Knee Infection* Stage Two Revision Completed

[arizonaone]

I know you all are going to think I'm crazy but I want to cancel my surgery and see a different OS. Just don't think any other Dr is going to touch my "knee" at this point.

Im starting to lose confidence in my OS. I'm seriously starting to have reservations which I have outlined below:

1. Even though my cultures all came back clean from the aspiration my labs from 2 weeks ago are: ESR is still high at 55 and my CRP is 14.3. Although the CRP has come down since the end of my IV antibiotic therapy at the end of August the levels are higher than my initial blood work that my OS ordered in May when I first saw him. At which time he diagnosed the infection.

2. My white blood cell count is high based on labs the hospital ran when I was just there and has been high for weeks.

3. My granulocyte level is also high which according to my research also indicates infection. It was high at my previous labs taken on 10/10 or so

4. Based on what I read about antibodies in my blood they can form due to an infection in the body.

I know I am no doctor but I don't know why he is so relying on the cultures to be sure there is no infection when he never aspirated before my July surgery when he put the spacer in and just relied on my labs and clinical evaluation of my knee.

5. As I mentioned in 1 of my recent posts I have hypoglycemia. Given that I can't go hours without food or drink I had made it clear to the surgical coordinator at my OS office before my July surgery that I needed to be first thing in the morning surgery or at least early in the morning. She didn't do it this past Wednesday.

When the hospital called today to give me my time for Monday i was told to be there at 1:15 on for a 3pm surgery. When I told the nurse about my issue she told me I had to call the coordinator as she and my Dr make the schedule. So I emailed her and then when I didn't receive a reply left a voicemail. Nothing. She had to have seen the notes from my first surgery and when the one on the 24th was initially scheduled I had reminded her again.

I feel like my OS blames ME for the surgery having to be cancelled. (Felt like that when I saw him at the end of the day on Wednesday). I also feel like they could care less about my well being. I think - but not sure my mother may have said something to him on Wednesday. She doesn't care what she says about anything and made a complete mess as she is telling everyone who will listen that the surgery was cancelled because I refused to give blood for the type and screen. Nothing could be farther from the truth. See above where I got the feeling he was upset with me.

When I first saw my OS in pre-op I told him about the lab results. He didn't seem concerned- at all. I feel like he is not looking at the big picture.

Plus I feel like absolutely awful. And it goes beyond the pain.

Honestly, am I over thinking or is it just pre-surgery jitters? Or am I really crazy?

 

[Jockette]

Since Josephine is still away I’m going to tag @Celle.

I’m also going to tag @Jamie

 

[arizonaone]

Thank you @Jockette

I also forgot to add that the white blood cell count from the aspirate was high as well and it was bloody with a clot. When I mentioned that to him at the pre-op appointment he wanted to know if I did an ortho residency. But said that it all was normal

 

[sistersinhim]

he wanted to know if I did an ortho residency.

That sounds pretty hateful. You didn't deserve that kind of answer to a legitimate question. I think when you lose confidence in your doctor, then it's time to go elsewhere. You need to be sure about who's working on you. I think that's half the battle of your recovery.

 

[arizonaone]

@sistersinhim I thought so. So much so that I said to him - are you being mean or just busting my chops because I don't know how to take what you said. And his answer was that he was busting my chops.

 

[Terrelane]

Go to a new pain management clinic. Do you have a general practice doc? Find the doc you need. Sounds like senseless punishment to you.

Sent from my SAMSUNG-SM-G890A using Tapatalk

 

[arizonaone]

@Terrelane I do have a PCP but they will not prescribe pain meds. Florida passed a really strict opioid law that took effect the in July. Drs are too scared to prescribe anything unless they are a pain MGMT.

I need to find a new pain doc, after my surgery I will do so.

 

[Celle]

@arizonaone - Do you have an infectious disease doctor in your care team? I don't know enough about your blood results to advise you about those, but an ID doctor would.

Even though your surgeon is being a grumpy bear, I think your options for finding someone else to take over at this stage are limited. I don't think another surgeon would want to take over what could be considered to be a "half-done job".

You've done a good job of documenting why you are concerned about your surgeon. I think that you need to schedule an appointment with him, to discuss those concerns. They are valid, and you have every right to receive a proper response to them.
Take a printout of your post here, so you have them written down. Add to that list that you get hypoglycaemic and need to either be early on the surgery list, or to be allowed to eat and drink up to 4 hours prior to your scheduled surgery time.
Do you have anyone you can take with you for support (not your mother!)?

You may find your surgeon is more reasonable if you discuss your concerns with him, adult to adult. Surgeons don't like it if their surgery list is held up or cancelled - he may be less grumpy on another day.

 

[Jamie]

Good for you for your comeback to that rude doctor's comment to you! I certainly see why you have little confidence in this surgeon and even in the hospital and would like to go elsewhere.

However....that does present some potential problems for you as you're right that a majority of surgeons probably would not want to step in mid revision to take over a case. You are unlikely to find a doctor close to you (the good old boy network, you know) and will have to travel. How far are you willing to go? And then there will be a delay. You may have some pain issues while you're waiting to find someone else. Not that I'm trying to discourage you, of course, but you need all the facts to make the right decision for yourself. Please also consider that, even though the surgeon is not being particularly sympathetic to your situation, if he is a good technician that is what you're really after. You'll have to determine how you perceive his surgical skills and whether or not you can endure his rough bedside manner.

The thing I see that may be missing in your case is the presence of an infectious disease specialist. Normally a good revision surgeon will bring in an infectious disease doctor on any case where infection is present or even suspected. How about requesting that from your current surgeon so at least your concerns about the high levels could be resolved with an additional educated opinion. If he gets huffy with you, tell him you're not trying to be a medical professional, you just would like to have to reassurance from an infection specialist that it's okay to proceed. Here are a few options for infectious disease doctors where you live:
https://www.vitals.com/infectious-disease-doctors/fl/melbourne You would need to call their offices and see which of them has experience with knee and/or hip infections and whether or not they would agree for a consult with your surgeon.

I also think you need to have a heart-to-heart with your current surgeon. It's weekend now, so see if you can call the clinic's on-call doctor, explain your concerns, and ask to have your surgeon call you over the weekend. If you can get him on the phone, explain exactly how you feel about his comments and seemingly uncaring approach to your situation and concerns. Keep calm and talk from a list of points that you've written out ahead of time so you can remain businesslike and address everything that needs to be said. Maybe he will see the light and treat you differently when he sees the impact of his actions.

Of course, now you're going into the weekend, so you'll have to scramble to do anything before your surgery time on Monday. Try and be calm and think through this before you decide for sure. Be sure you're not just acting out of frustration and/or fear. You've been through a lot and I'm sure you are physically and mentally exhausted. Think about what a delay may mean in terms of work to find new doctors and time lost while you are in pain. Talk more with us here to think things through if that helps. It's a decision only you can make, but if you are worried about your surgeon and the upcoming surgery, you have a right to seek treatment elsewhere.

Please let us know how you are doing this weekend. And be sure to tag me or @Josephine when you post so that we'll get back to you quickly. Hang in there! You will see the right path when you consider all the options and are rested enough to look at things clearly.

 

[KarriB]

My question is the same as Celle and Jamie’s. Is an infectious diesease Dr involved? Chances are an ID will want tissue samples taken during surgery to check for infection as that will give different information than blood work.

The day after my infection surgery (washout/spacer exchange) I actually saw an infectious disease dr before the surgeon. It was Thanksgiving Day but the senior member of the ID group came into my room to explain everything to me. Five years after my TKR/Infection I still see my ID yearly.


Would you be able to speak with your OS over the weekend?

 

[Pumpkin]

Arizonaone,
I agree you need an infectious disease specialist advising about your infection.

 

[kneeper]

Surgeons are not known for their people skills. But they should be able to explain what's going on to patients.

 

[arizonaone]

Thank you all for your great advice! I do have an ID Dr whom my OS called in from the beginning. I thought that they would be in periodic contact with each other to monitor my infection but that does not seem to be the case which I think is part of the problem. While my ID ordered the last round of labs for ESR and CRP I'm quite sure they were not shared with my OS. But I totally forgot about contacting her for more clarity. I was so wrapped up with being sick and in pain I wasn't thinking clearly.

I can also call my hematologist who I've seen for my anemia and ask him about the relation, if any, with antibodies in my blood and an ongoing infection.

Since I'm not leaving for the hospital until afternoon, I'll take the morning to make those calls and hope the Drs get back to me. Didn't want to call over the weekend because I would not be guaranteed vtvst I would get my Dr as opposed to whoever is on call.

Jamie you are right about all of the delays that would ensue if I decide to go elsewhere. After almost 5 years of my knee being the center of my world, I'm done. I can't emotionally go on with this knee any longer than necessary and I'm tired of the pain and pain meds. As you also confirmed, it's not probable that I would find a new OS to finish the job.

His bedside manner was never an issue until recently but then I never questioned his "advice" before and never had a surgery cancel. Celle, I'm sure surgeons don't like any disruptions to their schedules but this was beyond both of our control. Would think he would have handled it a little bit better. But maybe he had a rough surgery before speaking to me and I got the brunt of his mood.

I'm not questioning his skill. He came highly recommended, does many revisions and handles most of the areas TKR infection patients. I'm wondering whether he has availed himself of all the facts of my case. Dumb question but do surgeons go over their patients cases periodically so they know what's going on or do they just gave me a cursory once over the day of surgery?

I will see him before surgery and will not be sedated until I do. At that time I'm going to raise my concerns and see what he says.

One last thing: to those who live alone how did you do once you came home from the hospital? What about icing with a cryo sleeve? I'm afraid I won't be able to fill it continuously and drag it to my bedroom. Will peas/ice bags work just as well?

@Jamie , @Celle, @KarriB ,@Pumpkln

 

[Pumpkin]

Leave the cryo sleeve in you bedroom, use frozen water bottles to keep it cold. Much easier to transport them back and forth.
Glad to hear you do have an ID, sounds like there has been a communication problem.

 

[Jockette]

I agree with Pumpkln, leave the cyro sleeve in the bedroom and use other types of “ice packs” in other areas.

Best wishes tomorrow. You’ve had a really rough week and I hope things go better from here forward.

 

[Jamie]

You sound much more "together" now. I have confidence in you to make those calls on Monday and have a serious talk with your surgeon before the procedure. After all that is done (or if some things are not done to your satisfaction), you still have the right to refuse surgery up until the moment you sign the consent form. So don't feel guilty at all if you do decide to wait until all your questions are answered.

Hopefully your surgeon will recognize your concerns as valid questions and respond well to you to reassure you. He does sound like a good choice based on your last post. My only concern at this point would be the high readings and the seeming lack of coordination with the infectious disease doctor.

 

[flsungirl]

@arizonaone im so sorry you’re going through all of this. I also had a Melbourne fl orthopedic doc do my knee replacement. I’ve been discouraged after surgery because my after care was lost somewhere. I can’t imagine going into this surgery with all these concerns you have. It’s got to be super worriesome.

I’m not sure why doctors talk to patients in that manner. If we could only be 100% confident that all our health care concerns are addressed. After all, it’s our life that’s in their hands. You have every right to ask every question in response to your outline above. I know I forgot things because it’s extremely stressful before and after surgery.

The new opiate dispensing laws here in Florida scared me because I was terribly worried about pain control after such a major surgery. My doc must have forgot because my first rx he wrote for 10 days. The maximum they can write for is 7 days. They did fill it but not for the full 10 days. I only had 2 weeks of pain meds and in hindsight wish I would have requested more, especially for night time pain management. I didn’t stay ahead of the pain game. I’m taking ibuprofen 800 as needed now and it does help at this stage of my recovery. It did nothing in the beginning!

I also take gabapentin for nerve pain and hope that’s the last hurdle I have. I’m tired of new symptoms presenting when one symptom goes away!

I wish you the best and hope the surgeon is respectful to your concerns.

 

[Celle]

While my ID ordered the last round of labs for ESR and CRP I'm quite sure they were not shared with my OS. But I totally forgot about contacting her for more clarity .I was so wrapped up with being suck and in pain I wasn't thinking clearly.

I hope you do get to speak to your ID, and ask her if she has contacted your surgeon with the test results. She may not be aware that your surgeon is planning to go ahead with the surgery so soon, and he may well not have those results.

The lack of communication between these two, who should be a team, acting for you, has put you in a difficult situation. It's not your fault, adn it's up to them to sort it out.

I can also call my hematologist who I've seen for my anemia and ask him about the relation, if any, with antibodies in my blood and an ongoing infection .

Good idea!

Please let us know how you get on.
It won't hurt to leave your antibiotic spacer in place until you, your ID doctor, and your surgeon are all agreed that the next stage of surgery should be done.
If this is postponed for a while, make sure that you are given adequate medication to control your pain while you wait.

 

[sistersinhim]

One last thing- to those who live alone how did you do once you came home from the hospital? What about icing with a cryo sleeve? I'm afraid I won't be able to fill it continuously and drag it to my bedroom

I am single and was alone most of the time after my surgery. I have an ice water circulating machine, too, that I used for months. I have a rolling walker with a seat on it and a little basket under the seat. I put the ice machine on the seat and rolled it into the kitchen to refill with the frozen water bottles and water. I then took it to where I would be using it. The rolling walkers aren't that expensive and are a huge help to us single people who need to transport things! If you need the walker to not roll, there are hand brakes to stop it.

 

[arizonaone]

@flsungirl My surgery was actually in So FL. Had to go there because I couldn't find a good surgeon on my insurance plan in Central FL. My second OS was in Melbourne- for my meniscal repair.

Yes the new opioid laws are terrible. Also Drs are running scared because they are afraid they may loose their license. On Wednesday after the fiasco, I asked my OS about pain meds until surgery. He got snippy again and said "I told you I can only prescribe for 2 weeks after surgery". Mmmm no, that wasn't ME you told because you brought in the pain guy right after my July surgery. Maybe it was someone else?

Regardless, I'm lucky I have a pain MGMT Dr (whether my current one or a new one, if I'm able to find on short notice). Otherwise I'm not sure what I would do. Monday will be my 5th knee surgery and my angry knee will be even angrier.

Thank you again to EVERYONE who has helped me through these last couple of weeks. You have no idea how much your insight, support and prayers have helped me .