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Revision TKR Never give up, keep trying, don't settle - that's me, Bonnie

I saw a new specialist on Monday. They are going to test me for metal allergy. Allergy causes inflammation, inflammation causes scar tissue growth.
 
Metal allergy? - That's a new approach, Bonnie. I wonder if it could be? It seems to me that there must be some reason why you make scar tissue so easily.

Do keep us up to date with the results. I'm crossing everything I have that someone can get to the bottom of your problems. You've been so brave and persistent. :friends:
 
:console2:Bonnie, I hope they can get to the solution soon! You have suffered way too long, "My Warrior Sister!"
 
@RunA42K Do you know how they plan to test for metal allergy? I had concerns about metal and bone cement allergies before surgery and I have "scar tissue" aka adhesions, too. I will be interested to hear what the testing involved and your results.

Gilina
 
Gilina said:
@RunA42K Do you know how they plan to test for metal allergy? I had concerns about metal and bone cement allergies before surgery and I have "scar tissue" aka adhesions, too. I will be interested to hear what the testing involved and your results.

Gilina
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The testing will be a special kit they use which is blood testing NOT the skin patch test. The test costs $500 but well with it if it gets to the root of the problem. 17% of women have metal allergies vs men who are only at 3%.
 
A message to Bonnie: I also investigated the Stedman clinic in Colorado (and ones in South Carolina and elsewhere) and thought that I too had arthrofibrosis after developing severe scar tissue following a TKR, then a manipulation, and finally an arthroscopic scar tissue removal surgery, all on my left knee in a period of about ten months in 2014.

My latest surgeon asked me if I ever developed excess scar tissue for any other surgery I had ever experienced, including my original 2006 arthroscopic knee surgery, and I responded "no."

A diagnosis of arthrofibrosis is therefore generally a red herring. If your body hasn't spontaneously developed it following other surgeries, why should it do so after a TKR?

My current surgeon explained to me that the tight feeling, the banging (painful) prosthesis elements, the adhesions (not scar tissue) are a result of an improperly installed prosthesis, the wrong size or wrongly positioned artificial knee joint(s). A revision surgery should be undertaken to correct such a problem, whether partial or full.

I too am awaiting the results of a metal/polymer allergy test, but this may be a long shot. Interestingly, I have noticed during the past year or so that I get severe back pain on the side opposite my surgical knee, and exercise to get it to abate. Could I have spacer trouble in my left knee? I had attributed this to my generally stiff knee and my too firm mattress, but you are the first person to mention the back pain.

My legs seem to still be the same length (the operated leg was straightened because I was born bow-legged), and none of my treating surgeons ever mentioned any spacers. You've given me a lot to think about.

I am in NY but know a number of people in Houston if you find the perfect surgeon there.
 
A little update here. I spent the entire day last Monday in the Texas Medical Center getting testing done. I left my house at 8 am and didn't get home until 6 pm but being that it is over 30 miles one way and horrendous traffic to battle, I opted to just do it all in one day.

I have a new specialist at Texas Orthopedic Hospital, the very first day I saw him on Sept 14th they took x-rays and drew blood. The very first protocol is always to rule out infection and any loosening so I had to do tests regardless of whether I personally think it is necessary. So Monday the 21st, bone scan place was first where I got the injection to get that dye circulating in my blood stream and was told to come back no less than 3 hours later. I went to the next place and picked up my metal allergy testing kit. Then to another floor for a knee aspiration (OUCH) I almost jumped off the table! Then next took my metal allergy texting kit to another lab where they drew blood. Blood draw $25, metal allergy test $573 and insurance covers none of it. Then finally I returned for my bone scan which ended up being over 4 hours later.

So now I wait...until Monday October 5 and I go back down and see my new doc to get the results. Ironically Dr. Incavo's office called me just out of the blue and asked if I would come in for an X-ray to see how my revision was doing. I paused...taking it in that his office was actually calling me because after my revision he told me not to come back for 8 years! I replied, "Well, no I will not come for an X-ray." Going on the say, "I asked Dr. Incavo for help last September, October, and December and he just blew me off. He would not consider that I could be growing scar tissue and just had surgery for scar tissue for the 2nd time in April." I told them that Dr.Incavo did not want to help me so I found someone who would!!"

ROM is slowly going away. After my April surgery I got to 124 and now I am 100 - 105. As far as growing scar tissue with previous surgeries. My first C-section I grew a LOT of scar tissue that caused me pain which was surgically removed in my 2nd C-section. They told me at that time that they removed A LOT of scar tissue. It didn't get that bad after the 2nd C-section. Then TKR - massive scar tissue grown, Arthoscopy for scar tissue, then TOTAL Knee Revison - massive scar tissue grown again, Arthoscopy once again for scar tissue and now it is aggressively taking over again.

Maybe I'll have some answers on October 5 or with my luck...maybe not!
 
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@RunA42K
Bonnie,

I am praying for the yes you will have answers! To think what you have already been through is a nightmare and you work so hard. That is a lot of out of pocket money, but if it gives you answers it will be worth it.
 
Fingers, toes and everything else crossed for you, Bonnie. I hope they do find some problem that they can do something about, to help you.
 
Regretful said:
A DIAGNOSIS OF ARTHROFIBROSIS IS THEREFORE GENERALLY A RED HERRING. IF YOUR BODY HASN'T SPONTANEOUSLY DEVELOPED IT FOLLOWING OTHER SURGERIES, WHY SHOULD IT DO SO AFTER A TKR?

A REVISION SURGERY SHOULD BE UNDERTAKEN TO CORRECT SUCH A PROBLEM, WHETHER PARTIAL OR FULL.
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@Regretful you will see that I have edited your post as using upper case all the time is considered to be shouting which is not good netiquette!

Regretful said:
My current surgeon explained to me that the tight feeling, the banging (painful) prosthesis elements, the adhesions (not scar tissue) are a result of an improperly installed prosthesis, the wrong size or wrongly positioned artificial knee joint(s).
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I'm afraid I must disagree with this notion. I have never seen anything anywhere supporting it and quite honestly, I cannot perceive of any situation where this would be true. It's just illogical.
 
I was shocked today that the doctors PA called me at work, I was not expecting a call. Most doctors I have to chase down. They just told me that all my results were in and asked could I come in on Friday. I told them I already had an appointment for Monday that I'd just wait till then. But then I had to ask...if any of my test results jumped out at them. That's when the PA told me that I was highly reactive to nickel, (my Stryker Triathlon Revision knee is made of predominantly nickel). Relieved that I wanted some kind of answer but after I got off the phone my heart sunk. Started to cry... At the thought of getting another knee again. Two people I work with, Lee and Kate gave me a big hug. I'll go on Monday October 5th and get all the details and plan of action.
 
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I'm so sorry that you have had to go through all you have in the past and now this.
 
Bonnie, we're with you on this, so please take strength from those of us here who know all you've been through and have been praying that someone would find the real answer. I so hope this is it, even if it means another knee. Please continue to let us know how things go. We truly care about you and want to see this be the breakthrough you've been waiting for. ((((HUGS))))
 
Hugs for you, ((((((((((Bonnie!)))))))))) :friends:
We'll all be thinking of you on Monday.
 
@Bonnie, :console2:another big hug for you! One of these days we may cross paths at the hospital. It seems we miss by a few days. Perhaps this is finally an answer. Do you know the nickel content of your original implant?

Although possibly another surgery, maybe your recovery will be easier without the nickel. I'll be looking forward to your post following your appointment.
 
My mother had a TKR and developed lots of scar tissue. She really never regained much use of her knee and is in constant pain and can't bend the knee at all. To make a long story short, I have been researching Dr. Finn's surgery including preoperative low level radiation and his mechanical knee. The problem is my mother lives in PA. I believe I read somewhere in this thread that someone knew a surgeon in PA that was using low level radiation pre-surgery to stop the growth of scar tissue. Does anyone know the name of that doctor or the hospital? I can't find it again anywhere. Thank you, I'm with Bonnie-never give up!
 
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