Sunday, June 26, 2011

One year after MPFL Reconstruction

It has been exactly a year since I had my MPFL reconstructive surgery. When I was preparing for the surgery, there was little available online so I could read what others had gone through and how they coped. Sure, I did find some stuff on kneeguru, but I noticed that I mostly found the horror stories of surgeries gone wrong. I confided to my husband that this scared me, and he reminded me that it's usually people who have had negative experiences who post the most, as they're looking for the most support. I've found this to be true.

But, I've been happy to see that the little I've written here about the MPFL surgery has helped some people gain confidence. One year later, I feel great. Sure, there is still a little bit of pain and some atrophy, but my doctor told me it would be nearly 1 1/2 years before I'd see complete recovery. Regardless, the pain is minimal and nothing compared to the stability I've gained in my knee. I followed my physical therapy regimen to the letter, including a lot of stretching at home on my own. I bought one of those yoga stretching straps that I hooked over my foot, and then I laid on my stomach and pulled my heel toward my butt. The first couple of times I could only get about 30 degrees. That bothered me, because the doctor said he wanted 90 degrees by the end of the second week, and I wasn't even half-way there! So, every hour on the hour, I stretched. Each stretch was painful, but I found that by taking very deep breaths, I could breathe through the pain of each stretch. At the end of the third week, I was nearly at 90 degrees. At the end of the fifth week, I was able to go all the way around on a bicycle, and the whole staff at therapy remarked how far I'd come. They also mentioned that they knew a lot of my progress had come from my at-home stretches.

So, for those of you who are contemplating the surgery or are in recovery, I highly recommend a yoga stretching strap. Here's a link to one like I bought: http://www.amazon.com/Body-Back-Company-Stretching-Strap/dp/B001I1OYP2

Of course, ask your doctor and physical therapist about if/when/how to use this strap, but I have to say, this was one of the most valuable pieces of rehab equipment I had. Another invaluable tool for me was Kinesio Tex Gold sports tape. Here's a link to that: http://www.amazon.com/Kinesio-Tex-Gold-Tape-Blue/dp/B001VNKNPC/ref=pd_sbs_hpc_3

Again, ask your doctor or therapist if/when/how to use this tape, as there is a technique to taping it correctly. The tape helped tremendously with the pain and swelling, and if applied properly, it will last on your leg for several days--even after showering. I loved this stuff, and I've actually been thinking about buying some more for now. I don't need it much, but once in a while I still get some swelling, and this really helps.

Many people have asked me about my scars, and in some of my earlier blogs, I posted some gnarly post-op pictures. I will try to post a new picture soon so those of you who've asked can see that there is really minimal scarring involved with the MPFL surgery.

Overall, I now have full range of motion (got that back at about 8 weeks post surgery), and I feel great. I'm very thankful I got the surgery, and the doctor who performed it, Dr. Rick Csintalan, was amazing. He practices in Irvine, California, so anyone who lives in Socal and is looking to get this operation should seriously consider him. He, in my opinion, is one of the best doctors I've ever been to.

So, please--keep the questions coming! I'm happy to answer any that you have and I wish everyone the best of luck with their knees!

85 comments:

Churlita said...

Glad to hear your surgery worked out so well. I can't believe it's been a year already.

Junkgirl said...

Thanks, Churlita! It really doesn't seem like it was a year ago, but I'm glad it's all behind me now!

Anonymous said...

I am so glad to have found this blog! My 13 year old daughter just had this surgery on June 22nd and it is nearly impossible to find any info. on this surgery. Thank you for sharing your journey with us. It has been very helpful for both of us. We will keep reading and I hope you don't mind if we have questuions from time to time. I am so glad your recovery went so well and I am hoping the same for her. Keep up the good work!

Junkgirl said...

Hi, Anonymous--Thank you for writing! I hope that your daughter's surgery went smoothly and that she's off to a fast recovery! You're absolutely right in that there's not much info out there on MPFL reconstruction, and since I had such a positive experience, I wanted to make sure anyone considering the surgery knew that it can go very well! Good luck to you both, and please feel free to ask questions any time!

Anonymous said...

Hello there! I am an active/athletic 40 year old, & I'm 8 weeks post MPFL. I'm getting frustrated because there is still considerable pain. It feels like a sharp ache at times & there is also pain under my kneecap. My question is: how long until you were able to walk without a limp? My surgical leg has atrophied & I'm trying so hard to walk normally but its not coming together for me. I'm also doing lots of physio, stretches, exercise bike & steps. My p/t told me to give it a few more weeks. Guess I'm losing some of my patience - lol. Thanks! Tracy

Junkgirl said...

Hi, Tracy! Thanks for writing. Don't give up hope, yet! I think it was nearly 12 weeks before I could walk confidently, but even then, I probably still had a slight limp. After only 8 weeks, I still struggled, and those pain you are feeling were exactly like mine. In fact, I still have them at times, but far less frequently.

My doctor told me that it takes nearly one and a half years to completely recover from this surgery, and for me, I started to feel much stronger about 4-6 months post surgery. That's where I saw the real gains. My doctor said that the pain is a normal part of the healing process because surgery is traumatic to the knee, but in time, you should see some drastic improvements. It did take longer than I thought it would, but I'm sure in just a few weeks you'll see more improvement. Keep me posted and hang in there! Good luck.

trojanfan720 said...

I just had the same surgery as you with the same doctor. Small world. It's been 11 days since my surgery and I am having a hard time with some P/T. I cannot do leg slides at all and I'm afraid to lay on my stomach and put my feet to my butt. I am off crutches as of 4 days ago. I am hoping that I am able to go on a trip with my friends up north July 15th which means I have a lot of catching up to do. I get sharp pain in my knee every so often. I believe it's just because it is healing. Being 6 ft 7 makes it hard on me.

Junkgirl said...

Hi, trojanfan720! Wow--it is a small world! Leg slides were really hard for me. I tried the best I could every hour. It was slow going, though. I think I could only get 30 degrees for the first couple of weeks, but I kept trying! Glad you're off the crutches. I got sharp pains for months post surgery, but Dr. Csintalan said there's a lot healing and that's to be expected. I bet you can go on your trip--just take it easy! I was up and walking around quite a bit, but if I was up a lot, I had more swelling. Just keep using that ice machine and elevating. Don't worry too much about the stretches-- it will come! I don't think I even attempted to get on my stomach for about a month. Good luck!

trojanfan720 said...

Thanks for replying back. I start my 2nd P/T tomorrow. I'm seeing the doctor on Wednesday to hopefully get the staples removed. 19 in total. I get sharp pain every so often in my foot and my knee, and sometimes my knee twitches. The only real discomfort I have is when the brace is off while showering or when I'm standing still. I think it's just the swelling in my knee that is causing this. Then my leg gets stiff again. Is the brace always kept in a straight position the whole entire time I'm wearing it or is it adjusted to wear I can bend my knee when I walk?

Junkgirl said...

trojanfan720--I had very similar pain and twitches. I still get them from time to time. If I remember correctly, the brace was always locked unless I was doing PT. After 8 weeks, I didn't have to wear the brace any more at all, but I was still pretty shaky when I walked. After a couple of weeks without the brace, I gained more strength and stability. Overall, the brace was the worst part! It's nearly impossible to get comfortable sleep in that thing! You're right, though, that the swelling causes all that stiffness. I was walking quite a bit two weeks after surgery, but I could always tell when it was time to sit down again!

trojanfan720 said...

Hi again- I am probably going to keep messaging you so be prepared!:) Today in therapy it was really bad and really good. I did most of the excercises except for 2. They had me do calf raises, balance my body on my bad leg while holding on to 2 bike machines, stand on my bad leg and slide my good leg up down and left. But the bad things were heel slides while sitting on a doctors stool, and to top it off I was on a stationary bike to try and get my legs going. I pushed so hard on my left leg that I threw my right leg back more than I am ready for. Instantly something hit my stomach and almost made me sick. I had to stop for 10 min, drink water and wipe my face off with water. The therapist said my face was white. Horrible I must say. I am 77 degrees bending which might behind schedule but I am trying. The doctor said I need to get more movement. I am doing my excercises at home and my knee is still swollen. Bad but good day. Blah!

Tracy said...

Hi, it's Tracy here. Thank you for your support & encouraging words. I'm 8 weeks post-op and still pop the occassional regular strength Tylenol when my knee gets sore, usually at the end of the day. Also I can't get over the stiffness in the morning when I roll out of bed - but my p/t tells me it's a good thing, it's supposed to be stiff. I'll keep working at it. I see my surgeon in Banff, Alberta, Canada in about 10 days for another check-up. I will post back again after my appt with any progress. Thanks again - take care!! Tracy

Junkgirl said...

Trojanfan720--I've been on vacation, so I apologize for the late response. How's the therapy going now? It has been about 11 days since you wrote and you were at 77 degrees. It sounds like you're right on track! Those heel slides are hard, and getting on the bike was excruciating at first, but I bet you're doing even better now. Let me know!

Junkgirl said...

Tracy--How's it going? I've been on vacation but am wondering how you're doing. It has been a year now for me, and I still get a stiff knee and soreness, so don't feel bad! Hang in there.

trojanfan720 said...

As of yesterday I can bend my leg 110 degrees with a little help and I can do a full circle on the bike. Starting Friday my leg will be measured while lying on my stomach. I get swelling on the inside of my knee sometimes. It comes and goes. I wonder if it's scar tissue build up. While sleeping my leg cramps up and gets pretty sore. My leg was unlocked yesterday too

~M~ said...

Hello!
I am so happy I came across your blog. I have been trying to do research on MPFL reconstruction. My surgery is scheduled for August 10th. I have had recurrent patella dislocation since I was 13. I had a lateral release when I was 16. I still had recurrent dislocations after that from time to time, but I got used to it because I would be sore for a few days, and then wouldn't have another dislocation for awhile. I am very active, although I don't run, I bike frequently, I strength train with weights and keep my legs really strong. A month ago, I dislocated my patella going down the stairs. It went back in spontaneously, but I must have done it at such a high enough force that I've been sore since. 2 visits with my Ortho Md and some xrays and an MRI later, I thought, "maybe it's time to get this surgery done" I'm a nurse in the ER, wife and mother of 2 boys...and about to go back to school for my MSN, I can't really take a lot of time off. I'm really scared that it's going to take me awhile to get back on my feet and get the strength back in my leg so that I can go back to work. I'm deathly afraid that I will not be able to go back to work right away and be able to perform my job as a bed-side nurse to full capacity.
I would like to know how long did it take you before you can walk without a knee immobilzer and crutches? Were you able to drive?
My doctor told me that I will not be able to go to PT for 3 weeks after surgery, I feel like this is too long and I'm sorried about muscle atrophy. I guess I'm more scared about not being able to do things afterwards...
Thank you for your blogs, it has been very helpful and I remain optimistic despite my fears.

Sincerely,
Maggie

Tracy said...

Hi junkgirl – I wanted to check in and say hi and give an update.
I am 11 weeks MPFL post-op, and I’m feeling really good.
I lost my limp 2 weeks ago, which made me very happy. I can even wear heels now for a bit without limping.
I have been out kayaking & walking, my activity level is improving. I can do stairs normally and can even run upstairs if I’m in a rush.
Can’t hurry downstairs yet though, it’s slower walking down the stairs. I still hold onto the railing. I’ve had no dislocations since the operation – yay!
My leg has atrophied and is quite a bit smaller than my non-surgical leg, but it’s getting stronger. I am doing my physio & try to stay on top of the schedule, which isn’t always easy.
The pain level has gone down, but I still find sleeping at night sore on the knee. It starts to ache after keeping it in the same position for a while. I’ve started icing it & advil before bed to get more comfort before falling asleep.
It’s still stiff at times, so I work on stretching and bending my knee to get flex.
All in all – I feel things have gone better than expected and my healing has gone really well. I’m optimistic.
Thanks – have a great day.
Tracy

trojanfan720 said...

Tracy- is the pain in the knee at night while sleeping normal? I'm 5 weeks post op as of today and I have major pain while sleeping. I tried to sleep with the brace off one night and wow did it hurt. I had it on last night. It was as sore as having it off but it still made sleeping difficult. I also feel my knee isn't as strong as last week. Maybe it's just a mind thing.

Karli said...

I am so happy I found this!!! I just found out yesterday I have to have this surgery 9/20/11. I start physical therapy this monday for six weeks to strengthen my knee enough to even go through surgery. Im a 23 year old girl & this was an injury with "no explanation of pain" since February 1st of this year (until YESTERDAY!!). Reading this has been so informative!! Thank you!! <3

L.McClain said...

So glad I found this! I am 7 weeks post-op from my second MPFL reconstruction, my first ruptured about 5 months ago. I don't remember my first surgeries recovery being this long. I was just released off crutches last week and my ROM is only 78 degrees flexion 0 extension. Feeling really down and frustrated. I am doing all my at home exercises and haven't missed a day of therapy. So great to see other stories of success and hoping my recovery speeds up. I also had my medial meniscus repaired so maybe that is contributing to the slowdown.

Anonymous said...

Hello: As we are all seeking support, here is my story. I had MPFL recon on March 23, 2011, and this month it will be 6 months post op. I have good ROM thanks to one of those electric bending machines I was given which is covered by insurance. My muscle strength test strong too. However, my issue is stability and balance. I still walk with an assistive device (crutches, cane, and walker at times in crowded conditions) because my confidence level is low with stability. I often feel that I have a neurological problem since I trip a lot and feel dizzy and can't maneuver in the 'real world' without a device. I sometimes walk at home with a great limp, as my surgery leg feels a bit wooden. Has anyone else experienced this long of stability rehab? I'm getting a lot of grief from friends and PT - "why am I still on a crutch..you should have grown a new leg by now...etc." Just makes me feel bad. All the weird symptoms and imbalance things happen when I am alone. My doc says it will be over 1 year before all symptoms have disappeared. I'm interested in what others have experienced.

Good luck to all, and I am happy others have had so much success.

~M~ said...

I'm now 4 weeks post op, started PT a week and a half ago. I've been doing my exercises at home religiously but still have quite a bit of swelling. As of yesterday, I have 72 degrees range of motion I'm still walking around with a knee brace, most of the time I have it unlocked, PT has it set so I can't bend beyond 60% with it on, if I get tired, I lock it. I stopped using crutches 1 week after surgery. My biggest problem right now is I can't tighten my quads enough to be able to do a straight leg raise without my knee brace on. I feel like it's taking forever, even though I know this is just the beginning. I want to be able to just get on a stationary bicycle again! I know I have to be patient, and I know all of you who have read this blog and comments have gone through the same emotions I am going through now. Reading your comments definitely makes me more hopeful and I know that things will get better..eventually.

Anonymous said...

Just had my surgery for my mpfl 2 weeks ago and I'm in speedy recovery so that I can keep playin football. I'm alredy going around on the bike and got to 100 degres on bending last physical therapy sesion and also had the same doctor as yourself he is pretty great but my question is. Is it safe to sleep without the brace goin the third week?

Mary said...

Yeah, I'm so glad I found this blog... I'm having mpfl surgery done by Dr. Csintalan next Thursday. I've been nervous about the whole process as I have been on crutches since I dislocated my knee back in September. I've felt very comfortable with him so it's good to see your success. =)

Anonymous said...

I am so happy I found this blog, I had MPFL surgery just 4 weeks ago and still having trouble lifting my leg. My muscle is still asleep and swelling is pretty bad so I am only able to bend 56 degrees. Starting to get frustrated as I went into surgery in great shape and I am young. I got rid of my crutches after 2 days but still in a full leg brace and feel like it is never going to come off.....at 4 weeks what should my range of motion be? Is swelling still a problem at this point?

Nat said...

I am 7 weeks post op and can bend only to 74 degrees. I'm not sure if that's normal or not, but I do know I'm doing all I can to get it to bend more. I was given a CPM machine (automatically bends your knee) at the beginning of this week. Hopefully that will help. I've been using it for at least 3 hours/day. I had no idea it would take so long to recover. I can't wait to go up a flight of stairs normally. I really appreciate reading through everyone's comments and trying to gauge if my progress is normal or not. I guess everyone is different. I'm 27 and very active and just can't wait to go to a yoga class again.

J said...

Hi, I'm 3 weeks post op and only able to bend to 38 degrees. I am finding that when I try to bend, it gets really tight and I am worried that something might snap?!?! Anyone got any ideas on how to help me to bend better. I'm supposed to be at 60 degrees for this coming Mondays PT appointment.

Anonymous said...

I am 29, had an acute MPFL tear and patella dislocation beginning of January 2012. I had the reconstruction 2 1/2 weeks later. 2 weeks post op I started pt and like most of you, had a very hard time with bending. I could only get to 45 degrees of flexion, and I had a cpm since the day after surgery. 1 monthe post op i saw my OS, and he said I should have been at 90 at that point and that my leg was way too tight. The next week (about a week and a half ago now) he did a manipulation under anesthesia, where they put you under and make the leg bend to break up scar tissue. He also scoped it to remove the scar tissue at that time. I began pt a few days later and can now get to 110 degrees, but it is excruciatingly painful durin therapy to get to that point. I can get to 115 on the cpm and can sit with leg bent to 90 after being on the cpm for a while. My range is better, but still not there and definitely painful. I have heard that this is a long recovery and I think the range of motion issues are just part of the process, although the streching during pt is the most painful experience of my life, even more painful than the initial injury. good luck to everyone.

Brooke said...

hI junkgirl. I have recurring knee dislocations.. and my doctor recommended this surgery to me, if I'd like it. My dislocations make me scared to do a single thing. From running, to dancing, to.. anything. I dont want to live this way, and I'm wondering if MPFL surgery truly will help me. Im only 15, and it would be my first surgery, but I want to know if the results are what you expected, despite the pain. Im willing to take the pain, if it will give me more freedom to be physically active.
:)

deee said...

I've been reading so much I'm tired but wanted to thank you for your blog. I will keep it up for a morning read. I just had my 3rd dislocation last november. i think it was negligent in the gym at work i attended cause i slipped on a mat. they replace all of them 2 days after.

it was the first time i couldn't get my knee back in place t was horrific. i'm 34 now with dislocations at 12, 27 then 34. I did an ironman 3 weeks after with a brace and was fine. Rehab for 5 months then to find out my mpfl and patella retinaculum is torn to shreds. I noticed from doing swats and having this "thing" pop out. so MRi showed the real damage that was done.

I have sugery on May 15. I'm scared but cautiously optimistic. I can't race for a year. I can't run til prb sept at least. i think part of me is so angry it's causing so much stress...

anyway glad to hear it went well. i just want o get back to racing next year. it sucks i have to start over.i'm so limber i can put my elbow out of place with no consequences. Same kinda with my knees until the accident. Noe I'm way too scared. Anyway no cartilage damage so i should be fine.

i just hate I spent 5 months doing PT/acupuncture/chiro only to find out i'm screwed. unless i wanted to sit around and be a couch potato.

Here I go.. I just wish I could talk to more people that dealt with this. My surgeon is super agressive and wants me to PT 7 dys after and says deal with pain avoid crutches if i can.

thoughts"?

Wes said...

Hello people!!! Im Guilherme, from Brazil! I´ve been reading these comments ... in fact, i tried to post here in october 2011, but somehow, my comment didnt work and aren´t being showed..
Well, i will resume all my history, and at the end, you will see how that surgery can save you! I have the best news and outcome to all of you!! Im 26 years old, and i play pro tennis, even though i was having my patella dislocating since i´m 16..
I had like 6 or 7 fully dislocations, and about 10 SUB dislocations ... In my first dislocation, back in March 2002, i lost 70% of my patella cartilage, and i was losing small parts of the rest, in each dislocation! The last one, happened in June 2011, exactly when i was getting my best results on tennis, and i thinked a lot about it, if i still have the will to fight back from the surgery and keep training hard and playing at high level! My Doctor, a very renowned and agressive, encouraged me, and said that this surgery, this procedure, isn´t that hard anymore, and the outcome is 99,9% secure, even for a high level athlete, but the rehab time would depends on how i wanted to push me hard!
So i went to surgery in July 2011 .. i went prepared to a hell post operation and rehab, and still i got surprised how hard the first weeks became ...
So, i started my rehab and physiotherapy in the 2 weeks, and all went well, with huge improviments in the begin.. the first step that i had without crutchs, i felt a solidity, stability, that i hadn´t since my first dislocation!!! I was so happy, positive and ready to go!!! But suddenly, all the improviments stoped ... the "lateral release" procedure was giving me a harder time that i would ever imagine, and more! ... lots of pain and discomfort, even at swimming... actually, i came here in september or october, completly sad.. looking for positive things about it... Now i´m here to give it to all of you.. the best outcome possibly!!! My doctor said, that i had to be patiente, the procedure is a normal stuff to medicine, but in fact, is a high charge to the knee, lots of stuff being held there... but that it would be all fine sonner than i would belive!

**i will continue in the next post, since my original post can´t have more than 4.096 chars

Wes said...

... continuing ... Backing to history..After my 3 weeks of basic physiotherapy, i was released to go to gym and rebuild slowly all my muscles and the power of my leg .. started with some bycicle and light exercises .. with pain and some discomforts that was letting me down, which started to fully disappear with 3.. 4 months!
In December, with 5 months, my doctor released me to resume my tennis training tips, taking it lightly, and increasing my moviment, power and performance, as much confortable as i was going to fell, and it would become automatically my own proprioception exercise...
In 21 January 2012, with 6 months and 18 days, i won an championship, having to play 3 matches on Saturday, and 2 on monday, the first one that i played since the surgery! It was all great ... and now with 9 months, its all perfect, even better that i would ever imagine!!!
Stay calm guys.. specially you who likes to play sports... this thing, is THE THING! The graft is a lot tougher, strong, solid and powerfull than the original MPFL...
When i was all down, things started to get a lot better in the transition of month 3 to 4, suddenly!!! And listen .. you guys had 2.. 3 dislocations ... i had more, a loooot more, and i have chondromalacia 4th level since the first dislocation, back in 2002 ... now days i have like 8%.. 10% of my patellar cartillage, and i can secure you, thats not big deal ... i´m playing my best tennis, and to be honest, i didn´t do the best rehab.. in the first 3 months, ok, i was there.. 2 strong gym sessions 5 days a week .. but then i left gym and went to just swimming and started to get lightly my muscular rebuild .. i´m not even close to where it should be, but its still fine, and no worries! I was thinking why i didn´t do it 10 years ago ... the only thing that i´m happy to go to surgery just now days, its because how easy, simple and advanced this procedure became .. it wouldn´t be the same back in 2002!

One last advice, if you are affraid to do this surgery, don´t be, MPFL since damaged one time, won´t heal alone, it won´t be 100% again! Post and rehab won´t be easy, but the final trophy is priceless!

So people.. stay calm... and be patiente ... all will be fine!!

Good Luck .. stay with God!

Bye!! ;)

Anonymous said...

7 months post MPFL on left leg. I had a lateral release on my right 2 years ago. As a healthcare worker, the most important advice I would give the first 2 weeks post OP ice..ice..ice. I used a game ready machine every hour for 20 minutes the first week. I strapped it on at night. Keeps the swelling down. No Swelling=No Pain, I never used any pain medicine. Slow progress, leg is still weak and gives out at times. Never stop strengthening and stretching. Good Luck!

Sarai said...

WOW! I wish i would have found this blog last year! I underwent MPFL surgery Feb. 2011 and before that I had to have loose cartlidge removed due to the MPFL injury and man was the recovery hard for me. My progress was very slow at the begining and I was in PT 3x a week and getting my ROM was painfull and slow.It's been a year and 3 months since then and I have not regained full ROM which my PT and Ortho surgeon said that was normal since I had 2 surgies within months of eachother, so I still can not kneel down or do a full indian style sit... I dont asticipate doing those things again but my quads are getting stronger and I am able to do alot of my normal activities without much pain or swelling. Stretching and strengthing are the key and icing after working your knees. Good luck to those who have to undergo MPFL repair. :o)

Sarai said...

Also, I worked my butt off at home on the days I didn't have PT, and even though stretching was so painful to the point I wanted to throw up I didnt give up. I also did alot of accupunture, cupping (to remove scar tissue, which helped me gain more ROM without pain) and orthobionamy to help loosen tight muscles and hamstrings...these helped me get my 135 degrees ROM (normal ROM on left for me is 146)
So for those of you having to go through MPFL reconstruction, DON'T GIVE UP on your PT and stretching... it's worth it! And when your down and out emotionally just keep your chin up ( i know part of the recovery is emotional), you will get through it. :o) Good luck!

Anonymous said...

Hi, I'm 19 years old and had this surgery on my right knee 6 weeks ago. I'm still on my crutches and have to wear a brace but my physio has said I can start to ween off my brace. :-D I can only bend my knee 50 degrees which is so annoying. I'm desperate to back swimming and things but guess I'll have to wait about longer :-( I was wondering if you can tell me how long it was before you had enough movement that you could go back to work. I work in a nursery and I'm desprate to get back. Thanks a lot lianne

Anonymous said...

Hello. I am a 28 year old active woman who fell over my child in Walmart back in Jan 2012 and dislocated my knee. I had surgery to clean my knee out bc they said a piece of bone chipped off when injury occurred. After three mths of pt I started noticing my knee cap moving side to side while going from 90 degrees up to straight out and back down. So I then saw my doc and then went to a second doc and he and I decided to do mpfl reconstruction on April 4, 2012. Surgery wasn't as bad as I thought but recently in the past week my knee has started swelling and will not go down. Also something popped in it at pt while doing leg presses two days ago. Doc said I just aggravated something in it but he wanted me at 110 by July 13 or he would think about putting me under to bend it (sounds like an easier way but I heard it worst than it sounds so I do not want that). I can do 110 degrees on cpm machine but my boyfriend say it’s not really 110 degrees. I am also terrified to bend too far and push myself too much bc I am worried I might mess something up. I have been pushing myself but I do not like anyone else like pt people to bend it bc they don’t know when to stop. I will do everything I can but when I’m screaming in pain and asking them to stop they don’t. (IM A BIG BABY)I also have a lot of catching up to do with muscles in quads since they have not been working correctly since Jan. Any suggestions???

Junkgirl said...

Anonymous from June 14--You won't hurt anything--keep stretching! You've got to push yourself. Here's what I did: I bought a yoga stretching strap. I would lay on my stomach and put the loop around my ankle. Then, while on my stomach, I would pull my ankle toward my butt, thus stretching my quads and bending my knee. I could fully touch my foot to my butt by the end of the fifth week.

The best advice I can give is to just breathe through the pain as you stretch. I, too, felt some strange popping and what felt like things moving around in my knee. But I kept doing it. I did it every half hour for six weeks. I would do one stretch as far as I could, hold it for several seconds, and then just pull a little bit more each time. Each time it would loosen up a bit more, and then I'd give myself a goal of stretching more next time or holding it for longer. I know that I healed more quickly because of this. Just breathe through the pain! And ice your knee, too!

Anonymous said...

Hey guys! About a week ago I fell and dislocated my patella, then it just kept dislocating, five times in one weekend....having surgery to repair not replace the mpfl and he said to "tighten everything back up" said id be in the brace for four weeks and pt for three months. Do Yall think this horrible terrifying unstable "my kneecap could go at any second" feeling being gone is worth the pain post op? I'm not having second thoughts its just that I have a pretty good pain tolerance but can NOT continue to live with all these dislocations. Also do Yall think if I would have immobilized the knee immediately after the first dislocation instead of trying to walk on it I wouldn't have had immediate recurrences? This is all so scary. Thanks, Mary

Anonymous said...

Hello, i am due to have this surgery in a month or so and i am finding it really helpful to read your story. I was wondering how long you are incapacitated for as i am about to start university. How long were you on crutches for? Thank you, Emma-Grace

Anonymous said...

Hi there!

I had MPFL surgery roughly a year and a half ago on my left knee. My strength and ROM are good, however I'm still having issues "trusting" my kness, as it still feels different compared to the other knee. It literally feels as if a rubber band is attached to me knee. I know it's functionally more stable, yet I'm not used to the feeling (and I know this is sad because it's literally been 1.5 years!). Has anyone else encountered this? Does it feel like a rubber band is attached to your knee?

Joanna said...

Thank you so much for this blog! I had my mpfl replaced on my left knee on 11/8 with a lateral release and a scope. As of 3 days ago, I was stuck at 60 degrees. I got so scared I wouldn't regain my rom that I got on my cpm and used it hours on end until I got to 90 last night!! I want to vomit from 80 through 90 but know I have to do it. I'm curious about a few things...I have felt shifting and pulling that scares me. Are you guys feeling that while pushing yourself hard? I read that several of you tried the stationary bike...thumbs up or down? And how about swimming? I'm going to get a yoga strap tomorrow. I started stretching that way the other day and it feels good. Also, I've found that taking a hot bath feels great...especially before stretching. Then ice post stretching.

This surgery was shocking to me in the amount of time needed for recovery. I've had surgery after a nasty horse accident. I only took two weeks off after having my daughter (I'm self employed). So I like to think I'm tough. When my doc told me I would need to take 2 months off, I laughed. But he was absolutely right. You have to allow yourself to heal!

As for the rubberband feeling that someone mentioned, I totally feel that. Anyone else?

Thank you so much for this blog! It's hard to find info on this surgery!!!

Joanna

Anonymous said...

Hi! I'm having this surgery on feb 19th and I can't wait! Just wondering how long you had to take off of work? My surgeon said 4 weeks but I'm hoping I can go back earlier than that!

Cheers,

Hayley

Anonymous said...

My surgeon said 2 months. I just started back to work and it's been 2 months. I would love to take another month!! I had more than just the mpfl replacement tho. Good luck!

Anonymous said...

Oh wow! Thanks for the heads up on that! Yeah I'm only having the mpfl surgery so my recovery time may be faster. Thanks heaps for letting me know :)

Anonymous said...

Just found out I'm getting this surgery on the 28th, and I'm pretty freaked out about it. I've always had joint problems and being 21 years old with rheumatoid arthritis also makes everyday things very difficult. But reading some of this gave me a bit of relief, still scared outta my mind since I've never had surgery or anything serious done. But I'm hoping that this does the trick! Thanks for sharing :)

Anonymous said...

My surgeon by the way said I'll be out of work for atleast 8-10 weeks, and I won't feel "normal" for another 6 months or so.

Anonymous said...

Thanks for such a great post on this surgery. I am unfortunately one of those really unlucky knee people. I have had my knee scoped three times, one major surgery to fix damaged ligaments due to horrible dislocation and then thinking it would be my last a partial knee replacement.

Turns out it wasn't my last. Seems as though my lovely knee keeps wanting to dislocate even after all of that work. Now, I am scheduled for a MPFL (#6) and hoping for the best.

I am pretty nervous about this surgery with down time, pain, PT after being immobilized for 6-weeks, etc. All of that being said, your post seemed to knock that concern down a bit and I thank you for that.

pauley said...

Hello,
Im 40 yr old female, athletic.. however my left knee started dislocating at age 14 and never really stopped. I have gotten OA braces, and some helped during skiing or activity (no running or cutting movements, have not been able to do since age 30)scopes, lateral release, etc..no relief, I just had this surgery done 9 days ago. ROM up to 85, ice continual. I would like to start PT as soon as possible but it looks like it will be 4 weeks. Thank you all for posting, it has been very helpful as I lay here and sometimes panic... On the return to work, if you have a job which is desk mostly, she said I could go back in 10 days post surgery...If I had a physical job it would be much longer..

Lizzie said...

Hi Junkgirl,

I just wanted to thank you for your blog and the suggestion of the yoga mat strap -- it' saving the day for me! I too had read horror stories on kneeguru and (1 day post op) am feeling so much better already. I'm sure I'll be back to your blog many times in the coming weeks. Best, Lizzie (www.allthingscandid.com)

Anonymous said...

Thanks everyone for sharing your experience with the MPFL reconstruction. My 16 year old daughter had the surgery on April 10th, one week after dislocating her right knee for the second time (she also dislocated her left knee once when she was 12). Ten weeks postop my daughter's flexion was 130 degrees today:)We are very pleased because she was less than 90 6 weeks postop and she has been working very hard at stretches and PT to increase her ROM. She has been going to PT about 3 times/week. Our insurance only allows 25 visits per year for PT and we only have 4 visits left. The surgeon and PT are submitting notes to the Insurance Medical Review to try to get more visits. At this point I don't want to depend on all at home exercises but maybe I'm wrong. We do have an exercise bike and treadmill at home. How many months of PT did you go for? Thanks again everyone for the positive stories and suggestions for recovery.

Rachel said...

I wanted to start sharing my experience. It sounds like everyone’s experiences vary, and I’m just about in the middle of the road.

9 days before surgery: Dislocate my kneecap for the fourth time – second time as a “traumatic dislocation”. The first dislocation was traumatic due to cartilage damage. This fourth location I broke off a small piece of bone.

8 days before surgery: My friend brought me crutches. We went to see the doctor and get an x-ray. The bone fragment which is broken is around the size of a pea. I have cartilage damage around the size of a quarter. The doctor recommended MPFL reconstruction. While I tuned out once he said “surgery”, my friend says he gave me information about the orthoscopic portion of the surgery which would remove the bone fragments (which might be in the joint and therefore cause additional damage) and the rest of the MPFL procedure which would ensure I stop dislocating my kneecap and prevent future damage which leads to arthritis (which he said I would definitely have later in life anyway).

5 days before surgery: Spoke to my physical therapist. He recommended working on strengthening my vastus medialus (inside part of my quad) and working on my hips for strength and balance. He also recommended trying to balance on each leg for up to 60 seconds, which was impossible since my knee was still pretty swollen.

4 days before surgery: Terrified of my upcoming horrors I went to another orthopedic surgeon for a second opinion. He fully explained the procedure and CONFIRMED THAT THE VIDEOS ONLINE ARE FAR MORE GORY THAN THE PROCEDURE WHICH IS NOW USED. This is important, folks. Do NOT watch the videos on YouTube. They scared me beyond belief. Nowwa days it’s far simpler surgery than it was five years ago. The doctor also said surgery is probably the best route to take, and is required in any case if the loose bone fragments are in my joint, which the MRI will tell.

1 day before surgery: Followed up with my doctor who really didn’t give me much more information other than saying he’ll look at the MRI in the morning and I should be there for surgery at 6:30 am. I went for an MRI after speaking to the doctor. After leaving, the anesthesiologist called to talk to me. He was interested to know about any drug/drinking habits and overall just tried to comfort me about the surgery. We also picked up 2 mg Xanax for me to take that night to ease my nerves.

Surgery day (6/11/13): No food or water after midnight. No lotions, etc… We were on time and I was feeling fine thanks to the Xanax. I paid my deductible and they brought me back and started an IV. I remember things on and off after that, like I remember getting on to the operating table. After that nothing until the recovery room. I kept asking for my fiancĂ© so they brought him back as soon as I woke up. He gave me water and I don’t remember getting very sick at all. They kept telling me to keep breathing. We got me home and I slept most of the day and night.

1 day post op: I managed to work on my computer a bit from bed – the main issue with getting work done was the pain pills (percocet). My knee definitely hurt, and I tweaked something while trying to get to the bathroom with my crutches (even with the locked out brace). They had me wearing a muscle massager thing that prevents clots – this stayed on for three days. It felt good at first but started to hurt after a while. Lots of ice and elevation, but I wasn’t given any kind of ice machine.

2 days post op: Had my first PT appointment. They had me do some foot exercises with a theraband along with side leg raises and ROM exercises (heel slides). Stopped taking pain medicine for my knee, but my back is starting to hurt from having to sleep flat on my back.

6 days post op: PT added leg lifts in all directions. Having major lower back issues from all the awkward movement and bad sleeping position.

Rachel said...

Continuing:

8 days post op: Had my stitches removed from the orthoscopic parts of the surgery (five holes to clean under my kneecap). I got permission to shower but not soak in a tub. I also got permission to release the brace to 30 degrees while sleeping, but not while walking (for 6 weeks total). Also went to PT. They are now having me do crunches and actual quad raises (on a large towel roll or something). They also taught me to walk without the crutches. No more crutches! They also set the brace at 45 degrees for resting/sleeping.
9 days post op: My leg definitely still prefers to be elevated, but I managed to attend a concert and hobble around without my crutches. Beer helps. Sleeping is still uncomfortable but now less for my back and more for my knee (sleeping on my side it starts to hurt and it always gets stiff regardless of my position).

10 days post op: We went to a movie today and I was playing with my range of motion (set to 45 degrees). Took it too far. I got home and started feeling a sharp pain under my kneecap. Took a pain pill.

11 days post op: Since the overkill on range of motion at the movie last night, it hurts again and gets swollen really easily.

13 days post op: Still having swelling issues but the pain is pretty much gone again. The doctors office said to take it easy on range of motion as I probably irritated it. I’m worried I messed it up completely (pulled an anchor or something) but they said that is unlikely. I’m at around 55 degrees for my heel slides but they said to relax on that for now. PT later today and I’ll update again sometime soon!

shanti rachlis said...

hi rachel, im 17 years old& just had this surgery 5 days ago. im iceing all the time & elevating. i would like to begin exersizing my knee but dont know of any stretches.

im seeing my phyisical therapist on july 8th but i was told that i should be pretty much walking without my cruches by then. do you have some tips that can help me get to where i should be by then?
thank you
-Shanti C.

shanti rachlis said...

btw not sure if you had this aswell, but they used a graft if that differs anything

Anonymous said...

Hello All,
I have put together a MPFL Ligament Reconstruction Cheat Sheet. This surgery was quite extensive, more then I had expected and I am hoping my experiences can help others who are having this reconstruction. The surgery was very successful and worth it so far (8 weeks post-op).

Email me for a cheat sheet on getting through this surgery and the items you should expect to rent/purchase.
pauleygan1@aol.com
Subject line - MPFL Cheat Sheet

pauley said...

Hello Shanti,

The PT for the first 6 weeks is Range of Motion exercies and quad sets. See this protocol from a well respected female orthopedic surgeon.
http://www.vondawright.com/mpfl-rehab/

Anonymous said...

Hi,

My 10 year old daughter had this surgery 10 days ago. At the checkup today she was placed in a cast for 3 weeks. Has anyone else had to use a cast after the MPFL Reconstruction.

Thanks,
Tina

Jeh said...

~M~ (Maggie) I just read your comments and I have exactly the same problems you mentioned and I too cannot run but am still able to walk and do other activities like cycling. My story mirrors yours basically. So I was wondering after your MPFL surgery are you now able to run again?? I would love to hear from you. Thanks.

Grace said...

Hi Junkgirl, so glad to come across this blog, it has been very helpful reading about your experience as well as other people's. I am 8 days post op on my right knee and still feeling quite a bit of pain, esp. at night. I have not seen my PT yet but I have started trying to bend the knee as I know that increasing ROM is important for recovery. Still on crutches, but I've also bought a cane and started to use it although I feel very unstable whenever I try to put any weight on it. I ordered the stretching strap on amazon and can't wait to use it. I also want to order the kinesiology tape, but wanted to ask if you can post some pics or a video of how to tape it on. I think this would really be helpful to all of us. Would love your input. Thanks.

SP said...

Hi Junkgirl,
Thank you for posting about your experience, it's definitely comforting to read your blog after the scary stuff on kneeguru. I am a 27 year old female, relatively active (yoga and swimming, mostly) but not really "an athlete". I had a patella dislocation 12 years ago and managed with extensive PT. I recently had another dislocation and was told I had torn my MPFL. I never got an MRI the first time so I don't know if the tear is new. My doctor (at Hospital for Special Surgery in NYC, very reputable) suggested MPFL reconstruction even before the MRI results, because I have loose ligaments and had a second dislocation, albeit after a long time. I am debating whether to try PT and hope for the best or to get the surgery to prevent any further damage. But I am nervous about how new this surgery is and potential complications after. This would be my first surgery and given how long between my two dislocations, I am confused about which approach to take. I didn't walk around feeling my knee is unstable and only noticed when doing certain things, but I do know I have loose ligaments and that arthritis runs in my family. I do not want to worry about dislocating when I do yoga or go hiking, or even just walking around (that's how it happened the first time!), but I also don't want to trade problems and bring on complications and pain from surgery in the future.

Any advice?

Thanks!
S

Anonymous said...

Im 4 weeks post op and im only at 72! And i have to be at 90... very hard because of swelling and stiffness... i do the exercises at home,massage my leg, elevate my leg, ice my knee (occasional compression sock to help with swelling). I even bring my legs over the edge of the bed and slowly let my left leg down till i cant go anymore because of the stiffness. Lost all muscle in my left leg. If it werent for the swelling and stiffness, i feel i would be able to bend mor and better. Looking forward to having the brace off and able to sleep again...

Jen Stavrakis said...

Hi there,

I had my MPFL reconstruction done 4 days ago with a MUA and scar tissue removal. I am on a pretty regimented pain pill schedule but I continue have severe pain, that I almost feel as if I keep re-injuring myself. I am immobilized and elevated and on ice pretty much most of the day except to crutch to the bathroom.
Any advice? Is the extreme pain normal, and shoukd I just be patient?

Thank you!

Jen

Junkgirl said...

Hi, Jen--
Thanks for posting! I hope that your pain is starting to improve. I did not have much pain at all, but I've been told by others that I have an extremely high pain tolerance. My doctor said he's had some people who are in terrible pain, and others (like me) who feel nothing. I never used crutches because I had no pain when walking. But, I would check in with your doctor just to make sure everything is okay...maybe he/she can give you stronger pain meds. I started with percocet and then went to vicodin. Honestly, vicodin doesn't do much for me...percocet was much better. And, do stick to your regimen---don't let the pain build up. If the bottle said every 4-6 hours, I always took it at the 4 hour mark. But, I was only taking pain meds for about 4 days. Good luck...hang in there! It does get better! Junkgirl

Wes said...

Hi, im from Brazil ... im 28 years old, i came here weeks before my surgery (july 2011), posted before, after and during my rehab, i shared all my fears during the process, but some comments just didnt get in, because i was posting as anonymous. To start, my knee, after 2 years, is 100000% great! Jen, pain is part of the process and doesn´t mean nothing! From where, all this pain comes? As my doctor said... Just think about it, you have your bone perforated, broken, intentionally... you have a screw set on and in it. You got all your healthy lateral ligaments (of the other side) hurt and cut intentionally, which is the "lateral release" procedure, to relieve the local pressure and to reestablish the normal biomecanic and position of your patella and knee overall caused by the weakness of your regular MPFL due to the injury... You have some tissue extracted from some healthy area and inserted on the lateral of your bone, to be a new MPFL. Not to mention the skin cut, and all the blood inside of your knee, and all the procedure itself, using drilling machine, hammer and other stuff... As my medic said, can you see, can u glimpse the dimension, the dynamic of everything was done with your knee? Man, all i can say, it was huge.. artistically and prettily huge!
The pos surgery will vary from people to people...
All i can say is, i play pro tennis and i dealed with this for 10 years... from my 16s, to my 26s i had my surgery back in July 2011, after maybe, my 5th huge dislocation, and maybe my 20 semi dislocation, and believe me, after the surgery and during my rehab, i had some incredible pain, disconfort and all you can imagine... but i went through it... sometimes i thought "is this really ok? Was it a sucess? Really?" ... i´m the answer, 6 months after the surgery, all cleared, and i went to win 2 tournaments in a roll, with a little plain still and some fellings here and there, but it suddenly disappeared in the next weeks and months... and now... 2 years later...i´m playing my best tennis, and my knee, my patella and everything, never, absolutly NEVER, bothered me again ... this surgery is a miracle, i never thought that my knee could be normal again and that i could even RUN with a free mind ... !!!
With all the strange fellings during the rehab, trust me, it all will pass...
Stay good!! Keep the faith!

Ben List said...

Wow I wish I would have found this blog a year ago! I had MPFL reconstruction myself just over 1 year ago after I dislocated my patella and tore my MCL while playing ultimate Frisbee. I had just realized today that it has been over a year now and so I got a little concerned that my knee was still a bit swollen and I usually have to stretch it out in order to get my full range of motion, but even then that is questionable at times. Its really reassuring though to see that you and everyone else here has had a very similar experience to me. I remember being in the straight leg brace for about 6 weeks (that thing was the worst!) And then after that I wore a sports brace/knee stabilized for About 5 months (my doc told me to take it off after about 3 months but i just felt so secure with it on that it took me a long time to become accustomed to not wearing it. I would like to recommend for those of you out there ggoing through this to pick up cycling, I started cycling pretty heavily about 6months after surgery and I would have to say that I noticed some of the biggest improvements in regards to general stiffness and range of motion once I started cycling regularly. Best wishes to all of you out there who are still going through this. Its not a fun process but with hard work and determination you can pull through it!

Chase said...

I'm so glad I found this sight! I had my mpfl surgery with a lateral release on 12/04/2012, and about three weeks (just before I started PT) I slipped on my crutches and broke my kneecap! After two CT scans we decided to let it heal on its own without a second surgery. I am very nervous because it has been over two months on crutches without physical therapy and my leg has atrophied so much more than I expected.. Anybody have the patella fracture complication?

buttercups said...

After tens of dislocations, 3 of which were extreme and required ambulance trips, 3 previous surgeries, and 8 years on crutches (11-18 years old), I did the surgery 4 days ago. I had a femoral pain block before surgery due to the fact I have zero pain tolerance. 4 am the day after surgery when the block wrote off I experienced the worst pain in my life. Surgery was Wed. Sunday night and I'm able to hobble w/o crutches and my knee really wants to start bending.

I'd really appreciate it if all of the people who've had the surgery let me know how you feel about the results a year, two years later. I'm concerned and having huge second thoughts about doing it. Thanks.

Junkgirl said...

buttercups--It has now been almost four years since my surgery, and I have no doubts. Although my knee will never be perfect, it is much more stable than it ever was. It takes a lot of time to heal from this surgery, but if you've had multiple dislocations (like both of us had), I would much rather go through this and bear the temporary pain than risk repeated and long-term pain of dislocations. I'm sorry you have so much pain--I think it will start to go away fairly fast. I hope you have pain meds. I was told I should never wait until the pain gets bad before I take them. My doc told me to try to stay on top of it before the pain got horrible, so that's why I think I never had terrible pain. Good luck--it really does get better with time.

Jeh said...

Hi,

Thanks for all the feedback guys. I am considering this surgery too as I've had lots of patella dislocations when I was in school and now my patella is very loose. I've had a lateral release operation done 15 years ago but this only slightly improved my knee and the only benefit I can see from this operation was that it stopped my patella from going off track further to the lateral side when my knee was relaxed. I don't see how this operation was justified as dislocations still happen for me!

Fast forward to now and I am 35 years old and very careful about how I do my daily activities. I can't walk on snow or ice. I can't run. I can't come downstairs without holding the handrail. So now I can't do many activities that most of us take for granted like playing any sports that require running. So it has had a big impact on my life and as a result I've been depressed and have lost many friends due the fact I can no longer socialise with them by playing sports.

A few years ago I stumbled upon the MPFL surgery and how it fixes the knee and makes it more stable. And I would like to go ahead with it but at the same time I am rather reluctant to as I don't want it to be like my previous 'lateral release' procedure where there was only a slight improvement. Basically I don't want to go through all the pain and discomfort for little or nothing results, not to mention the damage done to the knee by operating surgeons.

So, I would like to know if anyone who has had the MPFL surgery done, are you able to play sports and do running activities after the knee has recovered from the surgery? And have you had any major obstacles that you had to overcome after the MPFL surgery?

Thank you in advance for any replies to my questions and thanks 'Junkgirl' for creating this blog!!

Jen Stavrakis said...

Hi Junkgirl and everyone who has gone through this MPFL reconstruction process.

*Before I start, my story is NOT common, so I don't want to freak anyone out.

I have had many, many dislocations since I was about 13 years old. 1 on the right knee and about 4 on the left. If I didn't dislocate that knee, I would end up with a sprain.

-In May 2013, I got married and during the reception, I fell (alcohol wasn't even involved, like I've been asked 50000x)and dislocated my left knee, sprained my ACL, LCL, tore my MPFL, and had a severe femur contusion. I was carted out of my own wedding by stretcher. I am an occupational therapist also, and earlier that week, I had tweaked my knee while working with a patient but by the time the wedding came, I THOUGHT everything was fine...I even contemplated wearing a brace...should have.
Anyway, I was treated for a basic dislocation for 4 months with no progress and had to remain NWB because my femur bruise would not heal. My first ortho told me I had to understand that I "would never walk normally again." I had become contracted and could not extend my knee. Finally we were able to get a second opinion- before the doctor even saw me he knew from my 3 MRIs, xray and all the original ortho's and PT's clinical notes, that I needed surgery. My new ortho told me that every time I was walking, even in a J-Brace at the time with crutches, my knee was dislocating. So 5 months (October, 2013) after my original injury (on my wedding day, mind you) I had MPFL reconstruction with manipulation.
I woke up in recovery screaming because the pain was so intense, to the point that they had to admit me overnight for pain management.
-I was in a locked brace for about 2 weeks and then it was eventually unlocked. But by the time 4 weeks then 6 weeks passed, I was unable to achieve any flexion past 55 degrees even through ridiculously painful PT sessions. SO 3 months after he original MPFL reconstruction in January 2014, I had my second manipulation. I was admitted again overnight, and had a femoral block (what were they blocking? because I still felt everything). I think the manipulation was WORSE in pain than the original reconstruction.
-So now, it is March...almost April. I am rounding on almost 11 months from my initial date of injury, 5 months since surgery and being on crutches the ENTIRE 11 months.
-My job as an OT? Since the day of my injury, I was told I could not come back until I was full-duty. I have been given light-duty status, but unable to find anywhere who will hire a therapist who is still on 1-crutch.
-The slightest of missteps on my left leg will cause me a week of set-backs in pain, movement, and swelling. And I can still feel a lot of scar tissue moving around when I move my leg.
-My new husband and I have not had a married day in almost a year when I have not been injured and he has had to support me. This injury/surgery, has drained us financially, emotionally and spiritually.

*That all being said, I am not a normal case. I was contracted and had been non-weight bearing for 4.5 months prior to my MPFL reconstruction. I was very active and fit before my injury as well. I would like to know if others are still struggling with not being able to have a "typical" gait pattern when walking due to extreme pain in the joint and the inability to squat because the same as above. Do some of you wear any sort of compression brace or a brace of any type when you go to the gym or do more activities? Has anyone else been on crutches, 1 crutch for nearly a year?

I am at my wits end with all of this-
I am only 28.

bonbuttercups said...

Checking in - 12 days post-op (Monday 3/31). After I got through the femoral nerve block wearing off (worst pain ever), I began weight bearing using one crutch only on day 3. I stopped all pain pills and muscle relaxants by day 6 and only take 2 Aleve in the morning and 2 at night. It's now day 12, I took a very careful shower yesterday (not a bath). I'm completely weight bearing with no crutches. My knee gets tired around 4pm, and I grab a crutch just for stability. I started driving on Saturday as I was able to bend to 30° and get in my truck. I've adjusted my dial to 40° and will continue to get my knee to bend to this degree for the next week. The biggest issue with bending is not so much tightness on the sides of my knee, but on the top where the incision is; my steri-strips are still on an they seem to give a lot of resistance to bending. I'm icing about 3-4 times a day still (if you do this surgery, I highly recommend spending $150 and getting a cold pump - well worth the money). The X-Ray really show how much my doc moved my knee cap (posting a link to my Facebook photos below so you can check it out). I don't have any more severe pain. Occasionally a rogue nerve will start to fire leaving me with a little zappy pain feeling. Stiffness is beginning to take over, especially in the morning when I wake up (takes me about 10 min. to get out of bed). Right now the worst discomfort is sleeping in this leg brace every night, but it's healed enough that I can sleep on my sides now without having pain. Also, I take a CRAPLOAD of supplements to keep the swelling down and infection away: Turmeric, cinnamon, ginger, D'Arco tea, horsetail, alfalfa, Vitamin E... don't be afraid to bulk up on your vitamins and minerals - your body needs them. I'll update in a few more weeks.

https://www.facebook.com/media/set/?set=a.10152274784538232.1073741850.570568231&type=1&l=fe6a7325f0

Leslie said...

I feel so thankful and relieved for finding this blog. I am a 25 y/o female that has had 3 major dislocations on the left knee and 1 on the right. Major being completely dislocated, ambulance trip to ER. It had been 10 years since the last dislocation in 2003 but it happened again on 04/24/2013. I stepped off a curb at the airport --didn't even fall... just *pop* completely out. I had to have a stranger help me get onto the ground because I was holding onto my suitcase to keep me up. Anyway... it's been 14 months now and I just scheduled my surgery for 07/29/2014. I am excited to no longer be living in seriously debilitating and constant fear. I can't even walk in a straight line or down the stairs in my house without being scared that my knee's just going to blow on me. I am relatively active --I strength train, swim, and bike. My doctor has said nothing about it taking 1.5 years for full recovery (he says 6 months), so I'm a little alarmed... Do you have any recommendations for how to prepare my body for this surgery so that recovery will be quicker? Any particular exercises I can be doing? I only have about 3 weeks until I can go back to work after the surgery, so I want to get on top of this now, so recovery can be smooth. I've read so many horror stories, so I'm so glad to have found a place where people are sharing positive experiences.

One more thing... my primary care physician was the one that gave me the referral for my MRI, so they sent him a copy. He called me and told me that I don't need surgery, and that I should just go to P/T. I feel very conflicted now. Even my specialist says that despite all of the injury it's sustained, it looks like it's in pretty good shape minus the loose mpfl, but he still recommends surgery. Any thoughts on this? Thank you so much!

Jeh said...

Hi Leslie, thanks for sharing your story. I too was so glad I found this blog.

I would recommend P/T first if you haven't had it already and the main aim of P/T is to strengthen your quad and other leg muscles so that your knee is more stable. However, P/T doesn't always cure the problem and I certainly found this with my own experience. You have to be diligent and disciplined to perform the exercises regularly or you'll find that overtime the knee (muscles around it) become weak again. So you have to be on top of your P/T and do the work required on a regular basis.

I too suffer from patella subluxation and have yet to undergo the MPFL surgery mainly because of my own fear that it may make things worse. From my own research, I have found that after a few dislocations of the patella (kneecap) the MPFL ligament becomes stretched and looses it's abiltiy to stablise the knee assuming of course the patella dislocates laterally. I have found that the "MPFL reconstruction" is a relatively new surgical procedure whereby the surgeons create a new MPFL ligament.

Back in 1997, I had a lateral release procedure performed on my knee and at the time I was unaware of the fact that this surgery won't cure my problem. Nevertheless, the surgeon didn't explain this to me so I was under the impression after surgery I would be able to run and dance like I did when I was a child. Unfortunately, for me that day never came and I did intensive P/T after the surgery and was still unable to run freely or go about my day care-free without worrying about dislocations. Hence, my reluctance now in going for any type of surgery as I know better now.

My advice to you is to ask lots and lots of questions to your surgeon if you are contemplating this MPFL surgery and make sure you know what outcome you want after the surgery as my experience suggests that surgeons might have another outcome in mind and for you this may not be good enough. Also I would suggest that in the meantime try to make your quad and leg muscles as strong as possible by peforming lots of exercises so that your muscles are strong before the surgery as I would imagine a lot of shrinkage will occur naturally after the surgery and to counteract this strong muscles before will probably make things easier for you when you have to do intensive P/T after the surgery. And finally make sure you have all the things set-up beforehand at home as I would imagine you will need a lot of help during the first few days after the surgery so make sure things are arranged at home to make life easier for you mobility wise.

In my opinion, no surgery is the best way to go. But sometimes surgery is necessary to fix things and put things right. So make sure you are very well informed about it before you go ahead with it. After all it's your knee and you are going to have to live with it!

I too am considering somekind of surgery on my knee in the future when I feel it's the right time for me as I'm currently undergoing other challenges first and want to sort those out beforehand. Currently, I too am very careful about going downstairs and at the moment I am unable to perform any running activities. But as I have found with my surgery in 1997 you can't rush into these things as sometimes it doesn't work out the way you like it too.

Anyway, best of luck with whatever path you decide to go on and again if it was me I would give P/T my best shot and really push myself hard. And then at least you will know if P/T helped or not and then you can go and opt for surgery knowing you did your best.

Jeh

bonbuttercups said...

[PART 1]

I spoke with Leslie (2 posts above) last night for several hours about her upcoming surgery. One thing I noticed with any blog and people who've had surgery is after they start their lives again we never hear about the outcome so 2 days shy of 4 months, here's my update. (I have to do this in more than one post so start at the top).

My surgery was on March 18th and I'd been dislocating since I was 11 (right) and 13 (left). When my doc told me about this surgery (which was not around when I started dislocating 34/32 years ago) I jumped on it immediately. You can read the history a few posts up.

Backing up a bit - my MPFL surgery was a bit more complicated than most (see before/after photos of the knee position here: https://www.facebook.com/photo.php?fbid=10152413447103232&set=a.10152274784538232.1073741850.570568231&type=3&theater). My surgery involved not only the cadaver ligament insertion, but moving my knee cap, shaving off the sharp points on the knee cap, removing all of the scar tissue and arthritis under the knee cap and repositioning all of my muscles, ligaments and tendons to accommodate the new knee cap home. My doc actually took my knee cap out of my body (really f'ing gross). This came with a lot of other complications that most won't experience - so to nutshell it, I'm the "worst-case scenario".

I've had to live with 32 years of fear... if it feels weird, it's about to dislocate. If I twist wrong, it may dislocate. Careful about taking a step, it may dislocate. I can't partake in that sport, my knees dislocate. No, I can't go hiking, I may dislocate in the desert and get eaten by a coyote. I need my phone, if I dislocate I need to be able to call 911 -- I know every one of you on this blog understands this fear - is a shared fear for anyone who has chronically dislocated. That being said, a huge part of this surgery is dealing with the emotional and mental healing of understanding that once done, you are not dislocating! Personally, it was 75% of my battle. I'll come back to this later.

Remember, 32 years of trained thinking that if my knee feels weird, I'm going down. They also moved my cap what, a quarter of an inch? Well, my little groove has never been touched by anything in 45 years - so when that knee cap started tracking properly in the groove, it was like fingernails on a chalkboard for me. My kneecap groove is a virgin - never been touched. So anytime I accidentally lost my balance, tightened up my left knee, stepped wrong, that strange sensation (knee cap tracking in/touching the groove) made me go into panic attacks - literally. I would go into immediate tears, start hyperventilating, etc. This fear put my PT (physical therapy) back a month because my therapist had to get me over this [now] irrational fear that my knee was about to dislocate.

BACK TO WORK/DRIVING: I had my surgery on Wednesday, March 19. I went back to work on April 7 (drove myself, but it was my left leg). I didn't sit at my desk, however. I brought pillows, blankets, and my laptop and a laptop tray I bought and sat on the floor in my office. The stiffness in my knee was too great to allow me to sit at a desk. Don't be shy about finding workarounds for your office. I started sitting at my desk full time about a month later. I would switch from desk to floor just to stay comfortable. I also brought my ice pump to work and iced that thing several times a day.

Also, if this were my right leg, I wouldn't have been able to drive for 2 more weeks due to strength/bending in the leg. You have to be able to pick it up and step on the brake so if you're doing your right knee, be prepared that you probably won't be driving for at least a month.

bonbuttercups said...

[PART 2]

SLEEPING W/O BRACE: I stopped sleeping in the brace at 7 weeks - 1 week after I started PT. FYI - the reason they want you sleeping in the brace is if you happen to wake up in the middle of the night they don't want you forgetting that you just had surgery and taking a step out of bed - guaranteed you're going down, you will hit the floor, and you may very well rip the newly tethered ligament right out of the side of your knee. Personally, sleeping in the brace was such a bitch I don't think it's possible to fall into that deep a sleep, but I followed doctor's orders to the letter regardless.

OUT OF BRACE: I started PT 6 weeks after my surgery. I was bending to maybe 60°. The first 4 weeks were focused more on mental stability than physical stability - and bending. When summer hit in Lake Havasu City, AZ, and the boating fun started (Memorial Day weekend), I finally broke MOST of the mental chains of "weird feeling = dislocation" and I was ready to be out of my leg brace (and it hit 105° steady). I had my doctor’s appt May 30, and my doc released me from my brace. I was now bending to about 110°. It took 2 more days for me to actually "let it go" and stop using it. I bought a very small brace from McDavid (http://www.mcdavidusa.com/Product/419R/MCDAVID_Level_2_Knee_Support_adjustable.aspx). This brace gave me a bit of stabilization and helped calm my fears of falling. It was just enough to give me a bit more confidence. I wore that every time I went out. I also continued using one crutch for strength/stability. Two things I could not do - any downhill walking or stepping off a curb. Today (7/16/14) I still can't step off a curb with my left leg but it's coming.

PT continued twice a week and after 5 or so weeks in PT I finally got the "shocker" - the electrocution thing that makes the muscles contract. This was crucial for my rehabilitation because my muscles, after being moved and manipulated, were good and pissed off and were not going to fire. It took several weeks to get my big muscle to fire. I was released to go back to the gym on June 16th. I took my first spin class a week later - I was unable to stand up but at least I got back on a bike. Several large events came and went in Havasu - as long as I kept my little McDavid brace with me and had a crutch with me for any downhill walking, I have been fine. I'm even able to keep my balance while underway on a boat now.

Last week (week of July 7th), we started teaching me how to step off steps and walk downhill. All of my PT work is now on the left (surgical) leg. Standing on a block and doing leg squats, touching the right heel to the floor, leg pressing with just my left leg, etc. I walked off my first 2" stair in the PT office yesterday. Downhill is much easier for me now, but I still keep my crutch handy. And remember, much of my fear is because the new knee cap location is still a very foreign feeling to me. Leaning forward on a bent knee shoves that knee cap into the groove, and my groove is still virgin. My doctor said it will take at least a year for it to feel "normal".

Today, I'm taking 2 spin classes a week, a weight class on Friday and able to leg press a whopping 10 lbs. (FYI, I'm very little - 97 lbs). My activity level is almost back to normal. I'm not hiking stairs yet but that should come within 6 weeks I think.

bonbuttercups said...

[PART 3]

AM I SATISFIED WITH THE SURGERY?
Thus far I can't really make a determination, but I will tell you this - I have no fear of dislocation on my left knee - none. That fear is now gone. The only thing I am afraid of is the lack of strength in the knee muscles and falling on the blazing hot cement and getting 2nd degree burns. That being said, Yes, I'm happy I did the surgery.

AM I WALKING NORMAL?
Pretty much. Downhill slopes still make me gimpy. End-of-Day activities leave me tired and a bit gimpy. Mornings are great - I actually get up and walk without thinking about my steps.

PAIN?
The only issue I have is really bad stiffness at night. I wake up every morning between 4 and 4:30 and my knee is very achy and stiff. Also, where the cadaver ligament is attached to the inside of my knee - that area is very sensitive to touch, so laying on my right side with my left leg pulled up is hard. I stole a super soft pillowcase from my PT office and sleep with a very flat and soft pillow so when I'm on the right side I can put my knee on the pillow.

ICING?
I ice only when it feels swollen - and sometimes after a good PT session or workout it's a bit puffy. Keep ice handy - it's a lifesaver.

TIPS FOR THOSE ABOUT TO EMBARK ON THIS SURGERY:

• Do it! Do not go 3 decades living in fear like I did. As hard as this is to stomach, your dislocating knee will NEVER heal itself. You simply don't have a choice. You guys get the fortune of having this fairly new technology available to you, unlike me. Once that knee dislocates the first time, that medial (inside) ligament is already stretched if not torn. It will never be the same without surgery. If your dislocation isn't from an injury, then you've got stretchy ligaments and it's going to happen again.

• Be prepared that no matter how rosie your doctor makes it sound, it's a fucking hard surgery (for lack of any better adjective). It sucks. It's painful. And you will take longer to rehab than you expect to, so just plan on that.

• Be prepared to lose 6 months of a normal life - period. It's the way it is. But those 6 months will bring you a lifetime of no fear. This surgery has a 95% success rate - that's a good percentage.

• Be prepared that much of your rehabilitation will be mental and emotional. As I told Leslie, in two weeks (her surgery is scheduled for June 29) she'll never have to worry about a dislocation again. That's great to hear, but the mind has to accept it.

• Stay ahead of the pain after the surgery! Take the Percocet/Vicodin! If you don't stay ahead of the pain it's brutal.

• Be prepared for the first 3-5 days after surgery being hell. I have very little pain tolerance, so my advice is coming from my experience, but if I can do this, you can, too.

I will be excused from PT in 6 weeks, and I expect that by then I will be walking normal, stepping off steps with my left leg, and back 90%. My goal is to be able to walk on unsteady (desert) ground and climb the stairs at the London Bridge by the end of September.

I honestly feel this was the very best thing I could have ever done. Now my left knee is the good one and the right one is the bad one, and for my entire life it's always been opposite.

If you want to ask me any other questions, you can contact me through the Facebook link (above) and just send me a message.
I hope my story helps those who are concerned. Good luck to you. Disclaimer: I am not giving medical advice as I’m not a doctor. I’m simply telling you my personal story and experience. Thanks.

Junkgirl said...

Thank you for your updates, bonbuttercups! I know EXACTLY what you mean about living with the fear of dislocation! My injury that led to MPFL surgery was caused due to slipping on water. Another time, I dislocated slipping on ice. Once, all it took was a pair of slippery bowling shoes on a bowling alley lane (talk about embarrassing!). Like you, I have no more fear, which is a HUGE gift to me. I am so happy I got this surgery, even though I do get pain and stiffness from time to time. For me, that's a small price to pay for the benefits I have received!

Jeh said...

Thanks for posting your update after surgery bonbuttercups!! It was a fascinating read. Wish you all the best in your full recovery.

Bonbutter said...

Update just 6 days shy of 5 months: I learned how to walk up and down stairs about 2 weeks ago.

For those of you just getting to the bottom of this, I have full updates higher up.

I am back at the gym with no restrictions. I can't do anything fast yet, including hustling to the mailbox or trying to rush in and out of the grocery store. I can't run at all. But I was able to start doing jumping jacks at the gym, which I couldn't do a week ago. I'm now learning how to mini jumps - jump off a stair or step and land with both feet.

I can do my total body conditioning classes but still have to do a lot of modifications but the strength is coming back quickly. I expect this will be a full year of recovery.

There are many hours in the day where I'm walking and don't even think about the knee or the surgery - and that's a miracle. The first few months, I thought about every single step I took and it was mentally exhausting!

I know after a full 12 months I won't even think twice about taking a step and I can't wait. I've mentally accepted 12 months as total recovery.

I also find I can walk faster and faster every week.

If any of you are struggling with your recovery, one thing my mom told me that stuck with me was: Think about your recovery progress by weeks, not days. You can't see your progress each day, but if you look back to where you were a week ago, then you can actually see it.

Will update you in a few weeks. BTW, we have a new MPFL success story among us; I found out Sara had the same surgery on the same day by the same doctor in the same hospital; she was the surgery after mine (sometimes fate really puts you in the right place at the right time).

Unfortunately, this poor girl is having some serious issues with fear. If anyone would like to shoot her a private message on Facebook, she could probably use the encouragement. Her name is Sara and she lives in Lake Havasu City. Even though we had the same surgery on the same day, she's only bending to 100° and she's literally crippled with fear about dislocating, as well as having the ligament rip away from her bone. Feel free to help me help her get over the fear. If she doesn't get that knee moving she's going to lose her mobility.

Thanks fellow MPFL survivors.
https://www.facebook.com/sara.morgan.16

Jeh said...

Thanks for the update Bonbutter! Your mum is absolutely right, progress is much more noticeable weekly than daily. Look forward to future updates from you. Keep working that knee!!

Abraham said...

Hi, i had the same surgery (MPFL Reconstruction) 11 months ago, and i can't run yet today i decided to start jogging, did it quite good with a slight limp and a little bit of fear because my left quad is not strong enough yet.

I wonder if any of you managed to run again after the surgery and also how good is your leg compared to the normal one, did you get your VMO fully recovered?

Sorry about my english.
Regards.

Anonymous said...

Hi everyone,
this is one of the only blogs I could find on this surgery. I had this surgery performed about 13 months ago. I never had trouble with my knees until I dislocated my right knee in gym class playing soccer (UGH). After that I did PT for months with a few different braces and a full leg cast in there too. Finally almost a year after the injury my doctor decided it was surgery time. Surgery was tough with a lot of pain as most of you probably know. I also had stomach complications after surgery landing me in the hospital a week or two post op. Anyway I started PT a few weeks later and went three times a week for about 8 months. Here I am now with complete knee cap stability but having some other issues I wonder if anyone is experiencing a year post op? First of all my run that I worked on all throughout PT is still not where it needs to be whatsoever. I have a limp and my running pattern is off also running is followed by pain and sometimes fluid and swelling. Second, I still have pain randomly on the internal side of my knee where I have a scar. So basically its been a year and here I am expecting full recovery.. but I'm left frustrated because I expected to be doing everything normally by now. My workouts and exercise can become limited among other things. Any advice or your experience a year post op would be much appreciated! Thank you!

bonbuttercups said...

Bonnie here – just one day short of 9 months since my MPFL/lateral release surgery. Wanted to give an update and I do wish others who are well over a year since the surgery would do the same so those of us behind you can know what to expect. If you’re still out there and reading this, please let us know where you are with your recovery.

If you search for my screen name (bonbuttercups) you can read my previous updates.

CHALLENGE OVERCOME: STAIRS
9 months later and I’m able to easily climb/descend stairs, which I thought would never happen. It took about 6 full months before I could step down with the left (surgerized [my new word]) leg without thinking about the actual act of stepping down. I live in Lake Havasu City and we have the London Bridge here, and with the bridge comes a good, healthy flight of stairs. Last time I hiked the stairs I was able to do 12 sets, and there are 58 stairs total. While my calves hated me, the knee was fine.

QUESTION: RUNNING
This is a serious problem still. I was never a runner as I’ve been dealing with both knees dislocating since I was 11 (I’m 46 now), but if there was a zombie apocalypse, I would definitely become zombie food. I cannot run to save my life. I can’t jog, saunter, skip, or even walk quickly without issue. If I need to “run” back into my house on the way out the door to work because I forgot something, it isn’t going to happen. Is there even one person out there who’s had this surgery that was able to run again?

There is a girl I wrote about, Sara, who had the same surgery on the same day as me by the same doctor. She also cannot run at all. Can anyone tell me how long it took to be able to even do some light jogging? I’d love to start playing sand volleyball again but I can’t run – at all. Any advice from anyone out there would be greatly appreciated.

QUESTION: MUSCLE STRENGTH
Since I was released from PT, I’ve been in the gym 4-5 days a week religiously and for the life of me I cannot seem to gain strength or bulk in my quad muscle (medial, or inside portion). Sara is having the same issue… no strength in the quad. Junkyard Girl, your original post was June 2011. Do you have your full strength back? I’m thinking the reason Sara and I can’t run is because the muscle is still real weak. Can anyone give some insight on how long it took to gain full strength back?

QUESTION: WHEN DID YOU STOP “NOTICING” THE MPFL KNEE –WHEN DID IT FEEL “NORMAL”?
I still feel the tightness of the ligament all the time. I know it’s not the same as the other. Is there anyone out there who just doesn’t think about it anymore, like the surgery is a distant memory? Both Sara and I can feel the stiff ligament with every step. Any words of encouragement?

Other than running or hiking downhill, I feel I’m at about 85%. What I don’t have any longer is the fear of dislocation on the left – that is gone. I know it’s not going anywhere, and I thank God for that. But I would really like to get back into playing Frisbee and sand volleyball, and I need to be able to run short distances, which I can’t.

If anyone is over a year post-op, please give Sara and I an update so we know what to expect.

bonbuttercups said...

One quick followup:

Apparently I'm using two screen names, bonbuttercups and bonbutter. If you want to read about the progress, search "bonbutter" and that should bring you to either name (post-op drugs are great, aren't they?)

A few other things regarding updates: At the gym I'm now able to do full step classes - like step up/down on a step with 2 risers. I remember when I could barely step up onto one riser; and forget about stepping down. Now it's with very little thought.

I also can jump easily, AND one of the "exercises" we do in my classes is for balance; we literally hop from side to side - hop right, land on right leg only, keep balance - hop left, land on left leg, keep balance. Everything is on one leg only. Got those down now and I'm even able to start gaining side-to-side distance in my jumps.

I went back and read my post at about 6 months post-op. It's amazing how we take things for granted; I wrote that I can walk without thinking too much about it, now I'm complaining that I can't run or walk fast! Regardless, walking is very easy. Don't think about the knee at all when I walk. But there is a "feeling" of it not being like the other one and I’m hoping that will fade with time.

BTW - cold is not my friend. When I get really cold, it seems like my quad muscle just stops entirely. I'm back to the straight-leg limp if I get chilled to the bone. It's a good thing I live in one of the hottest places in the nation.

I went to see my knee doc last week to ask about the muscle not developing. He actually told me Sara (see my post right above) was in a week prior about the same thing. Just so those frustrated with a lack of quad muscle can grasp a bit of what’s going on… What Dr. Heiner said is the MPFL surgery is extremely invasive. It is a very difficult surgery and far worse than a total knee replacement. He said what’s going on is the spinal column is the highway for all signals from the brain to the rest of the body. He said when we get injured, the spinal column is the “protector” of the body; and if the injury is severe, the spine will shut the highway down so no signals can get through to the injured area. He said that because this surgery was so invasive (especially mine because he moved muscles and other stuff around for extra security to hold my kneecap in place), the spinal column has virtually stopped all signal from the brain to the knee, including the signals telling the muscle to get stronger. Obviously I asked “how long?” His response was, “I don’t know. Could be another week or several months. But eventually when the spine realizes the knee is no longer in danger, it will open the highway and within a two week period you’ll see the muscle in your knee, as well as all the rest of the muscles in your left leg, develop rapidly and be the same as the right.”
That makes sense, but my question still remains – HOW LONG before my quad muscles start developing in my MPFL knee?

Also, I can now sit criss-cross applesauce (that’s Indian-style) – and I was able to do this just about a month ago. I can also kinda-sorta kneel on both knees if I have a lot of cushion underneath me. And I can bring my heel to my butt easily now (full range of motion back). I forgot to tell you about that.

So again, anyone well over a year post-op, please check in and let us “weak muscle” folks know how long it took. Thanks.