Overwhelmed

[momma2boys]

Hi all,

I'm feeling totally overwhelmed with all of the information on Arthofibrosis.  I've posted on here before, but it's been a while.  Anyhow, I had a ski accident back in March - partially tore my ACL, MCL and meniscus.  I was in pt for several months, but my leg would not fully extend... you know the story.  Went to different surgeons who told me that it was all in my imagination - there isn't anything wrong - there is nothing they can do, etc.  Finally found an os who specialized only in sports knee injuries and he said that I had excessive scar tissue.  Went in for surgery at the end of June where he got rid of the scar tissue and manually straightened my leg.  Put me in an extension cast for a few days.  Went to pt for another couple of months and followed the recommendations on here for rehabilitating a knee after surgery for arthrofibrosis.  Now, I have full extention and almost full flexion (within 10 degrees off), but I am still in some major pain.  I've been thinking that I can just learn to live with it... but I'm slowly gaining more and more weight because I'm just not able to be as active and the pain is no fun at all.  I have small kids and I'm not able to run around with them like I used to do.  I'm still doing the stationary bike and elliptical, but still have to ice and it's constantly swollen.  So, my husband and I have recently been talking about whether or not it would be worth it for me to go see Dr. Steadman.  Cost, time away from my family, another surgery that may or may not help with the pain... and I'm just overwhelmed with it all.  I've been looking at the Steadman-Hawkins website and even that overwhelms me.  Flying out there several times, finding a place to stay, getting around on my own (assuming that my husband and kids stay here).  I'm very thankful - very thankful - just to be able to walk with hardly a limp anymore and to have my leg straight.  What advice can you give me?  Am I hurting my knee further by not getting anything else done - there is obviously something not right or I wouldn't have all of the pain and stiffness.  I'd love to be back to my normal self again, but I just don't know if it's possible.

[JaneDown]

Anyone who has seen any of my other replies or my own thread will know that I am totally against surgery unless your life depends on it!! I just think that if you have already put your knee through an injury and two surgeries then it's probably pretty traumatised still! And there is absolutely no guarantee that another surgery, even if it is with the best OS in the US, will do anything to get your knee any closer to the knee it once was. I don't have personal experience of arthrofibrosis so I'm probably not the best one to answer. But I feel that once you have a "bad knee" you will always have probems and pain to some greater or lesser degree. Like you I have two small children (4 and nearly 2 years old) and since my surgery last October their life with me has been really restricted and I believe it always will be. I'll never be the sort of mum who runs or jumps or climbs with them, but we'll all just have to accept that because (like you) I'm just so grateful I can walk at all! I think to seek a better knee via more surgery would be to risk a) something else going wrong and making things worse, particulraly as you are prone to arthrofibrosis  b) several more months of recovery time taking you away from your kids whose lives can be measured in months! A month to a little child is an eternity! My youngest was 18 months old when I had surgery and I was pretty much bed-bound until he was 20 months, and for the past two to three months I've gradually been able to do more. But whilst those 4/5 months aren't that much out of my 40 years, to my son they must have seemed like a lifetime!
It's a tough decision because all the time you are in pain you believe that there must be something wrong that can be put right. But maybe your knee is just what it is, a part of you that isn't as good as the rest! I'm sure many KGs on here will disagree with me but I just think the fact you can walk without a limp, can straighten your leg and get about ok means that you should think very long and hard about whether you should risk another surgery. It's pretty well documented that the more surgeries you have the quicker your route to osteo-arthritis. Knees just weren't meant to be continually cut about and traumatised. I believe the body is the best healer, and maybe given more time your knee will become the best it can be. It may not be the knee you'd wish for but it may be better than the one you end up with if you have further surgery. Good luck and I hope you make the right decision for you.
Jane

[lenorem9]

I think your Subject line says it all.  You're overwhelmed!  I'm with you on that one.  I'm in a similar boat and have decided to go see Frank Noyes in Cincinnati because I think I have undiagnosed AF.  The way I look at it is this...Even if it costs you the expense of one trip to Steadman, at least you'll know you went to the very best and found out one way or the other.  All you can do is take it one day and one visit at a time.  If you try to look at the big picture you will become overwhelmed. 

I personally am not willing to accept the knee I have and I'll do what ever I have to do to make it feel better.  It sounds like you have that same dedication too.  Some people can live with pain and disability and some cannot.  Only you can decide if it's worth it.

Who knows, maybe that one visit to Steadman is all you'll need.  If it isn't AF, maybe he'll have a nonsurgical method to take care of your pain.  Steadman and Noyes are not just AF experts, they are 2 of the best knee surgeons in the country.  If anyone can figure out your problem they can. 

Just because you still have pain doesn't mean you will need more surgery.  Why not go to the best you can and find out for sure? 

I wish you the best of luck Momma2boys.  It's really a tough decision. 

[Janet]

No wonder you're overwhelmed. You've had a lot of surgery and are trying to recover/rehabilitate. And you still have pain, which isn't good. As my OS tells me, pain is your body's way of telling you something is wrong. So where does that leave you? That's a hard question.

I agree that a visit to Steadman would probably be worth it, if only to ease your mind. Just because you see a surgeon doesn't mean you will have surgery! In fact, my experience has been that they will try everything else before resorting to surgery. And remember, even if they recommend surgery, you don't have to agree. It may be that your knee just needs more time, but I truly believe that we "know" when something isn't right.

As for how long to wait, no one can tell you. After my first two surgeries, I had acceptable ROM but continued pain and disability. I had had two surgeries (one open) in a six month period and had been in PT during that whole time plus another three months. My OS kept telling me to be patient, give it time, I had had a lot of surgery in a short time, etc. So I waited a few more months, then decided to get a second opinion from a knee specialist (this was long before I found this forum). The new OS immediately diagnosed patella baja and infrapatellar contracture. I eventually ended up with two more surgeries, then a TKR a few years later (I won't go into all that here). I will always wonder what would have happened if I had seen a specialist sooner instead of "being patient." Perhaps the AF would have been diagnosed sooner and the baja could have been reversed. Then I wouldn't have developed the articular cartilage damage that caused me to have a TKR. I was a healthy 42 year old woman when I fell on a wet floor and tore my quad tendon. I went from no knee problems to a six surgeries including the TKR in 7 years. That's why I always recommend that people trust their instincts and get that second opinion from an AF specialist. See what he has to say. It can't hurt...and it may save your knee and give you a life back!

Janet

[momma2boys]

Hi all -

Thanks for all of your replies.  I should clarify that I've only had one surgery - in June of 2008.  When I had the accident back in March, the damage wasn't bad enough to require surgery.  My body healed itself of the partial tears in the knee.  The problem was that is over-healed itself.  Anyhow, I don't think that was very clear in my original e-mail.  I hadn't even thought of just going to see Dr. Steadman once and hadn't even considered that surgery might not be the outcome!!  I think that I was just reading through everything, got overwhelmed by it all and freaked out.  I'm in pain and it definitely takes it's toll! 

[Shine]

Hi,
It might be worth it to go and see Dr. Steadman for an opinion. I had full ROM and extension but was still in so much pain. Dr. Steadman diagnosed scar tissue right away. He went in and there was sooo much scar tissue everywhere.  It has been about a year since that surgery. I am not a 100% but am alot better than I used to be. No more swollen knee, can walk and do activities of daily living without pain. Unfortunately, I have too much cartiledge damage to ever go back to running as a sport again. But going to Dr. Steadman was one of the best decisions I've ever made. He is fairly consevative. So he will try everything else before resorting to surgery. So if you don't need surgery he will try everything else. Might be worth a shot to go there. At least you will know you have done everything you can! Take Care, Summer

[momma2boys]

Thank you all for your help.  I have one more question... at least for now!     I grew up in Houston and still have family in Texas, and I noticed that one of the recommended arthrofibrosis doctors mentioned on this site is located in Houston.  Have any of you gone to see Dr Lonnie Paulos or can you direct me to someone who has?  I want to make sure that the doctor who looks at my knee really knows what they are doing.  Thanks so much!

[missmyknee]

Hi

Dr Paulos did his fellowship in the late 70's with Dr Noyes and is an excellent OS in his own right. According to the following post and reply from Drmark,, he is now located in Pensacola

http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=16156.msg420572#msg420572

This is on his website:    http://www.lonniepaulosmd.com/?pid=14

If you type in paulos in the search area, you will come up with posts related to seeing Dr Paulos. He has written articles on infraptellar contracture syndrome and patella baja.....both concerning arthrofibrosis. Some of these articles are located in the AF section of the information hub.

I need to confirm this and update the list. 

Pam

[momma2boys]

I will be SO bummed if he's not practicing in Houston anymore!!!!  When I read your e-mail late last night, I started crying because I thought that I had finally found a way to be able to affordably see a specialist.  Eegads.  I have a call in to the clinic in Houston and hope to hear back from them after this weekend.  The website says that he is practicing at two places in Houston and one in Florida... which is what I hope is still the case!!  I'll post back on here once I've heard something either way...

[NotEnough]

Anyone who has seen any of my other replies or my own thread will know that I am totally against surgery unless your life depends on it!! I just think that if you have already put your knee through an injury and two surgeries then it's probably pretty traumatised still! And there is absolutely no guarantee that another surgery, even if it is with the best OS in the US, will do anything to get your knee any closer to the knee it once was. I don't have personal experience of arthrofibrosis so I'm probably not the best one to answer. But I feel that once you have a "bad knee" you will always have probems and pain to some greater or lesser degree. Like you I have two small children (4 and nearly 2 years old) and since my surgery last October their life with me has been really restricted and I believe it always will be. I'll never be the sort of mum who runs or jumps or climbs with them, but we'll all just have to accept that because (like you) I'm just so grateful I can walk at all! I think to seek a better knee via more surgery would be to risk a) something else going wrong and making things worse, particulraly as you are prone to arthrofibrosis  b) several more months of recovery time taking you away from your kids whose lives can be measured in months! A month to a little child is an eternity! My youngest was 18 months old when I had surgery and I was pretty much bed-bound until he was 20 months, and for the past two to three months I've gradually been able to do more. But whilst those 4/5 months aren't that much out of my 40 years, to my son they must have seemed like a lifetime!
It's a tough decision because all the time you are in pain you believe that there must be something wrong that can be put right. But maybe your knee is just what it is, a part of you that isn't as good as the rest! I'm sure many KGs on here will disagree with me but I just think the fact you can walk without a limp, can straighten your leg and get about ok means that you should think very long and hard about whether you should risk another surgery. It's pretty well documented that the more surgeries you have the quicker your route to osteo-arthritis. Knees just weren't meant to be continually cut about and traumatised. I believe the body is the best healer, and maybe given more time your knee will become the best it can be. It may not be the knee you'd wish for but it may be better than the one you end up with if you have further surgery. Good luck and I hope you make the right decision for you.
Jane

I'm sorry, I truly don't mean to offend, but this has to be one of the worst things I've ever read. To say that once you have a bad knee you can never have a good one again is just plain wrong. Furthermore, surgery isn't necessarily always about "curing" or "fixing" something. For some, it's a measure taken to improve one's quality of life. Not everyone seeks surgery to get to 100%.

I don't know, perhaps I'm the exception, but if I'm unhappy with how my knee feels I'm going to do something about it. And I'm going to fight to the bitter end rather than sitting around hoping things will get better on their own, or worse, just assuming they never will and giving up.

To the OP, if you can't get to Steadman there are other arthrofibrosis specialists out there. I assure you that you can find someone who will give you options to improve your functionality and quality of life if you look hard enough. It might not be easy, but you can improve. Good luck.

[momma2boys]

I am SO bummed because Dr. Paulos has indeed moved his office to Florida and is still practicing in Houston only with established patients... basically to finish out their care.  AAAAAAHHHHHHH!  I am very frustrated and very sad, too!

[lenorem9]

Momma, I'm so sorry for you.  I know your frustration.  I tortured myself for months before I decided to take the plunge and drive 10 hrs. to Cincinnati to see Noyes.  It wasn't nearly as expensive as I thought it was going to be and I don't regret it for a minute.  Now I have answers and I know my knee can be repaired instead of wondering if I was going to be handicapped for life.

Only you can decide how bad your knee is and what you are going to do about it.  I sincerely hope you find a way to get proper treatment and get a resolution to your knee problems.  It's a nightmare.

Have faith and don't stop fighting Momma.  You'll get there in the end.

[missmyknee]

momma


What Lenorem ,myself and the others here with AF have had to do to finally have their knee properly treated is to travel long distances to see one of these specialist. Lenorem drove 10 hrs, I drove 10 hrs, others have flown across the country and even some come from other countries. I always tell people it is worth every gallon of gas. We drove back and forth for appts and surgery when gas prices were the highest. The function of your knee is priceless.  I am still paying off expenses from traveling many times, but well worth it. I've been to Cincinnati about 30 times and had to plan each trip with regards to family/kids at home and my stay in Cinci

If you decide on a doc to go to, most likely others have been there too, so there will be info in past posts on all the logistics , such as where to stay.

I don't know a single person on the forum who ever regretted seeing an AF expert. I know plenty who regretted not seeing one and I;ve been on the forum for 6 yrs. I only wish I had this information available to me when my AF started in 2000.

Pam

[Janet]

Amen to Pam! I was very lucky that an AF specialist was only 45 minutes from my house and my other OS referred me to him. But I would have traveled wherever I needed to get my knee back. Your knee is priceless. It may be difficult for you to travel...and overwhelming!....but hopefully you can find a way to do it. Good luck!

Janet

[Shine]

I had to fly out to see my AF specialist. I still tell everyone to this day, it is the best decision I have ever made. I was in so much pain. And now, I rarely have pain. If I do, its cause I tweaked something or the other. But for the most part pain free!! Good luck and let us know what you decide to do. -Summer