There is hope out there

[Janet]

I am now 11 months following my last debridement surgery. While my knee is nowhere near perfect (in fact, I would say it's really only liveable), it has been such a huge improvement over what I have been dealing with for the last five years. I just had a check-in with my OS and he is very pleased with my progress. I actually have some quad muscle now....no more "blob" for a thigh! He's happy that I'm continuing to improve (slowly, very slowly) on my own. And I don't have to check in with the OS for another six months! Yea!

He told me (somewhat to my surprise) that I should always be very careful what I exercises I do. I should never do anything new without checking with one of his trainers first. He said it would very easy for me to really mess up my knee even more, and that with a knee like mine, I had to be extremely careful. I must admit that was a bit of a shock, since he keeps telling me I'm doing well. But I think it's good advice for all of us to remember.

We have decided to hold off on the Synvisc. He said I can call at any time and come in for the shots, but that we should keep it as our "trump card." I'm willing to wait, knowing that I can get it if I change my mind.

I think it's interesting that if I had a normal knee and woke up one day with it like this, I would be screaming for something to be done. But I've come so far, I can tolerate it like this pretty well. Your perspective really changes after something like this, doesn't it?

Anyway, I just wanted to let everyone know that there is hope at the end of all your hard work. I have been dealing with multiple surgeries and rehabbing my knee for five years, but it is finally paying off. My goals are still to walk without pain and without a limp, and to hold off anymore surgery for at least five years. At least I no longer have debilitating pain and no longer feel "disabled." My wish is for all of you to get to a point where you can live with your knees, even if they never get back to pre-injury, pre-arthrofibrosis status!

Janet

[jennifer123]

Hi Janet,

I was just reading something that Heather wrote a while ago and you touched on. My roommate commented a couple weeks ago that he ran into an old friend of mine who asked if I was still playing touch football with some guys at school. My roommate said that my friend must have me confused with someone else. My roommate has only known "disabled jennifer" since we've been roommates for only 1 year.... hence, my roommate couldn't imagine me doing any kind of sports. In my mind, I still feel like I'm only temporary out of commission. Many doctors in CA say I'll never be "normal" but I never asked why because I still view myself as an extremely active person.

But, today, in PT I had a question that my PT person couldn't answer. For about 9 months I couldn't do a good heal slide. Due to arthrofibrosis, my ROM was fine, but getting through the full range involved unlocking the kneecap at about 20 degrees and accepting a big kneecap clunk at about 45. I asked my PT person when doing a heal slide will feel "normal" and "easy." Even though I just had surgery 1 week ago to remove massive amounts of adhesions, it still feels really uncomfortable to do a heal slide. I have trouble back at the 45 degree mark and 20 degree mark. It's not clunking or locking, thank goodness, but it is very "uncomfortable".

I was wondering, after the scar tissue is taken care of in surgery, how long did it take other people to move from motion they couldn't do before surgery to "feeling comfortable" with the motion.(?) I ask this out of fear that the scar tissue is returning and hence the "uncomfortable" feeling..... Does anyone have any ideas about this?

Thanks,
Jennifer

[soccermom]

Jennifer,

I believe that it still is quite normal to be sore and have tenderness and pain while moving your knee. It is going to be uncomfortalble and sore for a while but it will get better. As long as you are moving your knee (which it is sounding like you are), you should not be worried about the scar tissue. Your PT's are specialists in working with patients with arthrofibrosis so relax. Remember back to the pt you did after your other surgeries. Is it as aggressive? Did they compare at all? My guess is no. I understand how you feel because I felt the same way but I was on my own for awhile too. I made it through without reforming too much scar tissue. You are surrounded by PT's to help you with exercises and mobes. You are going to be fine. You will see. It has only been a week. You are doing great (no clunking). Keep a positive attitude. Things are looking up now! There is alot of hard work ahead but it will never compare to the time you tried and pushed and you got no progress because of the scar tissue. Does it feel totally different already? Dont worry anymore, ok? Just concentrate on getting better.

Many Hugs to you as you recover!

GO Jennifer!!

Christina

[Janet]

Jennifer:

At my six week check-up, my patella was subluxing so badly, I couldn't go past 45 degrees. But that was a particularly bad day (for once, it happened during an office visit!). I could usually do heel slides, but had terrible catching when I got to anything involving the quads. Even now, after all this time, I still get some catching. My OS says I am catching on the patellar defect, not on scar tissue. It is also made worse by poor quad strength. If I stand with straight legs and my weight evenly distributed on both legs, I cannot bend my bad knee without first raising my hip and taking the pressure off the kneecap.

It may be that you are still so worried (subconsciously?) about catching at 20 and 45, your mind won't let your knee do it comfortably. Give it some time. These things improve on such a slow schedule, it is hard to just relax and let the healing happen. Good luck.

Janet

[Jaci]

Janet,

Thanks so much for your post. "Hopelessness" has become a frequent state for me lately, so it's good to hear of someone's success.

I realize that recovering from surgery requires a lot of hard work and adding arthrofibrosis to the mix makes things even harder, but how do you know when the hard work by itself is not going to payoff? How do I know the difference between the slow schedule and there being an actual problem?

I guess having a really good OS who knows arthrofibrosis is a big part of it. I have a great OS, however his knowledge of scar tissue is limited. Plus, it's difficult to be patient when my my knee is "liveable" for maybe 10 minutes out of every day. :'(

Please forgive my whining. It's good to know that it is possible for this to get better. I look forward to that day.

Take care.

Jaci

[SarahSmile]

Janet,

Thank you so much for this post! You are SO correct in that there is always hope out there and good for you that you're doing so well! With us Arthrofibrosis sufferers, it's the smaller milestones that we must celebrate, because let's face it, our knees will NEVER be where they were pre-injury status or pre-surgery... BUT ...they can be ALOT better and we CAN get our lives back and do what we used to love!

I have seen IMMENSE improvement of my knee since I saw a arthrofibrosis specialist. I went from NO hope, to tons. Although, I'm still a bit of a perfectionist, and still want more improvement, I am extremely happy with the results overall and I am much better than I've ever been before. I went from being stuck at LITERALLY -30 degrees extension for 4 years (!!!!!!), to right now, -2! that is HUGE! I still have swelling/ chronic pain issues, but I am so much better and I have so much hope that I will be able to return to the "old SarahSmile" again I will never give up on that either!!!

Jaci,
To answer your question, you know intuitively, I think if you still have scar tissue..you can feel it. You may not progress as well.. still have pain issues, your OS may tell you that you are "behind the loop" as compared with other patients. I think you will just know. But it is the OS who needs to diagnose and treat it. It sounds like you really need to see someone more skilled in scar tissue and fast! Where do you live, if you dont' mind me asking (you can IM me that if you dont' want to post it here)? I live in SF and I think Dr Dye is the best in CA. I've seen major improvement from him! I'm not 100% but I've had drastic improvement... SO much work done.
So thats your first step. As for knowing if you are having a problem or just behind schedule, I would also think the OS shoudl be able to tell you that, if you have a good one that is. Because, as you know, us arthrofibrosis patients seem to progress slower than other patients, yet it is a fine line to know if something is going wrong or if it is the scar tissue coming back....with me, I knew 3-4 weeks after the last surgery that I was having problems and that the scar tissue had returned. It took the OS 3 months before he believed me and finally scheduled a surgery a month after that. So I had to wait 4 months of a GRUELING recovery, full of immense pain, terrible locking, swelling, red hot knee, etc etc before he did anything or took me serious. Sometimes you just have to listen to your intuition, and your knee and just demand that he diagnose it or do a scope to "look around" to diagnose the scar tissue. But, you need a good scar tissue surgeon to do that!!!
I think you know who I'm talking about....

take care!!!!!!! Keep us posted!!!! And please do NOT lose hope it is ALWAYS there

Hugs,
Sarah

[Heather_M.]

Janet,

I don't know how I missed this post! I've been trying to get back to full time work between upacking (still!), remodeling (the reason for unpacking delays) and dealing with this stupid knee. My PM doc is 'tweaking' my mixture, and I've found it veeeerrry difficult to concentrate since then. So difficult I've been considering going off the meds, since I still have pain. But hopefully the fog will clear in the next month.

In the meantime, like you, I'm doing so much better after finally seeing a doctor who was able to break the cycle. Things could still be improved from my standpoint, but I can't negate how different my life and physical abilities are now vs. 18 months ago. And I had such a severe case of arthrofibrosis that my knee was locking with each step I took.

So there is hope! Without hope, well, there is no end to the pain and disability. There was no magic bullet that gave me hope of improvement--it was a carefully choreographed combination of surgery, PT, lifestyle modification ( ), pain management, and trying to get back as much of my old life as possible. I'm succeeding in that, at least--some days better than others, but a definite forward trend all the same.

Heather

[Heather_M.]

Jaci,

You said that your OS has limited experience with scar tissue. You also asked how you can tell the difference between a slow recovery and there being an actual problem. My honest opinion--YOU can't tell that for sure, only a doctor who knows the difference can. However, you certainly have instincts--what are yours telling you?

As for the doctor who knows the difference...I sat down and did a little math. This is based on the information that I've been given over the years by various knee specialists and arthrofibrosis doctors, so take it with a grain of salt as I have no data at hand to back these numbers. However, I was told that only about .05% of knee arthroscopy patients (that's less than one half of one percent) can expect to deal with arthrofibrosis. Of those patients, 99% will recover fully with another operation to remove the scar tissue and then following the normal knee rehab protocol. That's because they have 'normal knees' and not a genetic predisposition to form scar tissue.

So let's play with those numbers. Take Dr. Smith, who is a skilled, highly in-demand orthopedist of about 50 years of age. His practice takes care of all the sports teams in his large city, so he must be good, right? Dr. Smith does arthroscopic knee surgery 4 days per week, 5 surgeries in a day--remember, he's in demand as a knee specialist. That makes for 20 knee scopes per week, which is 1040 arthroscopic knee surgeries in a year. At age 50, Dr. Smith will have been in practice for about 20 years--that's approximately 20,800 patients he's performed knee arthroscopy on during his career.

We already know post-op arthrofibrosis is rare--occurring in less than .05% of surgeries. So that means our hypothetical surgeon in his 20 year career will see approximately 10.4 patients with severe arthrofibrosis, since .05% of 20,800 is 10.4. Let's round that to 10 for simplicity.

If 99% of patients with arthrofibrosis have it due to a traumatic injury, post-op immobilization, and other things that are external to the patient, that means that 9 of those 10 patients have arthrofibrosis due to these external factors. That other lucky 1 patient is genetically predisposed to form scar tissue regardless of how minor the surgery.

So that means of those 10 patients with post-op arthrofibrosis, 99% or about 9 of them will have successful arthroscopy with Dr. Smith to remove the scar tissue, because they are not genetically predisposed to form severe adhesions.

And that means in a 20 year career, Dr. Smith will see ONE patient with severe, recurring arthrofibrosis.

Do you want to be that patient?

I don't know about y'all, but my answer through painful experience is a resounding NO! The doctor has to know what he/she is looking for before he/she can definitively diagnose a problem, and rule in or out the possibility that the patient has the rare condition known as arthrofibrosis.

If you are still hurting and your instincts tell you something is not right, then listen to them. At worste you have a few consultations with other doctors. At best, you find one who can give you hope!

Take care and hang in there. You're doing all the right research....

Heather

[jennifer123]

Heather: Wow... that really puts things in perspective. No wonder why most OS seemed to deny the possibility that I had recurring arthrofibrosis -- they probably had never seen it before.

Jaci: As you know, you asked a difficult question: "How do I know the difference between the slow schedule and there being an actual problem?" I can only tell you my decision process. I think I was in a big denial and head game problem. That is, I would try to look for the positive in my knee each day. I was determined after each surgery to never have surgery again... so I was mentally desperate for positive signs. Some days there would be improvement and some days I would be a lot worse. At first, I depended on my doctors... that is, when one finally threw their hands up in the air and said we could try surgery again, then I also gave up and said "okay, because I feel like I'm at a wall." Later, I decided before the doctors I was at that wall. I think that, for me, that decision came when some symptoms (like clunking) got worse even through my strength got better. I don't know what your symptoms are... but my rule of measure was the clunking. Also, I figured/knew the clunking was from scar tissue... so over time if it got worse, then I felt like I was losing the battle and it was time to find another doctor or try a different strategy.

Of course, if I have trouble in the future, and there is no clunking, I will have to determine the answer to this question in a different way. But, maybe there is some symptom that you can monitor and doing everything right for your knee, you can see if this one symptom is improving or not improving. For me, I have a lot of atrophy, and so getting stronger seemed like it should at least make *something* get better in terms of clunking... but it didn't. And, it didn't for about a month or two after *all* the swelling and surgery pain died down.... I was making big improvements in strength but nothing in clunking.

Okay, I'm rambling... I'll stop now. :)

But, I think that as many have mentioned, you can have instincts about your own body that is impossible for doctors to have. Doctors tend to "pattern match" to diagnose things based on their own experience, but you have instinct... which is very strong and usually correct.

Hang in there. You still haven't made it to see Dr. S, so in my book you still haven't exhausted your greatest asset. :)

Jennifer

[jennifer123]

I just heard at Dr S's that a Dr. Hacker (a fellow
who studied under Dr. S and who was a fellow
during Heather M's surgery) is in San Diego.

Jaci aren't you in LA? If so, maybe it might be
worth a shot seeing Dr. Hacker if you can't get into
Dr. S until much later? I heard this news and decided
that I'd try him as a post-op doctor in California
(in case I needed someone in CA).

Jennifer

PS. Dr S wants me to stay at least until the end of
theweek to watch the swelling.

[Jaci]

Greetings,

Thanks everyone for responding to my cry for help. I think I reached the limit of my patience yesterday after a very frustrating phone call with the referral coordinator at my HMO. I just don't understand why everything is so difficult...

I think the hardest part lately is the "head games"-- for lack of a better term-- that I'm getting from my PT, OS, HMO referral coordinator, etc. I'm starting to question my intuition and, at times, maybe even my sanity. :-/

The latest in my quest for an arthrofibrosis specialist:
Dr. S can see me in August, at the soonest. I'm on a waiting list in case there's an earlier opening.

I was arranging to see Dr. E in Palo Alto (former Steadman fellow, wrote an article on "Knee Arthrofibrosis") , however my insurance will only pay for a "confirmatory consultation." At this point, I just want a thorough, unbiased evaluation and, from that, I want to know if it is advisable to wait until August to do something. "Confirmatory consultation" means that if Dr. E wants even so much as an X-ray, I have to have it pre-approved. I'm not sure how thorough he can be.

I had been given Dr. Hacker's name by S-H, but thought he was in San Francisco. I'm in Orange County, so San Diego is much closer to home. I googled him, but found very little info. Anyway, I'll give his office a call and see if he has a PA that might be able to answer a few questions for me. Then I'll make a decision about who to see.

Whether it's Dr. E or Dr. H, it's starting to look like the best thing to do is just pay for the consultation along with an MRI, since my OS won't request one. I think that's the only way I proceed without jumping through a lot of hoops. Hopefully any info I get will help me make a better case for having my insurance pay for me to be treated by Dr. S.

Thanks everyone for your input. Heather, I had mentally done the math last night while on the phone with my mother. I reached the same conclusion: I may be the only case of genetically predisposed arthrofibrosis that my OS will ever see. I can't expect him to become an expert, and I definitely don't want to be the one that he experiments on!!!! :o

Take care.

Jaci

[Janet]

Jaci:

I think you are definitely on the right track to get another opinion from an arthrofibrosis specialist. I was with a highly skilled knee specialist, but even she couldn't stop my scar tissue from reforming. At least she finally referred me to see Dr. W at U of M or Dr. N in Cincinatti. Luckily, U of M is only about 45 minutes from my house, so that made the decision easy. It was the best thing I could have done. I, too, had to wait out some insurance hassles (workers comp--but I won't go into that long story), but finally went on my own. He knew immediately what the problem was and how he would address it. He even told me that my last OS was an excellent surgeon and did nothing wrong. And this was after workers comp had two doctors tell me it was all in my head and there wasn't anything that could be done. And then when Dr. W laid out a game plan for more surgery, they wouldn't agree to it because "the scar tissue will just come back." Well, it didn't come back.

Now, as for how you know if something's still wrong. I agree that part of it is just intuition. I have changed to a new doctor three times. Each time, I "knew" something was still wrong with my knee, but they said I needed to be patient and keep working at it, etc. Each time I went to a more specialized surgeon. It was only this time that I feel like I don't have to try to get the OS to agree that something is still wrong. But after this last surgery, it was a good four months of hard PT and lots of pain before I started making any improvement. I really questioned whether there was something else wrong or if I had made a mistake by having more surgery. But I had ultimate faith in my OS and his training staff (where I took my PT). It has now been 11 months and I am still rehabbing, albeit on my own. Even now, it's such a refreshing change to have a doctor who knows that I will always have problems and continues to work with me to keep my pain and limitations to a minimum.

Janet

[Janet]

Heather and Sarah:

It's interesting that we're all basically saying the same thing. Our arthrofibrosis doctors have been godsends to us, but we count our successes in different ways than other people. Like you, some days are better than others. Like you, a combination of pain meds, exercises, lifestyle changes, etc. have led me to the point I am today. I'm not sure when I truly realized what it really meant when they said my knee would never be "normal." Well, it's a far, far cry from normality. But life goes on, just in different ways. As long as I can keep the pain in control, life is still good!

When I first starting coming on this site, there wasn't anyone here discussing patella baja and arthrofibrosis. I did a search and found one old post about patella baja. It's really great now to have others who can truly understand what we are going through, and to offer advise and counsel (and a shoulder to cry on)--although I'm sorry anyone has to go through this. Just my way of saying thanks to everyone for your support (especially Heather M, who is like a cyber encyclopedia on arthrofibrosis and patella baja!!).

Janet

[Jaci]

Hi, everyone.

Thanks kneegeek friends for bringing me luck. ;D

No sooner had I read your messages that the phone rang-- it was my primary care physician. He received the follow-up notes from my last OS visit; OS recommending another surgery to remove scar tissue. My PCP has never had a patient with this condition, so I explained some of the challenges of having someone other than an arthrofibrosis specialist try to treat it. He'll help me get a referral to an OS in CA for an evaluation. Then we'll go from there to see if there is anything that can be done to help me see Dr. S. We also discussed the referral for pain management that has gotten completely messed up.

About 15 minutes later the pain management dr called. I have an appointment with him on Thursday.

Then I wandered (crutched) out to the mailbox and found the authorization from my insurance co to see Dr. E for a second opinion. I called his nurse and made an appt for June 15.

Anyway, today was a productive day. Thanks again for all your support. There are many times when I honestly don't know what I would do without all of you.

Regards,

Jaci

[Janet]

Jaci:

That is such great news. What a relief. And it's another example of what being an informed patient can do for you. If you didn't have knowledge about how difficult this is to treat, you would just blindly go on with a good doctor, but not someone who really knew how to work with the special treatment you need. So good for you! Keep us posted on your progress.

Janet