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Potential Partial Redo of RTKR - need advice

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Motherofmany

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Hi Everyone,

It's been a long time since I've been online here. Just went for 1 year check up on my left knee and all was well with it. Right Knee is a different story.

Originally had it replace 3/31/09. Many complications. Then MUA in July 09 and finally scope/clean out of knee from adhesions/scar tissue Dec 14, 09. Have worked dilegently with aqua aerobics 8-10 hours a week along with regular life of mother with 9 under 18 at home. Also spend time on stationary bike and leg press.

Lately the knee has become unsteady. Seems the patela is slipping. Is happening more often, 2-3 times a week. Dr. K was unable to get it to move at all and order another x-ray with knee bent to see underneath. Nothing shows on x-ray. He said adhesions would not show up. The problem we see on the side view x-ray is a mass behind the knee that originally showed up on x-ray in March. He believes it is from the clean out. Possible bone chip or cement in the soft tissue. Knee is stiff, sore and loosing ROM, no matter how much I continue to work it. He thinks I overdo and wants me to back off. Problem is just 3 days at home living normal life and resting causes severe stiffness. Makes it difficult to get around and is very painful. The pool seems to give much relief, so I keep going.

He is ordering blood work with a scan to check for infection. Not sure exactly how that works, but says they remove blood, insert some sort of dye then reinsert it and scan knee 6 hours later to see if white blood cells are heading to knee area. This seems expensive and unneccesary to me, but he said will not touch the knee until we eleminate any potential infection. Knee is swollen and has heat at times and pain, but doesn't appear festered.

I am still icing and elevating and taking an anti inflamatory Meloxicam. 2 extra strength tylenols with a 50ml tramadol the mornings I work out. This manages the pain. On my days off I just take the Meloxicam and tylenol and sometime ibuprophen at night. When I overdo, I have to take an Endoset with Aleve to control the pain.

He suggests I get a second opinion to see if he is missing anything for both our peace of mind. I am checking into another practice in the next town for a second opinion before I make any decisions what to do.

I asked what he would suggest if it were his knee. He says to remove the mass behind the knee, he has to take it apart from the front, remove the insert and clean it out again. He said if he were to take another couple or mm of bone off the tibia, he could put a larger insert in and angle it towards the back. The current insert is the smallest available. He thinks that may be limiting my ROM, along with the scar tissue/adhessions that my body seems to be famous for making. Yes, that mean cutting, chiseling and drilling again!

Frankly, I am frightened :shk: and uncertain what to do. The thought of a partial redo scares me greatly. I remember the pain and know what it takes to recover. Definitely not looking forward to any more surgery or pain, especially with no guarantees on how it will heal. This is my driving knee though and I need it to be stable. Afraid it might lock/slip while I'm driving the big van. Certainly don't want to cause an accident or put my family/others at risk.

Any advice from you wonderful Bonesmarties would be welcome. Thanks Jo and all for still being here for me to come back to.
 

RestAssured

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Hi Rose,

I'm not sure where you live but if you live anywhere near TX, there is a great revisionist that will help you! I thought I was going to need a 2nd revision on my right knee, but after seeing him, he plans on killing the MRSA without having to go in again and redo the knee. He said my knee looks great. He could help you, I know he could. I just don't know what state you live in.

I am sorry you are having so much trouble. I hope someone can figure this out for you!
 
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Motherofmany

Motherofmany

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I live in North Carolina. Texas is a bit far to go. :hehe: Thanks for the quick response though and the recommendation. Hoping to avoid a redo.
 

skigirl

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Rose,

I don't think I would jump in for that revision either-- I think you need to see someone else---perhaps a revision specialist---even though you might have to drive to a major city or teaching medical school to see one.

Compared to the pain of a revision, a trip to see a revisionist seems like nothing. I know that Jamie is able to help you find one in your general area.

I think that the first doc has done enough to your knee. It sounds suspicious to me that NOW he thinks that he put in a prosthesis that might be too small. Something about that does not feel right.

I have had some patella issues with my left knee--but they have been solved with a neoprene "J" brace that I wore for a month. That was enough to stretch the patella so that now it tracks better. It did not hurt, but made a funny crunching sound---that is now gone, thank goodness.

I know that this must be really frustrating---especially with a big family to manage. with luck though, you can avoid more surgery. Kelly
 

Oldie

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Rose, so sorry to hear you are having problems, we are from about the same time on both knees. My left knee has been very good all along, had some pains with my right one at l4 months but went back to PT, chiropractor, and massage therapy took care of it all. Seems the pain was referred pain from by lower back because of being out of alignment after the surgeries. Sure hope you can get it all resolved without another surgery. Will keep you in my prayers.
 
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Motherofmany

Motherofmany

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QUOTE "I think that the first doc has done enough to your knee. It sounds suspicious to me that NOW he thinks that he put in a prosthesis that might be too small. Something about that does not feel right."

Skigirl,
I love your protective nature. Thanks, I appreciate it. Dr. K is a well known surgeon and is extremely conscience and very good. The fact that he wants me to have someone else look at his work to make sure he hasn't missed anything is a testimony to his integrity. I don't believe he made a mistake putting in the smallest insert. He was only removing damaged bone with the least amount of bone loss.

The reason why my right knee is a booger (I believe) is because much trama due to allergic reactions to medications and complications. Not something within his control. My body seemed to go into hyperdrive to overcorrect creating adhessions immediately. My left knee did so much better because we avoided those same medications and I was in much better shape due to 5 months of PT. Had I of waiting in the beginning and done minimally invassive surgery to clean out my right knee until I was in better shape, I am certain I would have had better results.

Drs. cannot control how we heal. I don't see any negligence in his work and trust his opinion. I do however see wisdom in seeking a second opinion to look at ALL my options and make a wise decision. Not rushed.

Would love to hear from Texas on this since she underwent the same corrective surgery.

Thanks everyone.
 

Jamie

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Hi, Rose....it's good to hear from you, but I'm so sorry it's under these conditions.

I agree that you need a revision specialist to take a look. You can use the CLINIC LOCATOR link in the gold tool bar at the top of every page. Type in your zip code and the distance you are willing to drive. You will get a list of potential doctors and clinics. Then you have to do some (pardon the pun) leg work....you'll need to click on the website link for each clinic, find the doctors' bios and read to see if they mention something about revisions, "difficult cases," or something else to indicate they might be the person you are looking for. When you get a few, call the offices and discuss your case with the personnel there.

It's perfectly okay for you to get MULTIPLE other opinions too. Sometimes two or more are needed to find the right person to deal with your specific problem.
 

Josephine

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Rose, my darling! It is good to see you again but I am devastated for you. You poor girl!
Lately the knee has become unsteady. Seems the patella is slipping. Dr. K was unable to get it to move at all and order another x-ray with knee bent to see underneath. Nothing shows on x-ray. He said adhesions would not show up.
This is correct - adhesions are soft tissue.
The problem we see on the side view x-ray is a mass behind the knee that originally showed up on x-ray in March. He believes it is from the clean out. Possible bone chip or cement in the soft tissue.
That is entirely possible.
He is ordering blood work with a scan to check for infection. Not sure exactly how that works, but says they remove blood, insert some sort of dye then reinsert it and scan knee 6 hours later to see if white blood cells are heading to knee area. This seems expensive and unnecessary to me, but he said will not touch the knee until we eliminate any potential infection. Knee is swollen and has heat at times and pain, but doesn't appear festered.
Infected knees don't appear festered, that's why such tests are necessary. It's what we call an 'occult' or hidden infection. Read this article Late onset infection in joint replacements
He suggests I get a second opinion to see if he is missing anything for both our peace of mind. I am checking into another practice in the next town for a second opinion before I make any decisions what to do.
Well that is reassuring in that he's prepared to accept another opinion. I would be worried if he didn't.
I asked what he would suggest if it were his knee. He says to remove the mass behind the knee, he has to take it apart from the front, remove the insert and clean it out again. He said if he were to take another couple or mm of bone off the tibia, he could put a larger insert in and angle it towards the back. The current insert is the smallest available. He thinks that may be limiting my ROM, along with the scar tissue/adhesions that my body seems to be famous for making. Yes, that mean cutting, chiselling and drilling again!
His suggestions all sound very logical. You maybe could do with some more space between the two implants and a change in angulation which can be achieved by what he's suggesting.
Frankly, I am frightened :shk: and uncertain what to do. The thought of a partial redo scares me greatly. I remember the pain and know what it takes to recover.
Well, of course you are frightened! You wouldn't be a normal human being if you weren't. But you must try to accept that something needs doing. This situation has gone on too long to show any signs of improving on its own. The thing you need to understand as well, is that the revision is never quite as bad as the first time because all the major bone cutting has been done and the trim of the tibia won't be anywhere near as bad. Other than that, it's just a soft tissue thing and you'll find the recovery much simpler. Sure, you'll need all the usual stuff, remember our mantra? Rest, elevation, ice and pain meds. But you know that we will see you through it and that you can lean on us for anything and everything.

Now go and get your second opinion - and a third if you feel like it - come and tell us what was said and we can chew it over. Other than that, just try not to think about it too much or you'll end up worrying yourself into a nervous breakdown! :cnsl:
 

Jamie

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Well, said, Jo.....let us know if you need any specific help, Rose...we're with you in this!!!
 
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Motherofmany

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Thanks Jamie and Jo,

I know I can trust your advice and appreciate it greatly. I also trust Dr. K and know he wants what is best for me. We have had a great patient/Dr relationship for years now. Good to know that it sounds right to you Jo.

The crummy thing is, I have had a couple UTIs since my surgeries. That makes since to do the blood work to review any possible unseen infection. Good article by the way Jo. Very informative, although it 'freaks me out' a little to know a simple UTI can cause such a mess. Praying I'm not in that 1%, but wouldn't be surprised if I am.

Will do the search like you suggested Jamie and start making calls tomorrow when offices are open.

Blessings,
 

Texas

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Hey Rose its Kim...I haven't been on in awhile either.i miss this place its amazing......But someone told me you were poss having your knee revised..I just went thru it you know the problems i had well we decided to redo that whole thing.I cant tell you how happy I am. I'm only about 8 weeks and wow what a difference I can do things at 8 weeks i still couldn't do before.....I did have another Dr do it and he is great.i couldn't be happier.Please dont be afraid....My first Dr kept throwing out infections etc but all and all it just wasn't a good fit and alot of other problems you know about that I had, its all in the Dr and how he does it this one was just the best in my eyes, well the knew one. The old one was trying to make it work with more and more surg. Finally I went to a real Dr and Like I said what a difference ...I think you still have my mail please please dont hesitate to write Ill help anyway i can......Im sure anyone here can as well.....Bit believe me it can be fixed and it can work....Im full of energy ad so happy I really am and you can to .......Miss ya take care and Ill ck in and see how you are doing.....wow I so miss this place , trying to work 2 jobs, , kids , Brooke last yr and graduation etc just keeping busy and for the first time is yrs I can do it......xox take care........Love all bonesmart friends. xoxoxoxo
 

Texas

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Ps I had the same ting when the new dr took the old replacement out he took out 2 inches of scares tissue and about a 1/2 cement bone etc is was not good....but it worked out but make sure you trust and like your dr please thats advice to anyone the dr is so so so important......but thats why my knee now doesnt look swollen all the time its normal with just the repl in the no extras...Its been over a yr since i have been on here and its the best place I couldnt have done it without all of you Jo Jamie everyone i owe them everyone soooooooooooooo much.;)))) love ya.
 

Josephine

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Love you too, Kim! Thanks for your email.

Glad you feel more settled about things, Rose. Keep us posted and we'll see you through.
 

brs0660

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Rose...Sorry you are having a tough time. Sounds like your doctor has your best interest in mind. Heed his words and let a revisionist take a lookie and your kneesie! Keep us posted on your progress.

I have missed you so much.....I know you have been busy out of your mind with your family. Always love your encouraagement.
 
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Motherofmany

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WARNING.....better sit back and relax before reading this rant. :wink: Much has happened since my last post.

I went Sept 16th for the Ceretec Study/Nuclear White Blood Cell Tag Test on BTKRs. Arrived at 6:30 am for a very long day that didn't end until 6 pm. It took 3 sticks that collapsed my veins before they set an IV pic line in my arm to draw the 60 ml of blood required. They sent it off to the nuclear pharmacy, so there was a 4 hour delay. When I returned, they realized there was additional labs ordered, so off to the lab I went for my 5th stick of the day. Then back to Nuclear Medicine office for them to inject my 5.3 ml of white blood cells tagged with radioactive ceretec to check for infection and inflamation. Waited 2 hours for first scan, then an additional 2 hours for second scan.

Dr. K said these test were normal. He wants me to rest and not do anything. I told him to do so causes more pain and stiffness and requires assistance to get out of bed, much less move. He still recommended partial revision of right knee to remove the mass behind it and cutting the tibia at a back angle to increase ROM. This didn't sound appealing at all! I told him I had scheduled the second opinion he recommended. He said he would entertain additional input to see if there was something he missed. I appreciated his honesty.

On Oct 1st I went to see Dr. P, a Joint Replacement OS, specializing in revisions (recommended from this site). First he did an xray from my waist to feet. Said the bones are straight and legs even. Also, my strength test was 5 of 5 - Excellent; shows all the HARD work I have done to keep moving. That's where the good news ended.

As for the bad news: I have shrunk 1" since my surgery - causing my BMI to increase. :skp: Said my hips and shoulders are bad and recommended I have injections then see a Rheumotologist for further arthritus study. I told him I tested negative for RA, to which he replied "RA is only 1 of 600 arthritic diseases." He then proceeded to do an extensive painful exam. His conclusion was "Effusion" of the knees. My RTKR ROM is 15 to 75 max (down from 5 to 100 it was after last surgery 12/09). LTKR ROM is 10 to 100 (down from 5 to 115). He also concluded "Mechanical Complications of Joint Implant and Loosening of Prosthetic Joints" in BOTH knees! :shk: He agreed with Dr. K that a revision is necessary in the RTKR, but said to do a back cut will make the knee more unstable and cause serious problems. He also thinks the LTKR needs revision. He said the Ceretec study was inconclusive and the Radiologist recommended a 3 Phase Bone Scan. Remember Dr. K said these test were normal. :skp: He ordered an Interleukin blood test (very expensive) to get clearer answers. I had both these test done yesterday, Oct 5th. He also said he wanted a Metal Allergy test done on Oct 18th and then return to see him on Oct. 21st to review results. As the man was speaking, all I could see were the $$$$ signs flashing in my brain. When I left his office, I wanted to scream and cry. I was so discouraged! Instead I prayed to the Lord who knows all and sees all. :pray: I know I can trust God even if I'm not sure about doctors. I am continuing to seek wisdom and peace from Him.

However, THIS IS NOT WHAT I WANTED TO HEAR!!!!! :hissy: I wasn't doctor shopping! I went to Dr. P for a second opinion because I didn't like the first one. I already have over $250,000 in my knees (about $10,000 out of pocket). Not to mention all the PAIN and SWEAT of the past year and a half of PT and excercising 8-10 hours/week in the pool plus keeping up with hectic life. :jump:

Incedently, I spoke to my trainer today and asked his opinion as to whether I should continue exercising. Will it cause additional problems and loosening of the joints? He said low impact water aerobics and walking (but no jumping in pool) should be fine. Dr. P told me to let my pain be the dictator of what I do as far as exercising. I reviewed what both OSs said briefly with Brian, my trainer. He said both doctors are excellent. He has heard great things about both and results from others he has worked with. I trust Dr. K and know he is an excellent surgeon, now this other OS said I need BOTH KNEES redone! :rant: Who can I believe? What do you do when two well thought of OSs don't agree? :pzld: I know I sound spastic in my writing. I am struggling to come to terms with this. I don't know if I can do this again.....physically, mentally, or financially. It was overwhelming the first time, trying to manage all my responsibilities at home with my large family. Not to mention draining our savings and borrowing from retirement account to pay for it. I don't want to put my family or myself through anymore than necessary. The pain in my legs has increased since my exam last Friday. The swelling and throbbing pain behind my RTKR is bothersome during the day and worse at night. I am having trouble sleeping, because I can't get comfortable. I don't want to live on pain meds the rest of my life!

Please share any insite or encouragement you have to offer. I'm afraid and impatiently waiting for the 21st to come for my return visit to Dr. P. My husband is going with me this time to help me sort through all the options.

Thanks for your ear - I needed to rant! :blush:
 

RestAssured

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Rose, I am so sorry to hear that this is happening to you! I know that I just got the bill from my white blood cell scan and my total body bone scan and the price was over 5000.00:skp: That's a lot of money for someone who is having to pay for a lot of their care! I have already met my max, so the insurance company will be throwing a party when December 31st rolls around!:ch-w::rotfl:

I paid a lot out of pocket to reach that point though so I am trying to get all of my surgeries finished before the end of the year.:D

If your knees are loosening, and becoming unstable, it might be a good idea to get a 3rd opinion, since the 1st two can't agree.

I am sorry you are in so much pain. I hope that they can come up with a suitable solution soon!
 

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Rose, you are never going to get two surgeons to offer the same opinion. Whilst I agree with him about the back cut, I would be a bit dubious about all the other extra tests he wants to do. I think a third opinion is called for and preferably from one who has nothing to do with either of the other two. A truly independent opinion.
 

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Hi Rose:
I'm so sorry you are in the midst of this nightmare.

You have 2 opinions from 2 well respected OS. I agree with Jo in that a 3rd opinion is necessary.

Jo is also right that getting Doctors to agree with each other is, well challenging.

I have heard it compared to herding cats, shoveling fog, etc.

You owe it to yourself to get as many opinions as you can, because this is a very BIG deal!

You are actually in a good place, if I may say, in that you seem to have faith in both of your Docs, and the original Doc had the good sense to refer you for another opinion. I have not had the same luck with my OS.

The monetary aspect packs a punch in our challenging economy, but this is your knee(s), and you cannot put a price on them, and your and your families' well being.

Always bring someone to your visits. When we hear things we don't like, we stop listening...

If the 2nd OS insists you need the other knee done, bring that back to the original OS to see what his take on that is. Regardless, I'd get a 3rd opinion. Maybe it will help you to decide what to do.

In the meantime, have you considered bracing the unstable knee until you get to the bottom of this conundrum?

Good luck,
Sandy
 

Jamie

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Hi, Rose.....while it is really nice to hear from you, I'm so sorry that you are in the middle of this confusing time. I give your first surgeon credit for encouraging you to get a second opinion. That says a lot for him even though some of what he was proposing to do might not be best for you.

I would feel just like you if I was faced with such a radically different approach from the second well-respected surgeon! I think you're smart for also discussing all of this with the therapist that sees the back end of the doctors' work. Any information you can get will be helpful in making your decision.

But....painful as it may be in terms of time and money spent, I also think you need to seek a third and very independent opinion before making such a weighty decision. I also agree that you MUST have a second set of ears hearing the discussion with your doctors. It's just not possible for one person to absorb it all and then relay it back to a spouse or someone else who will be discussing the options with you and helping you make your decision.

God bless you, hon! This IS tough....I know. But hang in there. All your diligence and work will pay off.
 
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Motherofmany

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Thanks ladies for all the input. I'm sorry about the long rant, sometimes writing it down and reading it helps put things in perspective for me. It's good therapy. :D

I am going to contact Dr. Ks office and offer him the opportunity to review both tests that were just taken and get his input. He may not want to, but I wouldn't feel right not giving him the opportunity, since he asked for another's input. I will also get medical records from the hospital so I can read it myself. I have been getting all films on cd and written orders to stay aware of who is saying what. Helps me sort out the confusion.

The metal testing suggested by Dr. P is because I can't wear my wedding rings anymore due to my hand breaking out. It seems simple enough. They tape some metal pieces on my arm or thigh and then leave them there for 3 days. Just requires an extra trip to his office. He will check the area when I return for followup. Seems a reasonable test. Dr. P doesn't know me and his opinion was formed based on thorough exam, not x-rays as he put it. Dr. K hasn't done the same type of exam. He is overbusy tending to all the broken bones, etc and doesn't have an hour to sit with me and talk and move all my joints - unfortunately.

I have considered a third opinion by traveling to Charlotte to the Specialist who works with the Pro Basketball Team. He is well recommended by a friend who I do aqua-aerobics with. First, I am waiting to hear results of these tests and speak to Dr. P and Dr. K with my husband present. I will probably take notes, so Rick and I can discuss what they say and make the best choice after much prayer.

I have also decided if I need to redo both knees, I will do them at the same time to eleminate extra hospital expenses, PT, etc. That is if they will let me. I don't think I could do it again twice. The healing will be the same and I know what to expect and do now. I have a better handle on pain management and have learned a lot the last year and a half. You all have been a blessing in helping to confirm things and teach my prior ignorance. For that I am eternally grateful - thank you! :wub:

In the meantime, I am taking it easy on the knees and wearing my brace on the right knee to stabilize it. I am modifying my workouts and letting my body dictate what is good and what isn't. To stop completely would be insane and very painful. I refuse to be so stiff I am bedridden, when using wisdom will help me.

Thanks again. Will post later when I have some more info from OSs.

Blessings,
 
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