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Author Topic: From start to finish.. CaReS in US...clinical trial..  (Read 26203 times)

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Offline kalyjoe

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #15 on: December 07, 2006, 09:27:25 PM »
Wow, 9-12 weeks???  That's a long time!  In my protocol it says the first 3 days, but OS told me 4 weeks.  Do you have the folder from Ars Arthro that describes all this?   Just wondering why we have such different literature when it's from the same place.  Weird, don't you think?  Although, I'm not sure where your injury is.  I'm looking at the literature now and the rehab is different for femucondyle vs the retropatellar.  I need to go back and see exactly where your injury is. 

Too bad your quad is so atrophied.  I work out A LOT and really pushed it there at the end before my surgeries to build up a lot of muscle.  I remember with my microfracture how fast I atrophied and was trying to somehow avoid that, although I know it'snot really possible.  For now, I just do a lot of SLR and try to engage my quad as much as possible without putting weight down.   Just keep in mind though all the tings we'll be able to do NORMALLY once this has succeeded!!! 

So, how big is you scar?  I still have the steristrips on, so I'm not sure what my incision looks like, but it appears to be only about 2 inches long. I've been in the CPM most of the day, but when I'm not I've been a bad girl and haven't put the immobilizer on.  Shhh..... :-X  Don't tell anyone.  And my daughter's play was cancelled tonight due to the weather (major snow) so forget about my big night out.  Maybe I can get my husband to take me to grocery store!   Ha ha!!!

Hang in there!!!

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: From start to finish.. CaReS in US...clinical trial..
« Reply #16 on: December 07, 2006, 11:38:09 PM »
I won't tell about the immobilizer and i don't blame you. Any opportunity to take it off is bliss but my husband goes nuts because he knows I should have it on. I'm a bit envious of you being in the CPM as its a great opportunity to have your led supported and not have to wear the brace - HOORAY!!

I agree with you that it's ridiculous that we have such different information and rehab protocols. I don't have a folder - it's just one sheet of papaer from Ars Arthro with quite a cursory protocol - e.g. 4-6wks: patient range of motion is limited to 90 degrees, weight-bearing of 15kg is allowed. Where did you get your info and is there any way I can access it? My defect is lateral femoral.

Thanks for the encouragement re. the fact that I can rebuild my muscle strength - it was starting to freak me out a bit. My leg looks strange after 3 weeks never mind 12. Shame that you couldn't go to the concert - I went to my son's today and it was fantastic to get out of the house and do something normal. My incision is about 3 inches long but looks really good - no redness or puckering, just a very fine line, almost like a scratch.


Thanks again for the advice and encouragement. It's good to be able to talk to someone who's going through the same stuff.

Offline kalyjoe

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #17 on: December 08, 2006, 03:11:27 PM »
Well, I talked to my OS today.  :-\ I HAVE to wear my immobliser all the time except when I'm in the CPM.  Apparently it's very important that I don't go past 30 degrees for these first 3 weeks.    Not what I wanted to hear, but....if it's something that will help insure the success of this procedure then I'll do it.  I seriously HATE sleeping in this thing.  I just want to sleep on my stomach again or even my side comfortably.  But...I'm already one week out and when I look at you Gammy....already at 3 weeks....I know we can both make it.  I feel very fortunate to have the opportunity to have this surgery.  So, it's a small price to pay.   :)

I agree it's nice to have someone to talk to who is going through the exact same thing.  Especially with this being so new and all.  I got my folder from my study coordinator at the OS's office. 

Girlfriends are picking me up for lunch today, but I'm a nervous wreck already b/c of all the snow and ice outside.  As much as I whine about wanting to get outside, I know it's much safer for me to just stay inside.  Just this morning, I was packing the kids' lunches and crutching in the kitchen and someone must've spilled a drop of water and I slipped on it and stepped down a bit on my bad leg.  I so do not need that to happen.  I think I'm just going to have the girls push me in a wheelchair b/c I can't risk slipping like that and I know it's going to be wet everywhere inside b/c of all this snow. <sigh>

Off to shower!   ;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: From start to finish.. CaReS in US...clinical trial..
« Reply #18 on: December 11, 2006, 02:11:20 PM »
I had a rough weekend mentally.  The lack of sleep was really getting to me and Saturday was probably the worst day I've had so far.  I'm generally a very positive, upbeat person and Saturday all I wanted to do was lay in bed and feel sorry for myself.  Pretty pathetic and I'm embarrassed to even admit it.   ::)  Saturday night, I finally broke down and took two pain pills (not for the pain...just for the "knock out" effect) and I was able to get a good night's sleep.  I really don't want to depend on drugs though for obvious reasons!!  I was planning on having my husband run me around a bit, but like I said, Saturday I just could careless.  So after church on Sunday, we did a bunch of errands.  It felt great to be out and luckily, the snow has melted so it's much safer for me to be out.  I have to admit though that I really enjoy doing my stuff ALONE.  The family really slows me down.   ;D

Today, a friend is coming to get me so I can do some more Christmas shopping.  I'll probably just crutch b/c like I said, it's no longer wet out.  Plus, crutching is soooooooooooo much faster.  I'm a pretty hyper person (in case you couldn't tell) and I get impatient easily.  Besides, it's a great upper body workout and I figure I'm engaging my quad by holding my NWB leg up.  So...it's the best of all worlds!   :)

Os appointment is Wednesday, not Thursday. 

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 faith

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #19 on: December 12, 2006, 09:35:49 PM »
Kristi

You are doing so well!  Just keep taking it a step at a time; every day you're making progress. 

Keep posting and let us know how you're doing.

Your friend, F x x x
R knee arthroscopy 1991; tibial osteotomy 1992; metalwork removed 1993; arthroscopy and lateral release 2004; ossicle removal 2007; arthroscopic debridement 2010; PFJR 2012; scar tissue removal & debridement 2013

Offline kalyjoe

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #20 on: December 12, 2006, 11:36:41 PM »
Kristi

You are doing so well!  Just keep taking it a step at a time; every day you're making progress. 

Keep posting and let us know how you're doing.

Your friend, F x x x


My long lost soul sister across the Atlantic!!!!  I need to email you! 

Thanks for the encouraging words.  You are always so kind and thoughtful.   :)

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: From start to finish.. CaReS in US...clinical trial..
« Reply #21 on: December 14, 2006, 02:08:13 AM »
I had my follow-up appointment with OS today.  I'm 13 days post op.  Everything looks good, but they are concerned about my inability to extend my leg fully.  When I try to, I get a sharp pain in the implant site.  Flexion isn't a problem; I can go well past the 30 degrees I'm currently set at on the CPM.  I haven't really pressed the issue with my extension because I wasn't sure exactly what I was allowed to do and want to follow the protocol to a tee to try to insure success.  BUT, now that I've been told I NEED to work on this, I certainly will.  I'm still a bit concerned with my pain, but was reassured that it can be normal and to not compare as everyone's defects are in different spots and are different sizes.  So....I will remain optimistic and work on extension.  My CPM doesn't really force my leg into full extension so I guess it's something I need to do on my own.  I wonder if other people get full extension on the CPM?  If anyone reading this can lend some insight, I'd greatly appreciate it. 

I go back on December 29th for another MRI to get a look at the site as well as to see OS.   I'm anxious to see if the MRI will show how the implant looks and if it will give any indications of success or failure. 

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 faith

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #22 on: December 14, 2006, 03:13:54 PM »
Kristi

From personal experience these things take time.  After my LR I couldn't bend my knee fully for ages and I was wondering whether I'd had a build up of scar tissue and whether I'd ever be able to bend it properly again.  But I was as determined as you are now.  I used to run myself a hot bath and sloosh backwards and forwards in the hot water bending my knee a little further each time.  It took a few weeks but I got full ROM back eventually.  And you will too.  Now you know it's something you need to concentrate on, it'll come.

Remember you're still only 13 days post op!

F x x
R knee arthroscopy 1991; tibial osteotomy 1992; metalwork removed 1993; arthroscopy and lateral release 2004; ossicle removal 2007; arthroscopic debridement 2010; PFJR 2012; scar tissue removal & debridement 2013

Offline kalyjoe

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #23 on: December 17, 2006, 01:30:24 PM »
I know, I know....be patient.  That's a problem I have!  Good idea in the warm water Faith.  Never thought of that.  I have been able to fully extend my knee.  I load up on the painkillers and ice it real well and then slowly relax it.  I really have to focus on letting my quad relax and just let my knee sort of "fall" slowly onto the couch.  I'm now able to do it without pain killers or ice....not completely down to the ground, but pretty close.  I'm feeling better about that and confident that I won't have any problems with extension. 

My left foot is very sore and fatigued.  My mom took my shopping yesterday to get those last minute items and because I don't get out often, when I do I feel the need to do EVERYTHING.  My left leg was tingling by the time I got home and my lower back was throbbing.  I don't think it helped that I fell asleep the night before in the CPM in a very awkward position on the couch.  Luckily, my husband gave me a massage last night to ease my aches and pains.   ;D 

I'm able to lay on my belly now, albeit not as comfortably as I could without the brace.  If I let my leg fall to the side, I'm able to do it, but because that then puts weight on my incision site, I can't do it for long.  But it's nice just to take some pressure off my back. 

Well, off to church today!  It's the kids Christmas program so I'm looking forward to watching my babies!

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: From start to finish.. CaReS in US...clinical trial..
« Reply #24 on: December 18, 2006, 03:43:43 PM »
Hi Kristi

Hope you enjoyed the Christmas program - I went to see my kids and it was great. You are still doing really well  :) and I'm glad to hear you feeling more positive about the leg extension - as everyone keeps telling you, it's early days. Can't believe you can lie on your tummy - I coulcn't imagine putting any pressure on the front of my knee but luckily I didn't sleep on my front pre-op so I haven't even tried.

I agree that moving your leg in the water is a good idea and coinicidentally when I went to physio last week they said they might look at me doing some hydrotherapy so that I can use the buoyancy of the water to get somne of the motion of walking back without putting weight on it. I also agree about the pressure on the good foot - I suppose yet again its a matter of just trying not to do too much.

Offline kalyjoe

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #25 on: December 19, 2006, 12:25:53 PM »
Gammy, so are you in physical therapy?  If so, how often and what exactly are they having you do?  Any indication about how long you have to wear the immobilizer?  I'm under the impression I only have to wear mine for four weeks total so just curious about you. 

I'm not feeling the greatest this week.  My lower back is really bad...not sure if it's from doing the CPM and laying in that weird position for six hours a day or if it's just from being up on my crutches.  It's really frustrating because I can't even make any small movement without my back hurting.  I'm taking my pain pills for that now.   ::)  My implant site also still has pain and I'm all paranoid about whether that is normal or not.  I know it's still early...so I'm trying to stay positive.  I'm also feeling the stress of Christmas being so close and needing to do those last minute errands and not being able to do them alone.  I find it very difficult to ask for help from people, but I'm in a position where I can't do this without help.  It's just frustrating.  Everyone else is so busy this time of year and I tend to slow people down if I go with them.   What the heck was I thinking getting this surgery a month before the holidays??? 

I've only got two more days at 30 degrees flexion and then I go to 60 for the last week.  I have to say....I'm going to be sooooooooooooo happy to send this CPM machine back.  I see the light at the end of the tunnel.   :)

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: From start to finish.. CaReS in US...clinical trial..
« Reply #26 on: December 20, 2006, 02:25:40 PM »
Hi Kristi

I agree about having the surgery and this degree of inconvenience before Christmas is difficult but the way I see it, if I'd had it done in the Summer I'd have been really upset not to be able to go out and go to the beach with my family so I don't think any time is the right time.

In terms of physio I've been going once a week since two weeks post-op. The session last for about 45mins and then I've got exercises to do at home. Mainly its about getting full extension using a resistance band to push against while doing it and a big focus on building my quad strength and control - e.g. putting a block / roll under my knee and then lifting my lower leg off the physio table while trying to keep my knee on the roll. Plus some straight leg raises - because my quads and lower leg are so weak, when I do a straight leg raise my upper leg lifts off and then brings my lower leg with it so I've got to try to concentrate on lifting my heel and lower leg with my upper leg. They've also been making me think about using my leg in a walking motion without putting weight on it so that my leg doesn't forget the action of walking - up to now the temptation when I'm on crutches is to lift it up completely or just hold it in a slightly bent position. No bending exercises because I'm bending to 60 degrees in my brace quite easily and without pain now.

Another difference in our rehab protocols - I've been at 60degrees since the beginning (Day 2) and this Friday (Week 5), I'm going up to 90degrees  ???. Also I'm not goign back to my OS for another 4 weeks and I definitiely have to wear the brace until then and I'm pretty sure I ahve to wear it until week 12 - I'm definitely encouraged to use the range of motion it is allowing and to use my leg but I think my OS is concerned (especially as its the first one in the UK) that I don't twist it - hence wearing the brace.

Will keep you posted and if I don't speak to you beforehand hope you and your family have a great Christmas - I know it won't be easy though and I'm very frustrated at being so limited but I think we have to grin and bear it for the kids sake.  ;D

Offline kalyjoe

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #27 on: December 22, 2006, 07:26:54 PM »
I agree that no time is a good time to be this limited, but I do think this is the worst time to be.  I had my microfracture in October and although I was on crutches for Halloween, it really didn't interfere with anything "big" and I didn't have to worry about ice and snow.  Plus, making Christmas cookies, shopping, wrapping, cleaning, etc....it's not easy to do like this.  The kids and I have been making cookies all day and I'm just now sitting down for a brief break.  My left foot feels bruised; I've obviously been on it way too much lately.  I've also only gotten one hour on the CPM under my belt so it looks like I'll be doing it late into the night again.   ???

That's good you're in PT.  I wish I was.  I think it would help my mood because I'd feel like I was doing something.  I do stuff on my own, but it's just not the same, yk?  Sounds like they have you on a good program.  I'm starting to think the difference in our rehab is due to the location of our defects.  I was reading my literature today and it does list different protocols, although it says nothing specific in either one about wearing the immobilizer.  I must admit I've been sleeping without mine.  I just couldn't take it anymore so for the last two nights I've left it off.  Plus, it's a cheaper one (although believe me....they billed me and my insurance an astromical amout for it!!!) and the bands are getting all out of place and uneven.  It doesn't even really keep my leg straight anymore and since extension is a concern of my OS, I figured I'm better off to sleep with my leg straight on my own.  We'll see what he says about it though when I go next Friday.  I have been wearing it during the day though when I'm not in my CPM.  I figure if anything, it will help me keep my leg straight if I should fall.  I can now fully extend my leg on my own, although I have to coax it and can't just do it automatically like my "good" leg. 

I've started getting all my statements for both surgeries and added everything up.  So far, my grand total for just the surgeries is almost $36,000.  Unbelievable!  Of course, my insurance covers most of it....there is no way I could afford all that..but still.  It makes me sick how much all this stuff costs.   

Gammy, you have a great holiday as well!  I am actually looking forward to it and it does look like the snow is going to hold off until later so that is good news for me that I won't have to worry about crutching in it.  I'm sure like mine, your kids are bouncing off the walls!   :)  Enjoy them! 

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 faith

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #28 on: December 22, 2006, 08:29:20 PM »
Hi Kristi

You're doing really well and it'll soon be Christmas - one of mine's bouncing off the walls and counting the sleeps til Santa comes too!

I went to see my OS on Wednesday and he told me that I have a lump of bone (an ossicle? ) on the top of my tibia which is causing me pain.  I think it's close to where my patellar tendon's attached to my tibia and it's aggravating it.  I need to have it removed and will be having my surgery in the next 2-3 months.  Anyway, I'll start a post in the "Bone Breaks Around the Knee" section in a while.

If I don't speak to you again in the next couple of days, have a very MERRY CHRISTMAS!!  And keep your chin up.

F x x x
R knee arthroscopy 1991; tibial osteotomy 1992; metalwork removed 1993; arthroscopy and lateral release 2004; ossicle removal 2007; arthroscopic debridement 2010; PFJR 2012; scar tissue removal & debridement 2013

Offline gammyknee

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Re: From start to finish.. CaReS in US...clinical trial..
« Reply #29 on: December 22, 2006, 11:36:53 PM »
Hi Kristi

I agree that I think the main differences in our rehab and general experiences have a lot to do with the difference in the location of our defects. I also think you're quite brave to sleep without the immobilizer - I'd love to but am so concerned about doing something (though I'm not quite sure what could go wrong in my sleep) that i'm afraid not to.

I can't believe that the cost is around $36,000 just for surgery. Thanks to the good old NHS I have not incurred any costs of any description - not for surgery, equipment, physio etc... To give you an example, when I went to see my OS two weeks ago, I told them my immobilizer had been slipping, the velcro wasn't holding the sides together very well so they promptly put that one in the bin and gave me a new one. I think we tend to take our system for granted but that really puts it in perspective.

Have a great holiday - you're right about the kids bouncing off the walls and mine have been counting down for the past week.