Wednesday, November 17, 2010

KJ's PCL Story

Hello everyone and welcome to my blog.
Here is another pcl survivor story! Thanks for sharing KJ.
Skinnygurl

First, I love your blog! I just found it yesterday and I'm almost done reading the entire thing! Thank you for sharing your story and giving others a place to share theirs.

My story is a little long because it took me 6 years to get the surgery. A little history: Original tear occurred in April of ’03. I took an awkward tackle straight-on below my knee during our Midwest Rugby Championship match (we won at least).

The MRI showed a partial tear of my PCL so they advised PT only and no surgery. The next 5 years looked like this:

- Played at Nationals in June ’03 right after the injury (dumb & painful)
- Missed most of fall ’03 season due to pain but resumed regular playing in spring ‘04
- Played at the Midwest level in ’05-’06 (grueling training schedule) and attributed knee pain to over-training. I know now it was due to the original injury.

- Tweaked my knee playing volleyball in spring ’07. It sent shooting pain through my knee that radiated out into my upper leg and I had to stay out of activity for 3 days. After that it didn’t hurt anymore. In hindsight I should have had it checked because that’s most likely when I completely tore my PCL.

- Kept playing rugby and played my final season in fall ’08. I barely made it through that season though because of knee pain

I went back to my original ortho who basically did nothing; saw a 2nd ortho who ordered another MRI. Follow-up:
- He saw the complete tear so I tried PT for 2 months at the end of ’08 and cortisone injections but nothing relieved the pain.
- Was referred to a 3rd ortho, Dr. Noyes at Cincinnati Sports Medicine, who happens to do an incredible amount of research on PCLs
- Stress test revealed a 11 mm drop of my tibia from my knee. I was questioned on how I kept playing; surgery is generally done once the tibia drops 6-8 mm. I told him it was easy since I didn’t know there was actually something wrong :)
- I was scheduled for surgery 2 months later (March 25, 2009)

I’m not gonna lie, I had no idea what I was getting into with this surgery because I’d never had so much as a stitch in my life; that’s probably a good thing.
- They used my quad tendon for the graph and surgery surprisingly took under 4 hours.

- The next 2 weeks were full of plenty of tears at rehab because of the pain. I had scar tissue issues and couldn’t hit 90 degrees flexion by the end of the 2nd week so back to the hospital I went for manipulation under anesthesia. That may have been worse than the actual surgery!
- I immediately jumped up to 106 degrees after that and made steady progress from there on out. I never had issues with range of motion after that and never had a problem with getting my leg completely straight. That was the only thing I could do from day 1!
-I spent 9 weeks total on crutches with my hip to ankle brace (I think I got a sleeve the last 2 weeks). The first month my brace was locked straight which is awesome when you’re trying to sleep. In all, the healing process went well though and my knee is solid and stable. My stress test at 1 year showed my tibia only dropped 2 mm which is normal so the graph has held. However, my strength test at 1 year was depressing and still showed a 33% deficit.

I should probably mention that 2 months after my surgery (while still on crutches) I got engaged! I was married 4 months after that so admittedly my rehab suffered a bit from months 3-7! Heck, is suffered the 2 months after we got married too :)
Current Status:
I coach high school girl’s & senior side rugby now and ran around all spring with a limp. It caused enough pain that I headed to a new rehab place in July to see if I could do anything about it. Manual therapy helped some but I think it’s as good as it’s going to get.

I think I'm glad that I didn’t have this surgery at 23 years old but the downside of having a janky PCL for so long: grade 3 chondromalacia of the patella with chondral fissuring and suchondral reactive osteoedema. Basically the same grinding & snap, crackle, pop others have mentioned plus I'm awfully close to being bone on bone (grade 4). I have arthritis in 2 of the surfaces along with effusion (water on the knee) & a baker’s cyst (in the back of the knee) that came back pretty much as soon as they drained it. I've also developed painful tendonitis in my good knee. They say this put off knee replacement an extra 10 years though so I have to look at the bright side.

By 18 months out I was done babying my knee even though I continue to have a lot of pain. I could do quick starts and sprint at rugby but always paid for it with LOTS of pain afterward. I am back to boxing & zumba which haven't bothered my knee too much. Running a 5K isn’t in the picture yet and may never be (I never really liked just plain running anyway - ha!) and I have no plans to return to competitive rugby, although I still feel my 12-year career was brutally cut short. Strength is still a nagging issue but it's better; pain is still my number 1 nemesis!
The Future:
I go back in March '11 for my 2-year and final check-up. I’ve skipped all the strength tests since my 1-year mark because they are expensive and I don't need them to tell me that I'm weak. I may get another one at 2 years just to see where I am. I still have 1 1/4" difference in my quad size and the catch 22 is I can't do extensions because of pain and I'm not supposed to do squats (I still do them with <20 lbs). Tough to get my full quad back with just straight leg lifts!

Unlike you, I'm not always sure if I'd do this again! :) It changed my life forever.




26 comments:

Molly said...

Wow! What a journey! I'm so glad you found this blog and hope yuo keep in touch. You are a great resource for people considering this surgery.

KJ said...

It's great to read other stories. Not only is it not a common injury, it seems even less common to actually get surgery to repair it.

In my many weeks of rehab I only ever met 1 other PCL patient that flew from Seattle to Cincinnati to get the surgery (yikes).

hamlet said...

hey Pamela, KJ and Molly,

It has been awhile. How's everyone? I don't disappear but I've been a silent reader all this while. Plus life is a lil bit different now. My wife just gave birth to another rugby player. haha.

Welcome to the family KJ. Another rugby player after me and Mr. Speedy no 9.
I am celebrating my 2nd Anniversary post-surgery this Sunday. I played futsal all this while but Im going back to the field for my first rugby game the following weekend. It's been hard for me to abandon rugby like u, i've been playing for 12 years.

So, I give everything for rehabilitation, workout every chances I get and here I am again.
I wish u all the best. What's important is to strengthen the tight muscles and strap in-case u r not confident.

until then, take care. ;)

p/s: had my point finger dislocated during training last month. but I still coming back. ;)

Ashley Blackburn said...

Glad I found this blog. I've been suffering for 9 years with a PCL tear. I tore it in January of 2002 in an indoor soccer game. I can't tell you how many times I have replayed that moment over and over in my head. A moment that has affected my life enormously. I have dealt with depression because of it. I'm an athlete who can no longer run, play soccer, snowboard, or do anything that I used to. I can still do low key activities, such as pilates, yoga, hiking (to a degree) and mountain and road biking. Thank goodness for bikes.

I have had four surgeries. The third one being an OATS procedure--where they put grafts where cartilage has been disenegrating between my tibia and femur. That sugery made my knee 80% worse. To where I once was able to run, snowboard, hike, etc., I can no longer do any.

I have now been contemplating doing a PCL reconstruction --as I see it as my last hope--but have heard terrible things about the risks with the surgery and the recovery. I don't know if it's worth it or if it will even improve my knee.

I'm glad to find people that have suffered as well with a PCL injury. It's disheartening that there isn't more research done for PCL repairs. I wish there was.

Reading this has given me hope. Hope that my knee could improve with a PCL reconstruction. Now I just need to find a doctor that is willing to do it.

Skinnygurl said...

Hamlet! I just saw your note! Wow! Good to see you buddy!
I'm fine-knee a thousand times better!!!
Congratulations on the new addition to your home! Wow! Bet you can't wait to start training the little guy! ha ha
lol, read about your finger. Nothing is going to keep you down, nothing! Glad you're doing well. 2 years sure goes by in the blink of an eye. Stick around, good to see you!
Skinnygurl. lol
Let's help Ashley, would you mind joining in?

Skinnygurl said...

Hi Ashley and Welcome to my blog. our Blog. It now belongs to all of us.
I can only imgine how many times you replayed that second over in your mind. Even after my repair I still think about my accident. I also think about my tissue donor every single day.
Yes, thank goodness for bikes. I hope Molly can chime in here, she has lots of experience in that dept as well as many surgeries under her belt.
We're all like family here and I welcome you Ashley.
I can only encourage you to talk to Molly and the other PCL Survivors regarding your own pcl surgery. I encourage you to read my blog and see just what you're up against. Every surgery is different, every doctors protocol is unique, seems nothing is constant except the pain and sometimes the length of recovery. Only one young buck made it through recovery almost instantly. Age was on his side as well and his fitness level.
Moving forward!
It's because there is little to no information about PCL surgery and recovery that I wrote this blog.
I'm happy this has helped you and you've found support here.
Do you mind telling what region of the world you live in?
Good luck Ashley and stick around.
Skinnygurl

Speedy No. 9 said...

Hi KJ,
Great story. I bet you had a great time playing collegiate rugby. I was an active player myself for more than 20 years. I played collegiate rugby in the US from 1989-1993, never made it to the National Final Four but was once in the Eastern Collegiate Final Four (the format back then) and finally ended the year as the National No. 3. Great experience playing in the states, though I’d like to keep some of those post-game party stories as my past history...hahahaha. Now we have you, me & Hamlet from the rugby scene...incredible. Good luck with your recovery.

Hi Ashley,
Welcome to the blog. As Skinnygurl has said, every PCL surgery is different. Every PCL survivor’s rehab process is different (like me in Malaysia having to make do with the little facilities at my local hospital), risk and chance (or %) of recovery associated with the surgery are also different. You must discuss thoroughly with your doctor and seek opinion from others close to you as well. Support from friends and family is crucial especially to lift our spirit up when we feel like quitting....most of us had contemplated that at one point or another during our journey to recovery.

I won’t lie by saying it was easy for me. It has been difficult, physically and emotionally, but in my case, the surgery definitely gave me a second chance at enjoying life. Skinnygurl was kind enough to publish my PCL story earlier. Despite all the hardships, I’ve now arrived at a stage where I’m very comfortable with my progress. It requires a little adjustment in my routine, no contact sport obviously but I’ve also found passion in other things which are equally fulfilling. I jog when I’m fully okay and on those days when the niggling pain tries to bring me down, I’ll switch to other exercises like brisk walking or cycling on stationary bike. As a whole, I am not restricted in my movement and more importantly...I can still lift my kids or give them piggyback ride without much problem. Mind you...it’s double trouble every time because I have to do everything twice….see, I’ve got twin girls who seem to enjoy making me chase after them around the house:) Arthritis is also a given, but so far I can still live with it.

As I said earlier Ashley, get as much information as possible, be it from your doctor, those who are close to you, this blog, and all of us here, and finally make the decision that you feel is the best for you. I honestly feel that deciding to undergo a PCL surgery is only half the battle towards recovery.....the other half is our perseverance, and support from our family and loved ones during the recovery journey. Luck (or fate) obviously has a role to play, but that's obviously not in our control.
Good luck to you and all the best. Keep us posted on your progress.

Speedy No. 9 said...
This comment has been removed by the author.
hamlet said...

hello Ashley and everyone,

I've been visiting over and over again hoping to see more comments.

Of course I wouldn't mind helping another family member.

Ok, although I'm already back to the field that doesnt mean im 100% to go.

Im stil contemplating of doing another surgery. This time for PLC. Yes, PLC is another different story. But what I wanna tell you is there is now a new way of treating tear/broken/torn tissue, muscles etc.

They call it Stem Cell. What they do in brief, they will take samples of ur tissue and grow it in the injured part. it then will grow to the original shape.

My next treatment, I will consider that. I second Speedy. Get as much support, information and thoughts from every possible sources u can get. It really helps to prepare u mentally and physically.

My msg here to u and everyone else out there, don't give up. U've reach this far and it would go to waste to give up now. Just remember back the time when u use to have great confident as an athlete. So hang in there. There are so many way of treatments for u to get. Just chose one and have faith.

Keep us updated here. U can always send msg's to Angela.

Molly said...

I've been trying to figure out what to say to you, Ashley. You have been through so much already. I'm 3 years post-op and my allograft PCL has just fallen apart. The degradation started 1 year post-op and has continued to where I am worse off now than before the reconstruction. I've decided to just live with it, wearing my brace for most activities. Think long and hard before you decide what to do.

susanv85 said...

Ashley, I just read your comment, and I am myself 5.5 weeks post op from a PCL reconstruction. My rehab has been going along pretty steadily (a little setback lately because of the recent blizzard we had, so I couldn't get to PT), but overall, I am feeling more confident in my knee then I was before the surgery. I have full extension, last week I was measured to be 120 degrees of flexion, and I've been progressing really well I think. Just make sure you do your homework in finding a surgeon, don't just go to the first person you find. Make sure the person you choose has experience, because if they don't, that's when you run into problems.

Also, the rehab is boring. And long. Even though I felt great, I had less pain after the surgery than I did before, the first few weeks of rehab you're very limited in what you're able to do. I felt like I could do so much more than what my therapist was allowing me to do, but that's because you need to protect the graft while it heals. But I did start riding the bike pretty early on, before the surgery, even when on the bike, I would feel loose and unstable, now, it hurts because of the bending, but it doesn't feel loose anymore. I also started a blog with my experiences, you can click on my name to find it, if you're interested to read another ongoing experience.

KJ said...

Hi Ashley,

I think I can probably relate to your experience the most. I partially tore mine in spring of 2003 and didn't have surgery until 2009. Mine started as a partial tear then tore completely in '07 (I think). I really damaged my knee over those 6 years and it sounds like you're in the same boat when it comes to the damage to your knee.

I saw 3 surgeons and made the decision to move forward with surgery to prevent any further damage. Now I'll need knee replacement at 50 instead of 40 :)

Here's what the surgery did NOT do: get rid of the arthritis, the crepitus (when I bend my knee it's definitely audible), or the shooting pain I sometimes get in my knee cap (stage 3 chondromalacia).

I think I went into surgery thinking all this stuff would be fixed since they were going to scrape the arthritis and knee cap. I'm curious how old you are? It sounds like you could benefit from it by keeping further damage from occurring, but you have to be more realistic than I was about what will be fixed with the surgery. I got a new PCL and knee stability back but that's it.

I'm 21 months out from surgery and my life isn't the same. I am training for a Warrior Dash in June so things are looking up but I know that it will probably take my knee a month to recover from it :)

I would talk to several surgeons but if you have a good relationship with your PT I'd really pick their brain too. Remember that an Ortho's job is to perform surgery...a PT maybe able to offer a different perspective on what functionality you can achieve with a 5th but very major surgery.

Let us know what you decide! Best wishes.

KJ said...

Speedy,

Collegiate rugby was a blast but I didn't get really serious about my rugby until I played club side. My DII team went to Nationals 3 times and Midwest 4 times and it was such an amazing experience. I love those girls!

I spent a couple years playing for the Midwest Thunderbirds and we won the National All-Star Championship my 2nd year. The next step from there was to try and get into the Nationals pool but that was about the time my knee was going down the drain plus I would have had to relocate to a city with a DI club.

In the past year I started a high school girls team and in the fall I coached the women's club team I used to play for. It's not the same but it helps *shrug*

Tim Broad said...

Hi there, I have just has PCL and posterior corner reconstruction. Like you they used a graft for one of my ligaments, but they used a LARS ligament for my PCL as this is supposed to be the ebst at the moment (only 8 years tested)

I went to the physio the other day and she was 55 years old and had never seen a PCL surgery patient.

I am 4 weeks post op and have about a 65% bend, but it is improving as the swelling goes down. After how many weeks were you cycling and running?

how long did you have your brace on?

Hope alls good withy ou and your meeting in March goes well.

Tim

lisa.case said...

Finally, people who can seem to relate to me! I tore my PCL back in september during a slide tackle playing soccer and am currently 5 weeks postop. I had a donor achilles tendon used and bioabsorpable screws. Being only 21 and living on a college campus has been really super fun when you cant seem to do anything, and no one understands that a PCL is NOT an ACL and its a totally different surgery!! argg! I was wondering how everyone's postops went though, my surgeon was good, but extremely aggressive with my recovery. I do not have a brace, nor have I had one, which really scares me (I feel slipping a lot in the joint). I lost almost all of my quad fast and am very very slowly regaining, barely able to do straight leg raises :( I worry that I am really compromising my knee's stability and safety because of the lack of bracing. I can put full weight down easily but my gait is really off. How should I go about convincing my therapists that a brace is almost necessary at this point, especially since i am so active with classes? I've been on track with flexion i believe, think I reached around 100 today. Also did anyone else experience a really hard and very verrrry painful knot/lump right under and near their femoral incision? It's going to be the death of me!! Relief suggestions welcome! :) I'm happy to join this rough club though!

Skinnygurl said...

Welcome Lisa!
Let me put your story on my front page. Please send me an email of what you would like to say and maybe even a picture or two.
sprinter2fun@hotmail.com

:)

Molly said...

Lisa: I (and others on this blog) wore a brace for a year post-op. I was non-weight bearing for 6 weeks, and in a locking brace for 8 weeks until I went to a functional brace (Breg Fusion). I was told to wear the brace 24/7 for many months, except for when I was bathing.

Molly

KJ said...

Tim - Running for me has been a very slow process since I have little cartilage and lots of arthritis! I started jogging a year out and was sprinting (not full pace) and cutting by 18 months.

I was told there is no athletic brace made for PCL tears so I am braceless. I spent almost 2 months in my hip to ankle brace after surgery and then moved into a soft brace. Honestly, I like not having a brace.

KJ said...

Lisa - I am stunned that you do not have a brace. All surgeons & therapists are different and I'll be the first to admit that my PT was very conservative. My PTs harped on me not not to activate my hamstring to avoid stretching my graph. I don't understand how you protect yourself from doing that without being in a straight leg.

Like Molly, I was in a brace for 8 weeks but then I just had a soft brace. I was on crutches for 9 weeks -- I had to stay on them until I could walk without a limp. They were adamant about that which really sucked because I was ready to ditch the crutches at 7 weeks :)

The slipping in the joint isn't something I ever experienced, pre- or post-op so I can't really comment on that. Don't stress too much about the leg strength. It goes away REALLY fast and comes back REALLY slow.

I guessing the knot you have is scar tissue. You have to get lotion and just rub that thing out multiple times a day. My husband used to do it for me because it's so painful. Does the therapist massage your incisions? It's a necessary evil unfortunately.

Molly said...

I know of at least three functional braces specifically designed for deficient/post surgical PCLs: Breg Fusion, Donjoy Defiance III, and Ossur CTi. I have the first two - I like the Breg best because it stays in place on my leg better than the Donjoy. I would love to try the Ossur - it looks really good. I was told to continue to wear my brace for all sport activity, even after the first year of nearly continuous wear. Now that my graft has failed, I wear it whenever I go out. I find the Breg to be very comfortable and not noticeable under most clothing.

As for massaging the scars - I started doing this as soon as the incisions had healed. I massaged them with Vitamin E oil every day and I can report I have beautiful, barely noticeable scars now - even the 4 inch MCL scar.

lisa.case said...

Thanks guys! Yeah I just really don't like the idea of not having a functional brace on all the time, especially living in a college setting. I cannot avoid being in groups or having to hike around campus a good bit, so I do feel like I would benefit from the safety blanket feel of a brace. I'm hoping to visit a different surgeon at school (I had surgery in my home state of PA but go to school in SC). Hopefully he will not be as hard headed and will listen to my worries about having it unprotected. My therapist is not currently massaging out my scars, I will definately mention it to her. Overall I feel like I'm doing well, reached 105 yesterdy and had a strong day in therapy, though the rainy weather today has not been friendly to the knee :( It is amazing what a slow slow process this is. There are two girls currently rehabbing ACLs which were done within a week of my PCL on my soccer team with me and theyre much progressed than me. It's hard not to get frustrated, but it is just a different structure and surgery! Haha I'm so tired of people not understanding this surgery or injury at all! If I had a dollar for every person that says, "ohh I had my ACL done too a few years ago." Here's hoping I don't fall asleep in class from taking a pain pill :P

KJ said...

Thanks for that info, Molly. Do feel like a couple straps keeps your tibia from moving back from the knee? From looking at the design they make a lot of sense for ACLs but I'm not too convinced of how they'd really protect a PCL other than general stability.

You're in a completely different boat with your graph failing though so if it helps you then they must work! I'm still good without the brace. I guess I'll find out in March if my graph has stretched anymore.

How long after PCL reconstruction did your ligament fail? I know you had like 4 surgeries. I was told failure rate of 20%; 30% with cadaver. Does that jive with what you were told?

I have been a little overzealous with my training and have developed a bad case of IT Band Syndrome! It is HORRIBLE! It's not my actual knee obviously but it's on the side of my knee near the insertion point. I haven't had this much pain since a few weeks after surgery.

Thank God my husband is going to PT school. I am getting PT every other day now on it.

KJ said...

Lisa,

Nice job on the progress. And your therapist totally sucks for not massaging out the scars! :) Actually, it was one of the more painful points of therapy so maybe you should be happy. I'd definitely take Molly's suggestion. There's also nothing wrong with going and getting a second opinion about your brace. You might want to take copies of your charts, etc.

It's awful how long the PCL takes. I had teammates that were back to playing rugby in 6 months after ACLs (I think they were freaks of nature), 9-12 months max, and it just doesn't seem fair.

When people try to compare ACL surgery to PCL surgery I just start giving them stats on both surgeries -- from failure rates to time length of surgery to time on crutches. I also told them what one of my PT friends told me: It honestly takes about 2 years to completely recover from this type of surgery.

Sure, some people on this blog have done it faster but this PT treated several college varsity athletes and that's what it took.

I didn't really believe him before but I'm 2 months shy of the 2 year mark and I'm just getting to the point where I don't feel I have limitations. I'm not quite ready to step onto a rugby pitch yet and I also can't really jump like I used to, but everything else is okay.

Molly said...

Hi KJ: I really feel a difference between wearing my brace and not wearing it. The strap just behind/below the knee really keeps my lower leg from sagging. I am still very careful about climbing anything, but I hiked in snow, ice, and slippery mud for 1.5 miles yesterday. No problems!

Skinnygurl and I both suffered the IT band pain during recovery, but both resolved over time.

My graft failure occured over time from an ongoing immune system rejection starting with the arthrofibrosis I developed at 5 months post-op. At one year post-op, the graft was very tight (I suspect that was a result of the scar tissue. At 2 years post-op, my MCL repair was tight but the PCL was grade 2+ with a hard end point. It just dissolved during that year. At 3 years+ post-op, its even more loose. With the immune system response, I'm not a good candidate for a revision, so I just wear my brace a lot now.

susanv85 said...

lisa, I was in a brace that my PT affectionally called my "robo-leg" for 8 weeks post op, locked at 0 for 6 weeks, and on crutches, non weight bearing for 6 weeks. The brace also had some towels and foam behind the tibia to keep it from sagging. I had to be really careful the first few weeks post op to not let the tibia sag. But, once that came off, he didn't really recommend any brace for me, and said that my knee is in effect more stable than it was before the surgery, and he hasn't had any good experiences with PCL braces. He has a PCL tear himself, and he's a physician for a lot of professional sports teams and US Olympians, so I trust his advice.

I am now nearly 10.5 weeks post op I think, and I actually feel pretty lucky because my rehab has been going almost too good. It also helps that I have an amazing therapist, he put up with my yelling and cursing at him in the beginning, and now, I can actually stand to let him bend my knee without screaming, and after a warm up and a couple stretches, he can get me to 143 degrees.

I hear ya about the school thing though, I was interviewing for pediatric residencies 3 weeks after surgery, it wasn't easy, especially with all that walking. But at this point, I get around without the crutches, I can take the stairs slowly. I wouldn't say things are normal, but if you passed me on the street, you wouldn't be able to tell that I had surgery done because I am usually not limping, and I can walk at a decent pace. The first 6 weeks were tough because I was so limited in what I could do, but afterwards, it just took off, full speed ahead. That to me is the craziest thing, how the first 6 weeks of PT just drag on adn on because I couldn't do anything off the table, and then all of a sudden, boom, I get to do so many more exercises and the rehab moves at a much quicker pace.

lisa.case said...

susanv85,
Well I'm relieved to hear someone else did not have a conservative surgeon! I was getting worried! I'm going to be 10 weeks this Tuesday I believe and you're absolutely right, six weeks was the turning point! Leaps in flexion, I'm now easily without stretching around 120 all the time, climbing stairs like a champion (mainly due to my 3rd floor apartment minus an elevator!! ugh), and much much less pain which is a bonus! I do worry that my tibia sagged some because I was not put in a locked brace for the first six weeks and encouraged to be weight bearing ASAP but I guess I can't complain yet since I've been doing well following surgeon's instructions.