Do I proceed to a TKA or live with what I have?

[Jill M]

Well, it's been an exhausting few weeks. I went to Cincinnati to see Dr. Lindenfeld who then discussed my case with Dr. Noyes. They recommended a TKA and referred me to a surgeon in St. Louis.
Yesterday I made that trip and saw Dr. Whiteside. He was willing to perform the operation but said it may  or it may not help improve my function. I have major scarring in the posterior portion of the knee and of course the patella baja. He said he would address the patella issues during the TKA. He said he doubted it would improve my flexion. It is currently at 108 and I have flexion contracture approx 15 degrees. He said in trying to get the knee straight he could then get it in hyperextension.  It may improve the pain. Of course I have been walking with a bent knee for a long time so it causes other issues with my back and other foot is hurting.
I have a 60-70% functioning knee currently and I have to decide if I can live with what I have know or do I want to proceed with the TKA knowing it may not improve my function at all. I will eventuallly need at TKA but I have to decide if I want that now or do I wait.
I am glad that he was honest and straightforward. I am just overwhelmed and don't know what to do.   

[Rennschnecke]

Oh Jill,

I'm so sorry to hear about your situation.  I can't offer much in the way of words of comfort, but I do fully understand what a rotten place it is that you're in.

I guess you need time to think through everything that has been said and also discuss this with as many people as you can to sort out your thoughts.

Did Dr Whiteside indicate how much the TKR might help with the pain?  Why is it unlikely to help with function?  Under what circumstances would you decide to have the TKR?  How long will it be before you need to have this?  What is your family situation?  Would there ever be a better time to take this step?

I think it's time for a bit of healthy denial and then come back to this.

Take care!

[Jill M]

I think the biggest thing is that he didn't want me to have great expectations for the TKA and not have a significant gain. I don't think he feels that my pain is that bad in his eyes when he sees people with crippling arthritis.
I have the flexion contracture which may not seem bad to him but it affects the things that I choose to do.  If I do anything for an extended period of time my knee hurts and the other leg, foot and back hurst because I walk so altered. I will be 40 this year and feel like I am 70 some days. 
I went to go seem him because I have the flexion contracture of 15 degrees that has not improved since my original surgery in 2008 (lateral meniscus transplant, distal femoral osteotomy, osteochondral allograft and microfracture of tibia).  Compounding this is arthrofibrosis and a patella baja. I haven't been having the patella pain until just recently. It sits approx 6.5 cm below the other one. My knee just stays stiff. If I sit for any length of time it almost locks up until I have walked for a bit.
He feels that I can choose to have the surgery now or I can function the way I am now for who knows how long until the pain gets more severe then have the TKA.
I have a very supportive husband and no children (2 furry ones). I have a desk job. I was a ER nurse and had to leave that when all the knee issues started.
Some days it's not to bad but then other days all I think about is my knee.

[Rennschnecke]

Your patella baja sounds really a lot (I have a difference of around 1 cm).  I also understand about your days being full of nothing but knee.

What would be the ideal solution as far as you're concerned?  Do you think you would go for another opinion so that you can be doing something while you absorb this news?

It's pretty depressing to feel that people have given up on you, and you realise how much you have lost on a day-to-day personal level ...

Are you in physio at the moment?  Also, whilst debridement may not restore you fully, would you gain any benefits and so avoid undertake a more invasive procedure which has no guarantees?  I guess the question still is – under what circumstances would you decide it's worth the risk of a TKA?  This is beyond a surgeon to decide and I guess it's down to you and your husband to discuss how far you are prepared to go on for as you are and also what changes in your situation are likely to make you go for TKA, e.g. more pain?  Hypothetical questions are difficult to answer, and I guess you didn't envisage yourself being here when you first went on this path, so ...

Also, is it possible you're being a bit hard on yourself and projecting this onto the OS?  I don't know what the situation is for getting back to him, but I wonder whether you need to talk to him further.

Whatever, feel free to keep venting here!

[Jill M]

I don't know what the ideal solution is for me at this point.  I looked back over office visit notes from the Cincinnati visit and it states that I have signs of patellofemoral arthritis and the presence of osteophytes. I was wrong about the patella baja- my heel height diffence is 6.5 cm. Which translates into my loss of extension. I am not sure what the actual measurement difference is.
I have stopped going to PT late 2009. I wasn't improving and it was just causing significant pain. I had gone to PT at least 3 sometimes 5 days a week for a year and still have an unfavarable outcome.  I think the original operation was a lot and I then it just went downhill from there. My last surgery was a lysis of adhesions and anterior release in August 2009.
The OS that I saw yesterday definately wanted me to think things over. I don't want to make a decision without a lot of thought. I am still very conflicted.

[missmyknee]

Hi Jill

This is a very tough dilemma. I think Dr Whiteside is a little like Dr Noyes, in keeping expectations on the lower scale. If it was me, I would get another 1 or 2 opinions. I know it is more travel and expense but could make a big difference on the future of your knee and life. I would enquire about Dr Sim at Mayo and Janet's Dr Blaha in Michigan. I would also be inclined tell Dr Lindenfeld about the appointment and ask him again as to why he can't correct the flexion contracture with another debridement, posterior releases to try and correct the mechanics of your knee first, since Dr Whiteside is saying an option is to live with it . Dr Noyes repaired Sharon's patella baja/IPCS about 8 mos before doing a TKR. My patella baja/IPCS was repaired about 3 yrs before my TKR. You might also consider seeing Dr Noyes in person to get his opinion from actually examining you.

I was hoping Dr Whiteside would have been the answer for you.  Did he say how much he's dealt with Arthrofibrosis, which is a very complex problem to deal with going into a TKR. I just wonder since he made you feel like you weren't in as much pain nor as bad as someone with crippling arthritis. I also can't imagine telling someone to live with a flexion contracture of that much and the problems it wreaks on the body. Hmm     I would at least start emailing Dr Blaha and DR Sims to hear what there thoughts are and maybe sending copies of your records before making a trip. Janet had patella baja going into her TKR with Dr Blaha. He also took care of a long ago poster, Janet knows of, that went by Jan L. She was a very complex case with Af and many other problems.

Don't ever let anyone minimalize the amount of pain you have from AF esp with a flexion contracture of 15, patella baja. !!!!!!!!!!!!

Keep us posted ,keep yourself informed about AF and rant anytime.

Pam

[Jill M]

I did go on the Mayo Clinic and search for a way to submit an email to Dr. Sim. I can't really find a way to do that. They say on the website that no one can make a recommendation without a visit. I can travel there but want to do the footwork first.
I agree that no one knows what it is like to live with a flexion contracture. Dr. Whiteside said that he didn't feel that the AF was playing a huge role because the rest of my joint was so flexible (minus the lack of extension).
The final impression from Cinicinnati was: she has knee pain and limitaiton in her motion. We discussed multiple surgeries for the right knee to try and correct that versus totall knee arthroplasty in the future as she has some signs of patellofemoral arthrits and this could be done at one surgery rather than multiple surgeries to try to correct a lack of extension.
Dr. Lindenfeld's note to Dr. Whiteside states- I believe that this patient will need a take down of the osteotomy to correct for the flexion contracture and my belief is that a TKA would probably serve this patient best since she has almost lost a decade with multiple operations and probably needs one operation that can help her. I discussed this with Dr. Frank Noyes who agreed with this.
I just feel lost and overwhelmed. 

[skibum9]

Jill

I feel for you. You have a tough decision to make. I thought I would chime in with my story of been there, done that, and have the t-shirt (actually got 3 t-shirts) to prove it.

The reader's digest version of my story is busted patella in Nov 2006. Original OS (incompetent boob) and PT (not much brighter) never recognized the scar tissue settling in, taking hold, and changing the mechanics of my knee in an irreversible manner. Five months later, I see Dr. N and diagnosed with AF and patella baja with ROM of 10 to 95. Patella tendon in affected leg is 30% shorter than the good one. Pain was on the rise and the quadriceps had shut done. Just not a pretty situation. Dr. N opened up the knee and removed the scar tissue and well it just came right back.

Without the patella being in the right spot (much higher than it was), the mechanics were not right and it just continued to grind. I had to make the decision to have him basically rebuild my knee by lengthening the patella tendon with harvested hamstring tendons. By the time I had to make that decision after 7 months of extreme pain, I made the decision before I had made the 5 hr drive home. July 2007, I have the lengthening surgery. Rehab was not a fun experience. It was brutal trying to stretch out the tissues that had contracted in the 8 months prior. But I could get it straight and bent to 135. The problem was the scar tissue came right back again and bogged down my new patella tendon and was basically just tearing up the joint itself. The hardware had to come out in January 2008, so the scar tissue was removed again and came right back - again. Lost a little ROM following that surgery, but continued to have significant pain. I could just feel the joint grinding with every step I made.

Jump ahead to summer 2008, now the doc tells me I'm in a good position for a TKR because the mechanics of the knee are better. I agonized over this decision for months, probably about 6 months or so. And I mean agonized over it, nearly drove my self crazy. There is no going back. All the what if scenarios where going through my head and only 44 at the time. I managed to get my pain doc to order a MRI. The radiologist report came back as if my knee was almost perfect. However, the images told me just how bad things were in the joint and how jagged all the ends of the bones were (this was my ah, ha moment). I could finally see that the situation had no chance of improving with out a TKR. Finally decided to take the plunge and got shiny new parts in March 2009.

So here I am today, 3.5 years after a fall in a parking lot with shiny new parts and 0 - 110 in ROM, with constant moderate pain. Life has been an emotional roller coaster ride during this time with more downs than ups. I went from "Ms. Athletic" to "Ms. Couch Potato". I will learn to enjoy video games. With that less than stellar view of life, I will say that I have no regrets in having the patella tendon lengthening surgery or the TKR. In my particular situation, I developed so much scar tissue the joint was just destroying itself with every move and the situation had no chance of improving without the intervention. Now I just have so much scar tissue, it's like super-gluing your fingers together and constantly pulling them apart.

With all of that said and after having lots of time to reflect on all the decisions I made in the course of trying to reverse the nightmare, I have a few pieces of advice.

1) get copies of all your medical records from all the doctors you have seen [I'm on my third large notebook]

2) seek additional opinions [every OS will have a different opinion, you have to find the one that is right for you]

3) the most important aspect is the PT afterwards [does the PT understand how to treat AF, how does and how often does PT communicate with the OS]

4) your definition of success will be different from that of the OS [my view is constant pain and limited functionality, but better than where I was going; OS view is that I'm doing great]

5) I don't think doctors really take the time to understand the problems that their patients are having other than the blatantly obvious [this is just not OS's but most doctors, and I have seen my fair share].

Hope telling my story helps a bit. Again, no regrets on the surgeries to try and restore function, but didn't end up with the results that I was hoping for. Stretching out tissues that have been contracted for a long time is brutal.

Sharon

[Jill M]

Thanks for your reply Sharon. I do have all of my medical records up to this point with the expection of the last MD that I saw this week. As you stated, I am agonizing over what to do.
I will probably seek another opinion and go from there. It just all sucks.

[Rennschnecke]

Jill

From what I recall, the 6.5cm difference in heel height translates to a difference of 6.5 degrees in extension.  When I've had mine measured at home there is usually som variation so from my experience your loss of extension is likely to be between 6 and 7 degrees (allowing for some measurement variation.  It is certainly enough to impact on your gait and cause the secondary problems that you've mentioned.

I've had PTs give up on me as well.  I suppose people always like to feel they're succeeding and it's hard to feel that way about me when I'm not improving.  Nevertheless, I am continuing with exercising as I think my stretching has kept me from getting any worse while waiting.

Feeling conflicted is such a simple way to put what you and everyone who has ever been in this position goes through.  Having a TKR can damage your identity so much, whilst those who don't know it's threat may not understand that.  I would agree that sometimes doctors seem to understate matters, but I guess if I were on the other side I might feel the need to protect myself from fully empathising for protection.  It takes a rare person who can make you feel they fully understand your problems without getting so emotionally invovled that it can become difficult to make balanced judgements.

That said, based on what you have said is it possible that your OS wanted to spare you another long series of surgeries with no improvement in the outcome?  Would it be possible for you to get back to you OS to discuss the outcome from your referral?  I think that if I were in your position I'd do everything that Pam has suggested.

As you said, it sucks!  But we're all rooting for you!

[skibum9]

Jill

Yes, this all sucks. Just no other way to state it. Here are the links to my two threads on the TKR forum. Maybe the first will show that you are not alone in making the decision and that others have struggled too. The other is my post op diary.

Decision thread
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=43263.0

TKR thread
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=46014.0

There is no easy answer, but one day you will have the "ah, ha" moment either way. Just try not to drive your self crazy in the mean time. Feel free to vent any time, KGs always listen.

Sharon

[Jill M]

I was able to find an email address for Dr. Blaha. I sent him an email on Friday and he replied. He said that he felt I had received good advice thus far but he was willing to take a look at my records. He forwared the email to his administrative assistant so we could coordinate everything.

[Janet]

Jill:

You will like Dr. Blaha. He really, really takes the time to answer your questions. His PAs are great, too. In fact, I found that he would answer my question, then go further and explain why he answered that way. I've never had a doctor do that before. He actually had me get two other opinions because I was having so much trouble making a decision about the TKR. I was miserable, had given up everything to stay off my leg and keep my knee as straight as possible, was only 48, but I was worried that the TKR wouldn't get rid of my pain and that I would just start the AF cycle all over again. While I had a very difficult time with my TKR, Dr. Blaha never gave up on me. When I said I could live with the problems I was having, he said he couldn't. It took almost three years, but now I'm doing great. I have flexion of a little less of 110, but I can use my full flexion now so I feel like I have more. I've never had an extension problem, except with my biceps femoris tendon which caused a lot of pain with full extension....another thing Dr. Blaha never gave up on.

I think you are doing the right thing to get more opinions and take the time to make your best decision. This is a big deal because, as they say, there's no going back after a TKR. You want to make sure it will solve your problem. Dr. Blaha only does replacement surgery, so if there is something else that needs to be done first, he would not be the one to do it. But he has wonderful contacts with colleagues all over the country who are dedicated to research on difficult knee problems.

Good luck to you. Let me know if there is anything else I answer for you about visiting U of M. He has recently moved his clinic hours to the hospital complex from an offsite location.

Janet

[Jill M]

Janet,
Thanks for sharing your experience with Dr. Bhala. I am going to call his secretary to get my medical records to him. I figured I would start by sending the medical records. He said he would review these then based on what he reviewed then I would scheduled an appointment.

Jill

[Jill M]

Just a quick update.  I sent my records to Dr. Bhala for review and have scheduled an appointment with him on June 30th.

I am not having as much pain since the weather is warmer. I also had to have my left heel injected due to plantar faciiatis which is a result of my altered gait. Following the injection I was put on a steriod pack for 6 days. That made me feel good for a week!

Otherwise just hanging in there.