BTKR now 18 months and still in pain

[susan1228]

I had total knee replacements in February 2008 and I have so much pain in both knees too. I complained to the surgeon and he did xrays and said the replacements are fine and wants to do manipulations on both knees.

I have read pros and cons on this and dont know what to do either. I see on here everyone is saying see a revision specialist. I have never heard of that and wonder how you would look one up.

I can go up the stairs and down but it is very painful and doesnt look normal. If I walk too much like yesterday I went shopping and man I am in so much pain. I dont use a cane or anything but the pain is in the front of the knees as well as in the crease behind the knees and radiates down the legs. So far I have only seen about one other person besides that has so much pain.

My range of motion was about 105 give or take in both knees. I did therapy until My Mom died this february . So I had a year of it. I sure hope someone on here can lead us in the right direction. I live now in north eastern Ohio and I love my surgeon as far as that goes. He does care just doesnt seem to have the answers. I too would greatly appreciate any help anyone can give. Thanks Susan

 

[loggon]

Re: Almost 2 years after surgeries

Susan
Even though you love your surgeon, it is time to see another doctor or two.
A revision specialist is a surgeon, that fixes the implant after something has happen to it or if something is wrong.
Having so much pain as far out as you are does not sound right.

You just have to start searching for a specialist. Look on the internet for a surgeon that does revisions. It may not be called a revision ( I think that is a term that came from here) But it is one that knows how to repair the knee after something has gone wrong with an implant. Ask your doctor he knows someone else.
Jo and Jamie will be on soon and they can help you. Why not start your own thread, that way you can get your questions answered

 

[Jamie]

Re: Almost 2 years after surgeries

Pat is correct. You would be looking for a joint replacement surgeon who handles issues that arise once a replacement has been done and there are problems afterwards. As Jo mentioned to Lee...it is possible that the pain you are experiencing is not directly related to your knee replacement. But you do need to get to the bottom of it so whatever it is can be treated.

As for these specialists, you search out clinics in your area, go to their website and read the bio of each surgeon. Usually the bios will say that the person specializes in revisions or corrective surgery. If you need a place to start in your search, BoneSmart has (broken link removed: https://bonesmart.org/clinic_lookup.php for you.

Do start a thread of your own too so that you can receive direct comments from others here. Your situation is similar to Lee's, but there are bound to be some differences too.

 

[susan1228]

Re: Almost 2 years after surgeries

Sorry I didnt know I needed to start a thread of my own. I thought just commenting in here would be what to do. I have written about my problem before but no one seemed to know. By loving my surgeon I didnt mean I Wouldnt get other opinions. He is good and he did do exrays and said the implants were fine and suggested manipulations. I plan on trying to find out if there is another doctor that specializes in this. I am currently in Saint Cloud Minnesota as my husband is doing contract work here so if anyone knows of someone in this area please let me know. Thanks Susan

 

[Josephine]

Re: Almost 2 years after surgeries

Honey, it's not that you need to, we just try to keep the 'conversations' seperate so you get replies of your own and don't derail someone else's thread, that's all. Otherwise your post ends up getting lost and no-one answers to it.

 

[Josephine]

So let me talk about your situation ... there's some questions I need to ask first.

~ have you always been in this much pain, I mean ever since the surgery?
~ were you in a lot of pain before the op?
~ were your knees very bad, bow legged, knocked kneed, for instance?
~ what's your age?
~ did you have both knees done at once?

See, the issue here is that if this is a problem with your implants and you need it done again, I would strongly recommend you not let the same surgeon do it again. You can read this post How to choose a surgeon and a prosthesis which will give you some idea how crucial it is to choose a surgeon who has lots and lots of experience.

A revision surgeon (a term we use on here!) is someone who makes a speciality of fixing problems that other surgeons have created. Even if you only go to him for a second opinion, you can therefore trust him to be absolutely honest and straight forward. Sometimes when a surgeon xrays a knee and says it's perfect even though you're still in pain, it could be an indication that he's not very experienced. I'm not saying he is inexperienced - just that it could be. So get yourself a second opinion.

The way to find such a surgeon is use the search feature that Jamie has in her post, choose some names/places that are convenient to you and ring them. As if that surgeon does revision knees and does he make a speciality of it. If the answer is yes, then go see him. Ask him the questions in the post I linked in this post and follow the lead in that post as well.

In other words, you need to do some research!

 

[susan1228]

thank you Josephine. I just took Jamie's advice and went to the website she gave and thank God and her I found the Mayo Clinic and it is here where I am now. As I explained i live in Ohio but am here in Minnesota for two years as my husband is doing contract work. I didnt realize the Mayo Clinic was here. I have already called them and they took all the information and a Doctor will review my information and I should hear from them with an appointment in 7 to 10 business days. I called my surgeon too and talked to his medical assistant and explained what I am doing. She did say there area a very few people who do experience pain for more than a year but it is unusual and thinks I am doing the right thing also. At least I will have another opinion. As I understand it the Mayo Clinic is the best for this so I am very fortunate to get this opportunity and not have to travel far.

As for the threads I guess I am not too good at this stuff. I dont really understand how to start my own unless by doing this I have done it.

I am very excited now and cant wait to be able to come back and tell you what answers I have found. Hopefully it will be a good and easy solution. I just want to be mostly pain free, I can deal with some limitations but would find it very hard to go on like this. I will do what it takes.

One of the big problems I have is pain medication. I am allergic to Codeine so most of them make me extremely sick or I get very bad migraines from them. The last pain medication they used for me was dilaudid 2 mg and it was good for awhile then sickness and migraines. Even when I had the surgery I had different stuff like a pain patch along with something else and it got so bad they ended up doing a brain scan they thought I had a brain bleed. That scared me to death and I was so spaced out and sick I thought I was dying. Imagine going for this surgery and then hearing them think ;you have a brain bleed. I am a redhead so I guess we can blame it on that.....

Ok enough I dont want to bore you but I am interested in anything you can help me with. Oh yes I had no previous issues with knees except they were bone on bone and they said from arthritis. I am 53 years old. This was suppose to take care of it. I had therapy up until my Mom died february 15th of this year. Yes I had both knees done at once. I was in hospital for ten days extensive therapy in there too. yes I was in a lot of pain before too.

 

[Jamie]

Good for you, Susan!!! I'm happy to hear that things went so well with the Mayo Clinic. It's a fabulous facility, so you should be able to get some information as to what's going on. Please let us know how things go. This is YOUR thread now and you can post away on it or start a new one if you like. Here is a link to the instructions on starting a new thread.

 

[Texas]

Hi Susan I came in late So sorry. You were given great advice as usual. I am so glad you made the call. And hope he will take it and get you straight. That is way to long to be hurting and I m sure you didnt go thru all this to get these kinds of results....You deserve better...Please keep us posted. I am really happy for you. And hope there is more happiness to come. Oh And Welcome..!!!.

 

[aussie]

Best wishes Susan!!!!!!

 

[Jayne]

Susan, I had both knees done almost 8 weeks ago. I too worry already if I'll always have pain. Now my surgeon does not believe in intensive therapy until after 3 months and then he wants you to tone your body. Please know my thoughts are with you because of the sadness you have had to deal with and your knees. You are young. I'm 59 years old and everyone said how young I was to get this done. But like you I started to worry if I will have pain forever. I guess I shouldn't until a year is over. Are you on pain meds? If so what may I ask?
Jayne

 

[susan1228]

Jayne, Thank you so much for your kind words. I am not on any pain meds now because I am allergic to codeine and have very bad reaction to narcotics. The last pain med I was on was dilaudid 2mg and it was good for awhile then I started getting migraines and sick from it. I will hopefully find out more when I get the appointment at the Mayo Clinic. I will be sure and let you all know. Thanks Susan

 

[susan1228]

Jayne I forgot to say to you also how surprised I am that your doctor says no intense theraphy for three months. I started right away in the hospital. Then after the ten days in there I had home theraphy and then when that was done right to out patient theraphy. All the doctors i know of in Ohio do it that way too. Susan

 

[susan1228]

Jamie thanks for your help. I will be sure and let you know as soon as I go to the Mayo Clinic. Susan

 

[Texas]

We will all be pulling for you Susan, Good Luck....

 

[Judles]

:pnc::Feel better,Susan! Hope you get the help you deserve! Good luck and keep us posted!

 

[loggon]

Susan

I do hope you get help. You should not be in pain for so long