As mentioned yesterday, I got my second opinion from another orthopedic surgeon on March 31 (last week Tuesday). After so many years, you would think that a person gets used to doctor's appointments, but I still find them as nerve-wracking as ever. My mum and I arrived at the hospital at 11 am, but we were not seen until about 1:30pm. I was hoping for a quick appointment - in and out to make it in time for my afternoon classes, but that did not happen. The surgeon had two medical students doing their rotations with him. He asked if it was o.k. if they ask me some questions.... I said "Not really. I don't want to be rude but I haven't always had the best experiences with med students." The doctor gave his spiel about how they need to learn, so I ultimately relented. I do understand how it is important for med students to practice and learn, especially now that I am a nursing student and rely on patients to allow me to practice my own skills on them, but I feel that I should be able to say know after so many years. Every time I go to a new doctor or surgeon and there is a med student, I have to first go through my entire medical history with the med student - this is often brutally slow and painful as the med students are inexperienced and ask questions about everything! I know, I know, they are learning! But I am not the average patient who broke an ankle and will heal in six weeks. I have been dealing with this for over nine years! I am tired. I am frustrated. I am worn out. I am worn down from always having to use coping mechanisms to get through this. Above all else, I am worried for my future, nervous because we are kind of in unknown waters, afraid of the pain that surgery will bring, that the bone graft might not be accepted, that the infections might come back again despite the proposed surgeries... Having to go through the entire story with the med student, hear the med student relay it to the doctor, and then tell the whole thing again myself for clarification so the doctor gets everything the med students missed adds insult to injury. Isn't it enough that this is the sixth surgeon I have seen?
And that is my rant about that. Back to the appointment itself.
The surgeon pulled up my bone scan, x rays, and WBC scan. He noted the increased bone activity shown in the bone scan and commented on the fact that the WBC scan doesn't show signs of infection. He asked the med student how it is possible for there to be osteomyelitis (they called it OM - has a nice ring to it, and much less of a mouth full than chronic osteomyelitis) but a negative WBC. Mum and I exchanged glances, fearing he would tell us nothing is wrong and send us away, despite knowing that my ID specialist and OS think there is still infection in the leg in addition to the MRI in December, the bone scan from early February, and the x-rays taken in the E.R. mid February. Fortunately, this did not happen. One of the med students suggested that there could be not infection. The doctor pressed him for more answer. The student than suggested that immuno-supression (I don't have that), medications (wasn't on any at the time of the scans - not since October 2012) could cause negative scan results. Still, the doctor pressed on. Eventually the student offered lack of blood flow to the affected limb. Bingo! The surgeon explained that when their is no blood flow in the affected area, that there is now blood, and therefore no white blood cells and radioactive tracer stuck on to them that can be picked up by a WBC scan, hence the negative result. The surgeon then asked how this happens. The answer is that the body has walled off a piece of bacteria/infection to protect itself.As a result, bone dies. This is what happened to me in 2011, when I had an abscess on my shin and a piece of dead bone, or a sequestrum, come out. I then pointed out that I have had five or six WBC scans since this all started and none of them has ever come back positive for infection - at the most, some of them have been inconclusive. The surgeon said that was important to consider as well.
The surgeon than asked me how I have been feeling and my thoughts on everything. I said it feels like it did when I was diagnosed in 2011. He told the the med students that it is important to take into account the patient's symptoms and feelings, especially with chronic issues like this. He than gave me several options:
1) Continue on with life and treat the infection when it flairs up.
2) Stay on antibiotics for the rest of my life. He said he advises this to older patients, but it wouldn't be good for me because I am so young.
3) minor surgery to debride dead bone use some antibiotics beads.
4) The surgery my orthopedic surgeon recommended - cut out a chunk of bone and fill the space with antibiotic beads and bone cements, close everything up, and then come back in about 3 months to put in a bone graft from my opposite hip. He said that this is a good plan and my best bet to make sure that we get rid of this bastard once and for all.
The surgeon said that it would be hard to determine what bone to take out of my leg since their is not sign of active infection according to the WBC scan. He recommends a CT scan in order to determine exactly where any dead bone is.
Yesterday I got a letter from the hospital with my CT scan appointment - it will be on April 20 at 4:15om. On April 23 I have an appointment with my ID specialist. I am going to try to schedule a follow up with my regular surgeon the week after that, which is right before second semester start. I hope that we can schedule a date for surgery during that appointment.
There were several good things that came out of this appointment:
1) Confirmation with my surgeons proposed plan to treat the infection
2) More peace of mind - second opinions in and of themselves are always good, and the doctors really take the time to listen to me. I think your relationships with them change over time. This is not an easy case with a broken leg that will heal in a few months, and the doctor and patient will never see each other again. This is a long term thing. My surgeon knows about my fears and insecurities... everything I have been through and how devastating it is for me that this has come back again. I think he told some of this to the second opinion surgeon, who took the time to listen to me.
3) Answers to why the WBC scans have always been negative or inconclusive (dead bone can't show infection)
4) I was given a choice who I wanted to do the surgeries. I picked my regular OS. He did a great job on the surgery last time (not his fault this thing came back). I have built a good patient-doctor relationship with him. He is by far the best surgeon I have had! Being given this choice give me some control over things and recognizes my place in this situation and my right to advocate for myself.
5) My regular OS popped in for a moment to say hello. He did not have time to stay for the consult, but it made me even more confident in my choice to stick with him for the surgery. He also told me ha had talked to my infection disease specialist the day before - that instils a lot of confidence, to know that my doctors keep tabs on me and consult each other about me frequently. And it is overall a very nice thing of him to do =)
After the second opinion, I am happy with my decision to go with the surgeries. We still have to hash out some of the details, like using a rod inside my tibia or an external fixator to hold everything together, but the choice of what to do it clear to me.
I will be glad when I have two weeks off starting at the end of next week. Last weekend I slept like crazy but never did feel rested. The antibiotics are giving me some stomach upset. My leg is hurting again and itches like crazy. I look forward to the day when this dreaded infection is gone.
I have a lot of fear and apprehension for the surgeries, and try not to entertain the thought that they might not work. After all, the infection came back again even though my doctors were confident that the last surgery and course of IV antibiotics would get rid of it. I keep reminding myself that my ID specialist told me that you can't look at cures when it comes to bone infections, but remissions or relapses instead since they test can never really prove if the infection is gone or only lying dormant, biding it's time until it reappears (usually when most inconvenient for the patient may I add!. Last time I hoped for a cure and I thought I had one. This made the relapse of the infection so much more devastating than if I had considered it as a real possibility.This time around I will remain cautiously optimistic. I will try to stay grounded in reality. I will try to find peace with this undesired situation and make the best if it. I always hate it when my brother says "it is was it is," but that is so true in my life right now. It just is a boring, stubborn, nasty thing that I hope I can banish.
Update from yesterday: My sweet guinea pig died today, just before I got home from school. She was still warm when I nudged her to see if she was just asleep. My other guinea pig, Luna, is miserable. I thoroughly scrubbed her cage in case the she could still smell Lumen and that smell would upset her or make her distraught searching for her buddy. But the first thing she did when I put her in the clean cage was still to search frantically. I noticed when Lumen got sick and stopped eating, Luna stopped eating as well, and would quietly lay beside Lumen, nudging her gently with her head. Now she won't come out of her hide house, even if I entice her with treats. I miss Lumen and am sad for my other piggie. My mum and brother both suggested I get a new guinea pig to keep Luna company, since guinea pigs are social animals, but with surgery hopefully coming up in the fall I don't think it would be a good idea. =(
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