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Revision TKR Knee replacement is not nice to me...

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Audrey- I understand you thinking I am not being pro-active in getting help; but like others have said, we don't know what people do and don't do. I don't post everything as sometimes I just don't.

I have tried to get into the Portland office, but after being denied THREE TIMES due to my age, I really didn't have a positive feeling about doctors who are looking at my age and not my condition. Sure, I could have written a letter and tried for a fourth time to get it, but do I really want to see a Dr who is more concerned with my age than my knee?

I HAVE called offices in Boston and New York and checked on availability. I just haven't decided if I am going there yet.

I sought other orthopedics' opinion- saw a revision guy at another office and he said the exact same thing that Dr W has said. The only difference is that the other one said he wanted to wait until October before doing more tests, while Dr. W is willing to do some right away.

I do appreciate the help and honestly listen and take heed. I am comfortable where I am right now and am so freaking tired of chasing one doctor after another, having to go through the introductions all over again, new x-rays, etc. I'm tired of it. I am fine with where I am at this point and am trying to move forward, not stay where I am.
 
I had a CT Scan last Tuesday (July 26) to see if anything was loose. My orthopedic is on vacation this week, so I hadn't heard any results until today when I talked to the Nurse Practitioner that works in his office.

She didn't say a whole lot, just that she would have Dr W call me next week. She did say that the report said that no components appeared to be loose, but that I do have extra fluid in my knee (duh! I could have told them that without the costly test. There's a big lump of fluid above my knee cap that's been there since like December or so that gets a little bigger each month.)

The pain has been horrible- I have no way of managing it. I called two orthopedics and my family dr on Friday looking for help, but all three are on vacation. I have Ultram and Tylenol 3 that I can take, but it doesn't even begin to touch the pain I feel as I attempt to stand up or sit- that grinding pain I feel under my knee cap at that time is untouchable.

I'm discouraged. Not that I wanted anything to be loose, but I was hoping for an answer I guess. My summer is just about over and it has sucked as I have spent a lot of days lying on the couch with my leg elevated and icing.
 
Coachie, when one asks me, "How was your summer?" ugh.... hate that question.... I say either "Intense" "somber" or "humbling" and then change the topic. I am still struggling each day. I admire you and what you have accomplished so far. Prayers are with you for a better day and more answers you will feel informed with. :prayer1: I think I have aged about 10 years in some ways this summer. :old:
 
Does anyone know what causes fluid to build up in a replaced joint and if that could be the cause of pain? If all my tests show no loose joints, then I don't know what else could be causing me to hurt so much.

There is a big pocket of fluid that is visible right above my knee cap area and then I'm assuming there's more lower in the joint too as that's where more of the swelling is.

Does anyone have any ideas?
 
Coachie:
I also have spent the summer on the couch, looking out the window at the sun and I feel your frustration.

Maybe when you see your OS he will draw off that fluid, and send it out for testing. Swelling this far out is not normal, and, well neither is the pain you describe.
It is a shame you are allergic to narcotics.
Please do not get angry with this, but what exactly happens to you when you take them?
Also, if you are still reading this, has EVERY narcotic been tried?
I know you do not want to be tied to a bottle, goodness knows, I am struggling with the same thing, only I do have back issues and nerve involvement leading to atrophy. My doc pulled me out of work.

Please do not see this as anything other than me reaching out from my couch to yours.
Allergies can be life threatening, and if you are allergic you can't take the drug.
What I often find as a medical person is people will tell me they are allergic because the medicine made them nauseated or made them throw up. Those are not true allergies, but sensitivities that can be worked through ie: take the pills with an anti-nausea med.

I would hate to see you in so much pain because you cant take any narcotics d/t allegies that might be just sensitivities.
There are also many different families of narcotics, in fact Ultram is a synthetic derivative of morphine. I tried the Tramadol as Jo suggested, but it did nothing for my pain. I gave it to the old yellow lab who is on it for, well,being old.

You might talk to your PCP re drug allergy testing BEFORE you try any new drug. If you are trruly allergic, your knee would be the least of your problems, but if you are NOT allergic, narcotics can give you much needed relief until you get this sorted out.
Just thought I'd put this out to you.
Wishing the best
 
Coachie said:
Does anyone know what causes fluid to build up in a replaced joint and if that could be the cause of pain?
Click to expand...

I am not a doctor and no expert but I've managed workers comp claims for over 30 years so I've read more than my share of medical reports over that time and interacted with countless injured workers during their recovery. The most common cause of fluid buildup is irritation in the joint. The irritation could be from physical contact (bone on bone, or loose part, or arthritic surfaces, etc) or from infection or even from a sensitivity to the metal used in the knee. Now that they've ruled out loose parts, maybe your doctor will be more willing to look for another cause but I understand how terribly discouraged you must feel.

I had read most of your posts and have to admit when you referred to doctors who didn't want to treat you because of your age, that you must be elderly and at greater risk for complications. But then I noticed you are far, far from elderly! I can't imagine why a doctor wouldn't jump at the chance to deal with a patient considerably younger and presumably stronger than the more typical >55 knee replacement patient.

I know you said you've spoken to your insurance company several times, but maybe you could ask them if they have a patient advocate who could help you navigate through this. Ask if they can assign a Nurse Case Manager to review your file and recommend a more aggressive course of action. From a purely financial standpoint, the insurance company doesn't want your case to linger on longer than necessary either! I hope they can help you.
 
Sandy- no offense taken at all. I appreciate your thoughts and suggestions!
The narcotics I have had a reaction to are Vicodin and Percocet. The Vicodin was after a hand surgery in 2004 and I broke out in hives. I am not opposed to trying any of them again- in fact, was thinking about telling my Dr that I don't care anymore about my worries of addiction and dependence, that I NEED to take stronger meds. The Ultram does nothing for me- I don't know why I even bother to take it.

The Percocet was a different story... When I had my left tkr, after my pain pump was taken out, I was put on Percocet. My first dose was around 12 and after it, I noticed I was pretty flushed and my skin was red. My 2nd dose was around 6'ish and my sister was there and she noticed how red I got and how I had hives on my arms and stomach. She mentioned it to the nurses, but they said it was "normal". Then around midnight I had a 3rd dose of it. After about a 1/2 hour, I was feeling really bad- my face felt super tight like I had a bad sunburn and it was super red, and then my throat started feeling really tight too. I called the nurse's station and they checked me but said I was fine. 1/2 hour later, my throat felt super tight and I felt like I had something in there so I called the nurses again and when they came in and saw the hives covering my body and me grabbing the bottom of my throat every time I tries to swallow then gave me a dose of Benedryl in my iv. Since then, I haven't taken any. Ibuprofen gives me facial swelling and hives- last time I took it my eyes swelled shut and my lips swelled pretty bad before I had a chance to take some Benedryl.
 
Hi,
If you remember me writing this, when I had my CT scan, it did not show everything that the Dr. found once he was inside my knee. The CT scan DID show that the prosthetics were set at the wrong angle, but the CT scan failed to show that the bone had not adhered to the prosthetics. By not adhering (remember...the botched TKR was a NON-CEMENTED implant) the Dr. agreed that this was part of me having intense pain.

I agree that fluid can build up from having friction/rubbing/grinding/ etc. within the joint. I had a lot of fluid build-up BEFORE I had my first TKR due to bone-on-bone grinding. I don't know why you have fluid build-up on TOP of your kneecap. That interests me.

I'm sure when you have your follow-up with Dr. W and he can go over the CT Scan with you, you will get more information. The office staff can only tell you just so much because of liability.

I am again going to suggest that you write a letter with Dr. W's support (that is, if he cannot help you) to OA in Portland, or to ANYBODY else who is a REVISION SPECIALIST. I hope Dr. W can help you, but if he cannot, you have GOT to write a letter to somebody. Depending on how the letter is written and the details of what procedures and outcomes you have had, you cannot give up with anybody who says you are "too young". Again...without sending the letter, I would not have gotten into OA. You need to make it personal. I know for a fact that if you are seeking a second opinion, OA WILL see you...no matter what age. I know this, because I have asked them. All you have to do is call the office and ask what procedure you need to follow in order to get a second opinion. If you need a referral, ask Dr. W.

I'm sorry you are in so much pain. However, have you considered getting a nerve block? I'm not a fan of them, but you seem to be desperate at this point.
 
Audrey is right, Coachie. If this doctor doesn't see the problem in whatever tests he has done, it doesn't mean there is no problem. Sometimes these things are very difficult to read from scans and films. You need a VERY skilled revisionist and so far I don't think you've been to that type of doctor. It doesn't mean this doctor is not competent.....it just may mean your problem is not something he is familiar with.

If you want to get to the bottom of what is causing the inflammation (that's where the fluid comes from....it's a symptom), you are going to need to keep searching for the right doctor....one who has seen a lot of problem TKRs and who has done a lot of revisions successfully.
 
I agree too. If there is a joint effusion (build up of fluid) that can be extremely painful in itself but it's a symptom not a condition. Kate was also very correct in saying that fluid occurs because of irritation - just like in a blister. So the big question is, what is causing the irritation? Like Jamie, I still think you need the experienced eye of a revision surgeon to get to the bottom of this. Unlike regular surgeons, they see an awful lot more of these problems and are therefore better placed to know what's going on.
 
Oh Bummer, Coachie, those are true allergies. Darn. Have they tried you on demerol or dilaudid? Oldies but goodies.
Didn't you say you went to a revisionist in Auburn?
I saw 2 revision specialists who are unaffiliated with each other and was not tremendously impressed. They both stressed that not only was there nothing wrong with the knee, and they both felt that my expectations are too high..
Like climbing stairs, or getting in and out of the car, OR better,driving???
I found them pleasantly condescending and will not return to them even if my knee falls out.
 
I absolutely, positively agree. Fluid build-up in a reaction to something else going on. Before I had my TKR, I had what they call a "McKay" procedure to post-pone the inevidable (?) TKR. My surgeon at the time was fabulous, however he's now retired. Because my kneecap was grinding and rubbing on the top of the tibia, I had fluid buildup almost constantly. I never had to have it drained...just lived with it because I knew WHY I had the fluid build-up. If you have fluid build-up, there is a reason..it just doesn't happen. Are you going to go the "long haul" with Dr. W, or are you keeping your mind and options open to having him refer you to a REVISION SPECIALIST? I hope you don't just "give up" and figure you are in for a lifetime of pain, because that would be nonsense. And please....I know your coaching season is about to begin, but you have to put yourself first, no matter what. It's great that the school and kids are supportive, but you have got to be proactive and just keep this situation the most important thing in your life right now. No matter how frustrating, no matter what. I think most everybody here would agree. If you can teach sitting down without aggravating the problem with your knee, that is WONDERFUL! However, if you are coaching and doing more than you should, you could very well be damaging it further. ...and I speak from experience! Don't try to rush things at this point...just take it as it comes. You'll be talking to Dr. W soon. Before your appt. get all your questions and concerns written down and take them with you. It's easy to forget things when you are emotional.
 
Coachie,

2 weeks ago I had a fluid build up that had grown to the size of a kneecap on the side of my knee!:hate-shocked: My physical therapist mashed on it and then Katie started massaging it and now it is down to almost normal again.

I don't know what caused it, but it is not painful. When it was the size of a kneecap, it did have a hard border, nut that has disappeared.

I see my revisionist on the 18th of August and I will ask him. I will let you know what I find out.:biggrin:
 
Coachie, please take care. If you have to select priorities at this time to take care of yourself first then please do it. I had to do this. I teach a group of high schoolers early in the morning before I go to school. Call me crazy but I REALLY enjoyed it. (still don't think I will be a high school teacher!) These were really good students. I will miss them so much, but I had to give it up. I just have to take care of my health now. I still do my cub scouts on Wednesday night, and that is so much as it is. Good luck with your choices. I am glad for you that you are trying for so many answers. I do think when my knee is at its worse then I have fluid too, but not as bad yet as yours. One step at a time. God be with you.
 
Hi Coachie:
I too have had to make a huge sacrifice to get better. I've had to take a considerable amount of time out of work so far, with no set return to work date. I am havng to re-assign all my OB patients indefinately and may never practice OB again. This is a devestating loss, but without health you have nothing and no job is worth risking your physical and emotional health for. (Right now you are catching me in a rational phase. I spend most of my hours being totally irrational about this unexpected turn of fate)
Again, support from my couch to yours.
Sandy
 
Hey Sandy! Boy, don't I know what you mean about the "rational phase"! I was given the best advice by awolfpaw: celebrate the little things! Boy, is she right! Wishing and hoping is ok...as long as it's not obsessive. I hope Coachie reads these posts and knows we all care. We've all been in "denial" and then that passes and we get "smart" about things...especially our health being the #1 concern.
 
Thinking about you, Coachie, and hoping that you are hanging in there and having some decent days this summer...

I continue to have a lot of swelling/fluid around my knee - in large part due to the overstuffing and malrotation of my implant. I found that Celebrex did help lessen my swelling and inflammation. However, I am currently off the Celebrex in preparation for my TKA revision coming in 8 days and I am pretty miserable. I can't remember if there is a reason that you couldn't take it. Maybe a med incompatibility?
 
The Celebrex is not an option because of my allergy to Aspirin products. My body rebels with a lot of medications. I wonder if it is because I was brought up in a family that was pretty much all-natural. We never went to the doctors, didn't have certain immunizations, never went on meds, etc. In fact, my first time ever on an antibiotic was in 2008 when I got strep throat (which was also a first for me.)

I tried to get in contact with my family Dr on Friday to see about the option of getting something stronger for pain management- if only for a few days to see what it would be like to not have pain- and had no luck. Maybe tomorrow I'll get in contact with someone that can help out. I'm also hoping that my orthopedic will call tomorrow to discuss my ct scan.

A lot of you must be able to read into much of what I write as I have been struggling with some things. The closer I get to the end of my summer vacation, the more panicked I get at the thought that I am in more pain now than I was at the end of the school year, so how am I going to be able to handle it? It really worries me. I have a limited amount of sick days that I can use before I start to lose pay and health insurance. Maine does not have short-term disability, so there are so many thoughts rushing through my head that it isn't even funny. I don't want to go through all the "what-ifs" right now as it just discourages me even more, but there are a lot of them out there and not one of them leads to a positive result. Sigh.
 
I would think that Dr. W would call you into the office to discuss your results. It's not something I would want to discuss over the phone, no matter what! Also...you may want to research getting short-term disability insurance through a private carrier. They DO offer very affordable policies...you just have to find them.

The reason a lot of us can "read into what you are writing" is that we have been through this. We've been through the worry, the denial, the frustration, the depression, the "what ifs"...all of it. Some of us have lost our jobs and careers (me included) because of our individual circumstances. Some of us have lost friends because some of those friends just can't stand it when we constantly complain...even though they WANT to understand, they aren't going through it, so it's impossible for them TO understand.

It's ok to be angry. It's ok to be frustrated. It's ok to cry, scream and get mad at what life has dealt you. After you do this, then you get your priorities straight and put yourself FIRST and do ANYTHING you can to find solutions and the right people to get you free from pain and to find a diagnosis.

In the meantime, you MUST celebrate the little things that you CAN do. I know it's a struggle...so many of us go through this each and every day, but you have GOT to find something positive in your life each and every day or this "thing" is going to swallow you up whole.

You have BoneSmart and other sites that will support you, guide you and inform you. The only thing that is not acceptable is anybody that ENABLES you to wallow in your pain. A FRIEND won't let you do that and will tell you honestly how they feel and will be blunt, honest and sometimes you will hear things that you don't like. I speak from experience, and from the heart.
 
Good post, Audrey....spoken from the heart and as a good friend for Coachie.

Coachie, my only caution to you would be to not let your frustration with what has happened so far keep you from taking quick and firm action to try and find someone to help you. You certainly don't want to put yourself in a position where you have lost your job and/or lost your medical insurance. At that point things will become much more dificult for you to resolve and your options will be fewer.

We do care about you and are here to support you in whatever you decide is best for you. But I do hope that you make conscious decisions in the coming days and weeks and don't just let things play out by themselves.
 
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