Alisson's MACI Surgery :)

[AlissonAus]

Hi everyone!! 

So before I underwent my MACI surgery I was really anxious and nervous about what was going to happen to me, and I really wanted advice as well as what to expect from this surgery, so I’ve decided to write a journal about my experience with MACI and hopefully help someone else out there prepare for surgery. So I’ll start with the boring stuff, I’m 21 years old, I live in Australia, and I had a 2cmx1.5cm full thickness cartilage defect on my left patella. I had pain, swelling, stiffness and the “give way” sensation in my knee. For years I had pain and I saw a few doctors, but no one seemed to know what the problem was. I’ve been told everything from “growing pains” as well as one doctor even telling me “you’re too young to have serious knee problems” needless to say I never saw him again.

I moved, and saw a new GP who referred me to my current surgeon. My surgeon is really great. After heaps of visits and discussions about my knee, I had an arthroscopy and my surgeon decided that MACI would be my best option. So here I am, waiting to drive to the hospital to undergo my operation.   

DAYS 1-3

Went into theatre at 9h30am Tuesday, came out about 2 and a half hours later. Day went by in a blur, didn’t really notice the pain. (probably thanks to the Fentanyl pump lol). Was basicly asleep the most of the day. Slept okay on Tuesday night, the brace they put on in the theatre was just really uncomfortable and I had a high fever. Wednesday morning my surgeon came to see me, told me everything went perfect. They took me off the Fentanyl pump, gave me oral pain killers and the physio people came to fit me with the brace I’ll be wearing for the next couple of weeks. Felt good enough to go home on Wednesday night, even though my doctor suggested I stay a second night. What can I say...I HATE hospitals. Thursday was the first day I spent back home, and I actually coped fine. Only took 2 paracetamol-codeine tablets (ProDeine Forte) and spent the whole day watching movies and icing my knee. From everything I heard and read about MACI, my pain is really much better than what I thought it was going to be. It does hurt quite a bit, but it’s not that bad, especially if I stay completely still. I’m just hoping that the pain doesn’t worsen over the next couple of days. What’s getting to me at this stage is how amazingly annoying this massive brace is :/

Any comments/questions/ replies are more than welcome!

Alisson 

[AlissonAus]

DAY 4
Today was a pretty bad day for me. I was really tired, and in quite a bit of pain. I mostly iced my knee, and kept it a bit elevated, although I find elevation mostly too uncomfortable. I developed really bad muscle pain in my thigh, did anybody else maybe experience this?

DAY 5

Woke up in the middle of the night with a very swollen leg, and had to loosen the straps on the brace a bit. Pain is awful. I cannot keep my eyes open, I woke up at 11am, went back to sleep at 12 and woke up again just after 5pm. My mum made me eat, don’t know about you guys but my appetite is just gone. A phone call from my best friend really lifted my spirits today! Was a real mission to wash my hair today, but felt so much better after I did. Having a cup of tea now, hopefully my leg settles soon. The incision site feels itchy too haha I’m dying to peel away the stickers and have a look but my doctor was very strict about not touching it haha.  Anyway….I’ll keep y’all updated  xxx

[AlissonAus]

DAY 6
Felt a lot better today, good enough that I took no pain medication. My knee was just very swollen, so I iced it a lot. That ice pack is seriously becoming my new nest friend haha. Had a bit of a weird sensation where my incision is though, felt like someone was pricking me with a needle. Not really painful just weird, but I guess it’s just that are freaking out a bit. I haven’t seen the actual incision yet, my knee is still wrapped up in a bandage, I’ll see the scar next week when I have my post op appointment. 


DAY 7

Took no pain medication yesterday, BIGGEST mistake ever. Today was pure agony. So I’m back on the meds, and plenty of ice as my knee was a bit swollen this morning. Don’t know why I thought I could wane myself off the meds already. I’m really hard on myself with this knee sometimes, I guess I should just allow myself to get better slowly. Felt sleepy today, spent most of it on the couch. I hope this diary is helpful to someone out there....and as always, any comments are welcome 
A xxx

[AlissonAus]

DAYS 8-10.

Before the operation I just considered the physical aspect of things, like how much the knee is gonna hurt, how ugly the scar will be ect. Something I was not prepared for was the whole mental aspect. Not being able to do anything for yourself gets a bit overwhelming at times doesn’t it?  Although I am keeping a positive attitude about it, because let’s face it things can only go better from now on The pain really isn’t too bad, and my knee looks great. It’s almost back to normal, just a tiny bit puffy. Seeing my doc on Monday, I’m keen to see the scar. I’ll upload a pic or two after they unwrapped my knee lol. It gets annoying to sit around the whole day, but I’m so paranoid about damaging my graft that I gladly keep still. Ice is still my best friend, and I’ve figured out a way to elevate my leg so that I don’t find it painful. I prop a pillow just under my ankle and it feels great. I’m still on the ProDeine Forte tablets, at this stage still taking two a day, and sometimes during the night I take one Endone tablet. So things are slowly starting to improve. Write again soon.A XXX

[AlissonAus]

Hey everybody 

Sooo I had my two week post op with my doctor today, and he was really impressed with my progress! I am feeling very happy and positive at this stage! I have stopped taking pain meds for the last three days, and the only complaint I have at this stage is being hot in the brace, living in Australia is like living next to the sun lol, and I have a lot of trouble sleeping as this brace is super uncomfortable. But apart from that things are great. Two weeks down, ten to go! Have I mentioned that I just love this board? I love reading everybody's stories and progress, and although I'm new to the board and haven't interacted with anyone yet, it's been a great help just to know I'm not alone. My friends are wonderful and they visit all the time, and my parents have been amazing taking care of me and driving me around,  and my mom helping me get dressed and washing my hair... but it's hard to explain awful knee pain to someone who doesn't really get it. That's why I just love reading on this board, I feel at home haha.
From today forward I will only be posting weekly updates, unless something exciting happens 

So I saw my scar for the first time today, my doctor said it was "gorgeous"... it looked pretty disgusting to me, but hey who am I to argue right  The photos he showed me from when they opened up my knee was really gross. The defect was apparently quite a bit larger than the diagnosis on the arthroscopy, I don't know why. He said when he opened me up, he was reminded of when he once picked up a clam at the seaside as a kid. He said it looked all nice from the outside, but when he lifted it, it was all gross and mushy and yucky underneath. That really made me laugh. He can be very strange sometimes with funny stories and random comparisons, but most of the time he is just really nice and funny. He always tries to get me to laugh.
I am going to attempt some photos now but I think the picture sizes might be a bit too big, so I'll maybe have to ask my brother to compress them for me (yes I am a bit technologically impaired  ) so if this doesn't work tonight they'll be up soon. I'll put  a close up of the scar and then one of both my legs to compare the swelling.

I hope everybody has a wonderful, pain free, and happy week 
A xx

[AlissonAus]

WEEK 3

So I am 3 weeks post op now. Things are going okay. I've been really sore the last couple of days. I'm getting really bad muscle spasms in my thigh at night, it absolutely kills. Knee is still a bit swollen. Woke up with a blue foot this morning, kindof freaked out haha. After I moved around a bit it returned normal. So I'm just walking a bit more, wriggling my toes and elavating again. Ice is still my constant companion. I'm currently able to get 30 degrees of flexion. My surgeon hopes to achieve 90 degrees by 6 or 7 weeks. Don't know if that will happend though, my knee is so stiff and it feels like it's gonna burst open when I bend it a bit...

This really hasn't been fun, but I guess it will be worth it

A x

[AlissonAus]

WEEK 4

This week has been a real struggle. I had heaps of pain. I haven't had a decent night's sleep since the surgery so I'm feeling very tired and cranky. Knee is so stiff, and the scar is really really painful. Its really dry and flaky too, so much so that I'm rubbing it with Bio-Oil three times a day, it just sucks it up!! I am currently able to get to 50 degrees flexion, need 20 more degrees before I see my doctor in little more than a week. I have been having a real hard time emotionally this week. My friends have been great though, they forced me to take a drive with them and grab some pizza over the weekend. It was really hard to walk around with the crutches and gosh the way people stare, I wondered if I maybe grew a second head haha. My feet are really cold, and the foot on the operated leg keeps turning blue, I am debating whether or not I should phone my surgeon or just wait it out another week until I see him again. I am really, really over this and I still have such a long way to go. Makes me depressed just thinking about it lol.

have a good week people
A x

[kneeproblems:(]

hey

im 21 as well and live in australia and am booked to have MACI done on my knee in about 6 weeks. my defect is not on my platella however, and i only experience very minor knee pain atm but think an early strike at the problem is better than waiting for the problem to strike me down in time! im currently trying to get myself fired up mentally for the op as i know the recovery period is going to be slow, frustrating and difficult.

how is wearing the brace following the op? can you still ice your knee with it on or do you need to take it off? how significant is the swelling?

all the best for further recovery!

ps did you have any problems with the government withdrawing private health rebates?

[AlissonAus]

Hi there

It is probably a good idea to get it done sooner rather than later aye. My doctor always tells me its good to have "being young" on my side. First of all, good luck for your surgery, it is not a nice experience. The recovery is really slow, and you'll see the most frustrating thing is not being able to do anything for yourself, and they never really tell you how much using crutches suck 

The brace is really uncomfortable unfortunately. What made it easier for me is the fact that patella lesions are allowed to partially bear weight post op, I know other defects are initially restricted to bear weight. The brace is also pretty big. It's from my ankle to my thigh. If you want to see what the brace looks like just  google "range of motion brace" it'll give you an idea of what to expect. I usually loosen the straps on the brace to ice my knee, but I have also iced with the straps closed, the brace is open over the knee so that makes it easy. My swelling was pretty bad. I'm currently 4 weeks post op and my knee is still gigantic.  In my earlier posts I said my swelling wasn't too bad, but that was before I actually took the brace off and saw the swelling. The brace is kindof deceptive that way because it covers a lot of your leg, hiding a lot of the swelling. Although the swelling does differ from person to person, you should expect some significant swelling, it is a pretty invasive procedure. It is also pretty painful, but they gave me awesome painkillers so pain shouldnt be too much of a problem. I also bruised quite a bit all over my knee area and at the back of my knee aswell.

No I was lucky with the health care rebates, they still covered it when i got my operation which was early January. My doctor did tell me about the health funds withdrawing though, that totally sucks.
 
Good luck with your preparation!

A 

[kneeproblems:(]

wow i saw some photos of the braces and they are huge! guess they are needed to protect the graft. yeh im expecting some huge swelling as well, when i first injured my knee causing the defect my knee at least tripled in size and due to the invasive nature of the procedure itll probs do the same again.

how big is your scar? for some ppl they are relatively small while for others they are huge, i guess it relates to the position and size of your defect. have they given you any indication of how long itll be before you can/are allowed to walk normally? this is probably the most daunting part of the recovery for me.

hope the recovery is getting better!

[AlissonAus]

Hi!

My scar is 10cm long and just off the centre of my knee. It looks big to me, but I'm not really familiar with what is considered "large" in knee surgeries but I guess 10cm isn't too small. I think they do differ in size according to the defect though. I don't when know I'll be walking normally again, that part scares me too. I do know that I'll be wearing the brace all the time up until 12 weeks post op. Then I think I'm allowed to weight bear as much as I can tolerate. I don't know if you have read up about MACI online but the MACI website is  a good read, it's just: www.maci.com it talks about the procedure and how they grow the cartilage ect. There is also a video you can watch if you want hhttp://link.brightcove.com/services/player/bcpid19073815001?bctid=17802266001 .
You can also have a look at this rough rehab guide if you want: http://www.qcos.net.au/pdfs/maci_patellofemorel_joint.pdf it will give you an idea of what to expect from rehab. Where in Australia are you? I'm in Brisbane.

Also you should invest in a good sturdy shower chair, you can get them from Terry White Chemists. Showering is such a mission, I'd be lost without mine. Also some loose fitting short shorts. It's hard getting anything over the brace.

[AlissonAus]

My scar. Quality is not so good because the uplaod size is so small. Took it with my webcam, phone and camera's pics were too large. Gives an idea about the size of the scar though

[kneeproblems:(]

yes im definately going to invest in a shower chair, showering on one leg is not pleasant or easy(as i learnt after my last knee op 8 months ago)

thanks for the photo, i reckon ill have a similar size scar as you do(havent asked my surgeon how big itll be) however if the surgery works ill accept having some form of scarring on my knee!

my surgeon has said to me that theyll aim to have me walking normally by three months but has said that it may take longer than that.

im from Adelaide

has the op affected your work/study etc much? have you needed someone there to help you out in day to day living stuff? my mum has said shell take a few days of work to help me out

[AlissonAus]

Kneeproblems:
 Yeah it is really affecting my day to day life. I'm obviously not able to drive but between parents and friends i do have a few chaffeurs  In the first couple of days I even had to ask my mum to help me get dressed. Walking with crutches sucks too because you can't carry anything. So not able to carry a plate of food for yourself, pick things up ect ect. I've gotten used to it but it really sucks in the first couple of days. You're really going to need the support of family and friends. I know it sounds dramatic but I don't think this (or any big operation for that matter) is something you can do on your own. Sitting at home day in and day out also gets depressing, and with pain and discomfort too, its easy to get really cranky. My friends make me go out with them atleast once a week, even if it's to get a video or just a drive. As for study, I enrolled externally this semester, as I knew i wouldn't be able to make it to campus for classes.

WEEK 5

I just got home from seeing my surgeon. I'm on 70 degrees flexion and will stay at 70 until I see him again in 2 weeks. I lost 10cm quad circumference, which is a bit scary! He got the physio to see me, and the physio gave me the best massage ever!! I attempted a leg raise, failed epically, tried another three times and eventually managed to get my foot in the air, whoo hoo! The physio gave me a few exercises to do, and I'm looking forward to getting my mucles back in shape. My doctor said I'm doing great and was really pleased with me. I don't really have any complaints. I'm doing really well. I don't have any pain in my knee anymore, it just hurts when I bend it, and the scar is really tight, but rubbing it firmly with Bio-Oil does help. Oh I've had heaps of muscle spasms in the last week, so my doctor told me to take magnesium pills, massage firmly with Deep Heat, and apply some heat to the sore muscles...
Anyway I hope everyone is having a good week
A

[AlissonAus]

WEEK 6

Things haven't been too bad. The exercises my physio gave me ( straight leg raises and tensing the quad muscles) are exruciating. Not trying to be dramatic but that is the only way I can explain them, especially the leg raises. I'm still losing an awful amount of muscle, my leg is already a lot skinnier that the "good leg". I've been extremely tired this week. Seeing my doctor again in a week's time, at this stage I'm seeing him every two weeks until he says I don't have to come in anymore. Still only 70 degrees flexion, and muscle spasms are still awful. No amount of rubbing or magnesium or heat is helping.  I've also been getting heaps of hip pain from not walking right and I still get blisters on my hands from the crutches....
Good news is I'm officially halfway through the 12 week "in the brace and on crutches" period. Whoo hoo.
That's it from me!

A