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Author Topic: Sune's Oct 18/2012 MACI and fulkerson  (Read 23734 times)

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Offline Joeybiscuits

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #45 on: April 28, 2013, 10:15:03 PM »
Sune

Very good to hear your news from a few weeks ago. I haven't logged into my diary or the site for about a month and just saw your message on my post. Please keep me in the loop as you progress since there are only about 6 weeks between our surgery dates. I am posting an 8 month post-op update today on my diary.

Thank you much.

JoeyBiscuits

Offline sune

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #46 on: June 13, 2013, 11:25:12 AM »
Almost 8 months post surgery

Things are progressing steadily. The MRI examination two months ago was a big relief for me, as I was really worried that I had damaged the grafts. My exercises are back up to a good routine, I try to do a serious workout every other day. I think the in between resting day is important for the healing and for prevention of breaking down of the tissue instead of building up. I feel like I'm getting more muscle in my leg, and I've also just recently been able to do exercise that makes my heart rate go up to 140 for at least 10 minutes. This is big for me! It's been a long time since I've been able to do that, and it feels great to get the heart pumping… I do the cross trainer and the bicycle for about 10-15 minutes at the moment, and a stairmaster for five minutes. I might be able to do more, but I'm still afraid to. I also do leg press and other exercises for strengthening my thighs. I basically walk as much as I want during the day, and I've also begun biking outdoors for errands.
 I still can't stop worrying about how much pain is acceptable… My PT has instructed me to be very conscious about walking normally up and down stairs, sitting and raising from chairs etc., but when I do that, there's some pain, perhaps a level 3 to 4 on a scale to 10. Also, after having done it for a while during the day, a minor pain/soreness builds up in the knee (I think), maybe a level 1 to 2. My PT and my OS say that pain during rehabilitation is unavoidable, and I'm sure they're right. I can also accept that, but it's the constant worry about when it's too much and a sign of degeneration as opposed to regeneration. And the self-doubt whether I can tell the difference between good and bad pain. That combined with the impatience of seeing progress is a very delicate balance!
I also have a hard time deciding whether my knee swells or not. Most of the time, I don't think there's any difference in its size, but sometimes I'm in doubt… At the very least, this must mean that if it swells, it is very little.
Sune
1999: Chondral lesion on medial patellar facet. Synovium changes, grade II degeneration of neighbouring cartilage. Debridement (shaving) and lavage.
2009: 2nd arthroscopy,  debridement (shaving) and lavage.
2010: steroid injections
2012: MACI (2 patella, 1 trochlea)+Fulkerson+Lateral release

Offline stereohearts143

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #47 on: June 14, 2013, 04:08:51 PM »
Hi Sune,

I just wanted to touch base with you as you and I seem to share a lot of the same experiences.

I had a 2x2.5cm MACI on my Right knee in the trochlea/lateral femoral condyle area in July 2012.  Like you at around the 4month period, my knee started having deep burning & stinging sensation that lasted for about 3 whole months.  During that entire time, I was CONVINCED that the grafts failed.  Luckily like you the MRI revealed that all was okay =) and ALL of my lost sleep was for nothing!

Fast forward to my 8 month period, I was very much like you.  I still had difficulty with getting in and out of chairs symetrically and favored my strong leg.  Only thing I was allowed to do was bike and elliptical with resistance to help build the quads up.  Needless to say I was frustrated because there was still so much I had trouble doing: bending down to pick things up, chairs normally, etc etc with anything involved bending the knee.

I'm almost at my 1 year mark and although I'm not back to my old self, I don't have any pain with what I'm allowed to do.  I have a ton of crepitus (which I'm hoping is tracking / growth issues, will get an answer to this with a scheduled MRI) but am biking and using the elliptical with a fair amount of resistance for 25-45 minutes a day.  Everybody goes at their own pace and the only thing you can do with this surgery is to respect your individual pace and have faith.

My point to you is that the patella and trochlea take SO MUCH longer to heal vs. condyle lesions.  My scenario is different than yours because you had hardware and realignment , so maybe some of your symptoms are "growing pains" from that aspect of your surgery.  But I really wouldn't load it too much with the MACI.  I would stay away from pain (in this case your sit /stands) even at 8months out.  Keep biking and increase the resistance till you feel like you've put on a fair amount of muscle mass, go to the pool and do squats in there to get the control aspect of it and just wait till the 1 year mark to test it.  If at 1 year your graft is good and the OS and PT are pissed at you for having done too little, well then you can always make that up.  Less is more and more is less with ACI's =)

It's been a long road (trust me I know) but keep up the good work!


FYI: I have a friend of a friends who had a patella MACI and some sort of realignment.  She is about 11 months out and just started doing stairs step-over-step with MINIMAL symptoms.  So even though we're not supposed to compare, just a little food for thought =)
R antero-lateral condyle / trochlea ACI 2.0 x 2.5^2 July, 2012

Offline ozzie

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #48 on: June 24, 2013, 05:46:41 AM »
Hi!  Thanks for posting your experience.  I will have an ACI patella with Fulkerson in two days and am excited to finally begin the process, but of course nervous too.  Reading your ups and downs is so helpful and I was pleased to see in your last update that you found out that the grafts are in good shape.  Best wishes for continued progress!
ACI patella and trochlea & Fulkerson on Dec. 26, 2013-Dr. Scott Gillogly
ACI patella surgery and Fulkerson with Dr. Gillogly June 25, 2013
Extensive cartilage damage in both knees due to misalignment of patellas

Offline sune

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #49 on: June 26, 2013, 10:08:01 AM »
Hi stereohearts

Thanks for sharing your advice and experience.

You have a point, it's certainly important to be careful in order to protect the grafts and let the implanted cells mature without damaging them. I feel that both my OS and especially my PT are pushing me, and they claim that a small amount of pain is inevitable, and that they are only having me do things that the knee can endure. Also, pain is not coming from the cartilage, as it is not innervated. So they're saying that as long as the pain doesn't last several days or leads to a downward spiral, it should be okay.
But I don't know what to think. On the one hand, I guess I ought to trust them, they are the professionals and the ones caring for me. Also, it should be said that everything I'm doing only causes minimal pain. Perhaps others would call it discomfort instead? And perhaps progress requires loading with sufficient intensity that some symptoms are inevitable? On the other hand, I'm also thinking that it would be better to be safe than sorry. And do like you're saying, be sure to do some biking every day to stimulate cartilage growth and maturation, but stay away from anything that causes pain. (Although more or less everything causes some symptoms/discomfort, even walking and biking - so it's always a gradual distinction if you know what I mean). But it's difficult… I feel very uncertain about my ability to find the right level of exercise! And at the same time I feel impatient about healing: I need to do some aerobic exercise, I've had several years with way too little, and I feel like it's taking its toll on my body and on my general mood. But of course, I try to remind myself that there is a larger perspective at stake here.

By the way, what do you mean by "doing stairs step-over-step"? Two steps at a time or?
Sune
1999: Chondral lesion on medial patellar facet. Synovium changes, grade II degeneration of neighbouring cartilage. Debridement (shaving) and lavage.
2009: 2nd arthroscopy,  debridement (shaving) and lavage.
2010: steroid injections
2012: MACI (2 patella, 1 trochlea)+Fulkerson+Lateral release

Offline sune

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #50 on: June 26, 2013, 10:09:08 AM »
Hi Ozzie,

Thanks for stopping by. I wish you the best of luck for your surgery!

Sune
1999: Chondral lesion on medial patellar facet. Synovium changes, grade II degeneration of neighbouring cartilage. Debridement (shaving) and lavage.
2009: 2nd arthroscopy,  debridement (shaving) and lavage.
2010: steroid injections
2012: MACI (2 patella, 1 trochlea)+Fulkerson+Lateral release

Offline stereohearts143

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #51 on: July 13, 2013, 05:36:40 PM »
Hi Sune!

Step-over-step means they don't put two feet on the same step, but alternate steps like how everybody else goes up.

I hope your rehab is progressing well  :)
R antero-lateral condyle / trochlea ACI 2.0 x 2.5^2 July, 2012

Offline sune

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #52 on: November 07, 2013, 10:20:22 AM »
Hey all,

I thought I'd post a small update after having gone to the one-year follow-up MRI exam and doctors appointment yesterday.

My OS was very pleased with what he saw in the MRI images. In particular, he was impressed with the outcome of the patella ACI, as those are notoriously difficult. The new cartilage looked very well integrated in all three spots, and had the right thickness, and in some places was hard to distinguish from the old cartilage. So that was the best news that I could get from MRI. He also examined the tracking of the knee cap, and it was fine.

On the other hand, my symptoms are still varying quite a lot. Sometimes, I feel like I could do anything, I feel strong and confident in my knee, but then I do some rather small thing, and then I have pains for many days even weeks. This means that I still cannot fulfill my needs or wishes for exercise, i.e. it is difficult to get my pulse up on the bicycle, and on the cross trainer, I can usually only go for about 10 minutes, otherwise I'll be sore the next day. The doctor didn't really offer any explanation for this, but perhaps I didn't pursue it enough. I think it might be the tendon below the knee attaching to its new spot on the shin that's irritated (and these this seems to be the region that's giving me the most problems), so I'm hoping it will dissipate over time. The doctor emphasized that the implants are still maturing. He recommended that I make bicycling my highest priority, instead of the strengthening exercises that I've been focusing on so far. At least I think that the results of the MRI will be very reassuring, and hopefully I will not panic as much next time I have knee pain. The psychological side is half of the struggle, as I always fear that I have ruined something.

I told the doctor that walking downstairs hurts somewhat, and he said I should avoid walking too much down stairs, probably for the rest of my life… That was a bit of a downer, I definitely thought that would not be a problem. Well, we'll see, I'll listen to my knee, and if it turns out that I will generally have to limit my walking down the stairs in the long run also, that is all right. As long as I will be able to do some exercise, and walk as much as I would like.

I hope everybody else is doing good.

Sune
1999: Chondral lesion on medial patellar facet. Synovium changes, grade II degeneration of neighbouring cartilage. Debridement (shaving) and lavage.
2009: 2nd arthroscopy,  debridement (shaving) and lavage.
2010: steroid injections
2012: MACI (2 patella, 1 trochlea)+Fulkerson+Lateral release

Offline ozzie

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #53 on: January 05, 2014, 08:04:28 AM »
Hi Sune,  in November you posted good results of your one year follow up with your OS as well as some inconsistencies in the way your knee behaves-is sometimes very strong and dependable and at other times can seem irritated.  (From reading of others' experiences here and elsewhere and also my orthopedic surgeon's input, it seems like a year is an ideal goal, but always a realistic one for things to return to normal...


.  I had written you a quicknote/post before my first ACI (patella) in june 2013.  i just had a second one 6 months later on my other (left), which also included a trochlea deflect as well as the patella defect...December 26 1 ACI Patella and Trochlea and 2.Fulkerson osteotomy.  I am up tonight with a bit of pain and so reviewing some info on pain meds, osteotomies and ACI procedures and looking for posts on this site of people rom whom I might be able to learn or even perhaps offer support.....

It has only been 1 1/2 months since your post so not sure you are checking in or if much has changed for you, but I would love to love to continue hearing about your progress and your physical/mental state!  You had noted that the psychological state of mind is half the "battle" with ACI-which I know is so so true because even with the MRI, the results are uncertain and one never completely knows the right time to try to do new movements or an impactful action like maybe a hop!🙀....(one of my new ways of entertaining myself during these first boring post op days are lots of icons in my texts and emails-hope not too annoying). I read that the doctor said that you might never be able walk down stairs again.  Did he/she realize as she/he said this what impact this might have on you?  Ie disappointment, shock, disbelief!👎👎👎👎👎👎.  Hopefully this MD is empathetic.

So if you feel like checking in with updates now or anytime, I'm eager to hear and I'm sure that others now and in the future will also find your reports a good resource! One question I am wondering is your support system post op, ie right  after your surgery and then ongoing throughout the year.  I had actually hired a woman to help me for two weeks and she got a permanent position and told me at the last minute. I had planned to pay her $15 an hour for 2 weeks. I am happy that I can save all the money!  But although my friends are offering to pick groceries when they are at store (and we have had some meals brought by dear friends), And to drive me around esp to therapy, i don't have family here and I feel a bit alone.  My 2 teens are off on Winter Break and are making some efforts-bit I've gotten stressed and angry at them for waiting for me to tell them to do everything (including walk dog before noon! And bring me my meals before I faint from hunger). It's so easy for them too because I made a ton of food ahead of surgery and froze in single portions. I had told my good friends that we were planning to have help, although as this week after the surgery has passed, people are learning that she "quit" (before she started) and are bringing some lovely meals. I especially appreciate their company-one hour or so long visit a day is very nice. But now school is about to start again and I don't know who will pick up my son from sports and music lessons. 

Did you just prepare your own food and clean house when you could or did you have lots of family and friends to help?  The hardest part is 1. Being on one crutch 2. Pain meds make it impossible to drive.

 I have had more pain in the beginning of post op this time, but I am guessing this relates to the osteotomy, which you did not have.  I did have 3 days of a lovely nerve block and since that wore off , there is little pain emanating from the ACI SITES.  I do have some drainage on the stitches, but we are waiting until my appointment on Monday (tomorrow)....

I do wish you all the best on your knee and on your support system and your continuing progress.
And thanks for any tips you can send my way (:
Ozzie/Kayla, Atlanta, GA

Kayla
« Last Edit: January 05, 2014, 08:25:21 AM by ozzie »
ACI patella and trochlea & Fulkerson on Dec. 26, 2013-Dr. Scott Gillogly
ACI patella surgery and Fulkerson with Dr. Gillogly June 25, 2013
Extensive cartilage damage in both knees due to misalignment of patellas

Offline Lars_HH

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Re: Sune's Oct 18/2012 MACI and fulkerson
« Reply #54 on: December 17, 2014, 07:14:26 AM »
Hey all,

I thought I'd post a small update after having gone to the one-year follow-up MRI exam and doctors appointment yesterday.

My OS was very pleased with what he saw in the MRI images. In particular, he was impressed with the outcome of the patella ACI, as those are notoriously difficult. The new cartilage looked very well integrated in all three spots, and had the right thickness, and in some places was hard to distinguish from the old cartilage. So that was the best news that I could get from MRI. He also examined the tracking of the knee cap, and it was fine.

On the other hand, my symptoms are still varying quite a lot. Sometimes, I feel like I could do anything, I feel strong and confident in my knee, but then I do some rather small thing, and then I have pains for many days even weeks. This means that I still cannot fulfill my needs or wishes for exercise, i.e. it is difficult to get my pulse up on the bicycle, and on the cross trainer, I can usually only go for about 10 minutes, otherwise I'll be sore the next day. The doctor didn't really offer any explanation for this, but perhaps I didn't pursue it enough. I think it might be the tendon below the knee attaching to its new spot on the shin that's irritated (and these this seems to be the region that's giving me the most problems), so I'm hoping it will dissipate over time. The doctor emphasized that the implants are still maturing. He recommended that I make bicycling my highest priority, instead of the strengthening exercises that I've been focusing on so far. At least I think that the results of the MRI will be very reassuring, and hopefully I will not panic as much next time I have knee pain. The psychological side is half of the struggle, as I always fear that I have ruined something.

I told the doctor that walking downstairs hurts somewhat, and he said I should avoid walking too much down stairs, probably for the rest of my life… That was a bit of a downer, I definitely thought that would not be a problem. Well, we'll see, I'll listen to my knee, and if it turns out that I will generally have to limit my walking down the stairs in the long run also, that is all right. As long as I will be able to do some exercise, and walk as much as I would like.

I hope everybody else is doing good.

Sune

Hi Sune

Please send me an email on [email protected] I come from Denmark and I have similar problems.

Best regards
Lars