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Author Topic: New here--surgery #1 on 2/5  (Read 950 times)

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Offline andreaemshoff

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New here--surgery #1 on 2/5
« on: January 26, 2018, 04:21:19 PM »
Hi all,
I am a 39 year old female--former marathoner/ultramarathoner/ironman triathlete. I've had to curtail all running because of two cartilage defects in my knee. Pain in my knees began in my teens, but I kind of ignored it. I had a systemic reaction to salmonella poisoning in 2004 which caused my knee to swell up terribly and took months to feel better. I also have a history of Lyme disease which may have also compromised my cartilage.

The final straw was a severe fall that I took in 2014 while training for the Boston Marathon. My to-be MACI surgeon (James Carey of U Penn) thinks that the above issues softened the cartilage and the fall shattered it. I now have exposed bone on my femur as well as the back of my patella. (kissing lesions).

I had surgery in 2015 to remove the loose bodies caused by the fall, which is when I learned how bad the cartilage loss was. I haven't been the same since that surgery. My knee cracks and crunches when I bend, and it feels like something is catching. I learned I have MORE loose bodies that need to come out (and were possibly missed during surgery #1).

On 2/5 I'm going in to have those loose bodies pulled out, as well as getting scoped to see if I'm a candidate for MACI. Because of the "kissing lesions", I would also have to have an osteotomy to move the kneecap into an offloading position.

I am curious about others' experiences with MACI and any words of wisdom. I am by no means incapacitated; I can do maybe 1 four mile run per week (which is a far cry from the height of my marathon training days when I was doing 60 miles per week) but at least it's something. This is such a serious surgery. I understand it's WAY more involved than a knee replacement.

Those that have gone through it--were you happy you did? How "bad" does my pain need to be in order to make this surgery worth it? I can still swim competitively (my kick is just really weak because I'm skeeved out by all of the crunching that goes on when I kick hard) but anything like tennis or sprinting makes it really unstable. I'm afraid of making things worse.

I'm not sure how active this board is, but thanks in advance for the opinions.
Andie ;)

Offline rauli

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Re: New here--surgery #1 on 2/5
« Reply #1 on: March 08, 2018, 05:54:19 PM »
How did it go?

Offline Xxiomara

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Re: New here--surgery #1 on 2/5
« Reply #2 on: March 17, 2018, 03:49:31 PM »
I just had my MACI surgery a few days ago. Prior to that I had my knee scoped to see how bad the cartilage damage was back in Dec Ď17.

Back in 2009 I had a nasty fall that started causing me pain. I tried to ignore the pain as much as I could but it started getting to the point where I could barely walk without being in a tremendous amount of pain. I saw several doctors ove the past 8 years and they all kept telling me that the pain was all in my head. I had 12 steroid shots in the last 3 years to help manage the pain. I recently got a new doctor back in Nov and she listened to me about my pain and immediately referred me to a specialist a few hours away from home. The specialist ended up finding a stage 4 chondral defect (cartilage was gone all the way down to the bone) under my right knee cap-I had zero cartilage to help fusion any type if impacts my knees would take.

The MACI surgery I had was a little bit more involved though. The had to cut my Tibia and move it so the groove at the top of the bone allowed the kneecap to glide over it properly. They also had to put a new tendon in that went from the top of my knee cap to just inside my leg to keep the knee cap from constantly falling off track.

Iím not going to lie, the post surgery pain is intense and the pain meds they give you only take the edge off but they do make you sleepy. 

For me the surgery was worth it even though I have a long road to recovery ahead of me.
If you have any questions, feel free to reach out to me.

Offline andreaemshoff

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Re: New here--surgery #1 on 2/5
« Reply #3 on: March 19, 2018, 12:29:30 AM »
Xxiomara--
Please keep me posted on how your recovery goes! I am sorry that I have not updated on my scope. I didn't think I had gotten any replies to my first post and just came back on recently to see that I had, in fact, had some traffic!
Your story sounds similar to mine with the bad fall. My troubles largely started after a bad fall as well.
My scope to harvest the cartilage happened on 2/5, and my MACI and tibial tubercle osteotomy is currently scheduled for 5/8. I don't know if it's actually going to happen or not; right now insurance is a problem because I have "kissing lesions" on my femur and patella, and that is technically a condition that excludes me from having the surgery. my surgeon said he is going to fight for me, because although I'm not the best candidate for MACI, it's the leading treatment option for my knee right now.
I'm pleased to hear that you already thing the surgery was worth it. I am trying to figure out how bad the pain has to be in order to make it worth it. I can do all of my activities of daily living, but I do have constant pain in my knee. It's like a raw, rubbing sensation. And like you, my patella is mal-aligned so in addition to the cartilage repair, I will need the osteotomy.
I really appreciate your replying to me. I haven't been able to find many people who have had this surgery and it's pretty lonely trying to figure out what to do, and not having anyone to talk to!!
Thanks for the reply and continued good recovery for you!
Andie

Offline andreaemshoff

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Re: New here--surgery #1 on 2/5
« Reply #4 on: March 19, 2018, 12:39:51 AM »
Also--I saw your other post, "to Maci or not to maci". You sound exactly like me in trying to figure out whether the risk is worth the benefit. I just don't know how debilitated I need to be in order for this surgery to be "worth it". I know that on paper and with the MRI, my knee is in such bad shape that most doctors tell me my only option is a total knee replacement. I don't understand how that can be, when in 2014 I ran a 3:15 in the boston marathon. How can it get so bad so fast?
Are you in the U.S. or the UK? Seems like many of the folks on this board are in the UK. I am in the US. Outside of Washington, DC to be exact. I'm looking to have my surgery done at U. Penn by Dr. Carey.
Where did you have yours done?

I just had my MACI surgery a few days ago. Prior to that I had my knee scoped to see how bad the cartilage damage was back in Dec Ď17.

Back in 2009 I had a nasty fall that started causing me pain. I tried to ignore the pain as much as I could but it started getting to the point where I could barely walk without being in a tremendous amount of pain. I saw several doctors ove the past 8 years and they all kept telling me that the pain was all in my head. I had 12 steroid shots in the last 3 years to help manage the pain. I recently got a new doctor back in Nov and she listened to me about my pain and immediately referred me to a specialist a few hours away from home. The specialist ended up finding a stage 4 chondral defect (cartilage was gone all the way down to the bone) under my right knee cap-I had zero cartilage to help fusion any type if impacts my knees would take.

The MACI surgery I had was a little bit more involved though. The had to cut my Tibia and move it so the groove at the top of the bone allowed the kneecap to glide over it properly. They also had to put a new tendon in that went from the top of my knee cap to just inside my leg to keep the knee cap from constantly falling off track.

Iím not going to lie, the post surgery pain is intense and the pain meds they give you only take the edge off but they do make you sleepy. 

For me the surgery was worth it even though I have a long road to recovery ahead of me.
If you have any questions, feel free to reach out to me.

Offline lauren/ACI

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Re: New here--surgery #1 on 2/5
« Reply #5 on: April 27, 2018, 08:23:46 PM »
Hello Andie,
I am 7 months post ACI/MACI. I had surgery with Dr. Carey on 10/23/17. A little history first before I dive in to what you should be prepared for. I am a female, 38 yrs old living in PA.

 In Summer of 2016 I was having sharp stabbing pains in front of my knee while working out and even daily activities. Prior to my all knee drama I was very active, ran, walked and did various other cross training 5 to 6 times per week. I originally was diagnosed with patellar tendonitis in my right knee. Per My first surgeonís orders I rehabbed 2 x times a week for 3 months. Unfortunately, the pain continued. I went back to my first surgeon and he ordered a MRI of my right knee. It should a partial tear of my patellar tendon also showed some minor cartilage defects. He suggested surgery and told me he would fix both the tendon and then scope my knee to smooth the cartilage. Little did I know this would be the demise of me. In January on 2017 I underwent surgery for the repairs and unfortunately only thing he fixed was my tendon (well maybe.. more to come on that later). Again did 5 months of PT, and still was having tons of pain, swelling, even worse than before.

In the late spring in 2017 I finally decided to get a second opinion, I friend of mine recommended Dr. Carey. She works as a physical therapist here in PA. I went to Dr Carey and he reviewed and discussed my MRI, and symptoms I was having. He believed that my first surgeon over looked some other issues with my knee. He believed that I was a good candidate for a ACI due to the defects that were noted on the MRI. I also seemed to have a partial torn medial meniscus which we decided would be treated surgically in 2 phase of ACI.

In August of 2017, I underwent the first stage of ACI procedure. This was pretty straight forward, it basically was biopsy to harvest cartilage for 2nd stage.  His findings were:
1.   Small medial meniscus tear- 1.0cm in length meniscocapsular separation near the junction of the body and posterior horn. 
2.   Medial Fermoral Condlye- A focal articular cartilage defect (Grade IV) which measured 2.4cm X 1.5cm
3.   Patella- Some diffuse grade II chondral changes about the superior ascept.
4.   Medial pilca- Minimal Hypertrophy & synovial hyperemia.
I recovered in 2 to 3 days and was back to my normal activities.

In October 2017, I underwent the final stage of the MACI. First off, I will say be prepared. You will be completely helpless for the first 2 to 3 weeks. Everything will be like you are running a marathon. Make sure you are prepared, and get ready to lay around a lot. I donít have the surgical report in front of me, but basically he repaired the articular cartilage defect of my medial femoral condyle along with my medial meniscus and he trimmed my Hoffa fat pad.
My advice is this, expect that this will be a long recovery. As I stated, I am 7 months. I still have pain, and I lost about 10 degrees of motion. My knee is still stiff, swollen and achy most every day. I am no where near able to do the activities that I once did. I do hope that will change but when then say 18 months, they mean it! 

Some milestones for me that will help you put it into prospective.
1.   I had 90 ROM at day 4. It then came to a halt and I am still working on it. I am currently at 135 on my own and 145 if my therapist pushes.
a.   I used a CPM machine for only 10 days, because get readyÖ I brought home bed bugs either in the machine or from the hospital. It was a nightmare to have to go through home treatments while trying to recover.
b.   Major advice, inspect all rental equipment and change your clothes and wash them immediately when you get home from hospital on hot water. A BIG mistake I made. I jumped right into my sleep number bed and 10 days later found one on my bed. I had to spend 3K to have my home treated. Thank goodness, I caught quickly though. Philly is dirty!!!
2.   I was partial weight bearing at 6 weeks, then one crutch one weeks 7 & 8. From there, I went to a cane until weeks 12 or 13.
a.   Walking will be painful at fist.
3.   Take the medicine that is subscribed. And get the nerve block after surgery. I tried to be a hero and had to be put back under after surgery because I was in so much pain.
4.   Get a Polar Cube machine, and freeze water bottles, easier to fill and carry around.
5.   Get a backpack to help carry things around
I can go, on and on. If you have any questions let me know. I can share my experience. Its been very emotional and physical experience. I only wish I knew someone prior to surgery to better understand the seriousness of the surgery. Its bigger than TKR. Hope you recovery well and get back to the things you love!

Best Regards
Lauren    

Offline andreaemshoff

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Re: New here--surgery #1 on 2/5
« Reply #6 on: May 05, 2018, 01:44:37 PM »
Thank you so much for the reply!! This is all excellent advice. There are a couple people around 7 months post-op in a Facebook group Iím in ó MACI Support Group ó and they have said similar things. Lots of activity there if you need more support.
Did you have a good experience with Dr Carey as a surgeon? He seems to be very well regarded.
Iíve had near daily pain in my knee for 2.5 years now and ready to get it taken care of. As fate would have it, this past week has been the best the knee has felt jn years which of course makes me rethink everything!!
Thanks for the heads up on the bedbugs. Thatís horrible. Did you get your cpm from Philly? They suggested I use a local company as I am in Virginia. I never would have thought to change my clothes right away but this makes me want to burn my clothes. Ha!!!
Did you stay overnight? They told me I will go home same day, but who knows. Thank you so much for your reply!!!!
Andie

Offline lauren/ACI

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Re: New here--surgery #1 on 2/5
« Reply #7 on: May 08, 2018, 04:00:32 PM »
Dr Carey is a wonderful surgeon and his PA Sabrina is great too! You are in good hands and hopefully things will go smoothly for you! As for the CPM machine, I live 40 minutes outside Philly, the machine came from a place near Philly but never the less just inspect it really good. Ask them to open it up, thatís where they would hide. And seriously, not a bad idea to burn your clothes!!! LOL, as long as you change your clothing and take bear min to hospital you should be ok. I had my Surgery at Pennsylvania Hospital on a Monday. I believe Friday surgeries are in a different site. I did not stay the night but I was at the hospital for 12 plus hours the day of surgery.

I just requested the support group on FB. I've actually seen some posts from Nicole the admin before. Funny enough, the surgeon that did her knee botched me the first surgery I had. If you have any question let me know! Glad to share my experienceís thus far!

Regards

Offline Kaleigh1107

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Re: New here--surgery #1 on 2/5
« Reply #8 on: June 04, 2018, 09:57:50 PM »
Hi Everyone,
    I recently underwent the MACI procedure in April to repair a large patellar lesion of the right knee. The cartilage damage was caused by repetitive patellar subluxation and a failed lateral release that I had in 2014. Along with the MACI I had an MPFL reconstruction to protect the implant from wearing away. At almost 2 months out I am 100% weight bearing with the brace locked in full extension and have achieved 120 degrees ROM. The ligament graft felt extremely tight up until about two weeks ago but now it feels much better. I do experience some creaking and popping sometimes when straightening my leg but it isnít painful. The first month of recovery is extremely frustrating because physical therapy is very slow going...but overall I am happy with the outcome. I am still at the beginning of my recovery but if anyone has any information about what to expect in the upcoming months please share them!

Thanks!