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Author Topic: Words of advice wanted! Will be having an ACI!  (Read 8606 times)

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Offline ajschnelk

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Re: Words of advice wanted! Will be having an ACI!
« Reply #15 on: September 29, 2009, 04:57:37 PM »
Kristin,


What is the location of your defect?



Offline nikkiluv

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Re: Words of advice wanted! Will be having an ACI!
« Reply #16 on: September 30, 2009, 04:06:14 AM »
I have to be honest in that for me, most of the pain for the first month, and immediately post-op was from the DFO, or at least that's where I felt it. I probably had pain where I had the ACI too, but I never really paid attention to that because the bone pain was more intense, again, at least for me. I do know that people have had extreme pain from ACI and have ended up in the ER though, like I mentioned. Most of my soreness/pain began when I started weightbearing. The more I increased weightbearing, the more sore it became initially.

I know you mentioned that you will be (if you elect to) having your ACI and it will be outpatient. I've just heard of more people having it as an inpatient procedure (at least one night). From those that have had it as outpatient I have heard that their doctor only does the surgery at an outpatient place, therefore an overnight stay is not possible, or their insurance will not approve them for an overnight stay even if the doctor asks for one.

You mention that you may or may not have ACI in November...is your date already booked? I'm sure if you may be having ACI you've looked into the costs associated with growing the cells. If they prepare the cells for your surgery and you cancel or change your mind, you will be charged the cost associated with growing the cells, which is around $13,000, that you'd have to pay out of pocket.

 Before my surgery my knee was pretty bad, and although the degrees of soreness and pain varied, it was constantly there to some degree. I have quite the history with it, but it never was horrible and I pretty much could deal with it. It was actually pretty good for from August 2007-August 2008 and it really didn't bother me. It was in August 2008 I was at work, doing what I do every day a million times, and as I turned around my knee completely went out and that's when I tore my lateral meniscus. It was at that time where I started to experience the horrible pain on my lateral tibial plateau area. As I mentioned in my other post my job consists of standing on a concrete floor for 8 hours/day, which was usually what did me in. Stairs and climbing were a challenge. Thinking about attempting something like a treadmill made me cringe, just for the pounding and such associated with.

As of right now, I am 19 weeks post-op. I do feel confident that I will end up in a better place than I was before my surgery. I am still doing PT 2x/week (outpatient PT since July 2nd, the first 6 weeks before that I had home PT 2x/week as well). I have gained a lot of my hamstring and quad strength back, but still got a bit to go. My knee still gets kind of stiff and sore in the area of the ACI. It feels best immediately after I wake up, and usually the most sore at the end of the day. The reason for this (as I was told and know from what I've learned) is that overnight while I'm non weight-bearing the cartilage and tissues are able to absorb fluids to make everything more cushioned. Once I'm awake and in a weight-bearing position combined with gravity all day, the tissues and cartilage naturally lose some of that fluid it absorbed. Therefore, the amount of "cushion" I feel during the day isn't the same as in the evening. It's getting better, and PT definitely helps with their intense massage and ultrasound (ultrasound especially helps me the most) with the stiffness and soreness. Also, my knee felt a lot better over the last few months versus this past week or so, since the weather was nicer and more consistent. It's getting colder here in NH now, and it's been a bit damp and rainy these past few days, which doesn't help and changes the pressure inside my knee. Ice and tylenol seems to do the trick and help out a lot. I'm able to go up stairs pretty well, and am really close to being able to go down stairs normally. The problem like mentioned before is that right now I'm in the phase where "I think I can do more than I can because I feel oaky overall, but I can't because the cartilage isn't healed yet." So, it's just mentally hard sometimes to realize that I am making progress even though I sometimes feel like I'm not.

So, overall I do believe I feel better now than I did pre-op. I know it's still "early" in the ACI world for me, so again I'm staying confident and hope that the way I feel now will only get better and better as time goes on. I'm only 24, so I'm hoping that this will be the end of my knee saga for awhile and I'll be able to live life pain-free, because to be so young and feels so old really sucks!!

Hope this answers your questions! :)

Nicole
03/25/05 - RK debridement
12/22/05 - RK medial meniscal repair
10/31/08 - RK partial lateral menisectomy
03/13/09 - RK ACI biopsy
05/18/09 - RK ACI/DFVO
01/06/11 - ACI failure confirmed
*Currently awaiting call for fresh Osteoarticular Allograft Transplant cadaver match & removal of femoral hardware

Offline ajschnelk

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Re: Words of advice wanted! Will be having an ACI!
« Reply #17 on: September 30, 2009, 02:43:50 PM »
Nicole,

Yes, I am aware of the cell growing process and will need to make a decision within the next two weeks if I plan on having it done in late Nov.  I don't have it booked, but there are a few days open that I can go with once I decide.  It's just a tough call given my symptoms, so my other options are to wait and see what happens during the next 6months to a year.  If I do have it done now, my goal is to have it late Nov, so that by spring rolls around my mobility will be fairly normal.  My microfracture was a success from the position of it filling my defect, however, it did not help much with the pain factor, so I'm not risking much by waiting...the trochlea groove is stable. 

You may be right about the outpatient/inpatient thing.  Although almost everyone I've talked to(within the last year) that has had trochlea aci was outpatient.   In addition to the outpatient piece, I (my wife) will more than likely drive home the same day, which is a 3.5hr car ride. Fun.Fun.

I know what you mean by the "i feel good", but can't do much time period...i was the same way after my microfracture.  I felt like I could do about anything after three/four months, but yet I had to wait until the 10mo mark before I could really test it.  I know it's more like 12-20mo before really testing with ACI, but i can relate and dread going through it again.

As far as your rehab goes, are you able to ride a bike outside of therapy? It seems like most seem to ride a bike (casually) around the 5 or 6month mark.   Regardless, it seems like you're pretty much on schedule for being almost 5months post.  ;)

Offline madel23

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Re: Words of advice wanted! Will be having an ACI!
« Reply #18 on: September 30, 2009, 05:36:27 PM »
Hey there,

Did your doctor tell you why you still have pain even though the microfracture was a "success?"  I seem to be in the same situation, at 7 months post-op, with an MRI showing good fill, but still much pain. 

Offline nikkiluv

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Re: Words of advice wanted! Will be having an ACI!
« Reply #19 on: September 30, 2009, 06:39:26 PM »
I was able to ride a stationary bike as soon as I was about to achieve 90 degrees flexion, and roughly at about 4 weeks post-op. Although at this point it was mostly for motion as I couldn't really ride a bike "normally" at that point. It was about 6-7 weeks that I was able to ride a bike normally (not fast, and not with resistance), but I was able to make a complete revolution without getting "stuck" or having my knee feel really stiff.

I do have a stationary bike at home which I love, and do ride. I made the investment after my biopsy and before my actual ACI. I knew that it would be the first thing I'd be able to do following my ACI, and was told numerous times by my doctor, his PA, and others that "a stationary bike would become my best friend." It feels good to actually be able to do SOMETHING, and that's how I felt about it even when I couldn't do a full revolution. It was something more than SLRs and quad sets!

I'm completely okay if I never run again (I have never been a runner anyways). I just want to be able to live day to day and do things like skiing occasionally (maybe...I've had brand new ski equipment since 2003 that I've used MAYBE 5 times due to all my knee pain and surgeries since then), but mostly just day to day living without having to think about my knee! I'd be thrilled beyond belief if that's how I end up at the end of all this :)

As for your decision and such, I know it's a tough call especially with your symptoms. For me the deciding factor was of course my pain, my age, the timeframe that I had to do it, my awesome insurance benefits, the fact my job is so understanding and would hold my position for the long time I'd be gone, how quickly my defect went from okay, to bad, to horrible in such a short time, and what I plan on doing with my future.

My pain was bad enough for me to even be considering it. My defect was literally the ENTIRE surface of my lateral tibial plateau. It definitely got really bad in a short amount of time. I'm really young, and know that I am about to "rebound" from surgery and am more likely to be able to handle the demands of such a demanding surgery (crutching around, etc.), better over the older I get. I chose to have my ACI over the summer over the winter. Yes I did miss out on beach trips and such, but being in NH the weather can be awful and horrendous during the winter months. Chancing being on crutches in the winter and on snow and ice after such a big surgery wasn't for me. I've done it before and I lived in constant fear I'd fall. My job is extremely understanding (I've been there off and on for college summers since 2004, full time since 2007), and they just want me to get better over coming back too soon. Right now I get paid short-term disability. As for my insurance, I like to think I have amazing insurance. Having an MRI, x-rays, unloader brace, and biopsy surgery meant that everything for my ACI (hospital stay, home therapy, home PT, all my PT visits now) are "free," as I met my deductable and co-insurance easily. I didn't really even owe anything on the biopsy, either. So, that was also a consideration, not having to meet my deductable and co-insurance again if I had the surgery in a new year.

Mostly, the deciding factor was the time frame. I currently still live at home with my parents, in between graduating from college and going back to school. They were here so I was able to have the help that I needed during the challenging times immediately post-op. Also, I had plans of hopefully entering an accelerated nursing school program in January. So, if that worked out I knew I wouldn't be able to have the surgery for at least another year and a half from January. Also, I think the fact that I was "on a roll" with my knee surgeries (tearing my meniscus last August, surgery in October, getting referred to Dr. Minas and having my appt. in February, then the biopspy in March), I just said okay I'm going ahead with everything just get it all done and be over with it. I didn't wanna postpone something I knew I'd end up having at some point. I actually am very happy with the decision I made and don't regret it. It turns out that I actually got accepted into the accelerated nursing program in January, and the day I found out is the day I came home from the hospital after my ACI/DFO. I looked at that as a goal for me to work towards to get better, and a sign that things are finally turning around hopefully!

So, I know your situation is very different from mine, but those are a bunch of the factors I thought about. If your even considering it, then you must have enough pain that bothers you frequently. Like I said, once I made the decision to consider it I didn't look back and just went ahead with it. I guess you have to decide if your pain is really bad enough that you want to try something else to try and do something about it, or you can live with it and just see how things go from there.

Good luck with everything!
Nicole
03/25/05 - RK debridement
12/22/05 - RK medial meniscal repair
10/31/08 - RK partial lateral menisectomy
03/13/09 - RK ACI biopsy
05/18/09 - RK ACI/DFVO
01/06/11 - ACI failure confirmed
*Currently awaiting call for fresh Osteoarticular Allograft Transplant cadaver match & removal of femoral hardware

Offline ajschnelk

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Re: Words of advice wanted! Will be having an ACI!
« Reply #20 on: September 30, 2009, 08:25:26 PM »
Nicole:  Thanks for the info.

Yeah, my local OS is advising me not to go forward with it, but after meeting with Cole, he feels that he can improve things.  My local OS thinks that I COULD be better, but that it's not worth risking it since I don't have much pain with most daily activities.  I pretty much have no pain until my knee loads at 30 degrees.  This of course occurs when squatting, walking stairs, jumping, running hard, and when doing many sports.  If I don't load the knee hard at 30 degrees, I'm good.  I can stand and walk on my knee all day long, and day after day with no problems.  Even when I do stuff that creates pain, I never have swelling. 

My main reason for having the ACI would be so that I can become more active, which includes things like running (not marathon type running), downhill skiing, wakeboarding, hiking, etc.  And from what I've gathered and what Cole has told me, there's really only a 50% chance of getting back to full impact activities pain free and better than 80% chance of being pain free with normal day-to-day stuff.   I would be okay with not being able to do some of these things, but honestly that would be the primary reason for having the ACI and would be my goal from day one.  Then the other side tells me...why go through it if after 2yrs i'll only be able to do the same things I can do now...low impact stuff.   

I would be interested to know from people that are 2+years post ACI and are unable to do impact activities, the reasons why...is it strictly pain, or is it just the basic mechanics that are tough to perform due to the lack of strength and mobility of the leg and/or joint?

I am older than you at 33 and I haven't been the same person, athletically speaking, since the microfracture when I was 28.  If I do decide to do it, I was thinking the winter months would be best for rehab since I would be spending 90% of my time indoors anyway.  I would also hope to be off crutches by late December which is when the real winter weather begins here in Michigan.  I would hope that the crutches and snow will not be an issue, but I guess it could for a couple weeks. However, there are benenfits of rehabbing during the spring/summer as well...being able to get outside compared to being cooped up inside for 6+weeks is a huge advantage, mentally.   I also have two boys (one and four years old) and they definitely don't make my decision any easier. 




« Last Edit: September 30, 2009, 09:07:47 PM by ajschnelk »

Offline ajschnelk

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Re: Words of advice wanted! Will be having an ACI!
« Reply #21 on: September 30, 2009, 09:04:06 PM »
Hey there,

Did your doctor tell you why you still have pain even though the microfracture was a "success?"  I seem to be in the same situation, at 7 months post-op, with an MRI showing good fill, but still much pain. 

No clear answer.  From what I've been told and what I've researched, it's mainly due to the fact that the fibrocartilage is not has durable as true cartilage, so even with the defect filled, the tissue can be weak and cause pain.  It could also be due to an area or multiple areas that didn't quite fill as well.  My defect is about 80-90% filled, so what pain I'm feeling could be due to the small areas that didn't quite heal or a combination of the two.   One or both of these scenarios is probably what you're dealing with.   
« Last Edit: September 30, 2009, 09:06:10 PM by ajschnelk »

Offline madel23

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Re: Words of advice wanted! Will be having an ACI!
« Reply #22 on: October 01, 2009, 04:37:23 AM »
ajschnelk,

Thanks for the info.  I really hope that's not the case with me, and that I just need more time.  I sure as hell don't want to go through surgery again.  I am in a similar situation to you, no problem with most daily activities, but distance running has been my life for the past 12 years, and I'd like to get back to it (I think I'll go crazy if not!).  The thought of doing an ACI, which is not even guaranteed to improve things, is horrifying to me!  I am going to see Dr. Cole in October, so that should be helpful, hopefully not too discouraging.  Good luck with everything on your end!

Offline ajschnelk

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Re: Words of advice wanted! Will be having an ACI!
« Reply #23 on: October 01, 2009, 04:50:08 AM »
ajschnelk,

Thanks for the info.  I really hope that's not the case with me, and that I just need more time.  I sure as hell don't want to go through surgery again.  I am in a similar situation to you, no problem with most daily activities, but distance running has been my life for the past 12 years, and I'd like to get back to it (I think I'll go crazy if not!).  The thought of doing an ACI, which is not even guaranteed to improve things, is horrifying to me!  I am going to see Dr. Cole in October, so that should be helpful, hopefully not too discouraging.  Good luck with everything on your end!


I hate to mention this to you, but I feel the same way today as I did 10months after my microfracture and that was 4+ yrs ago.  I actually ran often on a treadmill up until the last year or so....it's now too painful to do so, but I never got back to any high impact activities.  However, I remember hearing that it can take up to 2yrs before a microfracture fully heals, so you may want to give it some time, but if you don't seem to be noticing any improvement, it's probably not a good sign.  I had a new pain after my microfx and that new pain never did go away.  I still wonder to this day how I would be if I never had the microfracture, because what cartilage I did have covering the defect was removed. 

Did Dr. Cole do your microfracture?  Was it a scheduled microfx, or a surprise?


Best of luck to you.   
« Last Edit: October 01, 2009, 04:54:16 AM by ajschnelk »

Offline madel23

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Re: Words of advice wanted! Will be having an ACI!
« Reply #24 on: October 01, 2009, 04:51:36 PM »
No, I've never seen Dr. Cole, but I will be in Chicago in a couple weeks and decided to make an appointment.  I still think things are improving, just really really sloooowly.  So hopefully by the 10-12 month mark it'll be better.  If not, I will have to see about other options--it would be nice if they'd come up with a way to reduce recovery time with ACI!  That is my main concern.

Offline ajschnelk

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Re: Words of advice wanted! Will be having an ACI!
« Reply #25 on: October 01, 2009, 05:17:36 PM »
I totally agree... is it the intial recovery time of 6-8 weeks or the long term recovery?  My only concern with the ACI is the first 2months, I will be able to deal with the 3-12months of recovery pretty well (i think).  Although, if you have a demanding job activity wise, it could be a tough 6-10months.   Keep me posted regarding the visit with Cole. 


Offline lady

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Re: Words of advice wanted! Will be having an ACI!
« Reply #26 on: October 04, 2009, 10:31:41 PM »
My best advice with ACI (and any other surgery). Is follow docs orders to a T. It can very hard to want to do things when you are feeling "better" don't. And take the pain meds as ordered. I tried several time to lay off and really regreted it Years later and I still remember that was a big mistake. But I had 2 little kids at home and felt I couldn't be "high" all day.

My mistakes couldn't be helped. I need the surgery and I didn't have much help at home becuase of everyones work schedule, infact my husband had to get  a second job becuase I wasn't working. I had a 6 year old and a 2 year old at home. It was tough. Try to get as much help as you can even with tasks you think may be "easy".

I would stock up on some books you were interested in, maybe find some computer games or xbox type games. I was lucky that my family found some games I could play on the computer with my 6 year old. My dad when he could would take me for long rides so I wouldn't feel cooped up. I had my surgery in the winter and it is tough to get around on crutches on sheets of ice. When I was a kids I feel 2 weeks after major surgery on the ice. It was horrible. So I tried to only go out when there wasn't much ice.


oh and my mom inlaw made me cool lambskin covers for where your arm pits won't get sore. And she attatched a bag so I could put stuff like the house phone or if we were going out other stuff.
dislocated patella and chopped off most of chondal 1985
chondroplasty/medial meniscus repair 1996
ACI  quater size defect-surgery failure
lateral meniscus repair2002
chondroplasty, lateral Meniscectomy2006
synvisc & orthovisc injections 2008/2009
drained and cortizone injection 2008

Offline ajschnelk

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Re: Words of advice wanted! Will be having an ACI!
« Reply #27 on: October 05, 2009, 04:11:09 AM »
lady,

I see that your ACI was a failure...when did you have the aci and do you know why it failed? 

Offline lady

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Re: Words of advice wanted! Will be having an ACI!
« Reply #28 on: October 05, 2009, 09:11:16 PM »
I had it in January 1997. The 2nd person my doc preformed the surgery on and the last. No sure why it didn't work. My first sign of oh geesh what am I doing was when my insurance and hopspital were fighting over the $1000 a pop glue I needed. In the end the insurance company refused to allow the surgery unless I went with the free non FDA approved glue. And the hospital agreed. I was at the point of confussion and went with my docs judgement. (Dummy). Although I'm sure nothing bad has happened becuase of the glue I'm not sure if its part of the reason.

My doc didn't give me other options for surgery and at the time I had no way of knowing what was out there. The internet at that time wasn't what it is now so it was hard to get much info. I thought I had a great doc who had my best interested but now I relize he just wanted to preform the surgery more. I have found out the other guy he did's surgery also failed. He never told me about oats or other procedures. Which I found out he didn't the other guy either. He was my 2nd opinion and compared to the 1st I thought he was FABULOUS. Thats another story and rather very funny now.

I did everything to a T. I wanted it to work so bad. I had young kids and I didn't want to go through another procedure. Plus I didn't want to have to be out of work again. In the end a year later I was pretty sure it didn't work by 2 years later my doc was telling me to limit activity move to a house with less stairs, only swim for exersice and 5 years later had me looking for a desk job (i'm  a preschool teacher). I was devestated. He just kept pointing me off.  My stupitiy I stayed with the qukeroo so long. I really didn't want to go far (boston) because of my kids and how much time I would be taking for appt. and whateer else. It was stupid. I should have went to the best to begin with. I also stopped going to the docs. I think I say him a hlf a dozen times in 10 years. Everytime I went he told me what not to do. So I neglacted wat I needed to do the most. Anyways.....
I have kept up with info on ACI and I have learned it is much differnet and with the right doc with experience it is a great surgery. I would research the doc as much as you can and get a second opinion. Good luck. Where are you locate?
dislocated patella and chopped off most of chondal 1985
chondroplasty/medial meniscus repair 1996
ACI  quater size defect-surgery failure
lateral meniscus repair2002
chondroplasty, lateral Meniscectomy2006
synvisc & orthovisc injections 2008/2009
drained and cortizone injection 2008

Offline ajschnelk

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Re: Words of advice wanted! Will be having an ACI!
« Reply #29 on: October 05, 2009, 10:15:04 PM »
I am in Michigan and will have have Dr. Cole in chicago do the procedure, if I elect to have it done. 















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