Preparing for MACI Surgery

There are a number of things to consider and plan for when having MACI surgery, of which have varying degrees of importance.  Some are more for comfort while others are vitally necessary.  I hope the following are helpful!

1.  HELP!  My Mom came to stay with me for four nights.  In general, she provides a source of comfort because she is the best in the Mom game.  But she also helped with rudimentary tasks such as getting me food and going to the grocery store.  It was also nice to have someone around "just in case."  I was relatively "OK" when I left the hospital but everyone is different and I would recommend erring on the side of safe versus sorry.  For example, one blogger mentioned waking up in the middle of the night to use the restroom and noting feeling profoundly dizzy from the medications.

2.  Toilet Riser/Stool:  I purchased a five-inch riser seat for my bathroom.  Your leg will be locked in a brace for many weeks and sitting down may be difficult.  I ultimately have not needed to use the riser seat because the set up of my bathroom is such that I can simply lower myself down by essentially doing a tricep dip because my sink is right nearby.   Others may not have a similar set up or the upper body mobility.

One blogger had this set-up in her bathroom.  My sink was right next to the toilet so I could push myself up without needing an armrest.  

3.  Shower Chair:  You will need a seat for the shower.  This is a MUST.  Standing in the shower will be nearly impossible and if you do not have a walk in shower, things can be tricky.  For safety reasons, you should absolutely have one.  Basically, I get in the shower with my brace on and then take it off and start the water.  

This is the chair that I purchased.  The main thing I needed was the two arm rests to help lift and lower myself into the chair.

4.  Entertainment:  YOU WILL GET BORED.  I bought an iPad before surgery so that I will have access to books, magazines and videos essentially at all times.  I also have two smart TVs.  If you can get your friends' and family members' log-ins for streaming (legally of course), do it.  Get recommendations for shows, movies, books, etc.  

5.  Physical Activity:  Get yourself in good shape before surgery.   If you need to lose some weight, lose it.  If you need to work on strength and conditioning, do it.  MACI surgery will take a toll on your body and months of inactivity following the surgery will lead to atrophy.  Additionally, one of your main goals in PT following surgery will be regaining quadricep strength in your surgical leg.  The stronger it is going into surgery, the quicker it will "bounce back" after surgery.  

6.  Balance/Yoga:  You will be on crutches for many weeks. During this time it is essential not to fall or stumble on your bad leg since the graft is very fragile.  Having good balance is of the utmost importance.  It highly unlikely that you will never stumble or trip while on crutches so having the ability to balance will really help with this.  If you have never been on crutches make sure to practice beforehand.  However, if you are at the point of doing MACI surgery, you have problem been on crutches before.  

OK, you do not have to become a full blown Yogi, but you get the point.  Work on balance however you see fit. 

7.  Return to Work:  I may make this the subject of an independent post because of how much it affected my life.  I am an attorney and I work a lot of hours.  However, I will be taking one week off of work followed by two weeks of working from home.  My employer purchased a computer for me so that I can work from home remotely.  After discontinuing pain medications, work to some extent gave me something to do but at the same time was an added pressure on making sure I sat in my CPM, did my exercises and iced.  

This is me at the office; i.e. sitting on my couch in the CPM and reviewing records on a lap top.   

8.  Driving:  I live in Chicago and do not drive.  Obviously, after taking pain medications you cannot drive but I have heard that people are comfortable to drive around the 3-4 week mark.  My graft was on my right leg (driving leg) so it could be longer in that case.  

9.  Pain medication:  Take at the first on set of pain.  Don't wait until it gets really bad.  It is much harder to get rid of pain when it is very uncomfortable because the pain meds take awhile to work.  So far, my experience has been different than most others.  I have read blogs where the patient was taking pain medication for months.  I took it for 4 days around the clock and then only took it in the evening for two additional days.  I have taken it sporadically since then.  Pain is a highly subjective thing so experiences will differ depending on the patient, location of the graft, co-morbid conditions in the knee, etc.  

10.  Have a social network:  Invite friends/family over.  Although you may feel bad and think you look terrible (I didn't shower much in the beginning) don't turn down social visits.  They definitely will lift your spirits.  My mom stayed with me for a few days after surgery and then a friend came to visit from Michigan.  I also have friends in my neighborhood that stop by.  Again, my experience has been "good" so far and I was able to go out to dinner (two blocks from my apartment) ten days after surgery.  The following night I even went bourbon tasting with a friend.  Yes, I was off the drugs at that point. 

11.  Wheelchair:  See if your insurance will cover a rental.  Some people find it handy and it can assist with your ability to get out depending on your recovery.  Thus far, I have not been in a situation where I would need one. 

12.  Stairs:  If you have stairs in your house I recommend moving to one floor.  Stairs are doable on crutches but if you can avoid them, it's better.  It's not worth risking a fall and damaging the graft.  I honestly could not fathom going up and down stairs on a daily basis.  

13.  Considerations for Women:  I got my legs fully waxed before surgery and fully stocked up on dry shampoo.  Frankly, even when you can shower, it is a big task and feels exhausting.  At the same time you do not want to feel utterly disgusting.  Small things can help you feel more comfortable even when you are not and for me, not having hairy legs was a small comfort.  Additionally, following surgery I was instructed not to take NSAIDs as there is a concern that they may interfere with graft adhesion.  This meant that I could not take ibuprofen for menstrual cramps and that has been an issue for me.  I caved one night and took some but the following three days I just took the norco I had been prescribed.  This helped with the cramps and lasted through the night so I could sleep.  

14.  Prepare your home:  I essentially prepared for surgery as if there was a zombie apocalypse upon me.  Stock up and every day items such as toilet paper, kleenex, etc.  Stock up on non-perishable foods too.  Ensuring that I had everything I would need resolved some stress I had going into surgery.  While I felt like I spent a ton of money, the good news is that you are really buying things that you will end up using so you really are not wasting money.  

15.  Your Doctor:  Make sure you are comfortable with your doctor.  This really goes without saying but it is of the utmost importance.  MACI, and its predecessors like ACI, are relatively new-ish procedures in the United States given that they did not receive FDA approval until a few years ago.  As such, there are not a ton of doctors that perform this surgery; i.e. not every orthopedic surgeon will perform this particular procedure.  Additionally, I believe you should personally feel comfortable with your doctor because the road to recovery is a long one and you want to be working with someone that you trust, can communicate with, who answers your questions and you generally like being around.  To be blunt - you're going to be physically compromised for some time and if your doctor is a jerk it is just going to make those visits all the more frustrating.  My doctor is Dr. David Guelich with Chicago Orthopaedics and Sports Medicine.  There are not enough wonderful things that I could say about him.  He is profoundly intelligent and talented and on an interpersonal level he always makes me feel comfortable.  Unlike some physicians, he embraces my questions and takes the time to make sure I can make informed decisions.  I never felt pressured to go forward with surgery and he has always tried his best to give me options.  And, while it may not make a difference to some, he is just a nice person to be around and does not exude the superiority (and narcissism) that other physicians do.   

Making the Decision to Have MACI Surgery

Deciding to have MACI surgery was pretty easy:  I wanted to play tennis and without MACI surgery, that was not going to happen.

While it sounds quite black and white for me, it may not be the same for everyone else.  For me, I had a number of factors that weighed in favor of having surgery aside from my desire to rip fuzzy green tennis balls across a net.

Of note, the following factors weighed in favor of going forward with surgery:

• Age:  I was thirty-five years young at the time of operation.  
• No co-morbid conditions:  Aside from the cartilage defect my knee is remarkably intact. 
• Weight:  I am generally of a healthy weight aside from my ever present desire to "lose five pounds."
• Personal Commitments:  I am not married and do not have children meaning that I can devote a lot of time towards rehabilitation without concern of detracting from other personal commitments.
• Professional Commitments:  The law firm I work for has been pretty understanding about the procedure and time I will need to take to rehabilitate this injury.  

I should add that I am likely in the category of people who technically fall within the category of "purely elective" when it comes to this surgery although it never felt that way for me.  What I mean is that pre-surgery I had a pretty decent activity level.  Days before surgery I "ran" four miles.  (The quotes around the word ran are intentional as I would not want to overstate what this looked like).  I was working out at least 4-5 days per week.  I could complete relatively challenging HIIT workouts and I was doing challenging pilates workouts at Studio Lagree.  Side note - if you have not tried the megaformer at Studio Lagree, do it:  http://studiolagree.com.  Chicagoans, you're welcome.

Studio Lagree is THE spot to go to in Chicago for reformer pilates.  The classes are so challenging (in a good way) and are perfect for anyone with a knee injury because they are non-impact.

However, I was not able to do the main thing I wanted to do:  tennis.  But adding to that was the fact that some routine daily tasks were becoming increasingly more difficult.  For example, walking down the stairs to the subway to work hurt.  And, if I was wearing heels - ugh.  Getting into an uber/cab was difficult, trying to get cleaning supplies out of a low shelf hurt and getting up off the floor was the worst.  While my desire to play tennis overrode every other consideration, the fact of the matter was that this injury began to affect many aspects of my daily life and it was only going to get worse.  

In theory I could have continued my activity level and life but it was not what I wanted for myself and I was really not happy about it.  While going to pilates was fun, I missed tennis on a daily basis and was tired of having to mentally prepare each time I encountered a flight of stairs.  So, I scheduled surgery and never thought twice about it.  

My Background, Injury and Course of Treatment

Ever since I can remember, I have loved sports.  My Dad is a sports junkie and as a result, sports have always been a big part of my life both as an athlete and as a spectator.  In high school I was a two time all-state track and field athlete and went on to run track at Central Michigan University (Division 1).  For one reason or another, high jump just came naturally to me.  

Even after leaving competitive athletics, I have generally always made fitness a priority.  Alright, technically that was not true my last year of law school but give me a break, law school was time consuming.

Fast forward a few years, I move to Chicago and begin my professional career as an attorney.  Once I settle in, I really started to miss competing in any sport.  I began thinking about how much I wanted to learn how to play tennis but never did.  I figured my speed, agility and decent hand/eye coordination would translate easy into the game.  But for some reason I never tried it out. So, on my 30th birthday I decided it was time to finally learn to play.  I took one lesson and was hooked immediately.  

I played a few times a week for roughly three years when I started to feel some pain in my right knee.  I began noticing the problem in early March 2016.  As an athlete, you get bumped and bruised along the way so I just brushed it off as something that would work itself out; i.e. rub some dirt on it and walk it off.  Over time, the pain got worse and was more frequent.  I had a trip planned to Greece in June 2016 so I figured that my two weeks overseas would give my knee enough of a break that when I returned, I would be fully recovered.  That did not happen.

I first sought out treatment in July 2016.  Given my symptoms, I was initially diagnosed as having Jumpers/Runners Knee which is a general diagnosis for patella-femoral pain.  I was instructed to start physical therapy which I did for approximately two months without any relief.  As such, I subsequently had an MRI which revealed inflammation in the joint for which I was given a steroid injection.

The injection provided some immediate relief and I thought I was healed!  I felt the best I had felt in months.  I even went to Arizona and played tennis at an awesome resort with The Tennis Congress.  However, a few weeks later I was back at my doctor's office asking him to do another steroid injection.  My request was politely declined and he explained that at this point, surgical intervention would be necessary.  

In December 2016, I had arthroscopic surgery to essentially clean up/out any inflamed or damage cartilage and to remove any plica that were present but not visible on the MRI.  My doctor also advised that he would take a small sample of cartilage from a non-weight bearing part of my knee "just in case" we had to do another surgery.  Following surgery, again, I went to physical therapy to rehabilitate the knee.  

Here is where we begin the profoundly frustrating part of the story.  Following my surgery, my knee never felt better.  I can confidently state that I worked hard and definitely fulfilled my end of the bargain in terms of rehabilitation and a home exercise program.  Frankly, I like to work out and I was desperate to get my life back so I was diligent in doing everything I could in terms of getting quad strength back so as to regain proper patella traction.  After a few months, I was still symptomatic so I returned to my doctor and he suggested doing a series of three hyaluronic acid ("HA") injections.  

The HA injections restored some knee function but did not relieve my ultimate symptoms.  I believe the HA injections provided some general knee lubrication which relieved some symptoms that were a consequence of surgery, as opposed to the cartilage injury, which was helpful but did not ultimately resolve my injury.  

I continued to do physical therapy and a home exercise program and even did a second series of HA injections but it was obvious that conservative options were not going to get me back on a tennis court any time soon.  

So, as you guessed, I elected to go forward with the MACI procedure.  I had surgery on June 5, 2018.  

Introduction and Blog Purpose

Hello!  My name is Sara and I have a love for Indian food, travel, whiskey and sports.  But above all else, I love playing tennis.  I started about five years ago and was hooked immediately.  My background in track and field and softball easily translated into a decent tennis game.  And, let's be honest, the skirts are adorable :)

I want this LBD more than anything.

 Consequently, it is my love for tennis that likely is the reason that I recently underwent matrix-induced autologous chondrocyte implantation ("MACI") surgery in my right knee.  The cartilage defect I have/had was on my patella.

My sole reason for starting this blog is that the decision to have this procedure, or its predecessor ACI surgery, is a big deal.  It is a big commitment and will test you both mentally and physically.  When I was in the process of deciding whether or not to have the surgery, like most people, I began googling every combination of related search terms that you could think of.  In fact, I should be awarded an honorary degree from WebMD for how much I've read about patella femoral injuries and their treatment.  I digress.

What I learned is that there is not a ton of information from the patient's perspective about the procedure and subsequent rehabilitation.  I truly believe that my doctor did a great job ensuring that I understood the commitment I was making and to set realistic expectations about the outcome; however, I wanted to know details, like day-to-day details.  Thus, I turned to the internet and found some blogs that I found to be helpful.  In fact, if you find yourself reading my blog, I highly recommend that you read Megan's too:  http://megansacicarticelsurgery.blogspot.com

Lastly, I should add that this blog will simply explain MY surgery and recovery.  I emphasize that point because as cliche as it sounds, everyone is unique.  Your defect, surgery and rehabilitation will be different than mine and everyone's outcome can be affected by a myriad of different factors.  I just hope that this blog can provide a general overview of what to expect and hopefully a few helpful considerations to keep in mind.

I hope you find this blog helpful.