TKR Turtle still hoping to cross the finish line

[Josephine]

Mary, I'm so sorry I've only just seen this.

It's more than likely (which you've probably already figured out) that this infection was planted when you had the arthroscopic lysis. Since that was a year ago, the timing would be about right for a low grade infection. But it's possible a washout will do. They usually change the spacer then because it has to be remove it to wash underneath and then, for technical reasons, it's necessary to use a new one. This is followed by intensive abx, usually via a PICC line. If that doesn't work, then a two stage revision is the next step.

It's a long old haul and you can get some really good info about it by reading Sonja's thread. I'm not sure where you live but have you considered going to broken link removed: https://dfwsarcoma.com/about/dr-maale.php in Dallas? He seems to be the 'go-to' man for infected knees and has dealt with Sonja for some time. Since your situation is complicated by RA, I would certainly want to go to a acknowledge expert in treating this very condition. There are plenty of surgeons out there who will 'give it a go' but not have any real expertise. Please don't run the risk of that.

 

[Dhare63]

Re: problems 16 months post-TKR

Wow Mary, you have had a real rough journey. I have nothing to add except hopes and prayers are headed your way. I will be following your progress and hope for the best.

Best, Dawn

 

[maryo52]

From what I've read, they do the washout for acute infections and the two-stage of chronic. But whichever, I have to sit down with an experienced revisionist to go over the choices.

For some reason someone got the mistaken idea I have RA. I don't!!

But would be interested if someone could describe what the washout entails. Will keep Dr. Maale in the mix, at least mentally, as I explore options.

 

[Josephine]

Re: problems 16 months post-TKR

I replied on your old thread, Mary. sorry - its almost 3am here and I can't go look for it!

 

[Jamie]

Mary, I agree that it's best to act as quickly as possible to find a good revision specialist. Please do let us know how things are going and the results of your culture!

I have merged your new thread with your old one. You know we really do like to keep updates in one spot. If you find that your post drops back a page or so, don't worry....we'll get to it. BoneSmart has grown quite a lot and we have more people than ever needing help. We've brought more mods on to assist in making sure people are still receiving comments as quickly as possible. If your post is something you really want Jo (or anyone else) to respond to....use the "tag" feature to alert us. We'll see that right away. You can tag multiple people if you really need a response quickly!

 

[maryo52]

Thanks everyone and especially our moderators who give so much of themselves to help us.

This year I was able to go on the medical mission to Ecuador which I had to cancel on in 2010 because of my poor recovery from TKA. This year every challenge was, to me, a victory. I worked 4.5 12-hour days doing pre-op and post-op. I must admit, the last 2-3 hours my brain was moosh. But I made it a point to celebrate my perseverance over knee issues.

So I have to admit I'm pretty down in the dumps now. I can deal with a lot, but waking up scared is not my preferred approach to life.

Today perhaps I'll focus on simply drawing up a list of orthos far and near in preparation for my culture results. I guess my basic philosophy is to accept that I have an infection, and if it turns out I don't, then it'll be party time!

 

[maryo52]

How does one search for orthopedic surgeons by area of specialization?

I'd like to start compiling a list of specialists for prosthetic knee infection. If it means a two-stage revision, I'd consider temporarily relocating.

 

[Josephine]

I would suggest this:
1. make a list of places you would consider purely from a geographic or convenience point of view
2. phone said clinic and ask for the names of the hip surgeons and their office phone numbers
3. research their bios on line and refine your search by looking for surgeons who declare revision hip arthroplasty as a primary interest, iow, not down the bottom of a long list of other interests
4. phone the office and ask to speak to his nurse or PA. Ask them if he specialises in revision for infection and if so, how many does he do per year. If they hem and haw, then you'll know he isn't. Same if they say he does do them now and again. That's not who you want. If the surgeon is a revision/infection specialist, his staff will know he is and say so right out.
5. ask about appointments, how long and will he look at your case notes and xrays first to save you a trip. Most will because they are accustomed to seeing patients from out of town - another way you'll know he's the right kind of chap
6. meet the surgeon and decide if he's someone you can work with, who will be positive and knowledgeable about the situation

 

[karmigirl]

Mary,

I don't know if this allowed on the forum but Audrey is also from Maine and if I recall correctly she went through a few Drs. herself. Maybe you could talk to her about some of the Drs. she know about.

 

[maryo52]

Yeah I actually know the name of Audrey's ortho. That practice is a consideration.

But this evening I got on the U.S. News & World Report website. They have rated doctors and hospitals by specialty. I'm thinking along the lines of going for a top rated hospital and doctor. I have too much at stake. A friend had shoulder replacement done at the Hospital for Special Surgery in NYC. They are the #1 ortho hospital in the country. It's just a 1-hour flight from here. I cannot have another crappy year.

Both HSS and Mass. General in Boston allow patients to make appointments without a referral. When my cultures come back and if they're positive, than that's enough evidence to get in.

 

[Jamie]

I did some research a few months back for one of our BoneSmarties and I was really impressed with the program at Mass General. It might be worth an appointment to see what you think.

 

[sunflower]

Mary, wishing you the best in your choice of hospital care and hopefully you'll get some answers soon from the specialist.

 

[megbabyrn]

Mary,Good luck in your search, then you can start to feel better. Take care.

 

[Josephine]

Sounds like a plan

 

[maryo52]

Tomorrow possibly, Tuesday for sure, I'll have results of my knee cultures.

Received an order for another lab test, HLA B27, which is linked to reactive arthritis. I guess it's this or infection that's got my knee full of blood-tinged fluid. Waiting is no fun! Sure would love to have this knee working as it should. With the effusion, I still have to lift myself up out of chairs, and ease my way down into them. Steps and hill climbing is a chore because I'm working against that effusion. Plus my quad on that side is atrophied despite all my bike riding.

 

[sunflower]

If it's reactive arthritis, how does it affect an implant? Is it more difficult to treat than an infection? Can the surgeon go in and do spring cleaning and put in a nice, new, shiny implant? :cool:

 

[maryo52]

I am so so relieved to learn that my synovial fluid cultures came back NEGATIVE. I spent the first couple of days of my week-long wait for test results anticipating the worst. The great part about taking that approach is that any other news is great.

Has anyone ever heard of HLA B27? It's s human leukocyte antigen associated with about 100 diseases, one of them being "reactive arthritis." I'll know in a few days if I have that genetic marker.

Will post again when I have more info.

 

[megbabyrn]

Mary, OMG, at least it is not infected!!! That is great, great news. Did you research the new info yet?? At least it is not the worst!! Take care, at least a little celebration is in order!!

 

[jerseychick]

Great news Mary!!

 

[okiegal66]

That is great news regarding the infection!