What Is Pain Management Anyway?

Unless you are, or someone you know well is, burdened with the misfortune of needing a pain management doctor, you probably don’t know what this kind of doctor does. It’s OK. I didn’t know either.

At first, I resisted the idea of pain management because, like, it just means a prescription for opioids, right? Wrong.

First of all, we should differentiate between the pain clinics one hears about in the news and the true profession of pain management. I don’t know anything about the clinics, referred to as “pill mills,” beyond the fact they exist and have given the real field of pain medicine a very bad name.

Pain management is a specialty within anesthesiology. That’s right: anesthesiology. So, pain management doctors are MDs, they completed residency, they specialized in anesthesiology, and then they further specialized in pain medicine. They are highly trained in various intricate and delicate procedures, and concurrently have the best bedside manner of any doctor, nurse, or physician’s assistant that I have ever encountered. It’s a lot of work and effort, and not a profession that one chooses if he or she simply wants to make money writing prescriptions for hard core drugs.

My pain doctor always wants to take the least invasive measures to achieve marked improvements. In addition to the needles through my spine, she makes me work on the psychological aspects of CRPS. She makes me touch my leg with different objects to try to convince my brain that it doesn’t feel like I’m getting a tattoo on top of a road burn on top of a blistering sunburn. I am supposed to play soothing music and turn on an aromatherapy mist while I rub things like a scarf, rubber ball, and a metal ruler on my ankle (I haven’t been able to tolerate the ruler yet). It’s woo-woo; it’s pretty fluffy; it makes me feel like all of this is in my imagination. But it’s not. This fluff stuff is supposed to work in conjunction with the giant needles and the medication. I do the fluff so that one day, I can hopefully wear pants, and so that I won’t collapse in pain if my cat rubs against my right foot/leg.

And then there are the procedures. I only know what has been recommended specifically for me for my condition.  I don’t know if I have told you this already or not, but my all of doctors are the best. My pain management doctor is Dr. Leena Mathew of Columbia Pain Medicine. Columbia Presbyterian is a teaching hospital, so Dr. Mathew leads a team of doctors who are completing their pain medicine fellowship.

An IV was started for each procedure I’ve had done. A doctor starts the IV, and every time it has been fast, flawless, and painless.

They instinctively like to go for that one vein in my hand. It’s so tempting. It stands up at attention without a tourniquet. It’s a lovely and welcoming shade of blue. It is even shaped like a little smile, coyly beckoning the needle. However, having the IV in my hand really hurts. I have to hold my hand in a certain way so that it doesn’t poke up and put pressure on the side of the vein, and that causes it to rub against the tendons and bones in my hand. It’s tricky to concentrate on finagling a less painful position of an IV in your hand while an 8 inch needle is being meticulously threaded through your spine. If you haven’t experienced it, you can just take my word for it. So, the last two times, I’ve asked to have it put into my elbow vein. This vein is much more unassuming and takes it like a champ, never rolling or collapsing. The only caveat is that I can’t bend my elbow because that would put a kink in the IV line. The doctor who inserted the line said to me, “we will put the IV wherever you are most comfortable. We are pain doctors. The last thing we want to do is cause you any additional pain.”

Before my last procedure, I commented to the doctor how easily he started the IV. He smiled, and chuckled a nervous little giggle, and shyly said something like, “yeah, anesthesiologists tend to be pretty good at starting IV’s.” Oh yeah, duh. Good point.

Once my IV is dripping smoothly, two doctors usually walk me into the procedure room and patiently help me maneuver onto the table. It’s a complicated set up. The procedure is done under a live x-ray. The machine is C shaped and can move around my body to take images from different angles. It’s pretty incredible, but tricky to get in there with my boot and IV. Once on my belly with my IV bag out of the way, I am then further encumbered by a blood pressure cuff and a pulse oximeter. It sounds pretty horrible, as I’m sitting here typing it out. The experience is definitely not a party, but my doctors are so kind and attentive and really try to make me feel as comfortable as possible.

And then the needles. I get several shots of lidocaine, increasing in depth, attempting to numb the general area that will accept the big needle. The first time I had it done, they opted for some kind of regular old standard big needle. I felt like an alligator was chewing me in half. The second time, they used a much thinner needle. The thinner needle was easier for me to tolerate, but apparently it is a little more wily than the standard. The doctor had to go more slowly and delicately back it out slightly a couple of times before inserting into the ganglion. The third time, the thin needle was used again, but the doctor remembered exactly how to insert it into my body. The fourth time, most recently, while setting up the x-ray, the doctor placed markers on my back and, off the top of his head, remembered the angle he used for the previous injection. During the procedure, I thought I was still getting lidocaine injections, but the doctor was already in the ganglion. I felt the pressure on my thigh and my leg felt warm and I knew the medicine was going in. I mentioned how quickly they inserted the needle, and Dr. Mathew said that they now know my anatomy and they know how my body reacts and they have tailored the procedure accordingly.

My pain management doctors have learned about me. They know more about me than just my CRPS. They are interested in me as a person, not just a patient. They know how severely this ordeal has affected my “quality of life.” They are all rooting for me and want me to live an active life again. And throughout these nerve block procedures, Dr. Mathew speaks calmly and gently to me. She rubs my non-CRPS leg kindly while asking how I am doing. In the same soft tone, she coaches the doctor who does the injections and explains the procedure to the other doctors in the room. I’ve had the same doctor perform the past three of four nerve blocks. Before and after the injection, we have normal every day conversations: jobs, weather, places we’ve traveled. It’s a tactic to make me feel comfortable and relaxed. It’s nice. I wish every doctor could learn from pain doctors.

The only medication prescribed to me (so far) by my pain management doctor is baclofen to better control the spasms in my leg. (My neurologist prescribes the medications to try to control my misfiring nerves as well as some of the physical symptoms of CRPS.) Opioids have not yet been part of any conversation. My next steps probably include radiofrequency ablasion, with a possibility of a spinal cord stimulator. Everyone (my pain doctor, my neurologist, me) wants me to get out of this without the stimulator. The opioids would come only after all other options (including a remote controlled electric shock machine inserted into my spine) have been tried and after they have not provided long term relief.

I’m in this for the long haul, and my treatment probably won’t stop with the nerve block injections. Remission is the ultimate goal, but in the meantime, I feel confident in my doctors’ dedicated efforts to manage my pain.

Vignettes: Fourth Sympathetic Block, Adjournment, Ballet, and a Blizzard

To an outsider, these trips to New York City may seem light-hearted, “glamorous,” maybe even fun, especially when sped up, when people walk backward, along when there is a catchy song playing in the background.

However, the truth is that I dread every trip. They are horribly painful, stressful, and expensive. I try to distract myself. I find happy little moments and share them with you.

This trip was possibly the most stressful yet. I am involved in several legal “situations” and I am not supposed to reveal any specifics. But, the purpose of this trip was the possibility of a deposition. Yes, I said “the possibility.” The way it works is that I am given a letter many months in advance of a date and a time, stating if there is a proceeding it would happen at then. But no one really knows if it will be adjourned until just prior. Location: somewhere (anywhere) in New York County.

Awesome.

So that I didn’t buy a plane ticket, plan accommodations, etc., for some nebulous thing that may or may not happen, I gave the trip a dual purpose and also scheduled my next nerve block.

The block, because I have the best group of doctors possible, went off without a hitch. It still hurt and was definitely unpleasant. But they have adjusted the placement of my IV line, “learned [my] anatomy,” and use the smallest possible big needle. Including recovery time, from IV in to IV out, the whole thing lasted just under an hour and a half.

I called my lawyer daily leading up to the impending date. As my luck would have it, a blizzard was going to hit on the same date as the deposition. Lovely. I was picturing humping with my cane and boot through the blizzard to some undisclosed location in New York County.

The deposition was scheduled for 10 am on Tuesday. At noon on Monday, my lawyer and I received word that it had been adjourned. For non-blizzard related reasons. Wonderful.

I had a full melt down, on the street, on the phone with my lawyer. This is too much. It is all far too stressful for me to handle. Just when I think I’m on the verge of getting a grip on my life, a blizzard (shit storm) comes my way. I tried not to think about the money wasted staying in the city for an additional 3 days, waiting for something that wasn’t going to happen. But, Jesus. So much money. Money that I don’t have. Money borrowed from my parents.

I called a friend and cried as I talked to her, walking (clopping) through Central Park. I slowly calmed down. Several little moments over the past few days dropped all of the clues I needed to realize it was time for me to find my way to a ballet class. It was a very basic class. Like both hands on the barre basic. In centre, “dancing” mostly consisted of  standing and wobbling while moving my arms and head. But, it happened. And, that ballet class diffused all of the day’s stress and sorrow.

Oh, yeah, that’s right. I’m a dancer, dancing is my outlet, my focus, my love. My determination to drive my CRPS into remission is even stronger now.

I woke up Tuesday morning, and wouldn’t you know it? Yup, there’s the blizzard. Super.

My original flight had been canceled, but the airline rebooked me onto a flight leaving Tuesday night. It was still scheduled and “on time” as of Tuesday morning.

I packed up, got myself ready, and I stepped out into the wind, sleet, and snow, bound for the airport. The E train was a block and a half from where I stayed. Let me tell you, that was the longest, most treacherous block and a half of my life.  My cane saved me a couple of times.

The airport was packed, but all of the people were camping out (literally, laying down, sleeping) by the kiosks. I assume they were waiting for available flights. I’ve never seen anything like it. I, however, being a ticketed passenger on an “on time” flight, hobbled past the campers and through the security checkpoint. I was almost 8 hours early for my flight, and I was the only traveler on the terminal side of security.

The food court was surprisingly open. I bought lunch and some snacks. I made my way to the gate area. Most of the shops were closed and gated, but some of the kiosks were open. There were plenty of airport and airline workers. I felt sorry for them.

Let me stop here for a second to tell you about the JetBlue pods. A very long time ago, I heard about sleeping pods in the JetBlue terminal at JFK airport. I fly in and out of JFK because the AirTrain makes my trips very easy. As you may remember, I switched to JetBlue last year after the alligator debacle on American Airlines. I’ve been casually looking for the pods to no avail ever since. I’ve joked about never seeing the elusive pods.

Guess what? The pods were two gates away from where my flight was scheduled to leave! I bought a tea from the girl at the adjacent kiosk. She said she thought my flight would be canceled; I said I had faith. I took my tea to my pod and I settled in.

I was really grateful for the pod because I was able to recline and elevate my foot. My foot would have exploded for sure if I had to sit all of those hours.

About five o’clock, I began to see other travelers. It was a very promising sign. Around seven, I saw planes landing. The airport was up and running. I was going to be able to leave. And then it was time to board. And then it was time to taxi.

And then it was time to sit and wait.

The plane had been left out during the storm. The engines were icy and had to run for a while. Then we had to drive over to be de-iced by people who must have one of the worst jobs in the world. A dude (male, or female) has to sit up in a cherry picker and squirt down the entirety of the plane. It sounds kind of fun, until you watch it being done in cold, windy weather. Our dude had to keep squirting and squirting and squirting because the wind was blowing the de-icing liquid away from the wings. I watched the frustration, knowing that shaky capsule was probably very poorly heated and poorly insulated. I felt very sorry for our de-icing dude.

We were an hour late to depart, but we made it. I arrived home after 2:30 am.

And, now, here’s my little video that accompanies my story. The video is a “better” representation of the truth, but the truth is still the truth.

Enjoy.

My Past Became My Present: I Danced!

I danced!

Sort of. Here’s how it happened.

On Friday afternoon, while I was updating my doctors on the progress of the last nerve block, one asked if I had been able to become a little more active.  A little. Yes. I still can’t stand, sit, or pretend to be a normal adult person, but I can bend it more, my gait is less troll-like, my leg is getting stronger.

Every doctor I have spoken to agrees that increasing physical activity benefits CRPS patients.

Does this mean ballet? My doctors are all working to return me to dancing in some form. As my neurologist said about the possibility of remission at my last visit: “It may take forever, but it will happen.”

After the procedure on Friday afternoon, however, I hadn’t seriously thought a ballet class would (could) be in my immediate future.

I woke up Saturday and my leg was feeling good. I put on my boot, walked through the park, six blocks to the Westside YMCA, and went for a swim. Afterwards, in the locker room, I serendipitously ran into a couple two ballet dancers I’d known throughout the years. One was Harriet Clark. She was coming as I was going, but we stopped to chat. We talked about old friends. We talked about the good old days when ABT held open company classes taught by Diana Cartier. We talked about how to ‘move on’ from ballet. “I swim.” Harriet said. I smiled and laughed a little, “me too.” I wished her a good swim and was on my way.

Almost on autopilot, I walked from the YMCA on 63rd St. to Lincoln Center. I have consciously avoided Lincoln Center since my injury, but Saturday felt like the right time. I watched the fountain rise and fall. My spirits lifted. I felt peaceful. The David H. Koch Theater was advertising the Paul Taylor company. (Paul Taylor was the first-ever performance I saw in New York City. I was fifteen.) I stood and stared at the giant bronze Degas-esque hippopotamus. She is a new addition to the scene, but nevertheless, she looked down seemingly judging me with enormous eyes.

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Monday was an all around craptastic day. A blizzard was coming. My flight home on Tuesday got cancelled. The deposition, around which I had planned this entire trip, was adjourned. The hotel where I was staying was booked, and I could not stay an extra night to wait out the storm. I was on the verge of an emotional collapse.

I ate lunch at my favorite tea house, which is across the street from City Center. I was supposed to meet a friend that evening, but she texted that she had to cancel. Just as well, I thought, because I had to figure out how to get myself back to Florida.

I spent about 45 minutes on the phone with my airline, they rebooked me onto a flight Tuesday night, arriving just after midnight, Wednesday morning. Going to the airport in a blizzard would not be fun, but I had plenty of time. Everything was going to be OK.

I looked at the clock. It was the middle of the afternoon. I had no plans. I still felt overwhelmed. I did my ankle exercises. My leg felt very good and I had more range of motion than in the past two and a half years.

I looked at the clock again. I thought about what I would do if I was living my regular old life. Without a doubt, I’d go to a ballet class. I felt sad and tears welled. Then I thought about the past few days. My life used to revolve around dancing. There is no denying, it still does: I can’t go anywhere where I don’t see a dance acquaintance, where I don’t have a dance memory, I can’t look at a clock without thinking about which teachers have classes at that particular time. I can’t just keep swimming and pretending that everything is fine. I can’t keep crying about everything that I’ve lost. I have to keep trying. I have to keep fighting for it. It’s mine.

“Fuck it,” I thought,  “I’m going to find a class.”

[Let’s face it: I’m not going to be doing 32 pirouettes en pointe again any time in the foreseeable future. I am not able to relevé on my right leg. It just doesn’t work; it just doesn’t support me. Standing on just my right leg is wobbly. Jumping is out of the question. But, I am allowed to try to start, if I’m smart. I could at least try a basic class…]

Imprinted in my memory are various teachers’ various schedules. Monday evening. Who teaches where on Monday evenings?

One of my all-time favorite teachers, Kat Wildish, has a class on Monday evenings: Absolute Beginner, at Gibney Dance, which just so happens to be in the same building as the ABT studios where I used to dance years ago.

I had no dance clothes, but I did have leggings, ankle warmers, and an undershirt. I carry my technique shoes in my backpack at all times (to remind myself who I am, to remember what I’m working toward, and possibly simply out of habit). I have an arch support and a brace that prevents lateral movement of my foot that I wear when I am not in my boot.  The support and the brace fit inside of my ballet shoe, but only because I was too lazy to properly sew the elastics three years ago (see, kids, don’t ever underestimate the true value of a little time-saving laziness).

I walked a block to the 57th St NRQ train. Waited on the platform at the last car. Rode to Union Square. Got out at 17th St and Broadway. Walked up one block. It was a trip I’d made hundreds of times. It was as if I had transported myself back to 2002, going from the old Broadway Dance Center building to the ABT studios.

But then, remembering it was 2017, it occurred to me what was about to happen. I had been preparing two years, eight months, and twenty-five days for this moment. I’ve kept my body strong. I’ve done hundreds of thousands of ankle exercises. Hours of one-legged planks; one-legged pushups. Countless hours in the pool and on my bike going nowhere. Hoping. Working. Trying. Crying. Waiting. Wishing. Knowing.

I stood for a poignant moment staring up at the numbers 8.9.0 above the doors.

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I sighed and went in.

Everything about the building was the same as it was since the last time I was there: the “fallout shelter” sign above the door to the stairwell, the mandatory sign-in sheet with nobody’s name written, the human-operated elevator with (I’m pretty sure) the same man taking us to our desired floors. The only difference: “fifth floor, please,” instead of third.

I found the studio, paid for my class and went in. I took off my fleece pants revealing my leggings. I took off my sweater. I carefully took off my boot, trying not to have the sound of the velcro reverberate on the studio walls. Curiously, to my relief, nobody gave my giant boot a second glance. I circled my right ankle a few times. It felt good. I could almost point my toe. I put on my brace, inserted my arch support into the slipper, put on my shoes, grabbed my water, and stepped onto the studio floor.

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I was about twenty minutes early. The pianist was warming up. Students were showing up and carrying barres into the center of the room. I looked around and took a moment to think about how I was feeling. Normally, before class, especially a class I’d never been to in a studio I’d never been to, I would have felt anxious. I would have nervously pretended to warm up while I scouted the room for someone I might know, before claiming “my spot” at the barre. But, I wasn’t nervous at all. I stayed where I was, ironically front and center-ish. I knew which muscles needed extra attention before class. I was gentle with my right leg and foot. And when I thought about the feelings, three came to me: calm, peaceful, happy.

All those times I wished to go home, this was the feeling I longed for.

And then Kat came into the studio. It was as if no time had passed, yet it seemed like forever since I’d seen her. She sat on the floor next to two girls who were next to me. I didn’t say anything because I didn’t have words. She smiled at me and then I said this was my first class since my accident. She touched my left leg and smiled some more and asked how I was doing and said she was so happy to see my face and she hugged me and reminded me that I have to work within my new body and then we started class.

The entire barre was done facing the barre, with two hands on the barre. The warm up was perfect: slow enough, gentle enough, and thorough. I was surprised at some of the things my leg could do. I was surprised at some of the things my leg couldn’t do. I didn’t become frustrated, or sad, or angry. I remained happy, calm, peaceful, feeling at home.

Centre was a challenge, I’m not going to lie. I did what I could and giggled nervously when I wobbled. Surprisingly, I found a harmony between my left and right legs. My left leg could relevé and jump. My right had decent extensions, never minding the crooked, half-pointed foot. My upper body knew what to do and the everything felt strangely cohesive.

Here comes the dancing part. There was a pique arabesque balance within the waltz combination. For the record, waltzes are always among my favorite combinations. The right side wasn’t going to happen so I stepped on a flat foot and “practiced” my arabesque line with my left leg in a tendu on the floor for stability.

The left side surprised me. I had a good practice on the right side, I loved being in class, my heart felt so light, and the 3/4 time signature brought me such joy. I was smiling like an idiot, and was not holding back my upper body. I was waltzing like I meant it. And then came the balance.

We all know by now that my balance on my left leg is aces. I piqued into relevé on my very stable left leg. I engaged my thoracic spine, closed my ribs, engaged my lats, lifted my lower abs to support my low back, presented my arms, face, and chest to the very expensive box seats in my make believe theatre, my right leg floated up, directly behind me, and kept rising while I was perched in my balance until the very last moment of the very last note before the next step which wasn’t late, but perfectly timed; and in that moment, my heart danced.

The next two combinations were jumps. I fluttered around in the back of the class, adapting, marking the right leg, enjoying moving my upper body.

Then, the reverence. Class was ending. In my life, I have never been so truly grateful for a pianist, a teacher, lovely and kind classmates, and especially the feeling of dancing. I have never had a reverence mean so much to me (probably because I never had a ballet class mean so much to me).

After class, Kat, a few students, and I walked out of the studio together. Kat was on her way to Peridance to rehearse a piece for their showcase. She walked with me talking to me, interested, concerned about everything I’m going through. We talked about Florida. She told me I can always come to any of her classes, even if I am not able to fully “do” the steps; it is good for me to be there. She was right. She hugged me again before I went down to the subway.

Even as I was saying goodbye to my beloved teacher, not knowing when I’d be able to dance again, I only felt joy and at peace within the moment. For, I have now known true sadness, real loss, and that short amount of time was a gain beyond measure. It is one that I will remember and happily hold onto for a very long time. For an hour and a half, I remembered who I was, I knew who I am. I didn’t feel confused, aimless, overwhelmed, or lost. Although still in pain and only mildly capable, I was safe, happy and at home.

And that, my friends, is my 2100 word essay (with photos) about the first time I danced (sort of) in almost three years.

Vignettes: Third Sympathetic Block & Another Neurologist Check-up

This week, I went back to New York for my third sympathetic nerve block and another neurologist check up.

The nerve block went very well. My pain management doctor said it was one of the best that they’d ever done and that she wanted to put my images in their Hall of Fame because the needle was perfectly placed.

The doctor added a steroid to the cocktail to try to prolong the effect of the analgesic. This may have been the last time they will do this procedure. Depending on how long this block lasts, the next step may be something called radiofrequency ablation. I googled it, and it does not sound like fun. But, it sounds like more fun than the next next step (to which I hope I never get): the spinal cord stimulator. I left the appointment with my images (for framing), packets about the procedures, and an informational dvd.

My appointment with the neurologist was after my nerve block procedure. He said that he can see some very slow improvement in the lateral rotation of my foot, and is hopeful that the boot may be slowly working to correct the alignment issue in my ankle. He said I was walking “a little less like Charlie Chaplin.” Our goal is to avoid surgery, and he said that it is promising as long as there is any amount of improvement, no matter how small. “It may take forever, but it will happen.”

So, today is the day…

So, today is the day, and I am truly overwhelmed by the love, kindness, and support that you guys have given to me over the past few days. With your help, I am 100% ready to get this done.

It is not such a big deal, and I am drawing on the strength of those of you who have had this same procedure done multiple times in the past. I have reminded myself that this is not a heart transplant, or brain surgery, I do not have to be reconstructed, I don’t have a chest tube, and my accident was not nearly as severe as those of you who are reaching out to me.

I feel a little bit guilty for ever being a sissy about it…

This is merely “deep tissue acupuncture,” comparatively speaking.

I found a nice little cartoon that demonstrates the procedure for those of you who have asked questions. Love to you all. Let’s do this.