Update

I got home for the weekend about an hour ago, and just had dinner. Now that I have had a little bit of time to digest what my surgeon said, I feel like I can actually write it down and reflect some more on it. Before I do that, I will give a quick update on the last few months/days.

Last summer, around June/July, I had a few small painful sores come up on my shin. I was concerned, but they healed after some time. Trying not to jump to conclusions, I assured myself they were either ingrown hairs or a side effect of all the damage from the original break and multiple surgeries and edema in my lower leg.

In September I started having bone and muscle pain. I am a cashier, so I shrugged the pain off to standing all day for long shifts. My previous issues with my leg crossed my mind, but I wanted to believe everything was o.k.

On October fourth, while volunteering at a community harvest festival, I remember turning to my mum and telling her that I thought my bone infection might be back. She was, understandably, a bit upset with the timing of my announcement.

Later in October, I had a sleep over with my best friend, Beth. I remember looking at my leg that night and thinking something was wrong. My leg was itchy, red, and hot. A few days later I had a rash over my right shin, across the scar from the multiple surgeries I have had.

By the end of October, the rash had not only failed to heal, but it had continued to worsen and spread. The itch was indescribable. I also began to experience more bone pain. At the end of the month, I called my Infectious Disease specialist. I had an appointment with her on November 3. I remember telling her that I hoped the rash was not related to the bone infection that we thought I had gotten rid of by the end of 2012 when I stopped all antibiotics in October 2012. She agreed that it could be unrelated but said that it was quite odd that I always had issues in the exact same spot on my right shin. She ordered an MRI asap.

It took a long time to finally get the MRI booked. After several weeks of waiting for an appointment, I called the MRI department, who said that they had recieved the MRI request but had not done anyting with it yet. I scheduled the MRI myself at that point. Meanwhile, the rash continued to itch, the skin would half heal and then flake off, and my leg continued to hurt.

The MRI was on December 23, 2014. Two days before Christmas. I was terrified that the hospital would reschedule, like they did with surgery in 2012 due to short staffing caused by the Easter weekend. All of my previous MRIs have been done with a contrast dye, injected half way through the scan. For some reason, the MRI tech did not want to use the dye this time. I thought nothing of it, thankful that the scan would likely take less time. Half way through the scan, the MRI tech comes in and says that they need to use the dye anyways, because the images looked almost identical to those from the last MRI in fall 2012. This would indicate only minimal or no healing at all. I remember lying in the MRI machine, thinking that I could not go though treating a chronic bone infection again.

I received the MRI results from my ID specialist on January 15. She strongly suspected that I had a lingering infection in my tibia, slowly simmering away. To confirm/throw out this suspicion and to create a baseline for future care, she ordered a bone scan and a WBC scan.

The bone scan was in the last week of January. I know from what the nuclear medicine techs said that there is increased bone activity in my tibia. The WBC scan was in the first week of February (last week Wednesday and Thursday).

Last week Friday, my infectious disease specialist called my just after 6 pm. She told me that the bone scan that I had in the last week of January showed increased bone activity, but that the WBC scan showed "nothing concerning". WBC bone scan, which indicates infection, pretty much trumps bone scan, which can still show healing from my last surgery in April 2012 (debridement, removal of dead bone, putting in antibiotic beads). My ID specialist said that she wants me to come back in ten months for a repeat MRI, just to make sure that spot on my right tibia is healing properly. She assured me that I could come back and see her earlier if I have any issues. I went from thinking that there was a lingering bone infection to being toldthat everything was o.k., and that for the next ten months I should presume that there is no active infection.

I spent the weekend letting all the stress from the scans fade away and catching up on sleep. I was accepting that things were o.k. That my bone infection was not back, despite a lingering feeling of unease, thinking "But why is there still increased bone activity three years afetr surgery?" and "What is the spot on my tibia on the MRI if not an infection?"

Sunday night came around and I was tired. My leg hurt a bit and felt a bit puffy. I ignored this... too busy with school work and getting ready to go back to Hamilton for the school week.

On Monday my leg was more swollen and hot. My shin, around my surgical scar, was an angry red colour. Several small abscesses on my chin formed, opened up, and began draining fluid. The one nearest my ankle, at the end of the scar, began to drain a bit of pus. By the evening I was not feeling good - chills, leg throbbing and stinging, some bone pain. Freaked out by the pus, I decided to go to the emergency room. I got there at about 9:30 pm. The doctor was quite concerned about my leg, but the blood work he had done came back negative. Those results, coupled with the WBC scan results, didn't suggest anything super serious, so I was given a perscription for 7 days of Cephalex, and told to return to the E.R. if my leg hurt more, drained more pus, or if I got a fever. The E.R. doctor told me to call my ID specialist in the morning, and himself sent a a fax to the ID specialist about what was going on. By the time I was done, it was 2:30 am and all buses had stopped running for the night. The E.R. staff was very kind, giving me vouchers for a cab ride home, and calling me a cab!
I was home and in bed just after 3 am

I slept until almost 10 am, and called my ID specialist almost immediately after I woke up. I got the answering machine of her assistant so i left a message along with my cell phone number. in the afternoon I went to get my prescription filled. I was really tired and in pain, so I skipped all of my classes.

The next day was Wednesday. My leg was more puffy and hot and started draining more pus. I decided to tough it out an go to lab in the morning. I couldn't afford to miss more lab classes, since I had already missed the previous week due to the WBC scan. I learned how to perform a musculoskeletal assessment and continued practicing how to transfer and position patients.
My keg throbbed and burned and continued to drain pus. It felt much worse than it did on Monday. My ID doctor had still not called me back. After lab, I went directly back to the E.R.

The E.R. doctor was concerned with my leg. The spot over my shin had turned a deep red colour and was very swollen. He called over another E.R. doctor to look at it. She agreed that it did not look good. They worked hard to contact my ID specialist - she was out of town for the week, which is why she had not responded to my message. She doubled the length of the antibiotic I had been prescribed in Monday (Cephalex) from 7 days to 14 days, and added another antibiotic (Doxycycline) for 14 days as well. The E.R. also got x rays of my leg, which were "better than" the previous x rays. Mind you, my previous x rays were from sometime in 2012. The E.R. was very busy so i did not have time to ask whether "better than" meant fully healed or only partially healed but better than right after surgery.

I went home in the evening and immediately got the Doxycycline prescription filled. When I got home I was tired, so wanted to lie down for a bit. Before I know it, it was past midnight. I had fallen asleep in my clothes, with the light on, on top of my bed. I too my antibiotics and immediately felt sick, throwing up about an hour later (thank you Doxycycline!!! not...). I went back to bed around 2 am, and slept until 11 am. My surgeon's office called and set up an appointment with me for today (Friday) at three pm.

I had clinical practice today from 7 am - 1 pm. I went straight from clinical to the hospital for my appointment with my orthopedic surgeon. By the time I got home I would have had to leave immediately, so it was easier to go straight to the hospital, even if I would be early. Fortunately one of the members of my clinical group, Eva, had to take the same bus downtown from clinical, so we stopped at Tim Hortons for cookies an hot chocolate before I had to catch the other bus to the hospital.

I ended up arriving at the hospital at 2 pm, an hour early. I naturally thought I would have to wait at least an hour ti be seen. Usually you are given a time to arrive, and then have to wait anywhere from a  few minutes to hours before actually being seen by the surgeon e.g., your check in time might be 3pm, but you might not be seen until 5pm, depending on the complexity of patient needs, emergency cases, how busy it is, etc.

I was called in just after 2pm. Turns out there was a long line for x rays that need to be done before the doctor sees patients. Since I already had x rays done on Wednesday in the ER, I was allowed to jump the line and be seen earlier than expected!

My surgeon is amazing - great bed side manner, great at his surgical skills, caring, compassionate, very knowledgeable. Today, he gave m the time I needed to express my fears and concerns. It was much needed. he started by asking me how I was doing and asked me to explain what had brought me to the E.R. I explained everything that I have posted above. He then examined my MRI, bone scan, WBC scan, and x rays. There was a lot of "What is that" and "what the..." when he looked at the MRI. He clearly did not like what he was seeing, nor did he fully know how to explain what it was. He turned to me as said "You have just won the right to get a second opinion by Dr. ----, another orthopedic surgeon at this hospital." He was dead serious, but the way he said it was really funny!

He summarized all of the scans/results:
- The MRI shows some type of fluid within my tibia - not sure what it is.
- The bone scan shows increased bone activity, which is not expected
- The WBC scan is negative, but this can be decieiving (I have add this scan 4 or 5 times before, usually inconclusive)
- My blood work is normal (but it has never been abnormal, even when I was really sick with the chronic bone infection in 2011).
- The x rays show the hole he drilled in my bone in April 2012. This does not concern him, but he is concerned with a "shadow" he sees around the drill hole.

He then examined my leg - prodded the areas around the abscess on my leg pretty hard. I said "That hurts, please don't do that. Really, stop, that hurts." He joked "People come to see me to be in pain." I responded "No people come to see you to get rid of their pain!"

He said that given the MRI, bone scan, x rays, and the swelling and drainage from my leg, it was likely that I still have a bone infection. He needs me to get a second opinion from another OS and to consult with my ID specialist.

I then asked my most important question, and bluntly asked "Can you fix it?", to which he responded,  "I can, but it won't be fun/easy." During my last surgery, he scraped away the dead bone from my tibia. This is very minor to what he would do this time if the infection has returned. He says he think he can get rid of the infection, but it will be major surgery with several steps.

He said that we could do the same type of surgery as last time, simply scraping away any dead bone. The surgery, he said, did work, or at least for two or three years it worked! He, however, stated that once you have already done one surgery once and gotten a certain response, it is unlikely that a second surgery of the same kind would yield different results. I agreed, stating that was the definition of insanity.

So, if it is indeed infection, he proposes major surgery instead:

First, he would remove the infected section of my bone and the surrounding area for good measure - about 1.5-2 inches of bone all the way around, and fill in the area with antibiotics beads/sponges. I am unsure about this part, but I assume my leg would be held together with an external fixator.

He would then close me back up and let the antibiotics do their work for 2-3 months.

Then he would open me back up, take out the remaining antibiotic beads/sponges, take a bone graft from my hip, and use it to fill in the missing bone. The ends of my tibia and the piece of hip bone would likely be held together with a metal rod.

I would then have another 3-6 months of recovery time.

This entire process would take 6-9 months.

This is, indeed, major surgery compared to my previous surgeries.

I expressed my concern, stating that I am a nursing student. I can't take time off from school for surgery, not like I did while in university. He completely understood. He said that I would have to finish the RPN program first (Spring 2016) before I could have surgery. This is about  14 1/2 months from now. Not a brilliant thing to look forward to after graduation... =(

That gives us 14 months to figure out what is going on. My surgeon stated it is unlikely that we could grow anything from any swab samples. He mentioned a needle biopsy, but said those are not fun, and it likely won't grow anything anyways. Not even samples taken from surgery in 2012 ever grew anything. Unless we can accidentally stumble on a magic antibiotic pill that can cure  whatever is in my leg, surgery is my best option.

What I was told today is so different from what my infectious disease specialist said on the phone a week ago today. I will likely be speaking with her in the next week or so to discuss all this. And, of course, my surgeon and ID specialist will be communicating as well, plus the second opinion from another orthopedic surgeon.

I don't quite know how to feel or what to think. I agree with my orthopedic surgeon that something is wrong, most likely infection. Knowing is better than not knowing. Now at least I can set things aside, put surgery in a little box at the back of my mind for sometime spring/summer 2016, hopefully, and get on with school work. I am too busy to spend too much time worrying now. Mid terms are next week, and the end of first semester will be her in no time. Some of my clinical groups and I agree that by the time we get to June or July, the rest of the year will pass really quickly, and then, before we know it, we will be at the end of fourth semester in April 2016. That leaves surgery right around the corner...

I have been scared of  chronic osteomyelitis and surgery before, but I have never been this afraid of what could happen. This is a major surgery, and it terrifies me. I need it to work. I need to be able to get over this and continue to move on with my life.

I will just have to wait and see now what my ID specialist and the OS for second opinion says.

This is my leg right after surgery in April 2012 to remove the dead bone from my right tibia. You can see where the surgeon scraped away bone - dark gray areas.

This is my leg two days ago, on Wednesday, February 11, 2015. In the center is a dark gray spot. This is where the surgeon drilled into the bone. This spot does not concern him, but the shadow around it does.

This is  a lateral view of my right tibia from the MRI done on December 23, 2014. The dark white spot is where there is fluid within my tibia. There is also, as my ID specialist says, "A heck of a lot of scar tissue."

This is the anterior view of my right tibia, from the MRI taken on December 23, 2014. That white spot in the middle is the same as the white spot in the previous photo - fluid in my tibia.

Time has been passed

Well then... *crickets*

That is pretty much how I feel about todays appointment.
I do not know which words to use to describe what was said and what it means for me.


My surgeon is awesome, but the words coming out of his mouth sucked. They sucked a lot.
I want to scream in anger; cry in frustration; feel relief because now I know that something, once more, is going on, despite the good WBC scan and  blood work... that their is a connection between the abscesses on my shin and the muscle pain in my calf and the x rays from Wednesday, the bone scan from  two weeks ago, and the MRI from December 2014.

I am disheartened that this is still going on almost nine years later. 
I don't know how things will work out now.
I am shocked at how different the opinions of my surgeon and infectious disease specialist are.
Enough is enough. It is not fair.
My new outlook -  stop caring about it at all and just do what the doctors tell me to do, how to do it, and when they want me to do it.

At least, that is what I want my outlook to be, but... at the end of the day, I still care. I care very very much. I worry and I hope and I try to anticipate what will happen next. And I believe that there has to be away for this to go away.

Passing the time

I will update the last few days during the upcoming weekend.

I see my orthopedic surgeon tomorrow afternoon. His secretary initially wanted me to come in at 10 am, but I have clinical in the morning. I take what is going on with my leg really seriously, but I can't  miss school, especially not clinical, where my new skills come into practice. Nursing is not the same as  my university degree. I could afford to miss the odd history lecture because I could make up the work on my own. This doesn't work when you have to practice musculoskeletal assessments or how to take vital signs. So I will see my surgeon at 3pm instead. Seeing him doesn't mean I am having surgery. He is just the next best person to see while my infectious disease specialist is out of town. The surgeon and ID specialist communicate a lot, so I have no worries in seeing him instead of her. Also, he did a really good job on my leg (not his fault that something is going on now).

For now I am having a drink and studying some anatomy before bed. I hardly ever drink, but after this week I think I deserve (and need) some stress relief.
Excited for tomorrow morning. Not so much for tomorrow afternoon...

Waiting...

Waiting for my ID specialist to call with scan results. Hopefully I will get them today, but chances are I will get them early next week.

The emotional roller coaster is going way to fast. On moment I feel fine. Whatever happens, life still goes on. I am still the same person; still in nursing school; still feeling healthy and energetic. The next I am definitely not o.k. I am desperate for good news. I am reckless, edgy, tense. Or I am invincible, daring,... sometimes even a little bit brave! If there is an infection, bring it on! I can fight it again, just like last time. Then I despair again. Did I rally fight the infection if it has come back? Can I really fight it again?

I know that the MRI from December shows something in the bone and I know that my ID specialist thinks that there is likely still an infection lingering in my leg. I therefore went into the bone and WBC scans with the expectation that something would show up that would confirm the presence of an infection.

There is, however, a little voice inside me desperately hoping that the scans show nothing at all.
The bone scan definitely showed increased activity around my right tibia, but I could not make out the images from the WBC scan this morning. I am left here, waiting, hope still lingering. I pray to what ever gods there may be that the MRI is wrong. That whatever showed up on the MRI is nothing to worry about. But my MRI from December 2014 should not have looked like the one from October 2012. Things should have healed over the last two years. I need to stop thinking about this. My mind runs in circles, endlessly, infinity going, clinging to thoughts, both comforting and irrational. I don't want to know the results. I am limbo and everything is  alright here in this middle place, between scans and results. I can stay here forever, just waiting. But I can't. There is a part of me that wants to know, needs to know so that I can do something. Anything. Action is better than not knowing. At least I would feel empowered and in control.

On Wednesday, when I cam home after the first part of the WBC scan, I called my mum. I told her about all these feeling I am having. She came up with a really good explanation of what people go through when they wait for scans. She said that this in-between period is like Schrodinger's cat. While the box is closed, the cat can be considered both dead and a live. While waiting for results, a patients can be considered both sick and healthy. I can see myself as being both disease free and having chronic osteomyelitis. I can fill the roles of both patient and healthy individual. I am in limbo, a delicate balance, waiting for one phone call, and that call will throw everything into either normalcy or chaos.

I don't want to be ill - nobody does. But the role of patient is so so so familiar, so easy to slip back into. Life becomes simpler - you take your medication, comply with a treatment plan, show up for appointments and scans that other people arrange for you. When you are ill, you accomplishments feel even greater. I find myself hoping both for health and an infection. I want to be healthy, like anyone else would. Life is going so well at the moment, but if the infection is back, I don't have to worry about every twinge or spasm in my leg anymore. I think I am just afraid that if the results are favorable that I will feel like I have wasted everyone's time, even though I know that I have a valid reason to get all these scans. Heck, the ID specialist herself said she thinks it is very likely that the bone infection is back.

In 2011, when I was finally given a diagnosis after 6 years, I was relieved. It wasn't all in my head. I could get treatment and get better. It is so much worse now, waiting, nine years after this all started. I got treatment, I went through several surgeries and IV antibiotics and a PICC line, I took countless pills, had innumerable scans and appointments. I had a goal to cure the infection, and I reached it, and then I had a goal to get my energy and strength back, to continue with life, and I did those things! Now I look back in time, at how hard it all was, and see how far I have come. Having to goo back now would be so much worse.

I just hope that everything will be o.k. Please let the infection not be back. I can physically handle anything that happens, but I can't do the emotional, mental part again. I need to be healthy. That is all I want. More surgery? No problem. Another PICC line? Bring it on! Pills and appointment? Why not!
But not the part where your perception of yourself changes, from healthy to ill. And not the worry that comes with scans and negative results.

I have sat here, waiting for results, so many times before. It never gets easier, and you never get used to it. The fear of the unknown and the desperateness don't go away. Many things in life become usual, but this is not one of those things. I hope my ID specialist calls tomorrow. At least if I know, I can do something about it.

Pictures of me leg

This is my leg in April 2012, about twenty minutes before I had surgery to remove the dead bone from my tibia.

These following two are pictures of my leg tonight. The open sore type things are typical of chronic osteomyelitis. The bigger spot on the right of the scar is the one that popped up last night. I can feel the skin stretch as more fluid begins to collect in my leg. Occasionally it throbs a bit.

Oh, and here is a picture of me. Good to show how much healthier I look now versus 2012 after I had been on antibiotics for sixteen months.  I know the background is a mess... just got back from my visit home for the weekend. I have all my textbooks, clean laundry, and groceries to out away.

In between Scans

I came home for the weekend late Friday afternoon. I was exhausted. Nursing school is amazing, I love it, but it is super busy and non-stop (BTW did I mention that I am in nursing school?!). Sleep and personal life no longer exist.

When I came home on Friday I was not feeling well. I chalked it up to sleep deprivation and a stressful week. I had an online quiz on the Sunday (25th) for lab, another quiz on Monday for Health and Healing, followed by a big scary anatomy and physiology test on Tuesday (It wasn't that hard really... I don't know why everyone freaked out so much. I kind of enjoyed it XD).

Wednesday was supposed to be an easy day. Just lab in the morning. Except I got in an argument with my roommate (long story... I won't go into details, but I will say that after living with her I have never felt so normal and well adjusted in my entire life). I am moving out at the end of March, right before final exams.... more stress.

I did not sleep well Wednesday night - a combination of stress from the argument with my roommate and the bone scan I had on Thursday. It did not go well. I won't get the results until late this week or early next week because I still need to have a WBC scan on Wednesday and Thursday this week. I have, however, had these scans enough times before to know when something is good or bad. I also know that I have never been in a room having a scan with so much tension before. I left feeling worn out and antsy. I cried on the bus ride home.

So by the time that Friday rolled around I really wasn't feeling well. My leg hurt a bit, my head hurt, I had dark circles under my eyes, and I was starting to get chills. I went to bed early and slept late for the first time in a month.

I took Saturday easy. I slept until about noon. I went to run some errands and to the outlet mall with my brother in the afternoon. By the time we got to the outlet mall, my leg was starting to bother me. I thought nothing of it, that it was just sore after spending so much time sitting and studying. But the pain didn't stop, it just kept going an going. My brother and I got home around 5pm, and I immediately took some painkillers, which seemed to help a bit. I had dinner and I did about four hours of anatomy homework. My leg still hurt, I felt nauseous, and the chills persisted. I was miserable.

I wanted to go to bed just before midnight. I went to the bathroom to brush my teeth. I have no clue why, but I decided to look at my right leg.  Behold a red shiny lump next to the scar on my shin! I poked at it... top layer of skin kind of just slid off. Not a lot a skin, but then no skin should slide off at all. I was to tired to deal with it. I went to bed, and lay there for what seemed like hours. My leg throbbed a bit, I could feel fluid collecting and stretching the skin from the inside out. I thought maybe the spot would be gone in the morning.

Morning comes around. Spot still there. Red, puffy, a little bit hot. Not a really big spot, but a spot just the same. Still tired, still a bit nauseous. I cried a lot to day. I don't want to have to do this all over again. I don't want this nasty icky infection inside of me. I am to busy to deal with it. I need to focus on becoming a nurse, not being the patient, again! There were so many tears. Such a antsy feeling in the pit of my stomach, waiting for the WBC scan later this week.... knowing it will likely reaffirm what my doctors and I already know from the latest MRI. While my classmates get to learn about restrains and proper body mechanics this week in lab, I get to have my blood taken, mixed with a radioactive tracer, and re-injected into my body, and then have a scan of my entire body to see what is going on in there. Not fair.

I am emotionally a mess. I am sad. I am angry. I am dejected. I am all these feeling bunched up inside of me, making me feel horrible and icky and and and....This all started nine years ago. When is enough enough? I don't want to be the patient. I want to be healthy. I want to be the nurse.