Monday, January 19, 2009

Tips for ACI Patients

I wanted to pass along some observations and lessons learned during these initial weeks to others who might be planning ACI knee surgery. In no particular order, here they are:

Stockpile tons of reading material and movies. For the first 7-10 days, you’ll likely spend most of the day in bed. To pass the time, I plowed through 2 books and tons of feature articles I had gathered in anticipation of the surgery. I also watched most of Season 1 of Mad Men, as well as a couple movies with Christina once I was able to move to the living room couch. I probably would’ve watched more movies if the portable DVD player hadn’t broken down.

Get married. I can’t imagine going through this experience without a spouse, or at least a very serious significant other. You’ll need someone to change ice packs, load ice into your ice machines, help you with your brace and the CPM, fix you dinner, and generally fetch all of your stuff. In the early days, you’ll also need help going to the bathroom, as well as showering. While a parent might love you unconditionally, I don’t think you want to pee or wash your private parts in front of Mom. You will quickly lose all dignity. Don’t fight it. Just make sure you have someone with whom you’re comfortable enough to let down your guard.

Get a laptop with WiFi. My laptop hasn’t left my bedside table since the surgery. I use it for everything, from surfing the web, to blogging about the surgery, to working part-time from home. Staying connected has been critical to maintaining my sanity.

Exercise and stretch before the surgery. Your body will suffer tremendously. It’s inevitable. But the recovery will be easier if you’re in decent shape beforehand. Plus, the intense rehab exercises won’t be as much of a shock to your body if you’re accustomed to working out hard. Looking back, I wish I had added some of the ACI rehab exercises to my normal workout routine before the surgery. I also wish I had spent more time improving my flexibility. My hamstring actually hurts worse than my knee.

Provide work with a realistic assessment of your work load and expected absence. I gave my bosses at least 4 months’ notice about my surgery and anticipated absence. I outlined the status of each of my cases, and all upcoming deadlines. We agreed which case I would hold onto, and which case (or task) needed to be transitioned to others. My office has been great about my situation. I told them I likely wouldn’t be in the office for at least 1 month, and possibly 6 weeks. Every patient recovers differently, of course. Some ACI patients have returned to work 2 weeks after their surgery. Even though I have a traditional “desk job,” there’s no way I could last an entire day at the office right now. My knee still occasionally aches and I get tired very easily. Also, I can’t drive, and can’t lug my workpapers back and forth between home and the office. Plus, there’s no way I could squeeze in the 6-8 hours daily I still need to spend in the CPM if I went to the office. My boss agreed to let me work from home as often as I’d like, as long as I send him a detailed summary of how many hours I worked and what I accomplished. I’ve also remained accessible via remote access email and cell phone.

Find a nearby PT with ACI experience before the surgery. This is an obvious point, but, after reading blogs by other ACI patients, it seems like some overlooked it. ACI is a highly specialized procedure, and success is dependent on the rehab. Find a PT who’s worked with plenty of ACI patients, especially one whose office is nearby. Right now, I go to PT twice/week for 1 hour per visit, and probably will continue to do so for several months. That’s a huge time commitment. Patients actually spend more time with the PT than the surgeon. Also, make sure the PT and the surgeon communicate regularly about your rehab progress.

Understand it’s a marathon, not a sprint. The first few days, perhaps weeks, after the surgery will really suck. I’m not kidding. There will be a few times when you are absolutely miserable. It’s human nature to question, even regret, the surgery while you’re wallowing in pain and self-pity. I know I did. But, like the overdone cliché, there is a light at the end of the tunnel. Better days are ahead. Remain resilient. Take some advice from the New Kids on the Block and Hang Tough. Good Lord. I can’t believe I just quoted the New Kids.

Develop a routine. Full disclosure: I’m a creature of habit. I like planning out my days. If I don’t, I forget to do stuff. Following a routine will help you get through the day and complete all the necessary home rehab. Patients spend 6-8 hours/day in the CPM, usually in 3 separate two-hour+ sessions, plus they spend another 15-30 minutes doing home PT. That basically wipes out your day. If you miss one of your CPM sessions, it’s difficult to make up those 2-3 hours. If you head back to work, it’s even more difficult to sneak in the required CPM time. Think about it. If you’re gone from the house from 8am – 6pm, you either have to wake up a few extra hours earlier than normal or you’re going to spend your entire evening in the CPM, leaving no time for the family. Plus, it’s taxing to spend more than 3 hours in the CPM.

Here’s a rough timeline of my normal day:

6–7 Wake up and eat breakfast

7-9:30 CPM

9:30-1 Relax, work, etc. Eat lunch.

1-3:30 CPM

3:30-5:30 Spend time with kids, work, relax. Eat dinner.

5:30-6 Playtime with kids.

6-8 CPM

8-8:30 Relax

8:30-9 PT exercises

9-10 Relax

10 Shower and sleep

Trust me. My day’s as boring as this timeline suggests. But at least I’m able to carve out enough time for the CPM and PT, which, at this point in the recovery, is critical.

Buy a shower seat and toilet seat riser with handles. As soon as you’re physically ready, you’ll want to shower. Your injured leg will quickly become engulfed with dead skin. It’s just nasty. However, you won’t be able to shower standing up. I bought a simple bench with a handle; that’s worked just fine. You’ll also want to keep your shampoo, etc. in a basket within reach of the bench. The toilet seat riser is also necessary, especially for women. I recommend getting one with handles, which make it easier to push off back to your feet. Plus, I plan on leaving the Cadillac on our guest crapper during all future parties. That should make for great conversation.

Don’t hesitate to call in favors from friends/family. You’re going to need help. Lots of help, especially if you have kids. You’ll need to arrange rides to school and sports practice. During those first few days, somebody will need to remain with you 24/7 in case you need assistance. If your spouse needs to run an errand or takes a deserved break, you’ll need a replacement adult to watch the kids. Guys hate asking for help. It’s genetic. It’s why we refuse to ask for directions, no matter how lost we are. Set aside your pride and ask for help. Don’t play hero. I learned most folks are more than willing to chip in. We’ve been fortunate, with several friends inviting our kids over for playdates, taking them to basketball practice, and bringing over dinner. You’ll have plenty of time to “make it up” after your knee heals.

Familiarize yourself with your insurance benefits. ACI is pricey. There are several cost components to the surgery. The cloning. The surgery center. Anaestesiologist. Surgeon fee. PT. The rental of the CPM and ice machines. Know how much insurance covers. Examine the exclusions provisions. Study the pre-certification and appeals process. Organize all communication and bills relating to the surgery. Save all EOBs. Document all contacts with your insurance carrier. Insurance companies make money by screwing people over. That’s their business model. Hopefully that won’t happen, but accepting this fact will provide a dose of realism. The surgery center initially asked for almost $9,000 before it would schedule the procedure. Luckily, I understood my coverage, refused to pay and directed her to the surgeon’s and Genzyme’s insurance liaisons. Perhaps this was a simple mistake by an unknowledgeable billing clerk, but a lesser-educated patient might’ve mistakenly paid the bill. And everybody knows how difficult it is to collect a refund once that money’s gone. The lesson: wait until all the bills arrive and insurance discounts have been applied before paying anything.

22 comments:

Anonymous said...

Hi Jim. My name is Lisa and I can relate...Dr T performed pretty much the exact surgery on my right knee on 12/18. I had 39 staples, but I think your incision looks londer from the pics. I know that my husband can relate to your wife and all she has done - they deserve major payback!!!! Sounds like you are doing better in the swelling and brusing than I did. The lower part of my skin looked like a rainbow about a week out and throbbed SO bad. A little warning - don't get your hopes on getting the brace unlocked. I thought that would happen at my last visit (1st in the new office) but he is waiting a couple more weeks, which will be about 6. So when I thought I would ditch the brace is when it will be unlocked. I think it is more due to the stupid screws than the ACI part. I can also relate to the lack of muscle control - my PT said it is due to the swelling. But I was able to do a straight leg raise (in brace) pretty much on my own yesterday - it was exciting. I have also read 6 books and caught up on several movies. I have also surfed the web - I was looking at ACI rehab when I found your blog. Finally, just to let you know - the incision not looking straight - I think that must be Dr. T's signature. Mine looks the same, although it is still pretty swollen and maybe is straighter than it looks. Happy recovery - and maybe send your wife for a massage or pedicure - she deserves it.
Lisa

mdurbano said...

Hi...just wondering if this is a typical incision (scar) for this type of surgery?

Thank you!

Jim said...

Hi mdurbano. I had an osteotomy, in addition to the ACI procedure, which lengthens the scar. Different doctors use different techniques. I think mine did a larger incision than most doctors. But it's still an open arthrotomy, so you'll wind up with at least a 5 inch cut. Hope that helps.

0d546e9c-f115-11e0-9c5d-000f20980440 said...

Hi Jim! Thank you for the info! I am scheduled to have an ACI as well as a lateral release on December 2nd. Im curious, how long does the surgery actually take? And did you stay in the hospital overnight? Hope you're healing well!

Jim said...

Thanks for the note. The actual procedure lasted, I think, around 2-3 hours, but I'm not terribly sure. I don't remember how long I was in prep and the recovery room. The entire day was kinda a blur.

My surgery was out-patient, which seems to be unusual for ACI. The first night wasn't too bad, but the next day is rough because the femoral nerve block wears off. And that's when all the pain kicked in.

Who's your surgeon? Good luck with the operation, and keep me posted. Hopefully my blog helps, or at least provides a laugh or two.

Jim

eric said...

I had my ACI surgery on Nov. 8, so I am 3 days in. You are right about the pain increase a few days in. How long does this last before it starts getting better? The cold therapy seems to help the most. I went to dr. Shwartz in Plano, Texas. Getting a bit dizzy trying to type. I'd love talk to yo in more detail about it sometime and your blog is very helpful although they seem to be rushing me along faster. I've already had to goto pt on day 2 and am at 80 degrees on the cpm already. Might be why I'm experiencing some considerable pain.

Thanks,
Eric

Jim said...

Hi Eric. I've blocked out those first few days. Pretty miserable time. I feel for you. It's been almost 3 years since my surgery, so perhaps the rehab protocol has changed. I'm sure each doc has his own protocol, too. I remember reviewing the guidelines from Carticel, Dr. Minas (he's the premier ACI surgeon, based outta Boston), as well as random others. Rehab also depends on the location of the defect; mine was a double - patella and trochlear groove, probably the "worst" spot.

Happy to talk further with you. Email your phone number to jimetri@gmail.com
In the meantime, hope the blog provides some insight and a few laughs. And yes, there's a light at the end of the tunnel. It may be far away, but, trust me, it's there.

Jim

Charlie said...

Week 4 down after H.T.O and A.C.I surgery...
Dr. McCarty (Minnesota Twins Dr) did surgery... I was PAIN FREE from day one--wish I could post what MY knee looks like
Drop me a line with ANY questions, or leave me your number and I can call.
charlie.flyski@gmail.com

andrea said...

I am just 3 weeks out from my ACI & high tibial osteonomy. WOW pain free from day 1 ! I will say though I have more pressure in my knee than pain (unless my lovely doc decides he should press on the areas he put patches on then its an amazing feeling) my tibia is what is really bothering me at times. Less now but in the beginning holy cow I swear I felt all 3 of those screws in my leg. I was moving my leg once day maybe 6 days out & inadvertantly tried to use my tibia area to move my leg it was excrutiating. The cryo cuff however is an amazing brilliant invention that should be revered. Thanks all. I am at ajblakey79@gmail.com if anyone has questions.

Jen said...

Hi. I am 1 week post op - stage 2 ACI, tibial Tuberocity transfer and lateral release. I had 24 staples and 2 screws put in my leg. I was in hospital for 3 days. My pain has never really been under control. If I do get to sleep at night I wake up very soon after, usually when my leg falls off the pillow and I forget I have a brace on and try to move my leg and use my quads. The pain is unreal. I read this blog before I went in for the op and it gave me great hope and a lot of laughs. And now i am post op it is all so true. Spot on with the losing your dignity thing. My mum has been helping me in and out of the shower and I can't even tie my own shoes. It's comforting to know that there are many others out there in the same boat. My husband is a physiotherapist so I'm lucky in that respect and he bought me a cryocuff which has been amazing. I'm at jenniferstocker@gmail.com if anyone wants to get in touch.

kayla said...

Hi! Thanks so much for this blog. It helped me a ton-especially prior to surgery, but also nice to read to compare to my own experience as I go through rehab. I have had two ACI surgeries, 6 months apart, with osteotomies as well. I am 2 months out from my second knee surgery which was Dec 26, 2013. I have done very well with minimal problems with the ACI surgeries. Prior to surgeries, I thought I might be disabled forever! Very thankful for the surgeons who are peioneering this procedure! I wrote about my progress at kneeguru.com under name Ozzie!

Jim said...

Glad it helped, Kayla. Best of luck with the recover(-ies)!

Jim

Leonette MarSha! said...

Happy New Year!! I was reading about what I should expect for my upcoming ACI, and I came across your blog. I've read and reread your advice, and I have to say, it makes me feel better. I have had numerous surgeries over the years, but I don't think any will come close to this one. Ive had the arthroscope done on 11/13/2014. My doctor was hoping to do the ACI before the first of the year, but I was told by my doctor that my cells at Carticel were growing at a very slow rate. My surgery has been scheduled for 01/12/2015.

Jim said...

Hi Leonette. Who's doing your surgery? Best of luck with the recovery!

Leonette MarSha! said...

My surgeon is Dr. Massey. He's from Philadelphia. I'm in Shreveport, Louisiana. He's been here since August of 2014 and the only surgeon in this region qualified to perform the ACI. I'm nervous, but I am ready. Thank you.

Leonette MarSha! said...

I hope everything is going well. I am now 8 days post-op ACI surgery. I have to say I cried like baby the first day. For those who have said they had virtually no pain, bless you, baby, bless you. My pain was awful. I blacked out twice. I fell the first night because I blacked out. I thank God today is a better day. The crutches are something to get use to, but this brace is has become my new best friend. My husband and my brother calls me Robocop, and robot chicken. It's the humor that keeps me going and knowing that this process is only for a while. I know it will be greater later. Thank you, Jim, for all of your posts. I'm looking forward to hearing from you soon.

gilbert kabayao said...

I need all you guys input on my current condition.I had aci surgery 10 months ago and worked hard in rehab. A month
Ago i was already running a 7.5 on the treadmill and was playing basketball at 80% strength..however 2 days ago, i ran for 3 miles and suddenly my knee swelled up and has been locking and popping. Im nervous and anxious on what happened.Did my graft slip? Or was it only scar tissue wiggling around.its been 3 days and it is still swollen..

Jim said...

Leonette - Glad you're thru the roughest part. Yes, there is a light at the end of the tunnel, even for RoboCops! Hang in there. It's a long process, but it sounds like you've got a great support system.

Gilbert - Obviously, the best and really the only way to confirm is via an MRI. I don't think your graft "failed," or you'd probably be in much worse shape than some swelling and crackling. The popping likely could be some scar tissue breaking apart, which happens for a long time after surgery. Ice remains your best friend, even years later. While 10 months seems like a long time, the graft continues to strengthen/harden, at least mine did. Of course, I had my surgery several years before yours, so you've got the benefit of enhanced medicine/technology. Best of luck.

Ms. K said...

Hi there Jim. My husband and I have been reading your blog in hopes of getting as much patient insight before his ACI in a couple of weeks. We haven't see any mention of a cryo cuff. Did you use just regular ice packs or did you have a cryo cooler? His OS mentioned that he may benefit more with the cryo cuff the with just ice packs.

Jim said...

Hi Ms. K. I don't recall if one was available when had my aci surgery, but definitely a no brainer. Like icebpack on steroids. I used one for later surgeries. Good luck

Jim said...

Hi Ms. K. I don't recall if one was available when had my aci surgery, but definitely a no brainer. Like icebpack on steroids. I used one for later surgeries. Good luck

John a said...

My son who is 17 will be getting aci with osteo. In a few weeks. We are both a mess. I'm physically ill at the thought of the pain he will be in and have a concern with addiction from the comments I read from adults needing meds
For such a long time. He's a great kid that was headed for the all star baseball game and he's crushed -- he's going to be a junior and is afraid he might not mentally be able to handle the isolation ( his friends are playing ball and since he's not there he's out of the loop) and the pain. Any support would be appreciated!