KNEEtalk

The OSTEOARTHRITIS DEPARTMENT => KNEE ARTHRITIS - Articular cartilage repair => CARTILAGE REPAIR - ACI & MACI (autologous/matrix-induced autologous chondrocyte implantation) => Topic started by: Dennis BadKnee on October 09, 2010, 06:49:01 PM

Title: ACI - 1yr post op
Post by: Dennis BadKnee on October 09, 2010, 06:49:01 PM
Does anyone have any advice concerning longevity and durability of ACI?  How about activities to avoid?

I am now one year post-op and just had an MRI and follow-up on 6 Oct 2010 with Dr. Minas (Brigham and Women’s Hospital, Boston).  Details of my 22 Sep 2010 surgery:

•   ACI using BioGide Membrane - Lateral femoral condyle - (uncontained) 40 mm long x 30 mm transverse, two vials Carticel; Lateral tibial plateau, posterior one-half  (uncontained) 20 x 30 mm, one vial Carticel; Trochlea (center) - 20 x 15 mm, one vial Carticel
•   Lateral Meniscus Transplant – 40 x 40 mm meniscus using trough technique
•   TTO using Fulkerson anteromedialization – 15 mm anterior, 15 mm medial
•   VMO Advancement
•   Lateral Release – full thickness
•   Intra-lesional Osteophyte removal – center to lateral femoral condyle

Dr. Minas said my progress is excellent.  The ACI is full thickness everywhere and the meniscus is integrated into my knee.  He expects that soon I will be able to backpack.  This is great news.  He cautioned against squats (forever) because this puts pressure on the meniscus and causes tears.  And I understand, from everything I’ve read in preparation for this, I am doing better than expected.  Everything appears to be healing well. 

My exercise routine is still geared 100% for maximizing the outcome for my knee (i.e., I am doing nothing for personal pleasure alone)  – bike 1 hour, outdoors walk 5 miles, freestyle swim an hour (total at least 2 hours per day, down from 4 hours per day for the past half year – just too time consuming).  One thing to note, I do ice almost continuously to keep down swelling, and because it feels better to do so.  I hold back from getting with old friends because their intensity would endanger my knee (as I understand it) even though I walk normally without a brace or limp.

I concede I probably will give up running and skydiving (after a lifetime of both), and many other activities that could harm my knee.  But the rub I am having is finding out how fragile the newly rebuilt knee is.  I mean, even if I have a great recovery (which looks like a possibility), will I have to advise friends, “no, I cannot help lift that trailer onto the hitch, no I cannot help carry that kayak through those rocks, no I cannot help cut and stack firewood, no I am not going running, no not skydiving, no, can’t, no” etc.  My understanding is that if I cause a meniscal tear or ACI delamination – that’s all she wrote, TKA!

The more I learn, the more questions and uncertainties I have.  I know everyone is different, bodies respond differently, and knee injuries are not the same.  But I am finding conflicting data on what to expect. 

Menisci - Some say meniscus transplants (everyone!) have a very limited lifespan (~ 7 years), and that cryopreserved menisci are much more prone to tearing.  Others appear to have a return to sports, at least to non-cutting straight ahead sports like running.  Are these people highly at risk?

ACI - With the addition of my large ACI repairs, running is probably not a good idea for me – I got that!  But what I would like to know is if all of this is considered to be a temporary solution from the outset going into this type of surgery?  Is ACI considered to have a high possibility of failure, likely due to delamination? Are we expected to maintain constant vigilance over each and every step to assure we do not cause a catastrophic instantaneous failure during everyday activities?  I am not sure I can do that. 

Does anyone have anything to offer concerning longevity and durability of meniscus transplants?  How about activities to avoid?

Does anyone have anything to offer concerning longevity and durability of ACI?  How about activities to avoid?

Thanks,
Dennis

Title: Re: ACI - 1yr post op
Post by: Rennschnecke on October 09, 2010, 07:15:40 PM
Hi Dennis

You sound like you're doing very well indeed given that you've had two very specialized procedures on your knee.

I haven't had a meniscus transplant so don't know anything about that.  Also, although ACI has been around since the late 80s, there probably still isn't enough data on durability to satisfy your main concern as to whether it is a permanent fix.

Long term studies that have been reported and in the public domain have been limited to 4 years only.  This probably reflects the fact that the technology is developing all the time and funding for studies tends to be quite limited.

As far as I'm aware, OSs will still approach the graft as a temporary fix, for although it may be almost like new at 4 years, the people who damaged their knees in the first place are likely to do so again - after all you can't plan accidents etc.  However, temporary fixes that can buy you a decade or two before a knee replacement is preferred as there are only so many revisions that can be made and a limited lifetime on current joints.  The main objective is to restore you to a functional life and maximize that as much as possible.  I guess they haven't factored in issues such as people being adrenalin junkies like yourself with a whole life built on high demand activities.

There are some papers suggesting that a return to sport can enhance outcomes, including some cutting sports like soccer, but I haven't read the full papers in detail, so can't say more.  Studies on this topic are limited as many people elect to limit their activities.  Hope others may be more helpful.
Title: Re: ACI - 1yr post op
Post by: ajschnelk on October 13, 2010, 02:24:26 PM
I am unsure of the mesicus transplant, but as far as the ACI goes, it's my understanding that once enough time has passed and it is fully intergrated and mature that it will withstand high impact activities.  I mean for many folks, high level activities is the reason for having ACI.  I know I fall into this category... i could do most things pain free, but elected for ACI so that I could get back to skiing, running, bball, hiking etc.  I have read where people that had successful ACIs back in the 80s are still doing well and remain active.  I know there are a few NFL players that recently had the Denovo NT(advance ACI prodecure) procedure and are planning to recover and continue with their pro football career.  So outside of your meniscus issues, i don't see why you couldn't become fully active again.
Title: Re: ACI - 1yr post op
Post by: mlashmar on October 13, 2010, 06:21:48 PM
Like the other posts on here, I'm unsure about the meniscus transplant.  Ultimately the ACI is just buying you some time before partial/full joint replacement, it doesn't make the joint like new and any condition that predisposed you to require the op in the first place will still remain.

If you are looking to get longevity, then avoid sports which involve a high degree of torsion through the knee joint (i.e. running and twisting the knee - sports such as soccer, american football, rugby etc) and heavy pounding of the knee (running etc).  The better sports are cycling and swimming (although breast stroke is particularly bad for the knee). 

It is worth keeping up with strengthening exercises, particularly the inner range quads through leg presses etc (worth seeing a physio to get a good programme).
Title: Re: ACI - 1yr post op
Post by: ajschnelk on October 13, 2010, 08:27:39 PM
Ultimately the ACI is just buying you some time before partial/full joint replacement, it doesn't make the joint like new and any condition that predisposed you to require the op in the first place will still remain.


I guess this would be true if your defect was due to "unknown reasons"  Many defects arise from an old, isolated injury or a particular repetition over a long duration.  I tore my ACL 12yrs ago and we are almost certain my cartilage was damaged during the injury or as a result of the new ACL graft.  Either way, if i didn't have the injury, I am sure I would not be on this board today. If the remaining cartilage is healthy and show no signs of wear, i don't see why someone's graft wouldn't last a lifetime barring no new injury.   
 
Title: Re: ACI - 1yr post op
Post by: Rennschnecke on October 13, 2010, 10:36:59 PM
AJ, I understand where you're coming from and logically it would make sense.

It is my understanding that the regenerated cartilage will withstand running and sports such as soccer and tennis, but clearly there is no guarantee against injury which is just as likely as before.  So, even if the defect was the result of a trauma then you may incur such injuries again unless you modify the risk by adjusting your activities.

I suspect that is why, in the absence of any supporting data to indicate permanence, I think surgeons are reluctant to view ACI as a permanent solution.  My OS has always asserted that I will need a knee replacement some time, just hopefully not in the near future.

FWIW my defect was the result of trauma and the non-traumatized knee remains perfect!  :-X
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on October 14, 2010, 03:20:03 AM
Here are some pictures, ~ 3,000 words worth.

I agree with AJ in that the reason I went with my surgery in lieu of TKR is because I want to be very active indeed.  This is likely true for most.   But the more I read, the more it appears this is a temporary fix,  … with great degree of vulnerability, and … subject to instantaneous failure for many reasons.  I hope to learn otherwise.  Granted, we are discussing ACI and I had a meniscus transplant as well.  But even the ACI appears to be vulnerable, perhaps less so than the meniscus.

Fortunately I am doing very well at this time, so we will see.  My OS told me I am far ahead of anyone (presumably he meant with a salvage knee) at this point one year post op.   And I feel pretty good.  But I am being told I will have to curtail my end-state ambitions well below my body’s abilities otherwise.    It appears I will need to significantly scale back the plans for the rest of my life.  Very sad!

Rennschnecke, my other knee remains perfect as well, so we are in the same boat.  The underlying reason for this knee being bad was a motorcycle crash in 1987 where I tore my ACL and was told I did not need an ACL by Dr. David Joyner (you have to laugh to keep from crying) even though I was doing high mileages running in mountains, skydiving, backpacking, etc.  I also had a partial menisectomy.  Another 25,000 miles and here I am.  Well, the knee wore out.  Here are some images to show the extent (with some notes).

1.   Note the bare subchondral bone on the lateral femoral condyle.  Also note the ineffective micofracture scab (from 2005) as a white blotch near top of the defect.  My ACL was also reconstructed in 2005 and is shown.  You can see the trochlea defect as an indentation.  On the far lower right you can see the cut tibia for the Tibial Tubercle Osteotomy.

2.   The markings are for drill holes to suture the BioGide membrane through the bone on the uncontained lessions on both sides.  I was told this is a tedious and difficult procedure.  The bone slot in the center is the trough for the meniscus transplant.

3.    This shows the tibia BioGide sutured in place as well as the transplanted meniscus.

I do not want a fake knee with its limitations.  At least everyone seems to think the ACI gets better with time as far as hyaline vs fibrous content.

Regards,
Dennis
Title: Re: ACI - 1yr post op
Post by: mlashmar on October 14, 2010, 08:14:03 AM
Wow - thank god  had my breakfast first!!!  Looks like a pretty heavy going op, so it's great that you have recovered well after a year.  I hope it stays that way! 

I guess over time we all have to modify our activities (eg due to advancing age etc), its just we may have to much earlier than we liked.  I up soccer and running around 4 years ago now and I still miss them, but have got into cycling which, although not the same, I have found a passion for.

AJ - I spent about 8 months researching ACI in battling my medical insurer to cover the op.  The op still isn't recognised as effective in the UK and is under trial.  This was for two reasons, one being the cost, the other being a lack of good quality trials to demonstrate the long term effectiveness of ACI (albeit this is debatable).  In any event, I didn't come across any OS/consultant or research body wishing to claim the ACI would give you more than 10 years if effective, although that is not to say that there will not be instances of this happening and let's all hope that our ACIs outlive that period.

Title: Re: ACI - 1yr post op
Post by: Rennschnecke on October 14, 2010, 12:17:20 PM
Dennis

As someone who is way ahead of the curve as a salvage case you're already an outlier.  The recommendations are based on norms not outliers, so it's possible that you may return to a high level of activity.  Your case will add to the accumulated knowledge and may well help OSs to see that ACI may be a permanent solution for some.

However, being a risk-averse mouse I'd probably refrain from skydiving and mountain running and look for other forms of amusement, but you're clearly of a different temperament.

Talk honestly to your OS and PT about your ambitions.  Ask for the parameters to guide your return to your former activities.

I had a ski accident whilst training for a race.  If I can get my knee up to running I'd be able to get back to form.  However, I've had many more problems than yourself and my current ambition at around 15 1/2 months post-op is to get back to walking and ADL sometime next year.  I'm shelving my ambitions to return to sport for the time being, but I'm sure that once I can walk it'll change.

Try to enjoy what you have for now and not fret too much about the rest.  Easier said than done, but you never know what's around the corner of life!

Title: Re: ACI - 1yr post op
Post by: ajschnelk on October 14, 2010, 05:29:36 PM
I understand what you're all saying and yes i agree aci is not a perfect fix and is probably not a long term solution, but if folks are able to regain professional sport careers, I would like to think it will last close to a lifetime with an everyday joe.  This is assuming the graft had good fill and is of good quality. Denovo seems to be a promising improvement and would think it will only provide longer treatment due to the younger cell tissue.   

We are only a little over 20yrs out from the first group of ACIs, so no one really knows.    ;)
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on October 15, 2010, 01:52:50 AM
mlashmar – I had to battle my insurance here in the US as well.  It took me 8 months (Blue Cross).  The way it worked was that they paid for the biopsy for the ACI, but then denied the actual ACI even though they had pictures taken during biopsy.  I finally prevailed through persistence (it became such a battle!).  They wanted me to get a knee replacement instead.  The lesson is to do your research, then fight for your own right to live life as you want.  I take it you had your surgery?  When?  How are you?  How well is cycling going?  Any problems?

Rennschnecke – I hear you.  I am enjoying the slow 20-25 miles a week I am walking (it’s not running, but it gets me out – and it should only get better).  I have conceded I will give up running and skydiving.  The OS said perhaps I can run 3 miles, 3 times a week.  But if it puts me at risk, why bother, … I had been running 30-50 miles per week and to run so short is hardly worth it.  Skydiving is behind me as well.  99% of landings are soft, but there can be that one hard landing.   I do plan to backpack.  And I have gotten into bicycling more.  I particularly enjoy endurance sports and hope that will be possible (backpacking, walking and cycling).   OS says walking, bicycling and backpacking is good, but I am not sure he realizes the distances.  I will discuss at 2 year post op if not sooner. 

AJ, I don’t think I disagree with you.  I am just asking what will be possible with this ACI.  What do you expect for yourself?  I like your positive take on it and hope you are right.  I, being an everyday Joe (not a competitor), just want to live life to the fullest and will work hard to do so.  Perhaps the pros who come back had small lesions?  Denova will not be in my future (probably).   It was hard enough getting approval for this. 

Here is my question:  What will we be able to do after this ACI surgery that could not be done after TKR (state-of-the-art)?  Note:  they are coming out with replacement knees with replaceable wear parts (so longevity soon should not be the issue).

Regards,
Dennis
Title: Re: ACI - 1yr post op
Post by: mlashmar on October 15, 2010, 09:02:02 AM
Hi Dennis

Absolutely right!  I don't think you can assume someone else knows better, even when they are a qualified surgeon (having experienced a few two many pointless arthroscopies and x-rays in the past).  Insurance companies can be a real pain, especially when an operation is expensive, a lot of hard work went into the appeal and at 33 years of age, P/TKR was not an option, so a sweet victory in the end.  Your results sound very encouraging, how did you go about winning the case?

I had the 2nd stage op on 18 August, so I am about 8 weeks in now.  The first 6 weeks was quite tough, more from a mental standpoint, often felt unsure of how things were progressing and ultimately could do very little.  Luckily had plenty of friends and family about, but none the less, you kinda feel isolated then (hence finding this site). 

Last few weeks have marked the start of strengthening exercises, a real sense of panic set in at first as I had a whole week of the knee being very swollen, sore and red hot (akin to having just had an arthroscopy), this seems to have been due to adhesions (essentially gunk in the knee as a result of it not moving so much in the prior 6 weeks).  Apparently the adhesions cause pain and swelling as you break them down and get the joint mobilised, but I was completely unprepared for this reaction and really thought it had failed!  Renn pointed me in the direction of Julian UK who had ACI 6yrs ago and is doing well, he had gone through similar experiences which made me more at ease (search for his post, worth a read) and my consultant has subsequently assessed me and told me the reaction is normal.

Cycling going really well, I started off just doing a few minutes at a time, seat slightly higher than normal.  It was hard at first but after a few days, range of movement improved and speed picked up from 20rpm to about 50-60rpm.  I discussed with physio and I can now either lower the seat slightly or increase resistance slightly.  It seems to work really well and has certainly helped me move on more quickly without risking my knee.  I am keeping a diary (think its called '7 weeks and takes turn for worse').

I used to do a lot of cross country running and soccer, but I am happy to give that up, I'd rather get the most out of the joint and make the most of the op (if it works), there are plenty of things in life that I can do (recently taken up more gardening/growing veg) and I am not a professional sports person, so it is not the end of my career.

Mike     
Title: Re: ACI - 1yr post op
Post by: rbahr on October 16, 2010, 03:33:48 AM
Hi All, Dennis

Dennis and I have been sharing war stories for a bit, I have had the good fortune to have now had 2 ACIs - one on each knee. They were both classified as salvage by Dr. Minas. This was after 20 years of martial arts, running, racquetball, in general high impact stuff... I am 10 years out on one knee and 22 months out on the second knee. You can read all about it at http://www.bethnrayndogs.com/knee.htm

Early on, my attitude was that if I could buy some time, I would be happy. At this point I am a bit bored with getting cut open and fiddled with... So I would like to avoid either a full or partial replacement...

There is a lot of research out there, but to the best of my understanding the goal of creating articular cartilage still escapes people - even the product of ACI does not produce cartilage that is identical to what we started with. I have chatted with some folks at MIT doing early work in scaffolding, I have read a bit on the DeNova material, and view it as more of the same...

In terms of activity level, after my 1st procedure I really stopped a lot of the high impact activities because of a combination of discomfort as well as fear of screwing up the knee more (actually mostly a fear of screwing up things as I was pretty used to being uncomfortable)

In terms of 'guideline' or 'recommendations', I don't think that there are any that are in any way accurate. In the 10 years of being personally involved with ACI, I can state unequivocally that nobody really knows what a good guideline is or what to expect. I suspect that at some point - probably between the 1.5 and 3 year mark, you decide what you need for quality of life. I choose these points because at 1.5 years the cartilage stops changing - it is in essence fully mature, and by 3 years you should be mostly asymptomatic...

Before diagnosing my latest problem, I had decided to try running again - which in my case was really loping or something, but because of the changes to my right leg's geometry ( a 14 degree change due to my osteotomies ) it was painful... I am now getting to a point that I want to start pushing things, but I found that the average lifespan of a meniscul transplant is 7 years, which means that both Dennis and I  have (on the average) 5 or 6 years of partying on our current menisci (on the average) before we visit our favorite surgeon (again)...

This little discovery has raised a few questions, for me anyway, about just how far I want to take things... I suspect that I will need to stop caring and just enjoy myself -- which is, oddly enough, what Dr. Minas just told me...

In any case, I wish you all well and much luck with your knee sagas...

Ray

Title: Re: ACI - 1yr post op
Post by: markld on October 16, 2010, 07:39:44 PM
Dennis,

 I and others who have had ACI are having a hard time believing your story.
I am half your age and had only 1 lesion in both my knees, therefore I know what it is like to recover from ACI and it does not go as fast as you are claiming that you are recovering.
I believe that you are grossly exadgerating your recovery time.
I am 18 months post op on one knee and 15 on the other and in my 30's and ther eis no way Icould hike or walk 5 miles.
You should shoot straight with people on here so to not give them unfounded hope in recovering as fast as you claim to. Another member on here is a friend of mine and he too only had 1 lesion and is 10 months post op. He too cant believe what you are saying.
Title: Re: ACI - 1yr post op
Post by: rbahr on October 16, 2010, 08:03:16 PM
Hi Mark,

Your comments are interesting (and sadly rather negative). I feel qualified to have this opinion because Dennis and I had back-to-back follow-ups with Dr. Minas about 2 weeks ago. He stayed with me so we could review our progress and perhaps work on questions for Minas. Oh yea, I am 20 months out on my surgery - Dennis and I are both classified as salvage by Dr. Minas, we both had meniscal allografts, and other stuff - see my above web site for my details. BTW we are both in our 50's, and fairly active - not professional athletes, but more than the average person.

In any case, The night before our visit, Dennis flew in, we walked 3-5 miles, then did 1. 5 hours of hot Yoga (I call it Yoga for Type A's), then dinner. I can attest that he is as active as he claims (since I participated in this little exercise as well)

Ray
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on October 17, 2010, 08:01:11 PM
I find the need to ramble.  Sorry.

Rennschnecke Your comments are always so positive.  I appreciate your encouragement.  It means a lot to me.

AJ, you always have common sense that supports what I read in technical papers.  I just do not think that the nature of the ACI ever become fully hyaline, just hyaline-like, whatever that means.  I hope you are right about the longevity.  I fear my meniscus transplant may be the biggest limit in the lifespan of this whole thing.

Mike (mlashmar) – I read your thread.  Your experiences are common in the early rehab phase.  But be careful with that PT.   I came close to being harmed.  There is another soccer player in UK (Paul - tremy1977) who had been posting and asking good questions about rehab, then suddenly he stopped posting (I hope he is well).  Many people responded (to Paul) with good ideas.  You might want to read this last page. 

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=50526.15

Here is a study by Dr. Minas for you soccer players “Articular cartilage repair in soccer players with autologous chondrocyte transplantation: functional outcome and return to competition.”

http://www.ncbi.nlm.nih.gov/pubmed/16093535

Mark (markld) – You raise a good point.  Everybody responds differently; and those reading this board need to realize this fact.  On the other hand, perhaps I am not doing as well as I think. My regimen is not as easy for me as you seem to think.  Sorry if I mislead you.   I’ll elaborate on the difficulty aspects.
 
I worry constantly and do not do anything with my life except rehab (full time job).  I had planned for most of my life to retire early, and then do a major through hike/backpack, such as the Pacific Crest Trail before returning to the workforce in a career chage.  I also thought I could skydive and run forever, at ever decreasing rates.  Having made it to that early retirement I find myself extremely distressed due to my knee situation, unable to fulfill that lifelong dream.  So, for now, I am using my time doing full time knee restoration.  When I went to Dr. Minas, I feared he might say “too old, too far gone”.  Instead he noted I am in good shape and stated what is in his paper, “Repair of large chondral defects of the knee with autologous chondrocyte implantation in patients 45 years or older”.

http://www.ncbi.nlm.nih.gov/pubmed/18725654

While on the subject of studies, this scares me, “Increased failure rate of autologous chondrocyte implantation after previous treatment with marrow stimulation techniques”.  I had previous mircrofracture.

http://www.ncbi.nlm.nih.gov/pubmed/19261905

At the previous visit 6 Oct, even Dr. Minas said I am doing much more exercise than anyone; no problem with what I am doing.   Perhaps if I elaborate, you will understand better (and reach a conclusion that I am not doing quite as well as I lead you to believe – sorry if that is the case).  If I had to attribute my ‘success’ to something, I would boil it down to 3 things,

1.    Do everything you should (this requires research – see the link I referred to Mike above), and do it very gently (never one single step being higher force, shear, or ROM than allowable – NOT ONE TIME).  If possible this includes many hours a day – a full time job.  But never ever keep going when you feel the pain increasing.  As part of this, I stretch (I even stop walking at times to stretch).  Either the 30 second break or the stretching seems to rejuvenate me.   I began walking short distances and added the distance of one telephone pole every other day.  I made the mistake of setting this as a goal, and occasionally kept going to meet the goal even when I felt just a little pain.  But when I got home, I discovered what was a little pain persisted for a week.  This, I always keep in mind even today.

2.   Don’t do anything that is bad (avoidance) – lifting, walking too fast, deep squats, etc.  e.g., If I am carrying heavy groceries up the stairway, I only climb stairs with my good leg straight, never bend it even though I could.  Otherwise I climb normally.

3.   ICE & Compression – I wore a compression sock for 6 months, and now I wear a cloth compression sleeve (from a sporting good store).   I also ice every chance I get, probably 20 hours a day.   Dr. Minas said I do not need the ice or compression when I had my 6 month visit.  I asked if the ice is harmful.  He said no, just unnecessary.  I disagree.  Dr. Minas said I must watch for pain and/or swelling.  Ice keeps down the pain and swelling.   If so, and it is not bad, why not do it.  (I would welcome some comments from others if the icing, in particular, might be harmful – since I do it so much – my skin remains red all the time).  I discovered ice during my 2005 microfracture, and continued it into and beyond ACI surgery.  I have two AirCast Cryocuffs with AutoChill from hat-trick-sports.com.  I also see them on ebay. Game Ready is a better system, but ten times as expensive.  I fill them with ice and even use them in bed.  When I do too much exercise, the heat of my knee melts two coolers of ice per night.   When I am doing the right amount, only one cooler melts per night.  After my 2005 microfracture, but prior to my ACI surgery, I would go out west (Moab, UT) for 25 days of consecutive all-day mountain bike trail riding.  At night, in my tent and sleeping bag, I rigged a wire to the car battery and had the Cryocuff going all night long – even when temperatures dropped to freezing.  The icing made possible those long rides with my deteriorated knee. I would be very interested if anyone else has similar experiences with icing.

4.   (Ok, I said three, but this might be important) – I watch my diet more than ever and pay attention to information in Udo Erasmus’s book “Fats that Heal, Fats that Kill”.

All,
This seems weird, but I am being challenged for not being good enough (from those unfamiliar with ACI).  It is a never ending problem.  I think this is because I walk normally as far as meets the eye.  Here are some examples.

At my gym there is a personal trainer who watches the area.  After finishing a 1-hour retro-walk at 15 degree slope (slow slow 2mph), she saw me getting off and asked if she could give me some advice.  Sure, why not.  She qualified herself as having a Master’s Degree in Kinesiology and having coached a men’s football team.  She said she tells all the players what she is telling me, ‘get rid of the knee brace, you don’t need it, it is a mental crutch.’  I tried to explain my surgery, but it fell on deaf ears.  She sees me walking normally.  Now here I am arguing with her.  Now she no longer speaks to me.  Oh well.

During my lengthy rehab period, I received much appreciated assistance from a very good friend (engineer co-worker) who is almost 20 years older than me (he is in his mid-70s), sedentary, but otherwise in good health.  He himself had gone through major procedures including prostate cancer and colon resectioning.    He is insistent that he remembers me as that tough guy who always climbs mountains, skydives ahead of the crowd etc – and now here I am babying my knee beyond all logic.  He insists that 2 months post-op (and especially one year!) one is as good as one will get.  I printed all the guidance, protocols etc to give him.  We are now into a time of the year (my friend and I usually only get together a few times a year) when he and I would normally go do outdoor things.  Before ACI surgery, I normally would hold back (so as to not push him), thus carrying a bulk of the weight (without making him feel weak).  Now he is beside himself, almost not speaking to me, because I don’t want to harm myself and, until recently avoided scheduling an outing.  He is a person who would not walk 5 miles unless his car broke down or he has some reason.  He knows I can walk normally for more than 5 miles now already, so he just cannot fathom what is going on in my brain to not want to drag logs over boulder fields, etc.  Sooooo, we have scheduled a two day outing this Thurs-Fri.  I am afraid.  What to do.  I should just say no. I have a plan to stop at the times that would harm me, but I know how tough it is for me to say no.   We will be in terrain I have not yet ventured.  We will be there before daylight and after dark.   I have succeeded so far by simply not putting myself into such positions except rarely (such as during a recent 4-day ocean kayak trip with my cousin – I came home hurting, but unharmed).

Yesterday I explored displacing rehab stuff with functional stuff, in this case walk less and then blow leaves in my yard.  I walked 4 miles in lieu of 6 (planned).  Then I simply carried a light weight leaf blower, standing stationary most of the time).  Last night my knee hurt all night.  I know I did no damage, but it is despairing to do so little and have it affect me so much.   Normally I would not think it appropriate or necessary to report such minutia, but perhaps it is necessary to show how I am struggling as well.  Nobody should get the impression I am breezing through this.

Again I ask, what can we expect when?  (disclaimer – everybody is different, surgeries different, yea, yea) i.e., in three years if all goes well, will we be at a high activity level.  Or will we conclude that after all this effort, pain and sweat, why risk it; then go on to live as if we had the restrictions of a replacement knee.  If the later, they why are we bothering?

If anyone lives nearby, we could meet and go for a short walk (limited by the least – nobody should push it).  I live near Chambersburg, PA, but would drive to Shenandoah National Park (not far from DC, Baltimore, Philadelphia).  I’ve been meaning to go there and walk the more or less level Appalachian Trail (just rolling hills mostly on top of the ridge).  I would stop if it feels bad and you should always do the same.  And yes, I always have ice in the car for my knee before and after.  I never leave home without it.

Regards,
Dennis
Title: Re: ACI - 1yr post op
Post by: Rennschnecke on October 17, 2010, 11:15:16 PM
Dennis

I think you are doing very well and I would love to be in your position.  I'm now approaching 16 months post-op but have had the common complication of arthrofibrosis.  I've spent the best part of 2 years on 1 or 2 crutches and the last year has been spent trying to control severe pain following scar tissue removal (MUA with scope).  I have been on continuous narcotics in the form of Duragesic patches since April this year.

Owing to the series of complications I've not got back to walking yet.  I've had yet another op (arthrolysis comprising anterior interval release and lateral release) and am once more back to the early stages of rehab.  This time my physio seems to be more on the ball and I've been doing reasonably well, but the prognosis is poor.  Complete pain relief is deemed unlikely and my OS is recommending a PFJR if my problems continue on to the 2 year mark.  The really stupid thing is my MACI seems to have taken so that the bone is all covered.  However, I've been unable to do much of the physio required to help it mature and proliferate so it seems a bit patchy.  It's unclear whether or not resumption of the physio programme later will enable me to catch up.  So, pretty unknown territory and I haven't found any other posting which covers a similar situation.

I think that AJ has highlighted how limited the information is that is available to us.  The longevity of the cartilage is unknown and techniques are developing all the time which makes the outcomes better.  Essentially, no-one can answer your question.  But if you want to read a bit more try to find the following article.
'Midterm to Long-Term Longitudinal Outcome of Autologous Chondrocyte Implantation in the Knee Joint : A Multilevel Analysis', Abhijit M. Bhosale, Jan Herman Kuiper, W. Eustace B. Johnson, Paul E. Harrison and James B. Richardson, Am J Sports Med 2009 37: 131S.

You are still at a very early stage of recovering from ACI.  I think you need to give yourself 3 to 4 years to see where you are and what you feel you can do.  Unfortunately, many people simply don't understand ACI.  They mostly think that the worst op you can have is an ACL replacement.  The idea that your op is like 10 times more complicated and needs the appropriate length of time to develop is a tricky thing for them to grasp.  It is a shame that your friends don't realise that and I appreciate it is isolating.

I was a professional ski coach, but I've been unable to work for nearly 2 years now.  Before I'd work and then hobble off the slopes to skulk in the bar rather than ski with friends afterwards.  I've seen hardly any of my friends since my troubles began – they're all busy with their active lives and as I live on a very steep hill, getting out is a challenge.  When the OS says I should reduce my expectations to just social skiing then I'm pretty sure he doesn't understand what social skiing is for me – most of my skiing pals are either ex-racers or coaches or instructors.  However, I decided to go for the MACI because my OS said it provided a chance that I might return to running and I know that if I can run I can ski.

But returning to your point – I believe that your cartilage will enable you to get back to impact work.  I believe that you will be able to get back to being active mostly in the way you'd like to be based on your current report now.  Have you read JulianUK's postings?  He has got to a higher level of activity than he was pre-op.  Granted he probably wasn't at your level, but the key point to note is that it took him nearly 4 years to achieve this.  Why go through ACI?  I think it is because it can allow you to return to a higher level of activity than a knee replacement.  I know someone who had a knee replacement then began to play soccer because his knee no longer hurt.  He needs a revision after 5 years instead of 10.  As someone in his 50s he faces a bleak future because the number of revisions is limited and by the time he is in his 70s he may not have the option of a prosthetic knee to maintain activity.  But technology is improving all the time.

I don't know what you can do about your friends.  It's somewhat insensitive behaviour on their part, and whilst it can be tempting to  :P to them, you probably don't want to do this.  I don't know whether you feel able to sit down with them and let them know that there is a lot of uncertainty about what you can do because you're part of the pioneering group for the procedure.  Let them know that you're still a tough guy because you've jumped into this op without knowing whether it will restore you to full activity or how long the benefits will last.  Try to let them know that it is highly demanding psychologically to restrict your activities for the medium to long term as the impact of activity can be delayed and despite looking normal on the outside, it isn't normal inside your knee.  That's why you always need to consider the loading on your knee and the shear forces at play and need to work up to some tasks in a controlled manner.

Sorry, I'm rambling now.  Didn't mean to go on for so long!

Take care!
Title: Re: ACI - 1yr post op
Post by: rbahr on October 18, 2010, 02:23:26 AM
Hi all,

I am sitting here with ice on my knee - Thanks for the guidence, Dennis - just spent the day pushing things - which I will likely regret tomorrow - but hopefully not a week from now...

Rennschnecke: I neglected to mention in my earlier post that one of my recent complications with my surgery was arthrofibrosis. I had fine extension, but limited flexion (85 degrees). I had 2 scopes to deal with this, the second restored me to ~125 degrees, which at this point is not as good as what I started with, but a lot better than 85 deg... Point is that there is always hope and a possibility that things will sort out.

Dennis: thanks again for the thoughtful dialogue - in fact I would like to thank everyone here...

Ray
Title: Re: ACI - 1yr post op
Post by: Rennschnecke on October 20, 2010, 12:54:22 AM
Hi Ray

Thanks for letting me know that you're keeping me company in the arthrofibrosis boat.  I do agree with you that there is always hope and a possibility that things will sort out, but sometimes there are so many obstacles in the way that working your way through/round them is difficult.

My story is a bit different from yours.  I had flexion problems at 8 weeks post-op and then had a release at 14 weeks, but I had further adhesion problems which led to infrapatellar contracture with patella baja and moderate to severe pain which lasted for months.  I had pretty good flexion (around 135 degrees), but a slight extension deficit and pain on walking.  It took nearly 12 months before my OS agreed to go back in to do the necessary releases as he'd been given that idea that I might have CRPS.  I'd seen 4 pain consultants who all agreed that I did not have CRPS and needed surgery.  So, I've had a lot frustration this past year.

Unfortunately, the delays may well mean that I am unlikely to have any further ops unless they involve a knee replacement.  At least, my OS states that at the 2 year post-op mark the only decision to be taken is whether I opt for a joint replacement.  I'm really bummed by this as it seems the grafts have taken so I don't understand why a knee replacement would be appropriate.

As my knee is still significantly swollen at 5 weeks post-op I'm worried about returning to the pre-op state again.  I've followed all the advice available on managing rehab post-AF surgery but the swelling is taking it's own sweet time to dissipate.  The latest clinic notes were not exactly new to me, but had some additional items that I've been processing, e.g. that I may never get complete pain relief and that a line will be drawn at the 2 year mark.  Trying to get my head around that at the moment.

Hope things are improving for you!

Title: Re: ACI - 1yr post op
Post by: rbahr on October 20, 2010, 01:34:13 AM
Hi Rennschnecke et al,

I absolutely do not want to derail Dennis' thread, but there is a point he has made a number of times that I completely agree with and I need to reiterate. The FIRST rule in successful rehab and/or early treatment is to know as much as your Doc - so read, study, talk, read some more, talk more... The SECOND rule is to be a loudmouth know-it-all with any of the medical profession who are 'helping' you.. Insist on those things that you know and don't back down - demand proof, demand action... If your Doc will not help - find another doc. The sad fact is that a LOT (not all) of these people know less than you, but will never show it. This is true to the point that they will mess you up, damage things and in general ruin all the good work your Doc did. The THIRD rule is find the medical people you trust and like and listen to them...

I will take the AF discussion off line...

Thanks

Ray
Title: Re: ACI - 1yr post op
Post by: mlashmar on October 28, 2010, 07:41:10 PM
Dennis - I pretty much read your post in two ways. 

The first was that, your ACI had gone well but you were lacking confidence in it (e.g. were unable to take the brace off).  I sympathise with that, it can almost feel like the MACI is a ticking time bomb, at some point it will fail and in the meantime, you are walking on broken glass.  I'm still not as progressed as you are, but I certainly can relate to a lot of what you say. 

A somewhat sobering point for me was when I increased my ROM and quad exercises at week 6, in line with the protocol.  All of a sudden my knee got very swollen and sore, I was convinced it had failed.  In reality I had been overly cautious, the reaction was normal (a breakdown of adhesions).  So, why am I bringing it up and what did I learn?  In that one week the feelings I had been having for a number of years intensified, at 33 years old most of the things I love to do were over (and things I hoped to do, such as carry a child I may have in the future), the fight I had against the insurance co was a waste and I was no longer a full man (does that make sense?).  Of course I was wrong, things were going OK, on track, although I had to be careful not to 'mother' my knee, I really needed to push on with my physio, albeit cautiously, and try to make the most of the chance I've been given be rebalancing my knee and my life, the former should not completely dominate the latter (the brace is now hidden away in a cupboard).  Of course, all of this is really easy to type, but much harder to put into practice (it's be a complete lie to say I don't struggle with it), but I wonder if you have the right support from your physio/OS to push you on a little more and, most importantly, help you to feel a little more confident about your knee?

I also read your post a second way, the pain and heat you still suffer with give you cause for concern, they reinforce your doubts.  I think Renn has made some very good points here, it may take you a bit longer to get to where you want to.  I'd be interested to hear what your OS is telling you in terms of progress against expectation and your symptoms at this stage compared to other successful patients.  Would an MRI give you the hard factual evidence to convince you that things were going well, were on track etc?  Beyond that, I guess it is doing as you have been, a little step at a time, but keep pushing yourself on a little bit at a time, frustratingly slow, but I hope that you can map out the dream trail sometime in the future.

In reality, I think it is probably a combination of the two above (but guess you will know in your own mind).  Keep plugging away and thanks for the advice above, I'll have a little look (my guess is that soccer got the worst of your friend above, it is a nightmare for knees!).

Renn - sad to hear of your plight.  I think just about everyone on here benefits from your positive input, definitely made me smile and perk me up over time.  Keep pushing on, take each day as it comes and I hope it all goes well for you at the two year mark, what ever the outcome at that point may be.  I'll be keeping my fingers crossed for you and will be sending my positive energies to you (if indeed that is possible - I'll try anyway).

Renn -
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on November 01, 2010, 01:32:02 AM
Mike,
Great comments. 

1.    How long will it last, how delicate will it be (ie, what can I do)?  What do I need to do to take care of it?  This is my main concern at this point.  In my surgery, there are two worrisome components, the ACI and the transplanted meniscus.  Going into surgery, I had thought the ACI would be the most limiting.  Now I believe it may be the meniscus.  My friend Ray, who posted above, sent me private mail with links showing that transplanted menisci continue to undergo a breakdown into a less stable chondrocyte matrix.  Some suggest an "activity risk management” program being important to long term success.  I also need to determine if there will be any restrictions due to ACI.  As AJ stated, “… outside of your meniscus issues, i don't see why you couldn't become fully active again.”  Time will tell.

2.   Physio/PT – I don’t trust them!!  And many people on this board have had knees ruined by them.  At 13 months post-op, I continue to do well.  Mark provided good feedback when he stated that he found it un-believable that I am doing this well (I had listed my many activities), especially at my age of 57 with the extent of my surgery.  So, being that I am doing unbelievably well, it is not a lack of confidence in my knee, but more an obsession with item 1, above, that is on my mind constantly (and I believe it should be).  I have concluded that the PT folks are unable to determine what to do or how much, so I pretty much feel on my own with generalize guidance from the OS.  If you look at some of the postings, many failures had been due to overly aggressive (or just plain dumb) PT.   Fortunately I am beyond needing help of a physio.  Besides, if I had listened to the physios (physical therapists here in the US) even in the hospital, they would have destroyed my knee.  I trust myself more than them. 

3.   What is my OS saying and what does the MRI show?  - My OS says I am “doing better than anyone.”  You are observant about my need for an MRI to sooth my mind (but I refer back to item 1 – the knee, academically speaking, seems like glass).  Dr. Minas said he knows I will not be satisfied unless he does another MRI at 2 years PO (he did one 6 months and 1 year), so he scheduled one.  Also I think he is curious as to why am I doing so well (which is just fine with me).  He said these MRIs now show it as indistinguishable from a native meniscus.  Although I had not known to ask him last month, I do plan to ask (in one year) if he can see the MRI intensity changes due to changing density of the deteriorating meniscus.  He answers questions if I pull him, but does not push data to me.  He said I will be able to backpack, but not run or skydive.   But …. I learned that transplanted menisci last only 4-7 years!!!  WHAT ABOUT THIS???!!!  So, I am back to item 1.  I need to develop an "activity risk management” program while looking into mitigation research for this meniscus degeneration process (Fortunately for you, this does not apply to the ACI).

4.   NOT A FULL MAN! – I know what you mean. We all have things in life we feel define us.  I now call myself the 5% man.  What do I mean?  If I logged my time spent doing what I love, I am down to 5% (pretty much only short hiking – immediately pre-op and PO).  My main activity had been distance running (30-50 miles per week) – but now cannot do – will never do.  I used to skydive all summer – no longer do – will never do.  I used to backpack a month a year – no longer do – but supposedly may someday (yeah!) – until the meniscus deteriorates (sad!).   My friends all go out and run together almost every day (I never run with them now and never will).  I used to bike most of the year and used to go out west for a month of all day mountain bike riding – but no longer – should get some of this back – until the meniscus fails – and probably not allowable at the intensity of my friends or that my body would otherwise allow.  Frustrating!

Renn,

Hang in there.  Hopefully the ROM will improve and pain will decrease.  Are you icing?   You are not long after the last surgery.  Please don’t think I am pushing, but why are you averse to a knee replacement?   As a parallel course to my healing and working with the gift my OS has given, I am researching replacement knees.  Why?  Because if (or when) my knee fails, I do not want to be pushed into the wrong hardware.  I want to have things lined up ahead of time.  It is your life and you need to insist on the care and outcome you require.

When is your 2-year mark PO for the ACI?

From my limited research, I see there are projected 30-year knees, some more for some 'limited' athletic use, and more importantly, knees designed for maintainability where they do not need to chisel metal from bone and start over again, but simply go in and replace the worn parts (presumably the spacer that replaces the meniscus).  Walking is the next day, full healing is 6-weeks or so with 6 months to the final outcome.  If I were to talk to an OS (different from the ACI ones), I would stress that I plan to run, backpack and skydive.  I know they do not want to certify these activities, but I am reading of people who are doing it.  As I said, this is very early research on my part, but knowing what I know now that I will rehab for 3 years and then wear out the meniscus in another 4, I may have chosen differently.   We ACI people are hell-bent on living life to the fullest and avoiding TKR as if these are mutually independent.  Now I am no longer sure about all this. I would be interested in your thoughts.

Mostly, I want to see the time when you are healed, running and skiing again!  No fun watching friends go outside while we sit inside.  But at least we have each other.  I do appreciate the company even as I do not wish the knee afflictions on anyone.


Ray,

Thanks for all the leads, and thanks for summarizing the rules of engagement with the medical establishment above!   I think Mike used these rules when he fought (successfully as his own advocate) for 8 months for his ACI when everyone wanted to push TKR.   You can never relax.

All,

If you have any research leads to anything related, post them please.

Regards,
Dennis
Knees define us!
Title: Re: ACI - 1yr post op
Post by: Rennschnecke on November 01, 2010, 09:50:11 AM
Hi Dennis

Try looking at this article if you haven't already done so.
'Importance of Sports in Cartilage Regeneration After Autologous Chondrocyte Implantation: A Prospective Study With a 3-Year Follow-up', Peter Cornelius Kreuz, Matthias Steinwachs, Christoph Erggelet, Andreas Lahm, Stefanie Krause, Christian Ossendorf, Dirk Meier, Nadir Ghanem and Markus Uhl
Am. J. Sports Med. 2007, 35, 1261.

I know that a knee replacement is not the end of all activity, but I suffer from arthrofibrosis and a knee replacement can lead to arthrofibrosis.  As my problems are due to AF, a knee replacement may not lead to any resolution of the problems.  I believe that I need to find a way to conquer AF first before considering a knee replacement of any sort. 

In short, I don't believe a TKR/PKR would be the solution.  Articular cartilage cover is complete (i.e. clinically good outcome), but patient functionality outcome poor owing to the complications.

My two years for ACI is up in June 2011, but I also know it can take around 2 to 3 years to recover from AF surgery even if all goes well (NB large variability in timescales and outcomes) – so that means September 2013. Uggh!

I keep plodding on and need to undertake intensive PT until the tissues stabilise (maybe in another 6 to 8 weeks).  Still hoping to walk by 2011.  8)

It sounds to me that you are doing well physically and coping well overall, Dennis.  Other postings indicate that you are still at an early stage in recovery and there will come a time when you will be able to forget your knee for day to day activities.

 :)
Title: Re: ACI - 1yr post op
Post by: skifanatic on November 03, 2010, 04:54:35 PM
Hey Dennis - I'm on my way for ACI Phase II on Monday.  I'm impressed with your recovery (given the extent of your damage) and your regimen .  Question - When did you resume outdoor (street) biking??  I see at six months you reported that you had not.

FWIW - I have every intent on eventually resuming full activity with one exception...running.  Several years of overdoing it on the treadmill and on the street is likely what caused my defect.  Quit running back in May and I don't look back.  I was able to psychologically replace running by becoming a cycling junkie.  It has filled the gap quite nicely.
Title: Re: ACI - 1yr post op
Post by: Melissa S on November 03, 2010, 07:55:22 PM
Hey Skifanatic.  Looks like we are going under the knife the same day.  I am also have phase II on this Monday the 8th.  Good luck to you.  Are you in the States or UK?

Melissa
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on November 04, 2010, 12:14:02 AM
Quote
Try looking at this article if you haven't already done so.
'Importance of Sports in Cartilage Regeneration After Autologous Chondrocyte Implantation: A Prospective Study With a 3-Year Follow-up', Peter Cornelius Kreuz, Matthias Steinwachs, Christoph Erggelet, Andreas Lahm, Stefanie Krause, Christian Ossendorf, Dirk Meier, Nadir Ghanem and Markus Uhl
Am. J. Sports Med. 2007, 35, 1261.

Renn,
Thanks very much.  This is a very inspiring article.  Loved what they said.  Send more!

Hello Skifanatic,
Well, I hate to say but I still have not gone outside biking except once.  You would think biking would be easier than most else.  Here is my lame excuse.  I tried it after being approved at 6 months, but the one short  (SHORT!!!) 7  mile only slightly hilly (not possible to avoid from my house) made my knee hurt a bit and swell - minor.  I kept the cadence right and very low gears (low speed).  I decided to not push it by riding since I can walk.

So, I now keep riding the boring indoor trainer – more controlled.  I was also afraid of some minor accident being more major due to the sensitivity of the knee.  At this point I am certain I could go outside and will take your message as a stimulus to do so and report back.  Check in a couple weeks.

On the indoor trainer I am riding about an hour to 1.5 hours at a relatively minor effort, but should be enough to ride outdoors slowly.  I have no negative effects from this.   My mindset has been rehab, and rehab only without risk. 
I am hoping to get back to all day rides again in a few years.  Check dsj60 bike rides at 3.5 years PO log here:

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=36406.75

I wish the best to you and Melissa.  But I am glad to say I have the surgery behind me.

Dennis
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on November 04, 2010, 04:34:44 PM
Melissa and skifanatic,

Thinking about your upcoming surgeries Monday, I would recommend, if you have not already done so, to nail down what to expect post op immediately and in the few weeks following.  You probably did this, but it never hurts to be certain. 

For your procedure exactly, what will they expect to do during recovery and rehab in the first days and weeks.  In my case, this is where they had been lacking – but it all turned out well.  You should try to be as knowledgeable as you can in order to be your own advocate.  There are going to be ‘don’t do’ as well as ‘must do’ things.  It is better to know beforehand than to be surprised.  In my case they had pre-op literature that I received 2 weeks post op – not much use except in hindsight.

Keep thinking of all the great activities you will get to do once you new knees are fully healed!  Keep us posted on your progress.

Dennis
Title: Re: ACI - 1yr post op
Post by: skifanatic on November 04, 2010, 05:17:09 PM
Thanks for the info Dennis and good luck with that street riding!  Hopefully you find it more pleasurable now.  Certainly, after the phase 1 scope biopsy and spruce-up, I was suprisingly disabled for about a week and then rushed down to my local rail-trail and made excellent progress without those hills.

Hey Melissa - I'm here in the states. Best of luck to you on Monday!  I look forward to hearing about your progress.

At this point, I've received a high level recovery overview in the mail from the folks at Genzyme.  There is a poster of sort that provides the details of four recovery phases.  Each phase is described in weeks until the last phase which is described in months.  Accompanying the poster is a nice book for documenting personal progress and goals.  I will definitely use this.

So, weeks 0-6 appear to have a very high suckage factor as this phase is titled "Protection" and it includes a lot of pain management with 8-12 hours per day in the CPM.  It does mention introducing stationary biking during this phase as ROM permits.  Unfortunately, my stationary bike is recumbant.  Is this an issue?  I guess I'll find out soon enough, eh?


Title: Re: ACI - 1yr post op
Post by: Rennschnecke on November 05, 2010, 01:49:11 AM
Recumbent bikes are usually easier than uprights to turnover, but you need at least 100 degrees of flexion to do this comfortably.  When your OS clears you for the bike you can develop ROM by just rocking to and fro, but you need to also protect from being overly aggressive and pushing through adhesions too hard.

Main thing will be to reduce swelling pain and maintain and develop as much mobility as possible without aggravating the other symptoms.

Good luck with the whole journey.  There's plenty of hints here on how to ride through the boring patches.  ;D
Title: Re: ACI - 1yr post op
Post by: Melissa S on November 05, 2010, 04:26:09 PM
Melissa and skifanatic,

Thinking about your upcoming surgeries Monday, I would recommend, if you have not already done so, to nail down what to expect post op immediately and in the few weeks following.  You probably did this, but it never hurts to be certain. 

For your procedure exactly, what will they expect to do during recovery and rehab in the first days and weeks.  In my case, this is where they had been lacking – but it all turned out well.  You should try to be as knowledgeable as you can in order to be your own advocate.  There are going to be ‘don’t do’ as well as ‘must do’ things.  It is better to know beforehand than to be surprised.  In my case they had pre-op literature that I received 2 weeks post op – not much use except in hindsight.

Keep thinking of all the great activities you will get to do once you new knees are fully healed!  Keep us posted on your progress.

Dennis


Dennis:
Thanks for you suggestions.  I met with my doctor and therapist yesterday and went through all the questions I have had and I think I am mentally and physically ready to do this.  I would be lying if I said I wasn't still anxious but I am going into this with a positive mindset that it will work and my knee will stop holding me back with day to day activities.

Skifanatic:
Where do you live and who is doing your surgery?  It is funny there are a bunch of people on here that are having their surgeries within 2-3 weeks of each other.

Melissa
Title: Re: ACI - 1yr post op
Post by: skifanatic on November 13, 2010, 12:18:55 AM
Thanks again for all the great advice folks.  I ended up staying at the Faulkner hospital a couple days and currently at home jamming on the CPM machine.  The pharmacy (CVS), being the intelligent folks they are, provided all my scripts except the pain killers.  Nice!  Apparently, they are handled separately and when one arrives seeking their painkillers, one must be explicit...however, one finds that this isn't documented anywhere and one is quite unimpressed with the whole deal.

I have my eyes feasted on that recumbent bike but I suspect it'll be several weeks before i can deal with it. 

Dennis...did you make it out for a ride yet?
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on November 14, 2010, 01:28:24 AM
Skifanatic,

Read all your post-op posts.  Sounds like you are doing well.  Who at Faulkner was your OS, Dr. Gomoll?  Dr. Minas did mine at BWH 75 Francis Street, Boston.

I can relate to the SNAFU on your pain meds.  Prior to surgery, knowing that due to the extent of my surgery I would not be picking up the meds myself, I prearranged with a local pharmacy in Pennsylvania.  Noooo problem, just bring in the script for pain meds.  Even oxycodone? No problem!  Even if I get surgery in Boston?  Yup, nooo problem.  My friend drove for the script, called me, they won’t honor it because Boston is not in a contiguous state.  Eaaagggghhh (perhaps they moved Massachusetts since I spoke to them)!!  I had to have my local doctor re-write the script.  The lesson is that no matter how much one plans, things always get messed up.

BIKING!! – Here is my excuse.  I have decided to not go outside yet.  Here is my thinking.  Days are getting cold anyway and I am doing so very well, I hate to mess up somehow.  Although it appeals to me to bike outdoor, even to push it, I think it is best to have a continuous program of injury free rehab for 2 years – given the large extent of my surgery, perhaps for all ACI surgeries?  I am walking (outdoors) about 5 miles 3x/week, 7 miles 1x/week, treadmill retro walking 1 hour 3x/week @ max incline (2mph), swimming 1 hour 3x/week (same days of the treadmill), and doing a bunch of passive knee stuff.  I am increasing the bike trainer to 1.5 hours with increased resistance about 2-4 times per week.  If it weren’t for the joy of increasing my use of the knee, the trainer would be way too boring.

When I had torn my ACL and then had the menisectomy in 1990, I was told to not run for 6 weeks.  When I was allowed to run, the very first run, the OS did not say how far to run and I did not ask.  So I ran 7 miles, and continued this daily for a week - and my knee got quite sore.  Thinking of that, I look at this surgery as my last chance and don’t want to mess it up.  With the ACI, one goof up, and poof, it is all gone.

Here is something to think about, my NEW attitude: It is not how fast you can get back to the fun stuff, but rather how robustly you can do so even if this requires more time spent in recovery.

Let us know how you do with the recumbent.  The osteotomy changes the ACI protocol, no?

Melissa,

Read your posts as well, including the wild bike ride that began the odyssey. 

You went home the same day?  Wow!

I envy your Ice Man.  I want one.   If you read my posts, you see I am a believer of icing – mitigates pain and swelling – and better, allows increased activity.  I kept asking if I might be harming the ACI growth, but was repeatedly told not.  In fact, I had been lucky enough to not be in much pain.  What little pain I had was better managed with ice than meds, especially after I got home.  I only got two bottles of oxycodone, and have never touched the second, but got it just in case.  It is now almost 14 months PO, and I still continuously do icing.  Call me a wimp, but it works for me.  When I do too much, the icing brings the swelling down quickly. 

They told me there would be 12 months of swelling, but from what others seem to advise and my own experiences, I still have swelling if I stand all day or do anything mildly intense or lengthy (like a 7 mile hike).

Nausea  - I learned that I get extremely nauseated under anesthesia.  When I advised them this prior to surgery, they said they would adjust the chemicals to avoid this.  It worked.  I also cannot stand to throw up and will go to great lengths to avoid it.  Fortunately I did not have to worry.

More on my philosophy of pain meds, I did not want to blunt sensations during rehab that might be warnings of danger.  I do know that many people are not so fortunate and do need the pain meds.  I just read too many instances of screw ups during rehab.

During the past few weeks I did some outdoor hiking in the dark on rocky mountainous terrain (no more than a mile in a day) – a fall sport things which I usually do for many miles, many hours.  At one point I was afraid I may have ruined something because my knee really hurt – and it had not been hurting.  I had not noticed any one thing that caused this, but the pain persisted and the knee swelled, and I worried.  Things are back to normal now, but I attribute the issue to 1)  not icing 2) walking on uneven lose rock 3) not doing the normal higher level of controlled exercises listed above.  Just thought this was worth noting.

I sure hope I can return to the backpacking and endurance walking.  I know I will not be allowed to run.

Dennis
Title: Re: ACI - 1yr post op
Post by: Melissa S on November 14, 2010, 01:58:50 AM
Dennis
Yes I don't know what I would do without this Ice Man.  I also was worried that the cold might affect cell growth but they have said no.  I have not been able to eat much without feeling sick and getting killer heartburn.  Not sure if it is from the anesthesia still or the pain meds.  I have spaced out the pain meds but I obviously can't go without them.  So it is kind of a catch 22.  I have also been getting some low grade fevers in the evening which doesn't help.  hoping once I get past this first week things will settle down. 
PT has me doing SLR's with help and said she was impressed by how much I was doing on my own.  However, they are pretty painful.  I have just been pushing through the pain but want to make sure that I am not doing something that may hurt my graft.  It is so hard, and I know that is what you are battling with.  It is protect the graft at all costs, right?
Thanks for all your advice.

Melissa
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on November 14, 2010, 02:10:02 AM
Melissa,

Considering the sickness, are you taking anything like a PPI such as Prilosec?  Oxycodone causes sickness and constipation (if I am right - and it was this way for me).  In addition to Prilosec, then had me on a stool softner.  I normally have no such issues and have had non once I stopped the pain meds.

I know you will do well.  Just keep at it and be careful.  I'll watch your progress.

Dennis
Title: Re: ACI - 1yr post op
Post by: cdubb on November 14, 2010, 02:15:38 AM
Dennis,
I like reading your postings to see how well you are doing!   It is very encouraging being a fresh ACI patient myself.  I am 5 days ahead of Melissa with a patella ACI as well.  Mine was Nov. 3rd.  I also had the AMZ in addition to it though and even I was discharged same day...actually less than 90 minutes post procedure.  My surgery didn't even start until 2:30 or 3:00 pm ish and I was out the door at 6:24 pm.  I just checked my FB posting while I was sitting in the wheelchair waiting for the valet to get our car to confirm the time.  I recall waking up in recovery about 5:30 pm.  I didn't even have a femoral block or anything.  Knowing it was outpatient did somewhat have me apprehensive ahead of time knowing that other big ACI docs Minas and Gomoll (who I see did yours) keep for 1 or 2 days.  Cole did mine and he does all his outpatient, so I figured if there were recurrent problems, he probably wouldn't continue doing so.   I actually fared just fine and don't see any benefit that I would have had being inpatient.  

I also 2nd the lots of icing comments!!  I credit my lack of swelling to the Gameready! Even though I'm paying $25/day for it, I can't yet bear to give it up....I have lots of bruising from the AMZ...but to be expected when bone is being cut I guess.

Title: Re: ACI - 1yr post op
Post by: Rennschnecke on November 14, 2010, 02:29:15 AM
Hi Melissa

I'm a bit concerned that you are pushing through pain to do the SLRs.  The pain response can lead to your body just producing more heat and swelling and irritating your knee more than necessary can increase the risk of forming adhesions that can interfere with function.  Sorry, I'm a bit of a fusspot on this point as I've been struggling with adhesions for over a year now.

If you can do ankle pumps and quad sets that's good.  Mobilising the patella is also good but check that your OS is happy with the last activity.

As you clearly need your meds just to keep the pain under control at rest wait a bit until it eases and then have a go at the SLRs again then.  The main thing for now is control pain, heat and swelling and maintain basic mobility.

Everyone wants to protect their ACI graft – after all it's the 'last chance', and the length of rehab is hideous.  Being reborn more than once is just too much!!!
Title: Re: ACI - 1yr post op
Post by: Melissa S on November 14, 2010, 04:46:55 AM
Thank you Dennis and Renn,
You don't know how valuable it is to us Newbies to be able do draw on your experiences.  I think i am going to take it easy on the SLR's and use the e-stem unit more to get my quad going. 
I have been taking some Zantac and stool softeners.  The Zantac seems to work pretty good, the latter not too good yet.  Tomorrow my Mom is going to come over and watch some football with me so maybe I will feel like one of the living for a while.
Title: Re: ACI - 1yr post op
Post by: skifanatic on November 14, 2010, 05:15:44 PM
Quote
Sounds like you are doing well.  Who at Faulkner was your OS, Dr. Gomoll?  Dr. Minas did mine at BWH 75 Francis Street, Boston.

Dennis -

Dr. Gomoll was my surgeon.  When I initially contacted the Cartilage Center, they were quoting me March 2011 before I could get an appt to see Dr Minas.  I could literally feel things getting worse in my knee and knew I had a potential time bomb on my hands.  Dr. Gomoll was able to first see me in June 2010.  I researched around a bit and found he has a good track record with these lesions and felt confident with him.

I can understand your holding off on biking.  Although, it's quite interesting that you can endure some rough night hiking!  Are you a die-hard hiker?  For me, that's the end-all, be-all.  To be able to hike again would be sweet success.  In fact, the incident that threw me over the edge was a long day of post-holing (with snowshoes) in deep snow on Mt Washington in May.  I got home and experienced serious pain and swelling.  It was the first time my body alerted me there was a serious problem.

I red lined Mt Wachusett in central Massachusetts last Sunday (the day before my surgery).  Summited three times with no pain or swelling.  One of the resident surgeons commented that she couldn't believe I was off hiking the day before the surgery.  Apparently my defect is quite substantial.
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on November 15, 2010, 02:07:11 AM
Hi cdubb,

Glad you are following my progress.  My biggest fear even at this time is what if after 2-years of rehab stuff I go and make it fail somehow.   I also worry about what limitations I may have and how I will deal with that.  But for now, I think it best to plug away faithfully taking care of the knee.  Besides, all the outdoor walking stuff is pleasurable even if it is very controlled unlike what I am used to doing.

Renn, Melissa,

Renn is right, be careful not to overdo it.  I think Renn made a good catch.  I myself began slowly.  In fact, no one told me to do any weight bearing, and at 7 weeks I was still on the CPM.  That is when the Genzyme (USBIOSERVICES) rep, Josh, told me this is not good.  I thought that was what had been required.  After my confusion settled, I worked into weight bearing and finally up to where I am today. 

skifanatic, and all,

I understand what you mean about activity being all important.  If you get surgical pictures, I encourage you to post them.  Check out my pictures above in this post.  The first picture shows the large defects before the grinding and cutting.   People also could not believe my high output right up to surgery.  But hey, if we don’t do this, (as Gail Sheehy says in her book) “if you don't actively pursue your definition of a meaningful existence, life soon becomes a series of trivial maintenance tasks.”
 
Running distances was my main thing, followed by skydiving, then backpacking, etc.  I have never been roped, but I have backpacked around here (PA) up through New England, down to Shenandoah and the Smokies, as well as Yosemite (I used to live nearby!), Wind Rivers, Grand Canyon, Havasupi, Alaska, etc.  I prefer winter, and frequently used snowshoes.   In 2002 after a Hoh Rain Forest (Olympics) backpack I ran up to the base camp on Mt. Rainier (icing my knee in the snowbank on returning to Langemier).  In the last ten years, I would backpack and then ice my knee standing in glacial runoff before retiring to the tent.   The last couple years, I biked more –  a couple weeks near Mt. Washington area, Plymouth, NH, as well as 2 months in Moab, UT.  I am interested in your mountain stories if you have time.  Keeping thoughts such as these are what keeps me going.  Must make more memories.

I had met Dr. Gomoll during my fight with Blue Cross.  When Dr. Minas told me he did not trust Blue Cross I set up an apt with Dr. Gomoll to try to get him to do my knee.  He agreed with Dr. Minas on exactly what needed to be done, but pleaded with me, saying I put him in an uncomfortable position with Dr. Minas being his boss.  He met with Dr. Minas to encourage Minas to push Blue Cross.  I would have been equally satisfied with Dr. Gomoll as his reputation is superb.  Check out their research papers on the Cart Repair Center pub links.

Another big fear I have is something I am learning - that meniscus transplants (I had this as well) degrade and fail eventually.  Very sad thought!   I want to believe I can be the outlier.  I want this to last a lifetime of high activity (hike in the mountains at 90).  Renn sent a good link to a study showing the ACI part heals better with sports.  I would like to think this also applies somehow to the meniscus, but I know this is not the case. 

Dennis
Title: Re: ACI - 1yr post op
Post by: cdubb on November 15, 2010, 06:49:22 AM
Dennis,
Your knee is definitely more complex than my knee was due to the meniscal transplant. I am very lucky in that all 4 of my meniscii (not sure if the plural is correct) are pristine, as are the lateral and medial compartments.  That being said, I have substantial, painful patella lesions in both knees (although, hopefully no longer in the left if this ACI patch holds)...hence the AMZ also being done with my left knee.

My surgeon actually trained Dr. Gomoll.  I don't know to the exact extent or for how long, but in discussion about various patella ACI docs with my docs PA, I mentioned his name and she said that Dr. Cole actually trained him.  I've since seen his name on some research publications with Dr. Cole saw that he was at Rush.

And is Josh the only US bioservices rep? He was mine also. 

Also, what do you mean when you say that Dr. Minas did not trust Blue Cross?
Title: Re: ACI - 1yr post op
Post by: cdubb on November 15, 2010, 07:02:05 AM
Okay, I just went back again and looked at your surgery pics (very cool by the way-I have some too) and your first posting on this thread...your surgery was like 10x's more involved than mine!  I cannot believe the amount of surface that that they put ACI patches on...and then the meniscal transplant and the AMZ to boot!  Sheesh...makes my 20mm x 20 mm patellar lesion with AMZ look like a walk in the park!  Although...gives me even more hope that I'll fare quite well following my rehabilitation since you're doing so well with so much more work done! Sure hope my right holds out a while, so I don't have to do this again anytime soon...although defect sizes are about the same...
Title: Re: ACI - 1yr post op
Post by: slyguy1 on November 19, 2010, 02:11:09 PM
Hi to all,

             It's been awhile since i've had the chance to check out some posts here and just read some of dennis's and Renn's posts. I definitely agree that Dennis has the complications going against him---particularly the meniscus which alot of us out there don't realize how important it is to maintain the stability of the knee not to mention other factors. I had read a summary of Dr. Minas article on ACI failure rate among patients that already had microfracture awhile back and it was not a concern for a lot of people out there. I was concerned and still worried b/c i too have most of my meniscus taken away during my microfraction surgery---unlike people that never had any other procedure my ACI would have a failure rate of 3 times the norm. I think it's great that Dennis has taken his rehab into his own hands and at it full-time. Many out there have full-time jobs standing most of the time which really stresses that knee joint. My OS had mentioned that even walking puts a lot of stress on the joint. So i've been biking it fanatically and to my surprise it can be a good cardio workout if done the right way. As far as icing---i think during the initial stages it is very good but after a year post-op i personally don't think it is a good idea b/c it worsens the degree of arthritis. It may numb the pain in the nerves surrounding the knee but i do believe it affects the bone---especially if it is compromised with the cutting in surgery. Many of us don't realize that it is time that is needed most in healing---yes very frustrating when you used to put your running shoes on and crank out 5 miles. Everyone heals differently also---yes genes play a factor in healing.

        Renn.......i had no idea you were a ski instructer. I hope you can get off that duragesic and be able to do some strengthening exercises. I am with Dennis on PT---i don't trust them --i had better results with the exercises i found right on these posts and b/c of that i am able to ride the bike for 45 minutes now---never a replacement to my running days but i'll take anything that will help ADL.
Title: Re: ACI - 1yr post op
Post by: Rennschnecke on November 19, 2010, 03:46:41 PM
I think I read somewhere that there have been only around 40,000 ACI ops of various generations performed worldwide.  Given the wide variations in size and location of defects along with health history and activity levels, it would be difficult at this point in time to get reliable statistics for outcome on our procedures.  This is simply because there haven't been enough variations yet.

However, many of the variables are not analysed when assessing successful outcomes.  The key variable that is unknown is how patient satisfaction was assessed.  From postings on this forum, it can be seen that people have a wide variety of parameters for making their own judgements, and sometimes these will change over the duration of recovery.

I think the hardest part of this procedure is the length of time to recovery as fully as we might.  On a day to day basis it seems interminable.  I was interested to read recently how people who are detained indefinitely deteriorate mentally and suffer greatly from depression.  It appears it is not being detained that is the problem but the indefinite nature of it. 

This rehab process can seem indefinite when progress is not easily tangible and we are not free to do as we wish to affect it.  To some extent we may experience a loss of control and feel quite helpless.  I know that this is something I was less prepared for than the hard physical work involved.  Moreover, commitment to a rehab programme can change your lifestyle so much that you no longer feel like you are the same person, especially as it gives you less time for your usual social group.  All these factors can be a considerable source of stress and this forum is one of the places where you no longer feel so alone.

Nevertheless, I am a creature who prefers face-to-face interaction and this has gone to near zero as I put efforts into my rehab.  When I do meet up with friends I end up fretting for missing out on my rehab! ???  My own circumstances are somewhat different from conventional 9 to 5 work, and I sometimes thing it would be good for my mental health to be forced to go out – despite the physical discomfort.  It gives me time away from the knee thing.

Yes, Slyguy – was a ski instructor, and still hoping to return to a position with the sport governing body.  For the time being, I'm hoping my place at University will be reviewed favorably again and I'll be allowed to continue my work from January.

I am progressing better than after my last op, but walking with just one crutch over the last two days has just rebounded so I'm resting today – minimum activity.  I'll be happy to get on the bike.  I could probably do quite a bit on the bike if that were all I needed to do, but full weightbearing when walking is different.  Bike work puts less force through the joint that walking does, but it'll be a good way for doing cardio.  I still haven't worked out a satisfactory way for increasing my walking without overstressing the joint.  Will put my creative juices to trying to work out something once the pain, heat and swelling have dies down again.

Re. PT – I think the benefits depend on who you can get to work with.  For something like ACI, you really need someone in the top percentile who also has extensive experience of working with ACI patients.  Unfortunately, the one or two people I am aware of are not local and are focused on research.  I know of one other great PT who is only accessible once a month because of his contract with the sports bodies (and that was hard won), so not much use for continuing care.  I don't know how it is in the US but in the UK, I find that the really good PTs are rare and very difficult to find and get time with.  At least on this forum there are lots of sensible and knowledgeable people who are bright enough to suss out what works for them.  Their shared expertise is invaluable to support a good recovery.

PS Don't miss running; was never much of a runner and triathlon is something akin to purgatory for me.  ;D
Title: Re: ACI - 1yr post op
Post by: cdubb on November 19, 2010, 06:41:28 PM
Renn,
Running is not one of my goals either...hate running...always have!  Probably because it has always hurt to some degree, even back to high school.  I'm just looking to be able to get through my daily activities, which involve parenting a 4 year old, active little boy, pain free.  I'd like to be able to go to the zoo or museums walking for the day pain free and not worry about my knee swelling up on me and causing me grief during and after.  If I can get back to some light recreational tennis (just hitting a ball around with my husband)- that would be icing on the cake! 
Title: Re: ACI - 1yr post op
Post by: Rennschnecke on November 19, 2010, 06:54:53 PM
Hi cdubb,

Given where you are and how easy your recovery has been so far then given time I'm confident you'll get back to doing what you'd like.

I have an 11 year old and feel like I've really missed out on 5 years of activity with him.  I really hope you feel you can enjoy your time with your little boy as you'd like.  I'm also sure you'll value that time with him all the more after this experience.

For now it's patience (bet you hate that phrase by now!)
Title: Re: ACI & Meniscus implant - info re. meniscus implants
Post by: Rennschnecke on March 06, 2011, 01:31:17 AM
Hi Dennis

Just read this article which you may have read already, but if not, may be of interest to indicate which types of activities might be more stressful on your reconstructed knee.
http://www.orthosupersite.com/view.aspx?rID=65575

Currently working thro my backlog of article and also reading up on knee replacements.

Doubt that PKR/TKR would be suitable for me just now.  I have almost full ROM and so most movements, but still need to avoid stress and high forces.  Slowly getting stronger, but still overstepped the mark on Wednesday so paying for it just now. :'(

Ray is right, there's always hope until some experts confirm you're at the end of the line.  However, there are many OSs out there who are keen to develop biological solutions to knee problems so the options are developing all the time.

Hope you're growing in confidence about your own situation Dennis!
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on June 08, 2011, 03:13:33 AM
Hello all.  It is now 20 months post-op.  I thought it might be good to report that I am still doing well.  I’ve been walking in mountains with a light (15 pound) pack and am now mountain biking outdoors a couple hours per ride, a couple days a week, in addition to the other things I had been doing, which I listed earlier in this thread. 

My main worries remain that this procedure will leave me so vulnerable that it will fail as soon as I attempt to do most things I would normally do.  When I go back to Dr. Minas this September for the 2 year follow up, I intend to ask about this.  I don't really expect clear answers because I don't think anyone knows.   On the positive side, I am able to do a lot more now than immediately before surgery, albeit things done very gently for fear of causing failure.

Until that visit with Dr. Minas, I will gently continue to increase my intensity and duration while refraining from what I believe might be catastrophic (jumping, heavy lifting, twisting with weight, etc).

I wish the best to everyone with knee problems.  Bad knees sure can wreck life plans.

Dennis
Title: Re: ACI - 1yr post op
Post by: cliffoa on June 10, 2011, 11:42:50 AM
Hi Dennis,
Hang on in there dude. I think most of us on here know how a bad knee can turn life upside down. I'm 8 months out from my own meniscal transplant, and have similar concerns. I cycle most days for an hour or two, and can walk up to a couple of miles, but I still get redness, heat and inflammation every day, and the knee feels nowhere near strong or stable enough to do all those things you mention (jumping, running, heavy lifting, twisting etc). Any sudden or heavy movement, the knee lets you know about  it. Even simple everyday tasks like standing on your bad leg to put on your trousers (pants), you have to think twice. It's a real drag, but what can you do. On bad days you think, why me, and you just want to be normal. But then you just get on with it, or you'd go crazy. I'm not as far into rehab as you, but even now I don't feel the cartilage transplant is gonna make that much difference.  Like you I'm hanging on to my own biological knee for as long as I can, in the hope that new and better procedures are just around the corner, or when the day finally comes when I need to have a PKR or TKR, they're next generation and allow you do to most things you want in life. 

Just that some days, the dark days, nursing your knee through every minute of your life, every activity, every movement, constantly icing and taking anti-inflammatories, you think, jesus, wouldn't it just be better to chop the damn thing off and get a replacement put on?  I guess when that day arrives, I'll know I'vve got to the end of the road and get a replacement.  I'm hoping to get another 5 to 10 years out of my knee before I get to that point, I just hope those years aren't as crappy and debilitating as they are right now. Otherwise, that's 10 years of your life you can't get back, and maybe a PKR/TKR earlier would have been the better option. It's all about quality of life I guess. But the situation we're in, we have to put our faith in the surgeons, and hope that these transplants will finally settle down and give us back some quality time.  I share your frustration bro.  Good luck with your continued rehab, I wish you well.  Sorry for rambling, I'm at work and just wanted to bang this out quick on my computer, then get back to work.
Best.
Archie
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on June 12, 2011, 09:29:35 PM
Archie et al,

I appreciate your comments.  They are right on the mark.   Don’t apologize for rambling, your post reads fine. Besides, I happen to be a rambling kind of guy.  Just look at my ramblings.

I read your other posts concerning your procedure.  Hang in there, it does get better.  If I am right, you need to pay particular attention to two things during rehab, 1) don’t overstress your knee even one step (avoid instant failure) and 2) certainly do stress the tissue gently and for prolonged times, as long as it feels correct, so as to teach the tissue its intended role.

An important timeline to keep in mind is posted in Karen Hambly’s excellent course on ACI rehab posted here:

http://www.kneeguru.co.uk/KNEEnotes/node/740

I believe this applies to you also (you did not have ACI, right?  What about the damage you mention?).  Note the notional very long tissue adaptation times for cartilage repair.  I can attest that my rate of improvement appears to be following the right-most curve on the graph.  This makes me feel good in that there is still very much cause for me to expect continued improvement (being at a point 80 weeks, 60%) from a medical standpoint.  Every month that goes by, I realize how much better I am than I had been a month previous.  The rate of improvement is not great, but it is also not showing any signs of slowing down (this makes me very happy). 

What concerns me is not- knowing objectively how much I can expect to be able to do without causing failure.  I tend to do things hard and keep going even when my body objects.  This knee thing does not allow such behavior.  I think failure may occur two ways, 1) by excessively long use and 2) by a single instantaneous jolt that exceeds the knee’s new design limits.  I can avoid item one by paying attention to how things feel.  But item two is more difficult to gauge.  I like endurance sports.  I would like to backpack for a few weeks or longer or do distance biking.  I don’t care how slow I need to go, just that I want to go all day, many miles.  What if I need to step up onto a big rock with a heavy pack – will this rip into my knee.  Must I always step up with the good leg even if the repaired knee is willing to perform the function!

I already can pretty much walk or bike fairly long distances without any increased bad sensations, so I continue to increase distances on both biking and walking, limited more by the time in a day.  And I can walk pretty fast, even uphill - aerobically fast.  But I continuously guard against the single-point failure that I believe would be caused by over-stressing things.  And this is not a matter of confidence in my knee, but rather something (I think) needs to be paid attention for the remainder of my life.  This is going to be hard. 

Harder to deal with is going to be the meniscal degeneration, if any.   Renn posted very good info in her link above that shows promise and helps quantify details.

Well, I think I rambled enough.  It does help to confer with others.

Regards,
Dennis

Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on February 08, 2012, 12:04:49 AM
It’s been a while since my last update.  I am still doing well (relatively speaking), and would like to share my thoughts and welcome your comments on this philosophy. 

First, if you are reading this, then I feel sorry for you, because your life will likely never be great again (if you depend on your legs for sports/hobbies).  I’m sorry I need to say it, but you need to face the truth.  Knees dominate daily life and will probably do so for you.  Sorry.

On 22 Sep 2011 I traveled 800 miles for my 2-year post-op MRI and visit with Dr. Minas.  The imaging people said that 17 different images were taken.  During my 5-minute visit with Dr. Minas, he looked at two of those images and (here is everything he said) said, “you are doing very well”.  I should not complain and am very grateful for the wonderful surgery, but I sure would appreciate more information.  I got billed by the hospital for some doctor I never met, presumably the interpreter of the MRI.  Should I request the raw MRI data (I can take courses to learn how to view it) and the interpretation.  I want information.

Ok, here is what I am doing these days.  I still workout 2-3 hours per day, 7 days a week – it is a hobby.  I can walk uphill and downhill as fast as I want with no pain.  I swim and do weights 3 days, and walk at least 4 days (or bike ride, but wintertime I only walk).  Sometimes I walk with a light 10-15 pound pack and eventually hope to soon try a 30-50 pound pack for backpacking.  I’m really not sure why I have not tried more weight yet as the pack never bothers me.  Most walks are around 6 miles, some as much as 12.  For me, a very fast walk is merely 15-16 minute mile pace – not that really fast at all, but I never was fast, when I ran, it was an 8 minute mile.  My knee feels ok, but I am always aware the knee is not like my other knee.  The knee seldom has pain, but ‘sensations’ always let me know the knee is less than the other knee.  I think I will always need to consider this knee a very vulnerable part of my body.  For now I can do a lot as long as I am very careful. If I make a mistake or misstep, permanent damage could be done to my knee.

I never run even a short distance, such as crossing the street.  I am always on a vigil to protect my knee.  Friends are tiring of my protective nature.  I tire of it.  I can outwalk sedentary friends and keep up with the others walking, but not when they run.  My former running and backpacking buddies think I am faking it or over-indulging, wanting me to run or go on hard backpacks.  In November (2011), I did a series of things that set me into a month of regret, but I did recover fully.  Experimentally, I went for day-after-day consecutive fast hikes -  a 6-mile, then 7-mile hike, then a rugged 8 mile hike in Shenandoah National Park, then a very fast, as fast as I could walk, 7-mile walk.  I think it was the very fast walk that did it, I was in pain that evening in bed.  The pain remained for a month.  I thought I may have done permanent damage, but did not.   In my recovery period (month) I cut back to 3-4 mile hikes, slow, 4 days a week.  I do not think it would be good to totally ‘rest’.  Does this prove I am vulnerable, or perhaps the opposite, that the pain doesn’t matter, just go for it?

Now I am again doing longer and longer hikes, limited by the time it takes now that I no longer run.  I would never dream of playing sports, such as baseball (running to base or to catch a ball), soccer, etc.  Skydiving used to be something I enjoyed a lot, but I don’t want to have that rare hard landing ruin my knee.  I sorely miss running, but want to hold on to what I have – pretty much unlimited walking, and hopefully backpacking soon.  But I do not expect to do anything unrestrictedly. 

I feel it prudent to get ready for total failure as I push things.  Why are we avoiding total knee replacements (me included)?  What can I do now that the knee replacement would not allow?  I see they have a projected 30-year knee.

I wish everyone well.  If I can help, feel free to contact me.  If you have any thoughts on what I said, please share.  Anyone living nearby (17265), I would love to meet for a hike if you can.  As I said, knees dominate my life – why not hike and talk knees.

Dennis
Title: Re: ACI - 1yr post op
Post by: Jamey1215 on February 09, 2012, 01:07:53 AM
Hi Dennis,

Any regrets?  I am scheduled for ACI and TTT surgery in a few weeks.  I am very nervous but don't really have many other options, as I have been told by several orthopedics.  I am very active, at least trying to be right now, but spend almost every evening with ice on my knee and some days Ultram is the only thing that gets me through the day.  I would not say I am in a ridiculous amount of pain, but can no longer do the things I once enjoyed doing.  I used to train and run marathons and triatholons.  I also have horses that I ride a few days a week and it is getting more and more difficult to get through my days at the barn, doing what I love.  Anyways, just wanted to see what your thoughts were.  I am committed at this point, but would love to hear your thoughts.

Jamey
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on February 09, 2012, 01:08:43 PM
Jamey,

Regrets?  Not really about this surgery.  What options were there?  I regret my motorcycle crash in 1987 (stupid me), and very much regret going to Dr. David Joyner (1990 surgery) and listening to him when he told me I don’t need an ACL to run 50 miles a week in mountains, skydive and backpack.  This was the dark ages before the internet, and I believed him.

I read your other posts.  Where is your defect and how big?  My situation before ACI was similar to the way you are describing yourself.  I had to do something.  No option gives us the durability of a native original knee.   Technology keeps progressing and perhaps some day…

What does your surgeon suggest you should be able to do after surgery besides being in less pain, and what restrictions do you expect in the long run?

I wish you the best.

Regards,
Dennis
Title: Re: ACI - 1yr post op
Post by: Jamey1215 on February 09, 2012, 08:07:30 PM
Hi Dennis,

Thank you for replying. My defect is 2cmx2cm on my patella. I believe there is a smaller one as well on the patella. The doctor is optimistic that I will be able to return to high impact sports. He said I could be running again at 9 months if all goes well. I am hoping to be riding and showing again by the fall. I don't want to be overly optimistic but I need something positive to look forward to if I am going to get through this. I'm really worried about getting back to work. I have 3 weeks max of paid time off. I can sit at a desk upon my return so that's a positive but I don't have the luxury of staing at home for 4-6 wks like some posts I have read. I had a realignment done on my rt knee about 15 years ago and don't recall it being that awful. Yes it hurt but 3 wks after surgery I was up and around no problem. I even recall going to a new years party and was back in classes for the spring semester. I keep telling myself to stop reading about this, everyone is different but for some reason I can't!!
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on February 09, 2012, 10:11:02 PM
Jamey,

My recommendation is that you read the Carticel literature carefully as well as rehab guidelines from your surgeon, all of which you should have in-hand by now.  Location of the ACI greatly changes the rehab protocol, yours being on a non-weight bearing surface.  But then you will also have the rehab protocols from the TTT to incorporate.

ACI is not like any other surgery, it is not like healing from a broken bone or ligament reconstruction.  ACI most certainly is not at all tolerant of pushing it hard in the early phases (before the tissue matures) - you would squash it, rip it, delaminate it and otherwise destroy the initially delicate tissue.  This runs counter-intuitive to our spirit of pushing our bodies hard and getting increasingly great results.  Physical therapists unfamiliar with ACI have destroyed many knees via overaggressive rehab early, just read this board to see examples.

That said, ask your doctor how to protect and rehab yourself in the various timelines/phases after surgery and I expect you will have the best chance for a healthy active future.  If you want to further prepare, call your Carticel consultant to add to what the doc says.

From what you said, I bet you can go to work as needed (but ask the doc).   You do need to perform all the rehab (perhaps continuous passive motion machine) as required.  And you do need to be careful.  As long as you have good knowledge of what to expect and are willing to follow guidance, it all sounds good.

I am curious as to where you are having it done and what surgeon you are using.

Dennis


Title: Re: ACI - 1yr post op
Post by: Jamey1215 on February 10, 2012, 03:51:17 AM
I live in the Houston area. My surgeon is Patrick McCulloch and the surgery is at Methodist Hospital. Dr McCulloch is the cartilage guru for this area. I actually started off with a different surgeon but after my scope and biopsy I was referred to McCulloch. The surgeon that was originally going to do it felt the realignment that I needed was beyond what he felt comfortable doing. I have a lot of respect for him for referring me on once he realized this was going to be more complicated than he was used to doing. I believe I am having the amz alignment done. They plan to just move my patella up instead of medially or laterally since my defect is on the medial side of the patella and I had some wear on the lateral side. Sorry for babbling....
Title: Re: ACI - 1yr post op
Post by: cdubb on February 20, 2012, 10:35:32 PM
Jamey...I would be cautious with impact activities too early after surgery. I had a patella ACI with TT to my left knee on 11/3/10 and set aside the fact that I had a patella DeNovo NT with TT to my right knee on 12/13/11...there is no way I could do impact activities now. I had a 20 mm x 20 mm central defect on the left knee. I am very much improved from pre op, but I still struggle with stairs, inclines and arising from a seated position on my left knee. Clearly the right is only 2 months post op, so I'm a far cry from considering impact activities overall. I'm not saying you won't ever be able to run or do impact, but just keep realistic expectations. I don't think I would even be cleared for impact on just the left knee alone until 16-18 months post op... Maybe you'll have a quicker recovery than me though and perhaps your doctor allows more earlier. 

As for the work...it is possible to return at 3 weeks. I took longer, but that's because I could and still get full pay. 2-3 weeks for sedentary job is fine.  I do recovery from surgeries quicker than many also, but this one is a bit more than I'd ever done before. Driving for me took until 4-5 weeks for both right and left, but only because I am 5'11" and just didn't fit in my car until I was unlocked to 60 degrees.
Good luck to you!
Title: Re: ACI - 1yr post op
Post by: OCD in Portland on February 21, 2012, 12:56:07 AM
Hey cdubb,

Now that you are at 10 weeks post op, how are you doing?  What are you able to do?  Not able to do?  Are you where you expected?  I'm at my 10 week mark on Friday, and while we had slightly different things, I'm curious how yours is going.  Also, we both had our other knees done previously, so wondering how your other leg is holding up.

I was NWB for the first 6 weeks, increasing PWB for the last 4, and finally get to walk without crutches on Friday.  I'm excited because I haven't really been able to do anything yet.  I wasn't even allowed to start PT until week 6.  As of this week I can do the bike with low resistance and swim laps, which is pretty exciting.  I'm surprised that my knee still hurts, especially when I sleep, but I think that's just because my last knee really didn't hurt after the first week post op.  As for my other leg, it has help up on the 10 weeks of crutches so much better than I ever expected.  That has really been the most positive part of all of this, I was really worried i would be over-stressing the first leg after this surgery.
Title: Re: ACI - 1yr post op
Post by: Jamey1215 on February 21, 2012, 01:29:56 AM
Cdubb,

I am not as anxious to return to running as riding.  If I can't run for 9-12 months I won't be too upset.  I was actually shocked the surgeon even said it was a possibility.  I plan to give up long distance running and maybe just do some triathlons hopefully next summer if able.  If not, oh well.  I just hate that I am going to be giving up my independance for a while.  I am good for a few days, but a few months is going to be rough.  Hopefully I will heal quickly like I have in the past.  I have a job where I can sit at a desk if needed so hopefully by 2 wks that will be doable.  I have short term disability but it only pays 60% so I don't want to use it if I don't have to.  I am not really financially prepared to not be collecting my full paycheck.  I think at 2 weeks I will have to go back regardless and just suck it up.  I have a week of vacation I can dip in to also but I would like to save that for an actual vacation if possible!
Title: Re: ACI - 1yr post op
Post by: cdubb on February 22, 2012, 03:29:12 AM
Hey OCD,
I am 10 weeks today.  I was heel/toe touch for 4 weeks and then allowed to go up a little from there.  At 6 weeks, I was to begin the transition to FWB and off crutches. Since I had good quad control, I was able to just ditch the brace at 6 weeks also.   Within a couple days, I was crutchless and that weekend, I actually did quite a bit out and about shopping at Target, running my son to basketball and a birthday party.  Moving slowly and with a slight limp, but doing pretty well.  Once I got to FWB, it openen up so many more things to do in PT.  It's still pretty boring and only closed chain permitted for patella defects, but I'm doing some single leg balance on flat ground, but I do like to have something to touch for balance when doing single stuff because I don't entirely trust my quad yet.  I amdoing some two legged balance things are on the blue foam mat like thowing a ball at the rebounder, or cord stuff like rows, pull downs, etc.  I like that because it also helps my upper body and the quad actually does get a workout having to stabilize on a dynamic surface.  I'm doing wobble board stuff with 2 legs.   Calf raises and 4 way ankle strength stuff.   A lot of my PT stuff is hip and core focused, so I am doing SLR's of course, planks, crunches, twists.   A lot of isometric quad contractions, NMES still, hamstring curls with a swiss ball or lying prone on a table.  Hmm...I think that's about all I'm doing at PT??  My normal daily activities with geting to/from work, shuttling kids around, going to PT, shopping were fine by about 7-8 weeks out.  I still get sore and at times I have a limp, but on a whole, I think I'm moving around pretty well.  A long ways to go in PT still clearly, but day to day, my life is pretty normal.  I do have some soreness on the anteromedial side of my shin aggravated with hamstring type exercises and my PT says it's pretty normal and likely some pes anserine irritation.  I also have some IT band stuff going on with some snapping of the IT band on the lateral and proximal part of my patella.   Not that I didn't trust my PT, but I did email my docs PA also to make sure it all sounded normal and she did say that is what it sounded like and to roll and stretch the IT band and the pes anserine or hamstring insertion should calm down as the quad returns.  She didn't really seem concerned in the least though, so that's good.  I did ask if I could do the elllipical trainer and was told not yet and to wait until at least 14 weeks and then try, but be cautious.

The other knee is definitely aggravated  having to do a bit more, but has help up okay on a whole.  I think that it certainly could be much worse than it is.  It was never pain free post op, but just much improved.  I am icing both of my knees a lot.  I unfortunately cannot take anti-inflammatory meds on any consistent level for awhile because I took so many last year to keep my right knee in control until I could have surgery that I gave myself NSAID induced gastric erosions, so I don't have that to help keep things calmed down either.  Overall though, it is doing okay.  I think it is slightly regressing because it's hard to work it out too much with the other knee so compromised, but I do all my exercises with both legs at PT.  At least the quad atrophy matches now!! I have two skinny, muscleless thighs now! I'm hoping that as I can do more with the right, both knees will improve a lot. 

You know what's strange...I think I am having more ongoing knee pain at this stage than I recall with my left knee also.  I absolutely am having sleep issues still, which I know I did not have last time.  What happens is that I bend my knee when I sleep and then I go to straighten it and that causes pain that wakes me up and then it aches/throbs and I can't get back to sleep.  I have pain meds left from post op, but they actually make me kind of itchy/agitated and keep me awake. My doctor prescribed Ultram to try, which does help a little, but I try to not take it every night. 

So, that's where I'm at now at 10 weeks.  In summary, my daily life is pretty much normal, but a long ways to go with rehabbing both knees still.
Title: Re: ACI - 1yr post op
Post by: cdubb on February 22, 2012, 03:45:13 AM
Jamey,
When you mean riding, I am assuming you mean horse?  Only because you also said showing?  If that's the case, I think that will still be a stretch by the fall.  I've only ridden a horse a few times and don't really know what I'm doing, so I'm sure I put more force on the knees than necessary, but I do remember that my knees hurt a lot during and the following day.  We were in Estes Park and did a 2 hour trail ride (made for beginners because there were some younger kids like 8 on the ride and we only galloped at a couple spots).  I did that as an activity because I thought it was a smarter activity for my knees than trying to do a hike in the mountains....I was hurting...and that was before my knees really tanked on me.   Again...not experienced at all in riding a horse, but I was surprised at how much force was going through my knees on the ride, especially during the gallop and when we were going down some of the steeper slopes.  It reminded me of jet skiing and how much I hurt after that.  Since you're experienced though, I'm sure your ability to return to that activity will be different than mine!

Had my short term not paid 100% for up to 6 weeks, I would not have taken the 5 weeks I did.  Last year due to years of service, I only had 4 weeks full pay before droping to 50%, so I returned at 4 weeks.  Based on our benefit structure, I wasn't losing pay, so I didn't rush back.  It'll be rough, but you could probably do it.  If you have the opportunity to work from home, that would be ideal.  I stayed at home my first week this time and for a week and a half my left knee.  So, I wasn't actually commuting and driving to the office until almost 6 weeks.  I know that my docs PA told me that they had one patient who was a Kindergarten teacher who returned at 2 weeks ...that's insane, but she did it!    I can absolutely understand the need to get back if you'll lose part of your salary...especially when the bills start rolling in from surgery... My US Bioservices bill was higher (double actually) than the costs of the DeNovo NT graft material, but both charges are absurd...and even the amount insurance pays is absurd.  We're actually still paying off US Bioservices... Just expect to have some increase in swelling in the knee, foot and ankle when you go back.  It's inevitable no matter when you return. 

Good luck to you!

Dennis...sory for hijacking your thread!
Title: Re: ACI - 1yr post op
Post by: Dennis BadKnee on February 23, 2012, 10:07:55 PM
No problem, I don’t consider the dialogue off topic.  And it helps me to see what others are going through.  If I can help, I am always available through this blog, my Personal Mail (it is listed) or phone (best – send a PM).  I have spoken to several folks, and it is helpful to me, hopefully to them too.

Jamey,
I believe today is your day of surgery.  Please let us know how you are doing when you are up to it.  And do be careful to not overdo it and ruin the surgery.  I know it feels good to push things, but that is not correct for ACI surgery as I am sure you have read.

As far as myself, I’ve begun to carry a pack when hiking.  Did two 6 mile walks with a 19 pound pack followed by a 4 miler with a 23 pound pack, not much, but a start.  I think my knee is a little sore – but it may not be due to the pack.  Hopefully I will be backpacking soon.  Too bad where I live I need to worry about tick-borne Lyme disease in warm weather.  They sorely need a Lyme vaccine.

Regards,
Dennis

Dennis
Title: Re: ACI - 1yr post op
Post by: Rennschnecke on February 25, 2012, 12:45:38 AM
Hi Dennis,

Great to hear how you're doing!  I know that you don't feel it because you are so far off where you were.

Don't know if this will help (probably won't), but I know someone who used to say that when he goes he doesn't want any part of him left in good working order 'cos it means he hasn't used it ... ;)

Take care and be gooooddd!

R :D
Title: Re: ACI - 1yr post op
Post by: OCD in Portland on March 21, 2012, 04:08:24 PM
Hey Cdubb,

It's good to hear things are progressing.  I am in my 14th week, post-op left knee, and still on one crutch (or cane).  The day before I was supposed to walk I woke up with a hugely swollen knee and probably 10 degrees less ROM.  It's been 4 weeks since then and my knee is just now starting to go down in swelling.  The swelling has totally ruined my ability to work on ROM and has made walking very difficult.  On a good day I may be able to walk around with just a limp, but if I sit down for too long I have to spend a minute or two straightening it out after standing before I can take a step.  So I'm battling with when to ditch the crutch and how to transition to FWB.  My surgeon and my PT seem to think that it's unfortunate, but not anything bad, so I just need to wait.  And of course, not supposed to take anti-inflammatory meds, so it's a lot of ice these days.

On the bright side, my right knee really has held up to the pressure amazingly well.  It hasn't been sore or swollen once and has only gotten a little "clicky" when I have been standing for over a couple hours.  So while my left knee isn't going as smoothly as the right, the fact that my right is doing so well gives me real hope for 9 months from now.   But I have to say, the day (or night) that I can sleep comfortably will be an amazing feeling.  I also have pain meds and sleeping pills, but the pain meds also keep me awake and itchy and I'm not a fan of taking sleeping pills regularly.  I guess at this point we just keep doing what the PT/docs say and keep improving!
Title: Re: ACI - 1yr post op
Post by: Honeybunch on March 29, 2012, 09:29:06 AM
I'm never going to be able to skydive  :-\ ?

is it the pressure from falling.. or the land.. can't i land on my bum.. thats disconcerting =(