will keep you posted and you do the same!  (And don't keep me waiting next time!   ;))

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 #42 on: January 13, 2007, 08:23:50 PM »
Hi Kristi

Thnaks for the words of encouragement - again. I know you can relate to the whole brace thing - it sounds silly but to be free of it is so liberating. I wasn't really wearing it as much as I should have been anyway but for my surgeon to officially say I don't need to wear it is great. I'm sure your quad strength is improving more than you think it's just that you had such good stregth beforehand that it probably feels so much weaker - I've been surprised at how quickly the muscle has wasted though, are you?

I can't believe you're not on crutches or even that you're only on one - I don't feel strong enough and I'm a bit scared. See, again I admire your rebelliousness  ;D I'm looking forward to physio on Monday and hope I can really start to push it now - the quad is getting better all the time, given that I can remember having to really concentrate and look at my lower leg just to slightly raise it off the bed for a few seconds, but there's still a lot to do. The bending is tough - getting it past 90 degrees is very difficult - it's painful but it's also almost as if it feels like it just can't bend any further.


Will keep you posted

Offline kalyjoe

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Re: MACI using CaReS system (1st in UK apparently) - follow my progress
« Reply #43 on: January 14, 2007, 09:02:01 PM »
I find it interesting that we are struggling in different areas.  Then again...probably due to the differences in where our defects are.  I have full flexion; I can bend my leg far enough to almost touch my calf to my hamstring.  BUT...I have difficulty in full extension. When I lay flat, my leg still has a slight bend in it and I have to really focus to straighten it.  It also causes some pain and discomfort. I also cannot stand with my leg straight up and down.  My quad shakes and my knee feels almost bruised when I do it.  Are you able to get full extension without any pain?   And yes, it is amazing how fast the quad atrophies.  And very depressing.   ::)

I have PT this week on Wednesday and Friday b/c the kids are off school tomorrow.  So, I'll be trying to do my exercises at home.  Good luck tomorrow at yours. I hope you get the okay to push more.   I forgot to tell you...regarding the brace...my PT gently reminded me I am supposed to still wear mine until full quad strength is achieved.   :P I usually do wear it when I go out anyway, just to be safe...but to actually be told I should kind of sucks.  <sigh> 

Isn't it nice sleeping without it though?  Are you back in your own bed yet? 

Have a great week!!

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 #44 on: January 15, 2007, 01:27:31 PM »
Hi Kristi

I think the differences we are expereincing at this stage are almost certainly to do with where our defects are. The thought of even trying to bend my knee as far as you can makes me feel a bit nauseous  :o . However, yes I can straighten my leg without too much difficulty other than, as I've said before, my normal strighten is almost a hyperextension and I don't think I'll get back to that which I don't think is a bad thing. It's almost at a normal extension - couple of degrees out - and I don't get any pain when doing it either, just feels like it's as straight as it will go, but not as straight as other one. Bending on the other hand ..... went to physio this morning and pushing it to 100 - 105 degrees was so painful I actually shed a tear  :'(  (I then felt pathetic and my husband called me a baby - lovely).

The PT was much tougher today after I told her that I can weight bear much more and my OS wants to push things along (should have kept quiet)  :) Given me some exercises to do: putting a Pilates ball against the wall, lying on back and pushing legs against it it; lying on back with both knees bent and lifting hips off the floor. Plus some other things to get my knee and brain communicating as Ive been finding it difficult to gauge where my leg/ knee is in space if I'm not looking at it (sounds mad but is apparently quite common) - sitting on ball, with both feet on floor and just rocking back and forwards, lying on tummy and bending knee up behind me. Re weight bearing I know I could use one crutch with little difficulty or limp (been trying it at home without husband watching) but she wants me to continue to use two crutches, for a couple of weeks, so I can concentrate on walking motion. However, if my physio and OS weren't so over cautious, I do think that it's possible to be crutch free by about 10-12 weeks - do you agree?

Sorry to hear about the dreaded brace thing   :(  - they are a pain in the backside and I'm not sure how much it helped anyway (I know it controlled degree of bend but I couldn't have bent it anymore anyway). Re being in own bed, not yet but really should - the worst part is that I'm kind of getting used to sleeping on my own.

In general, I'm still feeling positive but every time I go for Physio it reminds me that while I'm making progress I'm still a long way from 'normailty' and there's so much I still can't do. Hope you had a good day at home with kids and hope your two PT sessions go well - keep me posted.