Ozzie's 2 Patella and Fulkerson ACI surgeries-both legs!

[GraceinCA]

My injury is on the patella, too.  It's really large (8x10 cm) which was part of the battle with the insurance co.  My doc says no CPM for me which I was surprised at but he said it's because of the size and location.  <shrugs>  He also said I'm to be non weight-bearing for 6-8 weeks.  I suppose I should practice with the crutches because that's going to be the challenge.

I think I've read all of the diaries here and that I could find on the internet over the past 3-4 months.  I started when I was researching all of the options.  You sound like you're doing really great.  I think so much of it is mental because of the limitations imposed can be daunting.  Obviously, most of us are very active people or we wouldn't be having the surgery.     I've been slowing losing my ability to do things over the past 5 years due to pain which really has gotten much worse since the harvesting in April.

Anyway, keep in touch.  I'll keep positive thoughts flowing your way.

[ozzie]

Tomorrow will be one week since my surgery.  I have a PT session and I do have some questions-mainly I just want to review and have everything written down. It seems very important that I am absolutely certain how to do things and what the limits are so that I do not damage the new cartilage.

 I have been told that I can put up to 20 lbs on my right leg.  Also, that I can do as high of a degree of ROM on the CPM machine as I am able-and I am able to do unlimited-120 and beyond.  Even though the doctor and the physical therapist approved this, I just want to review it again, because this protocol is not the same as the more limited one I had expected and I want to be absolutely sure I am not doing anything to damage the graft!  The computers have not been working at the office, so the therapist has written things down and some things she just said verbally without writing them down and I did not take notes.  The first day, my husband came with me and he did take notes and one thing was that I should "not go from bent to straight" which we think meant when I was ambulating, but I am not positive!  So, I have been keeping my leg straight most of the time.  They had said I should put on my brace in locked position and then can unlock it, which means it can bend.  I want to review all of it though.  I am doing amazingly well thus far, with the pain managed well with the medication that I am taking about every 5 hours still.  I have lots of energy and am reading, writing, watching movies, letting my family wait on me, and taking crutch tours of the house several times a day.  When friends visit, I am able to sit in the family room with my leg propped up on coffee table and socialize easily.  It may be a neurotic, overly anxious thing, but I almost feel like it is too easy and hope that the ease does not mean that the graft did not take!  I guess everyone with this type of surgery (ACI, denovo, etc) will wonder how the graft looks and I can't have a xray/mri for quite a while I guess....

[ozzie]

Hi Grace!  I think I posted at the same time that you did on this page.  Your comments make sense about what the doctor said.  Meanwhile, my doctor (who I have confidence in) has allowed me to go as far as I can on the CPM!  and I am able to bear 20 lbs.  My injury is not as large: 2 x 2.5.  So perhaps that is the difference.  Mine was from wearing away, not a traumatic event, so perhaps that is why mine is not so large.  It was down to the bone though.  I appreciate your encouragement.  I can tell you that although I would like to think that I have mental/emotional strength, the pain really has been quite manageable. I'm not sure that this is very common.  If I figure out if I did something prior to surgery to make it easier, I will be sure to post it!

 I do have pain when I am about several hours from my last pain pill.  It takes about half an hour and then the medicine helps alot.  I wait until the pain is ameliorated before doing my exercises.  Thanks for keeping in touch.  I hope you are getting excited to be able to start getting better and back to being active!   

[vickster]

Tomorrow will be one week since my surgery.  I have a PT session and I do have some questions-mainly I just want to review and have everything written down. It seems very important that I am absolutely certain how to do things and what the limits are so that I do not damage the new cartilage.

I guess everyone with this type of surgery (ACI, denovo, etc) will wonder how the graft looks and I can't have a xray/mri for quite a while I guess....

http://www.kneeclinic.info/download/CKC_GNHFT_ACI_RehabGuide_101106.pdf

This may help you understand the consistency of the aci graft. At one week, it is like water, and needs careful protection. A year to firm up or more

Good luck with your recovery

[ozzie]

Hi Vickster....Thanks for the link.  I will check it out now.  Am I correct to remember that you are in limbo presently regarding your knee?  I hope that there will be some solution to that.  I spent 10 years with an incorrect diagnosis and being told there was nothing to be done about my failing knees and it was scary.

[ozzie]

PS That link is very good, with explanations about the brace, the ice machine (a different one than I use), the CPM machine.  I have not gotten anything from my doctor's office with elementary explanations like this and it really should be part of patient education for the surgery.  The more the patient knows, the more likely we will be able to successfully follow the rehab protocol.

The link is specifically for femoral and tibial aci rehab-they may not have one for patella specifically at this time.  The patella stuff is being developed in recent studies.  I asked my physical therapist (actually a sub because the one I usually see was on vacation) and she said that Dr. G has found a more aggressive, less cautious, rehab protocol to work well for the post op patellar aci's-with unlimited range of motion on cpm, as I have, and up to 20 lbs. of weight bearing.  They have not advised me to sleep in my brace.  I specifically asked about this because I wondered if I could twist my leg in a way that could damage the graft.  This therapist said that this was not necessary and that many patients slept in the "Game Ready" ice machines, which is what I have been doing.  On Friday, I will see the doctor and nurse to remove my stitches and I am going to ask some more questions!

On Tuesday, the therapist added hip extensions-lying on my side-lifting the operated leg with bottom leg bent and then lying on other side and with "good leg" with knee up and the operated leg lifting to work hip and inner quad.  The others are still: quad sets (tighten quads), straight leg lifts, stretch calf, stretch hamstring, ankle pumps, and propping ankle on foam lift so that my leg straightens.  I wish I had an exercise bike-eventually I will go to LA fitness.  At PT sessions, I use the bike for about 10 minutes.

[vickster]

The link is from a UK centre, one of the pioneers here which was involved in a major trial.  It's not that new I think, but presumably their protocol has not been updated.   You should however, always follow your surgeon's protocol, although I see no issue.  Surgeons here are less inclined to do patella MACI due to the lower success rates (shearing forces), with the NHS and private insurance companies also less inclined to fund (equivalent of around USD 25k)

My knee is pretty much fine right now, after some hyaluronic acid injections a year ago.  It had a wobbly in February, I saw the OS (as I was considering a job change which would have had insurance implications).  He said to see how it goes.  I have lost the weight that had crept on and I now cycle 100 miles a week. Strong legs, less weight = happy knee for me   I get the odd twinge and I can't knee on it comfortably, but I am leaving well alone for now!

Happy 4th July to you

[ozzie]

Vickster-Oh that is a happy follow up to your knee story/situation. I don't think anyone who has had knee issues goes back to kneeling ever.  At least that is what I have heard.  So if that is your main restriction, you are doing great!  and... Yes, the weight does make a difference on the knees.  I had gained quite a bit of weight when I stopped running and I just lost about 12 lbs.  I am going to work on losing more, because that was just about half of it.  Cycling is so great-although unless I go out to an actual biking trail (which is not close by), the cars around here are a danger. I do love biking and love my bike-so maybe when I get the go ahead, I can try that sport.  I am definitely going to swim as soon as I can-the doctor said I may be able to go in the pool next week.  He even said I could do a straight leg kick which totally surprised me.  I am going to probably start off using a flotation device for my legs and just using my arms. 

That brings me to another point.  Vickster mentioned that the patella surgery is not done much in England because of success rates and that was the problem that caused my insurance issues.  But, more recent outcomes have been excellent, including studies by my doctor, Scott Gillogly.  I am hopeful that my next ACI surgery in the other leg will come when some of the studies and success have pushed the insurance companies away from terming the patella surgery experimental. 

Yesterday, I went for my 10 day appointment.  The nurse took out my sutures-which hurt a bit-but not badly! Sylvia, who is Dr. Gillogly's assistant, seems to be a pro at removing them.  Dr. Gillogly has fellows working for him.  Dr. Shue has been his fellow since I have been going to that office and for both surgeries.  She assisted on both surgeries, although he said that fellows do not do the ACI's, only him.  She probably did some of my osteotomy this last time though.  She is finishing her fellowship and will work for Kaiser here in Atlanta, where they are starting an Orho program (or an enhanced one-something is new about it) and she seems excellent. I was sorry to say goodbye to her because she always comes by during PT and seems very smart and is also warm and friendly. 

 They confirmed that it is fine for me to do the high degree of range of motion on the CPM machine-no risks for to the patella graft. They explained why, but I don't clearly remember the details-it related to where the graft is.They recommended I continue on the CPM for 4 hours a day.  I already have max ROM, but it is good for scar tissue and also, there is a belief (per Dr. Gillogly and I also read this) that the cells learn from the CPM movement, where the cells should settle to accommodate bending and normal movement of the knee.  This is a theory that I don't think they know the exact reason for.   I can use the brace at home, but don't always have to.  I do not have to sleep in it, although I can if I toss and turn alot.  The movement I must avoid is going from a bent to a straight knee.  For example, if I am sitting with my leg dangling and then straighten my leg.  I must use my other leg to straighten it, but coming under the leg and using it as a support.  The brace can be uncomfortable and so I will use it less, although I am nervous about inadvertently twisting or unbending, so I won't stop using it completely at home.

The protocol for me has been surprisingly different from the Cartilcel/Genzyme packet I received, from protocols online such as the Brigham and Women's rehab (http://www.brighamandwomens.org/Patients_Visitors/pcs/rehabilitationservices/Physical%20Therapy%20Standards%20of%20Care%20and%20Protocols/Knee-Autologous%20chondrocyte%20implantation.pdf), and from the link that Vickster shared here, as well as the protocol described by Grace.  This could very well be because the patella ACI is one of the newer ones (of a new surgery!) but also perhaps Dr. Gillogly is using more aggressive rehab that he has found works well.  He has been doing alot (relatively) of the patella ACI's.  So the higher range of motion, not sleeping in the brace, weight bearing soon after surgery, etc. Because I have been doing so well in terms of pain and range of motion (sorry I keep repeating this), I may be able to drive next week.

The hardest thing about this surgery for me, in light of the fact that my recovery has been very easy so far-minimal pain, good range of motion-is waiting to see if the "graft" worked.  I was discussing my hopes for the 2nd knee and Dr. Gillogly said that I have to make certain that this surgery worked for me.  He is in general very encouraging and positive-but that is a fact.  I had an xray yesterday and saw the screws from the osteotomy and everything looks great, but the xray does not show the cartilage.  Dr. G said there is a type of MRI that shows the cartilage clearly from a procedure like this one, but it is not widely available and insurance won't cover it.  So, most of the diagnosis of the success of an ACI is from the patient's functioning: ie a poor outcome would be if the patient has difficulty walking later in the process, etc.  [/size]

I do have confidence in Dr. Gillogly.  He is a respected surgeon and also has a very nice manner - easy to talk to and does not seem in a rush from the first time I met him.  I personally do not mind that he has fellows helping him.  To me that shows that he is dedicated to teaching and if I were at Emory here in Atlanta or at another teaching hospital, fellows would be involved too.  This also means that he has to keep up to date on the latest research and techniques since he is teaching new practitioners.

The last thing I will add is despite a low level of pain, I still do take pain medicine throughout the day-mainly for exercise, particularly for the CPM machine, and also to sleep.  Last night, I tried to go to sleep without meds and ended up taking them.  I may be able to move to just Alleve, but at present I am taking one one 325 mg Hydrocodone and one Alleve(which is supposed to last 12 hours).  I don't worry about overusing meds for any reason except that I have a sensitive stomach and have already had a bleeding ulcer-and both the prescription and non prescription meds can cause stomach issues!  Also, in my first or second post op post, i said that I wished I had practiced with the crutches.  I think my problem the first couple days was more weakness from having had surgery. After those first days and since, using the crutches has been a breeze.  I do not have any steps though in my house which helps.[/size]

[ozzie]

On Monday, which was one day short of 2 weeks post op, the physical therapist added just two things to my routine: ie more hip work that are related to Pilates moves. I already did a side leg raise of my operated (right) leg, while lying on my left side. Now added also leg circles with legs parallel and also kicks.  Will only go to PT 1x a week until 4 week mark when I thi k I will be doing more weight bearing.  My knee looks great-less swelling today, pain not bad but I take a pain pill half hour before I do the CPM machine. As this recovery has been surprisingly smooth (so far!) it starts to seem possible to do the other leg at 6 months post op. but I will not be making any decisions for awhile.

I reread some posts related to patellar ACI and was relieved to see that others who have had this surgery in past year or so also reported a relatively aggressive protocol of higher CPM degrees and weight bearing than they had expected. I continue to go to 120 on CPM and use crutches while putting some weight on right leg (20 lbs) which is similar to some posts I just read.

[ozzie]

23 days post op:  Today was my first day driving and it was no problem.  I still have to use crutches to walk, so I needed my teen son to carry my purse and walk my dog on the leash when we went to the vet and then I waited in the car when he went into the grocery (with my credit card!) to get a few things because I did not feel like crutching around the store.  I have been out to eat twice and went to one birthday party for about an hour.  I realize that some people would go back to work around now and I can see how that would be ok-especially if one could stay seated and prop up the leg as needed.  I think if I were doing more walking and not able to prop my leg-I may have to ice more. As it is, I only ice after doing my exercises.

It is getting a bit "old" being on crutches-but I hope it will be worth it. All I can think about is whether the new cartilage will be healthy and strong and ultimately successful. 

[GraceinCA]

Hi, Ozzie.  Glad to hear you're doing so well!  I had my pre-op with the doctor on Tuesday.  He had to drain my knee again because so much fluid had collected that I was in a lot of pain.  It hurt worse than it has in the past and he only got about 20 cc of fluid out.  It worked for about 3 days and it's swollen again today.  I'm so glad that my surgery is coming soon.  Only 9 more days to go!!!

My husband came with me to this appointment and I think he finally understands what I (and he by extension) am in for. 

Thanks for keeping us posted on your recovery.  It's helped me prepare.

[ozzie]

That is a shame that you are having such swelling. I know your surgery is the 29th. I will try to message you around that time to see how you are.  For me the hardest thing has been being on crutches for one month  which limits the ability to do alot of stuff.  But, well worth it in order to have a good knee. I have to do the second and my teenage son suggested I do the knee replacement-to recover more quickly-mainly so I can cook for him more quickly!  It is less convenient in the short run.  But if you have dealt with a disabling knee (s) for awhile, it's worth some patience and perseverance.  I can't remember if you said you know whether you will have the femoral block for 48 hours-but that helped so much with the pain.  I'm sure that would have been the worst two days of the experience without the block. Instead, I was pain free.  I did feel shaky the first few days-from having surgery I guess, and it was about a day of remembering how to use crutches.  Best wishes to you. I am happy to answer any questions or compare notes in the future! 

[ozzie]

As I am thinking about advice that might be helpful to someone planning for this surgery-and this goes for any surgery really-I thought of something else...I was a little hesitant to accept offers to help from friends, neighbors, family, etc and i am so glad i did.  it has been so helpful to have the help.  A friend coming over with a meal -which would be great whether I had kids or not-I do have two-is so nice!  Also, just having people stop by to chat for awhile is nice when you are at home.  I actually do t mind time alone and have enjoyed doing alot of reading and watching Netflix-stuff I usually don't have time for. But it sure is nice to have visitors!

[ozzie]

It's just about 5 weeks post surgery.  Tomorrow I will go to PT and I think I will go to one or no crutches.  It will be helpful because with 2 crutches, it is hard to carry anything.  Ill be more independent, although I hope my kids will still help out as much as they have up till now.  It's good for them and been a nice break for me from household chores. But, again, I do worry about putting weight on my knee!  I realize that if the doctor approves more weight bearing, then it's ok and I should not hesitate...

I have had some renewed pain the last couple days. Nothing terrible-and mainly when I do exercises.
 I think it is because I slept with my knee propped on a pillow. I hope that it is not an indication of any setbacks on the graft.  It is hard not being able to know for sure.  I may be overly anxious about the knee-more than others in my situation.  I do find myself worrying about the ultimate success of the surgery, especially when there is any new pain.  But it could very well be nothing and I know that too.  Perhaps the biggest challenge wih the ACI is psychological-because it is slow progress and one must wait some time before finding out if it will "work"! 
  I hadn't wanted to take pain pills because I had some stomach upset from the Percoset, but I finally did just now after 2 days.  I decided that I need to do the exercises well (especially when i go to the physical therapist to orrow) and also that if there is inflammation, that its best to decrease it.

A very positive note is that I have going to the gym and riding the bike and doing upper body weight machines.  I am approved by my doctor to swim, so I hope to try that soon.  I am nervous about the slippery pool area on crutches and getting in and out. The doctor had said its ok to kick (straight leg flutter kick), so I can see if that is comfortable. I also thought I might purchase something to float both legs and the. Just swim with my arms in crawl stroke.  I could do a combination. I am really looking forward to starting that!

*update on this post:  the pain in my knee was due to tightened tissue and adhesions around the patella. During PT visits, the therapist always "mobilizes" the patella back and forth and up and down.  That loosens the scar tissue and   I had missed a week of therapy because my therapist was booked up and I don't do the mobilization on my own.  After two or three visits to therapy, the knee felt good again.
(http://www.kneeguru.co.uk/KNEEnotes/courses/arthrofibrosis-rehab-tutorials-dirk-kokmeyer-pt-scs-comt/patellar-mobilisation-part-2-set)

[ozzie]

7 weeks post op ACI and Fulkerson- Last week, I had a 6 week appointment with the doctor. He said I am ahead of schedule for my recovery in terms of swelling and muscle strength.  He gave the physical therapist (who met with us) the go ahead to start walking without crutches. 

Right after the 6 week mark, I went on a vacation for 3 nights to Key Largo where I spent the day at the pool while my family went diving.  I got a wheelchair at the airports and that was helpful.  I would not have gone on the trip if I had to walk through the Atlanta airport.  First of all, we did not have to wait (stand) in the security lines, I was not up to walking far distances, particularly at the huge airport in Atlanta, and I avoided being in crowds of people where I could possibly get bumped or knocked over.  I highly recommend the wheelchair option.  I had just started walking without the crutch at home a couple days before I went away, but I used the crutch on the vacation when we were not in our hotel room.  I went in the pool and swam around using my arms. My doctor had said I could flutter kick, but I must  keep my legs straight. No "breast stroke" style kicking.  I found kicking more difficult than I had anticipated- my leg was stiff.  So, I held onto the side of the pool and kicked gently.  I was not careful enough on the beach and one evening I stepped into a hole in the sand with my newly operated leg which was scary and briefly painful. Luckily, I was using the crutch and that prevented my falling to the ground.  My knee hurt slightly, but felt better quickly-for which I was thankful . 

At 7 weeks post-op, I would say it is not ideal to go on vacation.  I am glad we went because I wanted to have a family experience (and not stay home alone!), but if I had had control over time, I would have waited a few more weeks.

There are lots of new PT exercises at 7 weeks for me.  In addition to what I have been doing (quad stuff, leg lifts, a series of hip exercises "Pilates", and stretches for calf, hamstring, and quad) they added the following:
1. Ankle Weights for the hip exercises, 2. leg press machine, 3.balance board-2 legs and then 1 leg, sitting down and then back to standing, 4. plank and 5. side plank.  The standing and sitting are hard for me-partly because my "other" knee hurts when doing this.  I asked to use a platform to sit on so I am higher up and don't have as far to go.  I continue to do leg lifts for the quad.  I always am supposed to do a 10 minute "heel prop"-ie prop my heel up on rolled towel so back of knee is elevated, which straightens knee.  This has always been uncomfortable for me.

I also went to the gym today and rode the bike for 30 minutes, somewhat vigorously with a bit of a higher level of resistance.  Then I swam laps for 25 minutes mostly using only my arms. I tried kicking, but it was somewhat painful in the knee and I am afraid to take any chances.  I feel glad to be doing exercise, but tired because I have been so sedentary!

My knee has improved alot the last couple days-less swollen and more flexible. Still, I like to use the crutch when going places where I may walk far (my quads or my knee does gettired/slightly sore at times) or where there will be alot of people. The crutch serves as a sign for others to be careful around me. Another way to signal "caution" to other is to wear a brace or a compression stocking (they have mesh black ones at PT), but my doctor has said not to wear the brace anymore.  One thing that has surprised me is that even when I am using a crutch or wear the brace, how people will not slow down near me or will "cut me off" -like at the grocery store or other crowded places.  It is unnerving.  I have started going to the grocery store without a crutch, but I don't shop for as long as I may have in the past.   

I feel best after I do the exercises that work the quad.  When I first wake up, sometimes my thigh muscle gives out and I almost fall, so I keep the crutch by the bed for when I wake up.  The swelling has decreased alot, although not back to normal yet.  Sometimes it feels a bit warm and I usually ice it when I exercise.  The scar has started to mature and is not too bad.  There is no noticeable difference in my leg muscles-ie, the operated does not look atrophied. Because the improvement in my strength, swelling and pain have been rapid recently, I think my stamina and strength will continue to improve in the next few weeks.