Swelling and stiffness, 3 years after total knee replacement

Posted by bengalady @bengalady, Oct 9, 2019

I had knee replacement 3 years ago. It is worse than previous knee pain, and getting worse as more time goes by. My surgeon (in another state) says everything normal based on X-ray. Ortho doc here says the same, and said I’m having pain and he referred me to pain clinic for possible nerve block. I want to know WHY am I having pain, although I didn’t call it pain. ROM is 100. They can’t see everything on X-ray. I want an MRI. Want to go for second opinion. Should I tell new doc I’m there for second opinion, I don’t think that’s necessary......I think that would cause some bias, ie they would just say same thing.
Has this happened to anyone ? Thoughts ?
TIA

Interested in more discussions like this? Go to the Joint Replacements Support Group.

@contentandwell

@gardeningjunkie Many people have great success with stem cells. It is not 100% successful though and very few insurances cover it, although I have no idea if Medicare does. If you are in pain though it’s worth a try if you can afford it.

I had a procedure done before I was on Medicare that my regular (BC-BS) would not pay for without a pre-authorization. Then they still rejected it and I had to fight for them to pay. The funny thing was that it is covered by Medicare, maybe because it was a kyphoplasty to repair a broken vertebra and that is more common in people who have osteoporosis, which I did not, at that time so even though regular insurance does not cover it maybe if your doctor will plead your case it will get covered.
JK

Jump to this post

It's interesting what Medicare will cover. I had to sign a form specially informing me Medicare would not cover it, but with my history what choice did I have. I figured I would have nothing to loose by appealing and the very least I would have the satisfaction of at least getting them to read the stack of documents I sent. I sent off pages of documentation which included my allergy history and documentation of previous allergy tests (covered by Medicare) and finally got my doctor to write a "letter of medical necessity" based on my allergy history. This took some doing as his office told me Medicare would not cover this test so it was a waste of time. In truth I am shocked that Medicare will not cover this test because allergic rejection is not rare. I am beginning to wonder if the surgeon doesn't want tests like this done as it would discourage surgeries. This entire gorgeous brand new hospital w is designed inside and out like a 4 star hotel is for orthopedics only and has multiple surgeons; joint replacements are taking 3 months to book. Lack of business is not an issue. This is not a major metropolitan area- it's in the city of Ozark on the outskirts of Springfield, MO a mid-size city. In the appeal I included copies of the blood allergy test showing my positives and explained that because of results I could not be a candidate for a knee replacement, plus included documentation of the alternative ceramic implant which many are rejecting and copies of the class action lawsuit. In a personal letter of appeal I also wrote up how much money Medicare would be saving because I would not be having a knee replacement plus if I had not had the test and gone ahead with the surgery the expense of future surgeries would be massive. I am not sure they cared about my pain or suffering, but I do because after rejection and removal I would be left completely crippled without a knee joint. I sent all this off 3 weeks ago and checked that it was received. As expensive as this surgery is it seems this test should be mandatory.

REPLY
@gardeningjunkie

It's interesting what Medicare will cover. I had to sign a form specially informing me Medicare would not cover it, but with my history what choice did I have. I figured I would have nothing to loose by appealing and the very least I would have the satisfaction of at least getting them to read the stack of documents I sent. I sent off pages of documentation which included my allergy history and documentation of previous allergy tests (covered by Medicare) and finally got my doctor to write a "letter of medical necessity" based on my allergy history. This took some doing as his office told me Medicare would not cover this test so it was a waste of time. In truth I am shocked that Medicare will not cover this test because allergic rejection is not rare. I am beginning to wonder if the surgeon doesn't want tests like this done as it would discourage surgeries. This entire gorgeous brand new hospital w is designed inside and out like a 4 star hotel is for orthopedics only and has multiple surgeons; joint replacements are taking 3 months to book. Lack of business is not an issue. This is not a major metropolitan area- it's in the city of Ozark on the outskirts of Springfield, MO a mid-size city. In the appeal I included copies of the blood allergy test showing my positives and explained that because of results I could not be a candidate for a knee replacement, plus included documentation of the alternative ceramic implant which many are rejecting and copies of the class action lawsuit. In a personal letter of appeal I also wrote up how much money Medicare would be saving because I would not be having a knee replacement plus if I had not had the test and gone ahead with the surgery the expense of future surgeries would be massive. I am not sure they cared about my pain or suffering, but I do because after rejection and removal I would be left completely crippled without a knee joint. I sent all this off 3 weeks ago and checked that it was received. As expensive as this surgery is it seems this test should be mandatory.

Jump to this post

@gardeningjunkie I will be very interested in hearing the results of all of your efforts. This was done to try to get them to pay for stem cells or just the metal testing? If not for stem cells I would think if a person shows definite sensitivity to the metals involved that it would be to their advantage to pay for stem cells too. Maybe they will eventually if enough people have it done and it is successful in the majority of the time, which I think it is now. I think it is still considered to be almost experimental.
JK

REPLY
@gardeningjunkie

Could you be allergic to the implant? If allergic I imagine there would be inflamation in the area and do not know if that would show up in an xray.
Why I can't have a knee replacement- My ortho was ready to proceed with my knee replacement this spring but I insisted upon metal allergy and bone cement allergy testing first. He told me he hadn't had issues with rejection, but I am an allergic person and would rather proceed cautiously. I have Allergic Contact Dermatitis, ACD, and Patch Testing showed about 7 allergies out of 80 sites. I have multiple adhesive allergies but was never tested for the adhesive in bone cement. In my Patch Test Panel's I never have the metal panels run. I have known I react to nickle all my life. He ordered a blood tes stating this was more accurate than the Patch Test and I was told I must pay $600 up front as Medicare doesn't pay for this test. My blood test came back showing allergies to 5 metals, the bone cement was safe. He said there would not be one metal implant I could use; although not allergic to titanium, even titanium has traces of other metals I would react to. No problem as he could put in a ceramic coated implant so no metal would contact me and was ready to proceed. I did the homework on the "Gold" implant (called this as the ceramic is gold in color). Last year a class action lawsuit was filed as many have learned the bone cement won't adhere to the implant, moisture builds up between the ceramic coating and bone cement and the implant comes loose from the bone.I figure I am better off accepting the limitations I have now rather than risk rejection. I have a file with the exact name of this implant if interested I ill look it up.
I am appealing to Medicare to reimburse me for this blood test expense based upon my doctors "letter of necessity" because of my allergic history. Yet even if not reimbursed I am grateful for this test..

Jump to this post

Thank you for all this information. I don’t know that I’m allergic to any metals, just that I have food sensitivities galore, and not much I can eat. So, what will you do ? I haven’t been able to kneel for many many years now, both knees with and without implant. Ortho said I’m bone on bone, so I need replacement on my other knee now, and naturally I’m scared. I had a couple of injections which helped. Apparently not suppose to do long term. I went to a seminar, and they said if one is bone on bone, stem cell would not work. On research, I did find out that my knee brand was recalled. The Dupuy.

REPLY
@gardeningjunkie

Thank you. I have never heard of this treatment and it many be my only option because of allergies to metals. I can walk level without pain all day, but like you knelling is an issue.Stairs are slow but manageable. I am an active gardener and I must use a kneeling bench which I carry with me so I can get off the ground. I even have a kneeling bench for cleaning baseboards or other housework. I can use my arms to push me up. Getting out of a bath is painful and almost impossible now, but I love showers so no big deal. I feared I had no options if I deteriorate further; I'm turning 71 soon and hope to keep these knees going for another decade at least. I will look up the stem cell and PRP. Once my ortho surgeon learned of my metal allergies and I rejected the idea of the ceramic implant he recommended based up class action lawsuits because of rejection he gave me no other option.

Jump to this post

if i would advise people on prp i would say try PRP first and see hw you react. It took 3 weeks for the pain to go away and the swelling dropped. It costs around $1000. It can last anywhere from 6 months to 2 years. I look at it as money well spent compared to a TKR. If it works for you than talk to medical professionals who understand stem cells. I used drs affiiated with Regenexx. Check their web site. Do not use drs who get their stem cells from a box.

REPLY
@contentandwell

@gardeningjunkie I will be very interested in hearing the results of all of your efforts. This was done to try to get them to pay for stem cells or just the metal testing? If not for stem cells I would think if a person shows definite sensitivity to the metals involved that it would be to their advantage to pay for stem cells too. Maybe they will eventually if enough people have it done and it is successful in the majority of the time, which I think it is now. I think it is still considered to be almost experimental.
JK

Jump to this post

I will let you know the results of my appeal which is just for the blood test for the components- bone cement and metals. I have not looked into stem cell treatment.

REPLY
@bengalady

Thank you for all this information. I don’t know that I’m allergic to any metals, just that I have food sensitivities galore, and not much I can eat. So, what will you do ? I haven’t been able to kneel for many many years now, both knees with and without implant. Ortho said I’m bone on bone, so I need replacement on my other knee now, and naturally I’m scared. I had a couple of injections which helped. Apparently not suppose to do long term. I went to a seminar, and they said if one is bone on bone, stem cell would not work. On research, I did find out that my knee brand was recalled. The Dupuy.

Jump to this post

My issue is also bone on bone, but not as advanced as yours. With technique, even though painful I can still get up and do so throughout the day. What were your injections? Over the years I have had steroids and the equivalent of rooster comb injections.Maybe they helped, certainly nothing dramatic. Another good morsel from you-"if bone on bone, stem cell would not work". I am still curious and will look up the Dupuy.

REPLY

i am bone on bone, did the stem cells but found PRP to be the most effective. I to did the rooster comb shot.

REPLY
@bengalady

Thank you for all this information. I don’t know that I’m allergic to any metals, just that I have food sensitivities galore, and not much I can eat. So, what will you do ? I haven’t been able to kneel for many many years now, both knees with and without implant. Ortho said I’m bone on bone, so I need replacement on my other knee now, and naturally I’m scared. I had a couple of injections which helped. Apparently not suppose to do long term. I went to a seminar, and they said if one is bone on bone, stem cell would not work. On research, I did find out that my knee brand was recalled. The Dupuy.

Jump to this post

Have you had testing for food sensitivities? I used the Groupon coupon for the food sensitives test in which you send off a few hair samples for analysis. "Check My Body Health", based in England. They say it is not a dna test, but not sure what they do to test the hair. Takes 3 weeks for results. Some of the foods tested are strictly English, most Americans have never eaten Goose or Spelt. I got the middle priced test for only $35.00 which tested hundreds of foods. Truly more information than I wanted to know as now I have dozens more foods to avoid. Some I could guess for years, as I would feel icky/a bit queasy after I ate or had gas and bloating, for example more than a few ounces of milk gave me symptoms and the same with cashews in which I feel like I ate junk food afterward and yes dairy and cashews were identified as sensitivities, but plenty of others showed up which never occurred to me. For example why should I avoid turkey and lamb, but chicken and beef are safe? This test tests for at least 5 different types of apples and showed I was sensitive to all of them. I now only eat a few pieces of fruit a week because of the anti-inflammation diet I am on which avoids sugar, yes even natural, but I have never felt bad after eating an apple. I have heard apples, unlike pears contain a certain ingredient which many are sensitive to. So now I buy pears. Pears are the first fruit recommended for babies and now as I senior I feel I am having to eat baby food again. For example white rice is safe but results show brown rice isn't. I feel fine eating turkey or lamb or apples, yet am paying attention now to any sensitivity which showed up as severe, as the sensitivity is on a rating scale. This test is for food sensitivities, not allergies. One interesting confirmation of the validity of this test was the part where they check for sensitivities other than foods, like bee or wasp stings. I do know I have a bee sting allergy, no testing needed as I have had reactions. This test showed I am sensitive to bee sting, but not wasp. When filling out the questionnaire I made of point of not giving them any clues as to my history.

REPLY
@bengalady

Thank you for all this information. I don’t know that I’m allergic to any metals, just that I have food sensitivities galore, and not much I can eat. So, what will you do ? I haven’t been able to kneel for many many years now, both knees with and without implant. Ortho said I’m bone on bone, so I need replacement on my other knee now, and naturally I’m scared. I had a couple of injections which helped. Apparently not suppose to do long term. I went to a seminar, and they said if one is bone on bone, stem cell would not work. On research, I did find out that my knee brand was recalled. The Dupuy.

Jump to this post

The only thing I can think of when the day comes and I can't get back up is to stop kneeling! Get cleaning and gardening help. I used to laugh at the "Help I've Fallen and I can't get up" Life Alert ads; if one is living alone that would be an option if one falls. Aging does teach us humility and sympathy for others. Right now I can manage and am married, but like you the fear of loosing my independence can cross my mind. Yet I have learned not to worry about something I can't control. I am almost 71, have survived leukemia- it's gone, manage another autoimmune disease and figure I will simply handle that issue when the time comes.

REPLY
@gardeningjunkie

Have you had testing for food sensitivities? I used the Groupon coupon for the food sensitives test in which you send off a few hair samples for analysis. "Check My Body Health", based in England. They say it is not a dna test, but not sure what they do to test the hair. Takes 3 weeks for results. Some of the foods tested are strictly English, most Americans have never eaten Goose or Spelt. I got the middle priced test for only $35.00 which tested hundreds of foods. Truly more information than I wanted to know as now I have dozens more foods to avoid. Some I could guess for years, as I would feel icky/a bit queasy after I ate or had gas and bloating, for example more than a few ounces of milk gave me symptoms and the same with cashews in which I feel like I ate junk food afterward and yes dairy and cashews were identified as sensitivities, but plenty of others showed up which never occurred to me. For example why should I avoid turkey and lamb, but chicken and beef are safe? This test tests for at least 5 different types of apples and showed I was sensitive to all of them. I now only eat a few pieces of fruit a week because of the anti-inflammation diet I am on which avoids sugar, yes even natural, but I have never felt bad after eating an apple. I have heard apples, unlike pears contain a certain ingredient which many are sensitive to. So now I buy pears. Pears are the first fruit recommended for babies and now as I senior I feel I am having to eat baby food again. For example white rice is safe but results show brown rice isn't. I feel fine eating turkey or lamb or apples, yet am paying attention now to any sensitivity which showed up as severe, as the sensitivity is on a rating scale. This test is for food sensitivities, not allergies. One interesting confirmation of the validity of this test was the part where they check for sensitivities other than foods, like bee or wasp stings. I do know I have a bee sting allergy, no testing needed as I have had reactions. This test showed I am sensitive to bee sting, but not wasp. When filling out the questionnaire I made of point of not giving them any clues as to my history.

Jump to this post

I can look into that. I've been keeping a food diary, and symptoms. Doc wants me on Keto Diet, Low Fodmap, gluten free, no dairy......well, not much I can eat.

REPLY
Please sign in or register to post a reply.