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.

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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.

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.”

Vignettes: Neurologist check up and 2nd Sympathetic Nerve Block

I flew back to New York City for my second sympathetic nerve block and a neurologist check up.

The second block was emotionally much easier because I knew what to expect. My doctor used a thinner needle which took longer, but was slightly less painful. She also made the injection at L1L2, instead of L3L4 where she made the first injection.

There was one moment when I had to remind the doctors that I was fully conscious and perhaps they, for my benefit, could find a different way to say things like “scrape the vertebral processes.” Otherwise, the procedure went well. My doctor still maintains that I am a good candidate for remission and told me to keep up with my rehab.

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My neurologist was pleased with the result of the block. He concurred that it appeared to be doing its job and agreed that if I may see remission if I stay focused on rehabilitation and therapy.

Vignettes: Neurologist Check Up and Sympathetic Nerve Block

I went back to NYC for a routine follow up with my neurologist and for my first in a series of sympathetic nerve blocks.

The neurologist said my CRPS/RSD was “unchanged” since my last visit 3 months ago, but was hopeful for positive results from the nerve block.

The nerve block procedure was not fun, by any stretch, but the results were definitely worth it. The doctor said that it was a success. The next step is to work on a treatment plan, schedule a series of more injections, and hopefully drive the CRPS into remission. Or at least significantly decrease the severity.

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My hope is high and fingers are crossed.

New Beginning: Pain Management

The trips to New York for doctor appointments continue to continue.

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This time I flew up for my first meeting with a pain management doctor to create a treatment plan.

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Here are some snippets of the trip. In reverse. Sort of. Enjoy.