Knee Infection* Three surgeries to clean out infection

[Maisybo]

Thanks to all for your comments & suggestions.
I plan to call the orthopedic surgeon who specializes in joint replacement complications as soon as his office opens today; his name is Dr Ken Kaminski.
He's in Tyler, which is about 80 miles from Lufkin, where I live. My current knee surgeon has forwarded my medical records to him already, so I'm fervently hoping he'll see me asap.
I'll try to update y'all on how things go.
Dana

 

[SusieShoes]

I’m so sorry to see you have so many issues troubling you. I can only offer some hopeful words on the high blood sugar you experienced after your TKR.

Following my hysterectomy a few years ago, I too found out I had high blood sugar! No diabetes in the family. It came out of the blue. My doctors said this happens sometimes when the body is under the extreme stress of surgery. I controlled it with diet and medication (not insulin) and have normal blood sugars now. Anyway, when I needed BTKR, I expressed concern to the surgeon about the diabetes, and he said they’d monitor it. They did. And my blood sugar never went up unusually. It did with the one surgery, but not with the other. I never needed insulin.

The doctors and nurses know how to keep on eye on that sort of thing, and how to treat it IF it happens, so you have nothing to fear.

 

[KarriB]

Please let us know how it goes.

 

[Pumpkin]

You should call Dr Maale's office and ask about Medicare, and not depend on his website.

 

[KarriB]

I agree with Pumpkln, a phone call can’t hurt.

 

[AnnieC]

Dana, did you not take your normal pain meds with you to hospital? I do!


Bilateral Total Knee Replacement 27 November 2017

 

[Maisybo]

AnnieC,
Yes, I learned to take them with me from previous horrible experiences!

 

[Maisybo]

Update; long...
I heard from the Revision Specialist Dr Ken Kaminski this afternoon. I called his office as soon as they opened this morning & was actually able to speak with his nurse. She advised me Dr Kaminski was in surgery today but that she would contact him & advise him about what's happening with me now & convey the urgency of it & call me back.
She called me this afternoon & told me Dr Kaminski had reviewed my records & "had nothing to offer me". I was shocked, because my cardiologist referred me to him. I asked her if he gave a reason & she said no. I reminded her my cardiologist referred me & she said nothing.

I found 2 other revision specialists in Houston, Dr Stephen Incavo & Dr Melvyn Harrington. I called both offices & explained what was happening. Dr Harrington's nurse never called me back, but Dr Incavo's assistant did. She said the doctor said I need to go to the Methodist Hospital ER in Houston immediately & one of his "Fellows" would evaluate me & report to him.

I have to rely on my sister for transportation, & she couldn't drive me to Houston today.

So his nurse told me I could come to his office for an 8 am appointment Thursday Dec 21. My sister can drive me Thursday.

About 2 hours after talking to her, I started feeling really terrible; a little dizzy, nauseous & short of breath & heart racing. So I went to my local ER. ER doctor said fluid coming out of my knee is "serous fluid". He advised I need IV Vancomycin & that once the infection was cleared up, my doctor needs to remove the hardware for 6 weeks at least & insert new hardware. My white blood count wasn't elevated & other blood values were within normal range. EKG was normal. He took a culture of knee fluid & said results will take 72 hours. He had nurse give me a bag of Vancomycin via my IV.

He told me I will probably have complications with a new knee replacement because of the lymphedema in my legs but the current hardware has to go. He didn't think I should necessarily go to a Revision Specialist. So I'm planning to go see Dr Incavo Thursday to get his opinion.

I feel exhausted & sad; of course no guarantee Incavo will accept me as his patient and/or take out implant.

Since I have to rely on my sister for transportation & she works in a small office, it's very difficult to go to a doctor far from home; it takes all day usually for us to go to my 2 Houston doctors now (Ortho & Infectious Disease), & my sister has to take a vacation day.

So that's my current situation.

Thank you,

Dana

 

[SusieShoes]

You’re wise to get the second opinion. I have no idea why the ER doctor tried to dissuade you from using a revision specialist. You should of course use the best doctor you can find to take your case.

While it may be difficult for you to make these visits, your health matters and you deserve good care. Your sister is doing the work of angels.

 

[KarriB]

Be sure the ER doc gets your culture to an Infectious Disease Dr. When my infection began I had a very high fever, body aches etc. I thought I had the flu until my knee began seeping yellow liquid.

 

[Pumpkin]

Maisybo,
Glad you are going to see a revision specialist. I would not let your previous surgeon near your knee again.
Suggest once your implant is out, and things have settled down, you be tested for metal allergies.

 

[Jamie]

Maisybo, we actually have some reservations about Dr. Incavo as one of our members who had a problem knee had a dreadful experience with him. Yours may be different, of course. But I still strongly recommend that you get yourself to Dr. Maale in Dallas. He IS the best in the country for this type of thing. The fact that you now are having physical symptoms such as the weakness and dizziness along with the fluid problem indicates you must take this very seriously. Your health and your life depend on you getting quality care immediately. Try to impress this on your sister and get her help to get you to Dallas. Call immediately to talk to his office. If necessary, could you take a bus there and a cab to his hospital to check in to the ER? When you talk to Dr. Maale's office, ask them for assistance as they have many out of town patients and have undoubtedly dealt with this type of thing before. Please do this!

 

[Maisybo]

Another long post...lots to think about & many hard decisions to make...input requested, please.

I did call Dr Maale's office, & he does accept Medicare! (thank you Pumpkin for saying not to rely on website list of accepted insurance). So Dr Maale needs my records from my TKR surgeon & Infectious Disease doctors, which I can request. Dr Maale can't see me until early January, though, because of Christmas holidays, which I totally understand. I don't know if it's going to be safe for me to wait until then, health-wise?

Dr Incavo's nurse called me this afternoon really pushing me to go to Houston TODAY; I told her I just can't because I can't get there; then she said come tomorrow. My appointment with him is Thursday morning at 8 am. I already told her I couldn't come until Thursday, so I kind of felt uncomfortable with her pushing me to come now. I told her I went to ER here & that I was given Vancomycin IV. She went over my medications & we got into a discussion about pain management after surgery. I told her it's a big concern for me to receive adequate pain management post operatively and she said "we can only give you a safe amount" & started educating me about developing a tolerance for strong pain meds, etc. I interrupted her & told her I'm well aware of that because I LIVE IT every day, and I've educated myself about chronic pain & pain medication & that I wouldn't go into this not having Dr Incavo on the same page as me regarding pain management.

It irritated me that she talked down to me about it when I'm living in pain every day, even taking medication for it. She didn't reply. Then she said Dr Incavo will probably put me in the hospital Friday for surgery to remove the implant. I asked if he wouldn't give me a few days of Vancomycin before removing implant, and she said no, he doesn't do it that way...that concerns me.

So I was feeling like maybe I don't want to go to Dr Incavo, then I saw Jamie's message that some of this groups members have had problems with him, so that really reinforced my feeling that he's not a good choice for me.

So if I don't see my original surgeon or Dr Incavo now and Dr Maale can't see me until January, am I OK to bide my time taking my Bactrim 800 mg twice daily? I'm afraid I need to get some more IV Vancomycin between now & whenever Dr Maale can see me in January?

Is it true Dr Maale does one step revisions? Does he not put in spacers for weeks/months & then do a new TKR? If that's true, it makes me feel a glimmer of hope in the inky blackness of this whole ordeal!!

After reading several posts on this forum of people's positive and life changing experiences as patients of Dr Maale, I feel very sure I need to find a way to get to his office, even if I have to ride the bus to get there! I absolutely feel he's my best chance for a positive & successful outcome!

My biggest concern now is if I'm going to do some kind of permanent damage to my body waiting until January to take any kind of action other than oral antibiotics?

Sorry this is so long; there was just a lot to say. I appreciate your reading my post.

 

[alexthecat]

I think you're making a wise choice to see Dr. Maale, if you possibly can. He really is the best surgeon to get you through this.

I can't answer your questions about whether there will long-term problems with waiting until January to see him. I'll tag @Josephine and @Jamie to see if they have any advice for you on that.

 

[Jockette]

With all the pre op tests we go through why don’t they do metal testing beforehand so that those who have it can avoid all the suffering it causes?

 

[KarriB]

I’m glad you called Dr. Maale! I thought you were a great fit for him. Josephine and Jamie will chime in here soon, but it can’t hurt to consult your infectious disease dr about your concern. When in January can Dr. Maale see you?

 

[Jamie]

With all the pre op tests we go through why don’t they do metal testing beforehand so that those who have it can avoid all the suffering it causes?

Testing for metal allergies is not routine most likely because insurance does not usually cover the cost and it is rather expensive (around $500). This may change in the future as more information about the impact of even a mild allergic reaction to metals is gained, but for now the test remains something you must ask for and fund yourself.

I need to defer to Josephine in regard to the impact of waiting to see Dr. Maale. Of course, if you feel the least bit ill, you should go directly to your local ER. It would be a good idea to talk with your infectious disease doctor as well as he knows the details of your case. You might also discuss your situation with your GP to get his or her take. Did you ask about the possibility of coming to Dallas now and checking in to an ER at Dr. Maale's hospital? That can sometimes get you treatment with your preferred doctor faster than a regular appointment. If you do that, be sure to have all your medical documentation in hand when you go.

Please let us know how you're doing! I'm going to be very concerned about you until I know you are safely under treatment in Dallas.

 

[Josephine]

Dr Maale can't see me until early January, though, because of Christmas holidays, which I totally understand. I don't know if it's going to be safe for me to wait until then, health-wise? I'm afraid I need to get some more IV Vancomycin between now & whenever Dr Maale can see me in January?

Yes, don't worry about that. Dr Maale often prefers to leave PPIs (peri-prosthetic infection) for some months to allow the organisms to mature and thereby become affected by the antibiotics. But if you want reassurance on that, why don't you ring Dr Maale and ask him for his advice?

I saw Jamie's message that some of this groups members have had problems with him, so that really reinforced my feeling that he's not a good choice for me.

I can't tell you relieved I am! Phew!

Is it true Dr Maale does one step revisions? Does he not put in spacers for weeks/months & then do a new TKR?

He does both, choosing which one according to the needs of the patient. But I'm sure he will discuss it with you beforehand.

 

[Josephine]

With all the pre op tests we go through why don’t they do metal testing beforehand so that those who have it can avoid all the suffering it causes?

This testing is actually quite expensive. And bearing in mind that in the UK there are about 160,000 TKRS and 700,000 per year in the US, think what a financial burden this would impose on the health systems for the 90% who would have negative tests.

 

[Maisybo]

I talked to Belinda, the new patient coordinator for Dr Maale today, & the soonest he can see me is Jan 6. She said she would talk to Dr Maale about my situation & his opinion on effects to my health & let me know.
I really feel in my gut I should see Dr Maale to give myself the best chance of having a better outcome with this situation.
I'm going to call Dr Maale's office again & ask about going to the ER of one of the hospitals he's on staff.

Thanks for all your encouraging words.
Dana