My father and I drove home. I don't think either of us said much in the car. We got to my condo and I headed to the patio for a much needed cigarette. I think I was numb. When I came back inside, I immediately opened up my laptop and put "avascular necrosis" into Google and began my search. My father was doing the same thing on his iPhone. A few minutes later, Dr #3 called and told me to call Dr #4- his office was going to try to get me in that afternoon. When I called, they actually had an appointment open in just an hour. I remember then calling to cancel my hair appointment. It made me very angry to have to do that. I hadn't had my hair touched since all of this madness started. I had dark roots and gray hair which certainly wasn't helping my pudgy-faced steroid look. I hadn't been able to get my hair done because I couldn't sit for that long. But I finally decided that it was time to do something nice for myself and had made the appointment a few days ago. Was it symbolic that I now had to cancel?
For 45 minutes, my dad and I quickly received an online education about avascular necrosis, or AVN. It was not common. It usually affected men more than women. Known causes are excessive alcohol intake, and long-term high-dose steroid use. About 35% of cases are idiopathic- no known cause. I was a drug addict, but I did not have excessive alcohol intake, and the steroids I had over the past few months, while it was a lot, wasn't long-term or high dose. As far as treatments- well there weren't much. AVN turns out to be a very challenging disease because there is no medical management, and the surgical interventions vary greatly in their success rates. There is core decompression, bone resurfacing, bone grafting (transplant)... The only "successful" treatment is a total hip replacement (THR). "Successful" because it removes the dead bone completely and replaces the joint with a prosthesis. But even that doesn't fix the problem for good, because the materials used for THRs wear out over time. The younger you are, theoretically, the more revisions you will need. The less impact you put on the artificial hips, the longer they last. So depending on how long you want your new hips to last, your high impact activity may be limited.
An hour later we were in Dr #4's office. He was loud and a bit arrogant. But it didn't bother me. My dad was a surgeon, and I had worked with this personality for years. I was actually quite impressed with the time he spent with us. He explained that my MRI showed that my left hip had about 35-40% necrosis and the right side had 30-35%- both of which are pretty large lesions. The regular x-rays showed that the femoral heads were still the correct shape- rounded. When the necrosis gets bad enough, the bone will eventually collapse, which will cause more pain and difficulty with range of motion and weight bearing. Once the bone collapses, the only choice is to do a THR. The choice about other treatments- to avoid or postpone the need for THR- is the controversial one. In his opinion, none of the other interventions had a good enough success rate to justify trying. Basically, his thought was that when the pain got unbearable, the best option would be to do the THR. At this time, this made sense to me.
Dr #4 was concerned about a number of things. First, I was a mess in his office. I was crying and very emotional. I had already been depressed, this certainly didn't help my outlook at this point. He observed this and said that I needed time to let this all sink in and get emotionally prepared for the surgery and recovery. I was a little bit embarrassed- yes I was pretty shaken up. But I am not by any means a weak person in general. At this moment in time, I appeared to be falling apart. I remember him doing something that was pretty powerful- he grabbed hold of my hands and looked me in the eyes and said "Look- this isn't cancer and it isn't a massive heart attack. You won't die from this. And young patients with THRs live as full a life as they did before the surgery."
Second, the pain issues. I was still having sciatica pain. He was concerned that if I had this after surgery, it might negatively affect my recovery and make physical therapy difficult. Third, he knew that I had back surgery just a month and a half ago and said it would be better to wait a bit before jumping into another surgery so soon. Fourth, my smoking. It was absolutely imperative that I quit. Nicotine constricts blood vessels. It could be speculated that my 20+ years of smoking contributed to the AVN- by repeatedly constricting my blood vessels, it could have affected the blood supply to my hips. But more importantly, good healing needs good blood flow- especially when my bone will need to heal well around the implants. In addition to the healing aspect, there are other concerns with my lungs and anesthesia, and the formation of blood clots.
He wanted to see me in another 6 weeks, with the goals to be that in this time period, my sciatica would be improved, I would be mentally prepared to go forward with surgery, and that I would quit smoking. I felt this was all reasonable and made good sense.
Driving home, I felt absolutely exhausted. It was so much new information. I was scared. I was worried. All I wanted to do was smoke a pack of cigarettes. Quitting smoking seemed almost impossible. I was overwhelmed by all of these emotions. I had these horrible visions of me being grossly overweight and wheelchair bound and living in a trailer with a dozen cats on a disability income. Which was totally ridiculous. I went home and got in bed. I didn't really talk to anyone for a few days. I needed to cry and yell and throw things. I needed to go through the emotions. It was sort of like Elisabeth Kubler Ross's stages of grief. This wasn't easy for me. I am a drug addict. For years, I coped with uncomfortable feelings by taking drugs to mask them. I numbed out. That wasn't an option for me anymore. I had to reach down deep, and use the coping mechanisms I had learned since becoming clean. This was the hardest thing I had gone through since then, and it was going to be a hell of a challenge.
By now it was the end of January. This had all started in November. I had my appointment with Dr #3- the third back specialist.
I brought my dad to this appointment. I respect my dad's opinion and I wanted someone else there to ask the right questions and remember what he said. I explained what had been going on with me since I been injured, and we reviewed my MRI and xrays. After a good discussion, this doctor felt that the next step should be surgery. He suggested that he would do a microdiscectomy, to remove the part of the disc pressing on the nerve root. He agreed that I may have nerve pain that continues for a few months after surgery, but reasoned that I have had pain for such a long time anyway, that it's worth doing. He would do the surgery at an outpatient surgery center- it was a pretty quick procedure. I would be walking right afterward and home that night.
I was so happy to be having surgery. It's not that I wanted to be cut open- don't get me wrong. But for so long I had been struggling with everyday pain. The worst part for me was not knowing what would be happening. I am not a control freak, but I do like to know somewhat what to expect or what will happen. A lot of people struggle with this, but addicts have an especially tough time with this. We spend a lot of time and energy trying to manipulate people and things around us, with the false belief this will enable us to control our world. For the past three months, I had absolutely no control over what was happening to my body. I had no idea how long it would last, or what would be happening in my life in relation to it all. So for me, surgery appeared to be (hopefully) the beginning to the end of all of this. I had faith that this would fix the problem and I would be on the road to recovery and get back to living.
Surgery was February 17. It went fine. After the surgery, Dr #3 did tell us that the nerve root looked very red and inflamed, so I should expect to still have pain for a while (possibly 2-6 months!). When I was able to walk to the bathroom and my pain was somewhat controlled, I was discharged home. I got a large back brace to wear. I was told no twisting or bending. The overall pain wasn't too bad, but certain positions were very painful. I could not sit up in the beginning- as time went on I was able to sit for longer and longer periods of time. Sitting to go to the bathroom was the worst. I used a lot of ice, and took the percocet Dr #3 prescribed when I needed it. I was still very worried about my using narcotics, and in the beginning I was trying to hold out and not take them. My family actually had to remind me of the right way to take pain meds: keep a steady level of them in your body, so take them at evenly spaced intervals so you don't get behind the pain and have to play catch up. Things I have told thousands of patients over the years...but I was hesitant. The last thing I needed was to get hooked on opiates. Slowly but surely the surgical pain went away and I was able to return to the level of activity I was at before the surgery.
Four weeks after surgery, I still had pain. It was getting better in my lower leg, but I still had pain, bad pain, in my hip and thigh and knee and shooting down the back of my thigh. I couldn't sit or flex my hip without pain. It seemed to be activity related- the more I was up on my feet and moving around, the more it hurt. By the end of the day I the pain was unbearable. The longer I was flat, the better. But then I was always falling asleep- because I was laying down most of the time. And I am one of those people that the percocet seemed to have an opposite effect on in terms of sleep- it wired me! I spent many nights wide awake (good thing I'm a Law and Order fan!). I tried to get into a daytime "schedule" to at least busy my mind, to give my day some structure. The internet and my laptop became my best friends. I started reading again. I even started knitting scarves. And I am not the knitting type...
At my 4 week post-op appointment, Dr #3 saw how much pain I was in. I could barely sit (and I had to wait in his waiting room for an hour before seeing him!). We decided to repeat the back MRI to make sure everything was healing right and that I had not re-herniated the disc. My dad was with me again, and we both asked the doctor to order an MRI on my pelvis as well. We wanted to make sure that there wasn't something going on below my back that could be causing the pain. He agreed.
A week later I had both of the MRI's and another week later I was back in Dr #3's office. This time my appointment was first one of the day, so we did not have to wait as long to be seen. I had brought my dad along again, Good thing I did, because I was about to have my world turned upside down.
Two weeks after I had seen Dr #1 (I end up seeing quite a few doctors, so I figured that I would just label some of them by numbers...), I was back in the office to review the MRI results. In the meantime, I was going to physical therapy three times a week. I was lucky to have a therapist that knew me very well, as he has been in practice for a very long time and seen me many times after I had injured my back in the past. I have been to other physical therapist over the years, but this one was by far the best. Too bad that even with my insurance, it was $40 a visit.
Dr #1 said I had two lumbar disc bulges, one was significant at L4-5 and impinging on my nerve root. This nerve root travels down through the hip into the sciatic nerve, which reaches all the way down the leg. He suggested an epidural injection. A lot of you know what that is, but basically an epidural is done by an anesthesiologist, usually under sedation. Steroids and numbing medication are injected into the epidural space, which is where the nerve and disc space are. Steroids help decrease inflammation and also help the healing process in general. Goal- disc bulge shrinks up and irritated root heals. The numbing medicine is a diagnostic tool. If, after the injection, the pain is gone, theoretically, you can assume the injection targeted the right place. Sometimes it takes the steroids a week or two to feel the benefits of it. The problem with the numbing medicine is that when it is injected, it can leak up and down to other nerve roots, so it's not a perfect test. Also, usually a patient needs a series of 2-3 epidurals. I had some relief in my leg pain immediately after, but not completely. Two weeks later my pain was unchanged. So I had another epidural two weeks after that. Again, no change. In fact, three days after that injection, I bent over to pick up a sock on the floor and when I did I felt a pull and could barely get upright. Luckily I was steps from my bed and my sons were home. I could barely move. My parents came down to help me because I couldn't even get to the bathroom on my own. I was flat on my back with ice packs for another three days. I was in such excruciating pain that it hurt to breathe. I finally had to take a vicodin to get some relief. Luckily I got better about 3 days later and only had to take a few vicodin.
I called Dr #1 and we discussed options at this point. He said that surgery would would be difficult because the surgery itself may cause nerve pain for 3 months after. He suggested trying another epidural. At this point, I was not any better. In fact, The sciatica seemed worse than ever, and I was already 3 months into this. It was time for me to think about maybe another opinion. So I asked around. My anesthesiologist (who did the 2 epidurals) had suggested someone. So I went to see Dr #2.
Dr #2 spent a good amount of time with me, really
examined me well (Dr #1 really didn't do that). He thought my pain
might be from sacro-iliitis-
inflammation of the sacro-iliac joint that is located in the hip. He
suggested an injection into that joint space- basically same medications
and idea as an epidural, but in a different location. I thought he was
going to have me schedule it with an anesthesiologist but he said he
could do one for me right then and there in the office. I said okay.
My mom had come with me so I wasn't worried about driving afterward.
This injection hurt, a lot. And I can handle a lot of pain. He was moving the needle around deep in my hip trying to get to the right place. At one point, I am 99% sure he hit my sciatic nerve because i felt an electric shock shoot down my leg that literally caused me to jump off the table. His nurse had to hold me down. I was sobbing and shaking, face down into that white tissue paper they put on the tables. I remember it vividly because the paper, wet with my tears, was sticking to my face and I couldn't reach up to remove it because they were holding my arms down. And I remember glancing up at my mom and she had a look of horror on her face. Not fun.
When I left my entire leg from the hip down was numb. I could walk but it was very difficult because I couldn't feel it at all. So since my entire leg was numb, it was really hard to know if it helped me or not. It took away all feeling, not just the pain! We scheduled an EMG (nerve test). Nerve tests help tell if there is nerve damage that could be causing the pain. We also scheduled another follow-up sacro-iliac injection- this time to be done by the anesthesiologist under sedation (thank god).
Two days later, I awoke at 3am with burning pain in my left knee and ankle. Burning from the inside, and a sensation of my skin burning as well. My skin was itchy and flushed on my legs. It hurt so bad and any movement of my legs made it worse. Honestly, it felt like my legs were on fire. I had to take vicodin, this time one didn't touch the pain, had to take two at a time to get any relief. I called Dr #2's office later and spoke to his nurse. She said it sounded like neuropathic pain and that she would tell the doctor but there was nothing to do.
I had a follow up appointment with the anesthesiologist the next day. I was still in agony. In his office, my blood pressure was 156/92 and my heart rate was 122- I usually run around 105/60 and my heart rate is usually 70. He started me on Lyrica (Pregabalin)- it's a med for nerve pain, as he agreed that this pain appeared to be neuropathic.
Another few days later, I finally started feeling better in terms of pain, but I still has this burning sensation. I noticed that I had a rash on the back of my upper hip. It started in the middle and extended in stripe like pattern to the left. It was red and raised, like clusters of small blisters. I had SHINGLES. Crap. What else can go wrong? I had taken care of patients with shingles and knew that it was painful, but I had NO IDEA how bad it was. Now I know. It's bad.
The next day was my Nerve Test/EMG. It was in the same office as Dr #2 so the nurse looked at the rash, as well as the doctor conducting the Nerve Test and they agreed that I had shingles. I had the nerve test, which showed some abnormalities along the S1 nerve. Which really didn't help us because that was not the nerve being pushed on by the bulging disc. Great.
Next trip was to my General Practitioner ("family doctor") to treat the shingles. I was started on an anti-viral, Acyclovir, that I had to take five times a day for two weeks. Ironically, the Lyrica that I started for nerve pain is exactly what they prescribe for the nerve pain associated with Shingles. The next day I awoke with a pasty feeling mouth. When I looked at it, my entire mouth all the way down my throat was covered in a white film. When I brushed my teeth, my gums bled. Now I had THRUSH. Super. Steroids are great but they have serious side effects- one of which is that they surpress a person's natural immune system. This, and all the stress I was under, probably led to my shingles and thrush. I called my GP and he started me on Nystatin mouthwash and Diflucan. The medication list kept growing.
I felt like I was slowly starting to fall apart. I got pretty sick from the shingles- felt like I had a really bad case of the flu. I was in bed all the time. The Lyrica made me very sleepy. I needed a lot of help at this point with the boys as I couldn't drive safely and could barely cook. I was miserable and sick and in pain.
When I showed up 2 weeks later to have that second sacro-iliac injection, I told the anesthesiologist what had been going on. He didn't want to inject the same place again and was hesitant to give me any more steroids at all. He looked at my Nerve Test results and said he thought we should try to inject the S1 nerve since it was the abnormal one on the test and my pain fit that pattern. I agreed. But I didn't get any relief from this one either. I checked in with Dr #1 and we discussed surgery, but he still didn't think it was a good idea. I wasn't feeling too great about Dr #2. The anesthesiologist looked concerned when I told him about the office injection. I wasn't going back to see him.
A
few people gave me names of doctors they had seen and thought were good, and
the same name popped up a few times. I ran it by my sister and she
agreed... so I made an appointment with Dr #3. I was turning into the
patient that I hated treating as a nurse (we used to call them
'doctor-shoppers"- people who would change doctors again and again until
they found someone who would do what they want). I don't think I fit into
that category, I was honestly motivated to finding someone who was committed to
help me get some pain relief and get me back to work and my usual living.
But I was starting to feel like I was in an un-popular category of patients.
This
time was extremely emotionally draining. Being in chronic pain is
indescribable to people who have never experienced it. There were days
that I thought it was all in my head. I felt like people around me were
watching my every move- looking for proof that I was in pain. I had to
respond to invitations or potential plans with "I will try to be there it
just depends on how I feel." I hated that phrase. I had an appointment with my OB-GYN around this time. On the day of my appointment, I was in so much pain that I could not get my legs up into the stirrups. I was crying as my doctor worked with me to get the pelvic exam done in a not-so-traditional way. We talked a bit about what was going on and she suggested I start an anti-depressant. She prescribed Celexa, told me it was a mild mood stabilizer and began to work relatively quickly.
The steroids had affected me. I was wired all the time. My hands shook. I had gained 15 pounds. I had a steroid "moon" face. I hated the way I looked. Months later, my parents told me that the way I looked was so different and so awful that both my mom and dad cried one day after visiting me. People I hadn't seen for a while told me how different I looked. I was
missing a lot of the boys activities- not all of them, but more than I
wanted. I was usually very active with their sports and school
activities, and I couldn't do those things. I felt bad for them, and I
truly missed it. I needed help with so much- shopping, cleaning, laundry,
driving the boys.... and I was not good at asking for help. I was a strong,
accomplished, proud mother who had overcome some huge obstacles in my
life. I had to humble myself (like I did when I was in rehab) and realize
my limits, and ask for help. Once I did that, and realized that people
wanted to help, that they were happy to help me, things got easier. I
actually got to hang out with my folks a lot, and I enjoyed that. I was
home every day with the boys- something I never thought would be possible since
I had to work full time. Things were tough but I was feeling very blessed
at this point for so many things: for having people in my life that cared and
helped, that I had an employer that was treating me fairly and compassionately,
and that I had medical insurance...because the bills were rolling in and piling
up. Mostly I was glad that I was clean and sober so that I could make
decisions with a clear mind and face this all without having to drink or drug
my way through.
I moved into a condo last summer, from an apartment that had quickly grown too small. I was thrilled to live in a complex that was quite beautiful because it was older. It had mature trees and landscaping and large grass areas that were bigger than any yard I could afford. It was a decent size for me- a single woman with two boys part-time. I had neighbors that were friends of mine and that had kids the same ages as my boys. It was literally down the street from my ex-husband's house, which made it convenient, and also close enough to both of the boys schools that they could easily walk or ride their bikes. And I finally had a garage with my own washer and dryer again. Simple things make the biggest difference sometimes. Oh- did I mention that this condo has three stories? As in two staircases? (cue the eerie foreshadowing music...)
Last November I dipped into my savings and bought one new piece of furniture for the new place- a beautiful dark cherry wood wall unit. It was delivered and put mostly into place. I had to make some minor adjustments. It was heavy. And of course after I got it in place, I had to move a bunch of other stuff around. I am usually pretty careful about pushing and lifting heavy things. I have a long history of back and disc problems. I had surgery on my neck about 5 years ago- a three level fusion because of three herniated discs. I have pulled my back out many times which often left me in bed laying on ice for 3-4 days until I could move again. 20 plus years of working as a nurse didn't help it...
But being single and not having another person readily available to help move heavy things is a pain in the ass. Too bad I was not very good at being patient and asking for help. I had plenty of friends who would have helped me. Instead I did it myself. I was pushing my dining room table- it really wasn't that heavy, but awkward to push, and it got stuck on my area rug. The table stopped and I sort of kept going. I felt a familiar ripping pain in the left side of my lower back and couldn't stand upright. I got to the floor in sort of a crawling position up on all fours. I stayed here for about ten minutes, hoping it was just a spasm and would pass. It didn't. So I crawled to the freezer slowly, got my ice packs (yes I always have ice packs handy for this reason...oh- and well I have do have two active boys...). Then I made the agonizing crawl to the couch. It was late, about 11pm, and slowly fell asleep. I woke up every few hours. When morning came, I called my neighbor, who walked over to my place (good thing I had a key outside) and she helped me get something to eat and get me upstairs into bed. By now the pain was down into my hip and left leg- all the way to my toe. The pain was excruciating, but I had had this happen before. Usually if I stayed put and kept icing it, I would get better slowly over a few days.
By the next day I could at least move. I had called in sick to work. My parents were out of the country and Thanksgiving was coming up. I tried to get in to see my doctor right away but couldn't get an appointment. By Thanksgiving, a week later, I was able to move pretty well, but still had pain- and the pain down my leg was worse. With my sister's help (sometimes it's great to have doctors in my family) I was able to get an appointment the next week with a back specialist. I saw him and he ordered an MRI and physical therapy. He also prescribed a Medrol Dose Pack. This is steroids you take by mouth- you start with one dose and then taper down for 5 days. Hopefully the steroids will help any inflammation and healing in my back. In order for me to return to work, I have to be able to pass a "lift test." It consists of lifting 140 pounds from the floor to a table, then lifting to a higher table (shoulder tall) and then carrying it up and down small staircase. Doctor wouldn't clear me for that, so I was to remain off. I had to file for state disability.
I was still in pain. I got around okay but couldn't do much lifting or bending or twisting. The pain down my hip and leg persisted and was the real problem for me. It was nerve pain- burning, shooting, stabbing. I did not take any narcotics or muscle relaxants. With my addiction history, that's a dangerous place for me to go. I managed the pain by limiting my activity and using ice.
The thing with seeing doctors these days is how much time you spend waiting. Before my sister helped me got this appointment, I was told from two other back specialists that it would be 3-4 weeks before I could be seen. From my injury date, it took two weeks before I saw my doctor, and then another two before I could get an appointment for the MRI. Most of my nursing experience was in the ER. I think it's pretty common knowledge that ERs are overcrowded. As a nurse, and especially as a manager, I knew the reasons why. But now I was experiencing them first hand. Did I mention that patience is not one of my virtues?
Lit.
to fire a gun that is held at one's side, beside one's hip. (This
increases one's speed in firing a gun but is much less accurate.) When
I lived at home on the farm, my father taught me to shoot from the hip.
I quickly shot the snake before it bit my horse. I'm glad I learned to
shoot from the hip.
Fig. to speak directly and frankly. (Alluding to the rapidness of firing a gun from the hip.) John
has a tendency to shoot from the hip, but he generally speaks the
truth. Don't pay any attention to John. He means no harm. It's just his
nature to shoot from the hip.
No, this blog is not about shooting techniques...Yes, it is meant to be a direct and frank look into my life, at this particular time. Why now? Well I am currently going through some serious medical issues. And my medical issues involve my hips (ahhhh- the connection!). Thankfully, they aren't life threatening issues- but they are ones that have had and will continue to have significant impact on my life. Experiences that will help define me. They are ones that I never expected, because I have a whole other set of issues that are partly medical as well (and when you learn a little bit more about me, you'll understand what I mean). What I have been going through has tested me and will continue to challenge me for some time. I realized that in order to keep my sanity, I need to keep my mind and hands busy. Idle hands are the devil's playground and dangerous for me. Also, as I have done research on my specific condition, I have found very little information from people that have a similar diagnosis and have faced similar challenges. So this blog is self-serving in one sense, but more importantly, I hope will help others who are experiencing like situations.
I have never blogged before. On my bucket list is to write a book. I have started many times, but been overwhelmed by the thought of writing about my life experiences. Where I do start? Where do I finish? Seems that there is just so much for me to write about that I couldn't narrow it down and focus on just one aspect of it, or one time period... I'll figure that out when I'm ready. Meanwhile, I thought I'd give this a try. I'll spend some time catching you up... and then hope to blog concurrently at some point. I hope you find something of value in this, and are a bit entertained at the same time!
