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Mayo Clinic

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susan1228

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Hi everyone,
I just wanted to let everyone know I finally have an appointment at the Mayo Clinic this monday Sept. 21 and 22. I am very excited and pray they can find and fix whatever is causing this severe pain in my knees and legs. I just wanted to give you that update. Thanks Susan
 
That's wonderful, Susan. I'm delighted for you!
 
Great news, Susan. You'll have to be sure and post after you have the appointment. We'll want an update. I'll keep you in my prayers that you will get the help you need at Mayo....excellent hospital!
 
Well I went to the Mayo clinic and saw three doctors. The first doctor in the group could find nothing wrong with the implants and no idea what is causing stiffness and pain. The main doctor came in after the first and said 80% of Knee replacements are happy 10% are somewhat happy and the other 10% have unexplained pain and that is where I am. He said he saw a line under the patella on both knees and it could be they are loose but he has seen hundreds look just like mine and they have no pain. His suggestions were he could go in and open me up one knee at a time much bigger incision and replace the bottom plate and there is a 50 50 chance it will help and 50 50 it wont. Have the chance of infection etc. or we can wait 8 months and re xray and see if they look the same. If they are in fact loose it would show a difference in that time.
Needless to say i am bummed. He said he would not suggest Manipulation because scar tissue would just come back. Now my surgeon wanted to do manipulation. It seems they dont realize I cant take this pain or they dont care. But to let him open me up and do this all again seems dumb when it is just his guess and he really didnt think they were loose. These guys are suppose to be experts on this but were no help to me. Taking advil is what he suggested I keep doing and I do and it doesnt help. Very discouraged now and so was my husband. We had hoped to get some good help.Two days and this is all they had to offer.
 
Hi there im so sorry maybe wait a lil longer not 8 mths and see how you feel...OR ITS TIME TO GET another opinion but not one from that group completely outside of the group.........just 2 suggestions but if it hurts you cant wait that long and it seem to me they are on the fence...........Get another opinion good luck and please let us know............please dont sit in pain........And when you are the 20 per with a problem......oh well i feel your on your own....just saying and its shouldn't be that
way.......maybe an outside opinion might shed dome light on something completely diff and easier you wont know till you try............)hugs
 
Very disappointing, Susan. I would feel just the way you do. I think you really only have two options....wait it out a little or get another opinion. I would not have what seems to be exploratory surgery. You need to know for sure that you require someone going back in there. Can you try another practice? I know Mayo is supposed to be top notch for everything, but people are human and maybe another revision specialist would be able to tell you more.
 
Susan,
I am going to say listen to Max!!! Find a revision spec. And go see him or her!
You have only seen OS's so far who think maybe it is loose wait and see?? Your in pain you do not need to wait and see. Get a REVISION Doctor Please
 
Mayo Clinic was a group outside of my surgeon. My surgeon is in Ohio and I went to Mayo Clinic for a second opinion. I was told they are the best from lots of people so I had hoped to get answers from them. My surgeon as well as them say 10 percent of people with knee replacements have unexplained pain. Now you say see a revision specialist, How do I find one? According to the top notch xrays I had it looks like my implants are perfect. Mayo doctor was against manipulation because he says scar tissue will come back. I live in Ohio but am here in Minnesota for a couple years as my husband is a contractor and is working here. We go back and forth. on weekends. Any help you can provide me would be grately appreciated. I am trying to lose weight and have started working out again every other day. I keep my husband up all night although he never complains. I toss and turn with the pain. It is very discouraging...
 
Oh sorry Im missed that as well........but I do disagree about the scare tissue coming back I HAD a MUA and I worked at it and mine is fine never had anymore scar tissue problems so if thats what your looking at I would do it........I went from 68 to 109 after my MUA and its been fine ever since...............If thats what you need then do it......Please let us know what you have decided...........) good luck yo you...........
 
Susan

It is really frustrating when you can't get a straight answer. Mayo is good in many things but maybe knees are not there thing. The only place I can think of is the Hospital For Special Sugery in New york City as all they do it musculoskeletal disease and have been known for many innovations (broken link removed: https://www.hss.org). I bet they may be willing to evaluate the records and x-rays and talk to you on the phone before having to travel.

Just a thought

Simon
 
Well, that surgeon was correct, there is a percentage of people in any joint replacement field that suffer unexplained pain but I still think you need to get yet another opinion.

To find a revision chap, go to the find a surgeon feature on the BoneSmart main website and then start ringing around. Speak to the surgeon's secretary or nurse and ask them if he makes a special practice of dealing with knee revisions. Then, if you like what you hear, make an appointment and see what he has to say. You may even need to see two or three before you find one that is prepared to state an honest opinion and do something about it.
 
I think Jo's advice on checking out the doctors available here and making phone calls is exellent. So is finding a revision expert at Hospital for Special Surgery in NYC. My surgeon is a revision expert (he only does knee and hip replacements) but he is in nothern new Jersey. You can try calling his office Dr. Mark Hartzband 201 291 4040.
You can use my name - Stephani Shelton ; my TKR was last January with him.
You wrote about trying to lose weight and going back to the gym. I don't know how much weight you need to lose but that is a major problem for some people and certainly should be of some help IF the knee implants aren't loose or otherwise messed up. Also really working very hard to build up your leg muscles -- with a personal trainer if you can afford one. even once a week with a trainer and the other 2 times a week on your own will help as the trainer will push you beyond what you'll do on your own. the Mayo Clinic is a great medical name but I have not necessarily heard about it for great orthopedic work. The doctors you saw may well be excellent but there are hospitals like HSS in NYC that do only orthopedic work and doctors who do only knee and hip replacements and they are the places to go if you can.
Good luck and keep up us on what you're doing and what you find out....
 
Susan I want to tell you not to give up. I have had medical issues and been sent to an expert at Emory when I lived in Atlanta. He was not the answer, far from it actually.
I did not give up and eventualy found a wonderful doc in california when I lived in Georgia. I am being treated properly and now that i moved back to ca i volunteer at his eve. clinic.
My primary care doc just yesterday told me to continue to be an adovocate for myself, I needed a pep talk.

I agree that Mayo may have a good name, but not necessarily for joint replacement.
I would seek out a revision specialist and as someone suggested if you can get imaging to them, maybe a phone consult could be the first step.

you can do this, you do not need to live in so much pain.
judy
 
No I didnt I just couldnt move my knee I could only bend 68 degress then got a manipulation and its been ok ever since......but I didnt have pain..........I hope someone lives around or near there that can help........Dont give up ...........k
 
Susan, who was your original surgeon and what practice was he with? I'll try and do a little research for you.
 
HI Jamie thank you so much. My original surgeon is Dr. Frank Myers and he is with Lake Hospital Systems in Concord Township Ohio. He is the top doctor there for knees and hips. He wants to try Manipulation so I wanted to get a second opinion since I had heard pros and cons on it. That is why I went to Mayo and the doctor there didnt reccommend it. It seems to me manipulation would be better to try first than a major surgery although he would operate on one knee at a time. But still surgery when everything looks good??? Anyway thank you so much. I am currently in Saint Cloud Minnesota temporarily for two years or so while my husband works we do go back and forth on some weekends to Ohio Our home. If you need any other information just let me know. Also dont know if it matters but I have Zimmer Knees.
 
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