Part 10 : This Is Spinal Tap

On the list of diagnostic procedures, the MRI was now checked off.

Seeing the inside of your brain is an interesting experience; seeing that something is wrong with it is another experience entirely. To actually see pieces of your brain that are literally deteriorating….it’s disquieting. Those images made everything I had been experiencing….the pain, the vertigo, the numbness, the loss of hearing and the use of one of my hands….all concrete. Those symptoms were always real, always frightening. But they were symptoms and nothing more. These images were tangible. This was something; no longer a theory. My brain, the hub that kept the clockwork of my body working in continuous harmony, was damaged, having been attacked by the very body it inhabited. That knowledge held some real gravity.

Based on the evidence revealed by the MRI, Dr. M. felt fairly confident that I did, in fact, have Multiple Sclerosis. Everything fit; there were no holes in this theory…just in my brain. But Dr. M. didn’t mess around. She wanted to completely rule out every other possibility before settling on a final diagnosis, which meant more blood work and a spinal tap.

Ugh. A spinal tap. I’d heard the horror stories and the idea of my spinal column being tapped like some maple tree made me queasy. At least with the maple tree you can enjoy some nice pancakes afterward; I doubt spinal fluid pairs as nicely. As such, I gave into my anxieties and decided to postpone the procedure until after the holidays. It was just too daunting to face and I wanted to delay it as much as possible.

In hindsight, I should have just got it over and done with. If I thought putting the spinal tap off would make it easier to get through the holidays, I was sorely mistaken. I could think of nothing else over the next four weeks and therefore subjected myself to mistake number two: internet research on the procedure. Accounts of everything from horrible pain to spinal cord damage to paraplegia did nothing but amplify my fear. Though many credible medical sites cited these potential risks, they were rare and unlikely. Still, they happened. And that was enough for my anxiety to feed on.

The subsequent holidays were rough. I still hadn't fully regained the use of my left hand and I still had residual pain and numbness throughout the left side of my body. Still, I did my best to stumble through them as best I could. What else could I do? As the clock struck midnight on January 1, 2007, I closed my eyes and made a wish.

* * *

I would not be so foolish as to tempt fate by assuming that things could not possibly have gotten any worse at this point. But fate, it seems, could not simply let me be. The day before my spinal tap, left side of my body still numb and throbbing and left hand still not functioning, I awoke to discover the right side of my face was numb. Upon inspection in the mirror, the right side of my mouth was slightly drooping and when I tried rubbing my lips together, the right side did not move. I also noticed my right nostril didn’t move either, nor did my right eye. I couldn’t even blink it. The right side of my face was paralyzed.

I had just been Punk’d by the Universe. The Universe was off in a trailer somewhere, laughing with Justin Timberlake as they watched me on hidden camera. Fucking hilarious, guys. Seriously.

As my mind was searching for new expletives to do the situation justice, a thought occurred. Isn’t drooping on one side of the face a sign of a stroke? Ugh, was I really back to another stroke scare? I decided that, like before, this was another manifestation of my now-not-so-mysterious illness and since I was seeing Dr. M. first thing in the morning anyway, I would just let it go for today and hope for the best. That night, I had to Scotch-tape my right eye shut to get some sleep.

At 6:00am the next morning, I arrived at Dr. M’s office completely sleep deprived and with a sick feeling in my stomach. Forget butterflies, I had elephants parading through my tummy. I was escorted to the exam room and Nick and I were left alone while I changed into a gown. As I sat on the exam table waiting for Dr. M. to return, my fear finally got the better of me and I broke down sobbing. Uncontrollable, ugly, breath-stealing sobbing. I attempted to pull myself together before Dr. M. returned, but it was no use. I couldn’t stop the tears. I sat there crying as I once did, a frightened little girl who didn’t want to have to get a shot. As Nick hugged me, I felt juvenile. I was too old to behave this way. I told myself that I could handle this. I wasn’t entirely sure that I could, but I kept saying it to myself anyway. It didn’t help.

I was still crying when Dr. M. returned. When she asked what was wrong, all I could muster saying is “I’m scared”. When she asked what exactly I was afraid of, I realized I wasn't entirely certain. Pain? Something going wrong? Both? She then sat down with me and talked me through the entire procedure step by step….what to expect, what she would be doing and when, how long it would take and that she would be talking me through it every step of the way. Dr. M. explained that she’s done this procedure hundreds of times and was very comfortable with it. She also assured me that most people who come in for this procedure are pretty freaked out, but usually leave laughing. I wasn’t sure I bought that last bit, but her reassuring voice and her willingness to slowly and thoroughly talk me through this was comforting and I was able to catch my breath and cease the tears.

I sat on the table, legs folded with my back to Dr. M. Nick stood in front of me and I held his hands with a bone-cracking grip. Dr. M. was first going to numb the area and said I would feel a few tiny pokes and a bit of stinging as the numbing medicine went in. And she was right….the pokes I felt were very small, nothing I would even quantify as pain. As for the stinging, I didn’t really notice that either. But okay, that was just the numbing part. The long, hollow needle that would penetrate my spine would surely be felt.

After barely a minute, she checked to see if the area was numb by gently poking it with a small pin. I didn’t feel anything. We were ready to go. She told me to hold as still as possible and I held my breath, not daring to breath for fear I would move. I grasped Nick’s hands even tighter. Not a moment later, she told me the needle was in and that she was withdrawing the spinal fluid. And a moment after that, she said we were done.

She was kidding, that was it?? I didn’t feel anything! Not a poke or even any pressure. Nothing. I was starting to feel extremely sheepish. Also, I wanted to punch the people who told me their spinal tap was the most painful experience of their lives. Maybe it was. And maybe I just had the best damn doctor ever. Out of both embarrassment and extreme relief, I actually started to laugh. Dr. M. just smiled and with a wave of her hand said happily “See, I told ya!”

Dr. M and I briefly discussed the paralysis that had cropped up on the right side of my face, which she didn’t seem terribly surprised to see. She sympathized and gave me a look that clearly said “oh great, like you needed one more thing!” She told me not to stress, and that the only thing she was really concerned with was my right eye drying out. She gave me some eye ointment to use throughout the day and, with an affectionate pat on the shoulder, said that we’d follow up in a week to see how I was doing and review the results of the spinal tap.

Another hurdle now behind me, another fear conquered. I knew there was still more to come and that there were plenty of obstacles still ahead of me. But for now, I just breathed a sigh of relief and committed myself to movies in bed with Nick for the rest of the day.

Also, I was pretty confident I had earned an ice cream cone.

Part 9: Testing 1..2..3

For the first time in over a year and a half, I was feeling a sense of relief. Granted, it was small and buried under a ginormous pile of anxiety and trepidation, but I felt it all the same. I was reassured that I was finally in the hands of a capable and caring doctor and I believed that we were on the path to some answers. And so began the in-depth diagnostic testing.

First up, an MRI. An MRI (Magnetic Resonance Imaging) is sort of like an x-ray , but radio frequencies and electromagnetic fields are used rather than radiation. And unlike an x-ray, an MRI is able to produce detailed images of soft tissues (like the brain, spinal tissues, joint tissues, various organs, etc.). There’s some other science-y stuff about photons, neutrons and hydrogen atoms, and how the magnetic field and radio frequencies align them in such a way so as to create a detailed image. But who really cares about that? I just wanted to know how the heck this procedure was going affect me.

I had never undergone any sort of medical testing before, short of a throat swab or a blood draw, so this was entirely new ground for me. My only references for things like MRI’s were medical dramas like ER and House MD. Not the best reference for medical procedures, as nothing ever goes smoothly on these kinds of shows (because it wouldn’t be a drama unless someone exploded in an MRI machine, now would it?). Needless to say, I was having a fair bit of anxiety about the unknown of this procedure.

Dr. M. assured me the procedure was completely painless and without side effects. The contrast dye to be used was not associated with any adverse reactions, I wouldn’t have to fast and I would even be able to wear my own clothes as long as they had no metal components (no wire bra, zippers, snaps, etc.). She did warn that due to the narrow size of the scanning chamber, patients with claustrophobia are usually advised to take some kind of sedative prior to the procedure. Was I claustrophobic? I had no idea, but Dr. M. and I both agreed that a mild sedative certainly couldn’t hurt.

The MRI was scheduled for 6:00am on a Friday morning, December 15th. I took my big-ass Valium first thing upon waking and then proceeded to get dressed; Hello Kitty pajama pants seemed appropriate for the occasion. The left side of my body was still fairly numb and achy, but I had regained some use of my left hand and I was able to dress myself without help or a single expletive for the first time since Thanksgiving.

By the time we arrived at the imaging center, I could feel the Valium beginning to work its magic. I was still a little nervous, but I was feeling kinda light headed and tired….like I just wanted to lay down. Conveniently, there was a nice scanning table waiting for me.

After filling out the typical paper work, I was escorted back to the scanning room by a really sweet technician. I was surprised to find the scanning room to be much less clinical than I had expected; wood floors, wood cupboards and pretty striped wallpaper. The MRI machine didn’t look as nearly as scary as I had imagined either. The technician placed me down on the scanning table and covered me with a toasty warm blanket, tucking me in snug all around. She then told me she was going to cover my eyes. I expected a dark piece of cloth or maybe those things they give you in tanning beds. Instead she placed a lavender-scented herbal eye pack gently over my eyes. Wow, serious? This was quickly becoming less like Dr. House and more like preparation for a spa treatment.

The technician also placed noise-canceling headphones over my ears, which would help drown out the noise of the machine and also allow her to communicate with me. She also told me she could feed the radio through my headphones and asked which station I would like. X96, please!

The scanning table was slid into the scanning chamber and I was ready to go. A series of scans were done, the dye was injected and then the scans were performed again. It was pretty loud, despite the headphones, and the rhythmic pulsing noise from the machine made the table underneath me vibrate. There was nothing to do but lay there and chill, so that’s what I did. Every so often the technician would come through my headphones, checking that I was okay and letting me know the length of the next scan. I think I even nodded off at one point.

The entire procedure took just over an hour. It was a lot less frightening than I had imagined and more like a really boring portrait sitting at Olan Mills. And that’s pretty much what an MRI is, minus the annoying family members and cheesy backdrops. And before I knew it, I was done. Nick was waiting for me on the other side of the glass with the technician; he had watched me through the entire process. And even though I was feeling relatively calm throughout the procedure and surprised by the ease of it, it was still comforting to know that Nick was right there, watching every moment.

Four days later, we met with Dr. M to discuss the results of the MRI. She showed us the scans of my brain and spinal cord, which at first glance were pretty cool looking, in my opinion. It’s not often one gets to see the inside of their skull. But then she pointed out the numerous white spots that appeared throughout the brain and spine and explained that these white spots were actually lesions, which is consistent with myelin damage (myelin being the protective sheath surrounding the nerves in the brain and spinal cord). When the myelin is damaged, this causes inflammation and injury to the nerve and those surrounding it. This, in turn, slows or blocks nerve signals that control muscle coordination, strength, sensation, hearing, pain receptors, etc. With a sad and apologetic expression on her face, she told me that this is very indicative of Multiple Sclerosis.

This didn’t come as a surprise to me; Dr. M. had told me she highly suspected MS from the very beginning. I was honestly feeling a bit relieved that she didn’t find a brain tumor or something, though at the same time I think I had slipped into a mild state of astonishment. As I sat there and looked at those images of my brain…my broken, damaged brain, all I can remember saying in response was “okay”.

Dr. M. went on to explain that approximately 30 lesions were found on my brain and an additional 6 on the spinal cord. The numerous areas of damage, and the areas of the brain and spine in which they were located, was a definitive explanation for the loss of function I had been experiencing and why they were occurring in certain areas of the body.

Dr. M. reiterated again that this was most consistent with Multiple Sclerosis, but she wanted to run some blood work and a lumbar puncture (spinal tap) to be completely thorough and rule out any question as to my condition.

Oh man, a spinal tap? *sigh* I appreciated her desire to be thorough and absolutely sure about my diagnosis, I really did. But a spinal tap? Ugh. I’d heard plenty of horror stories about spinal taps, and it didn’t seem likely this procedure would include any warm blankets or aroma-therapeutic components.

Once again, Dr. M. took the time to reassure me. She acknowledged that she’s heard the horror stories herself, but that she’s literally performed hundreds of these and has never once had a patient experience a problem. However, she also acknowledged that I’ve already been through a lot and I’ve been given an enormous amount to process. Christmas was less than a week away, and she suggested that I step away from this for a bit and wait until after the holidays to have the spinal tap done. I was inclined to agree. I sincerely appreciated her understanding of how difficult this was for me and her concern for my well-being.

I honestly didn’t know what to think at this point. It sounded fairly certain that I did, in fact, have Multiple Sclerosis. What that meant for me and my future, I didn’t know. And right then, I didn’t really want to know. I did not yet have a final diagnosis, and I was content to rest in a little bubble of denial and hope that perhaps the blood work and spinal tap would reveal some new evidence that would blow Dr. M.’s theory right out of the water.

Deep down, I knew this wasn’t true. Everything fit and now we had visual confirmation of my MS-addled brain. But I just wasn’t ready to face it. Not at Christmas. The best I could hope for was try and put this out of my mind and attempt to enjoy the holidays with my friends and family as best I could. Though with the knowledge I now possessed, a festive holiday spirit seemed less than likely.

The spinal tap was scheduled for the 17th of January, 2007.

*Note: No stunt brains were used in the making of this post. The images above are really me. Those are the actual images of my brain from the MRI discussed in this post. It really brings out my eyes, don't ya think?

Part 8: The Light at the End of the Tunnel Might Be a Train

It had now been nearly a month since I had been unable to use my left hand or feel any sensations on the left side of my body. My chest and torso was still feeling constricted and I still couldn’t hear out of my left ear. My entire body continued to feel weak, heavy and numb. I had nearly zero energy and was dizzy most of the time. I was barely functioning.

I wasn’t sure how much longer I could take this. And so, after learning there could be a possible connection between my symptoms and several serious conditions, I decided it was time to see a neurologist. I was hesitant to get potentially dicked around by yet another doctor, but I could no longer hope that this was innocuous and I was fearful that there may be some merit to what I had read online. I hoped to God that there wasn’t, but the fact remained that I was getting worse, not better.

I contacted the neurologist that was recommended to me by my chiropractor. Luckily, her office was able to get me in right away as she had recently moved her practice here from Minnesota and was not yet backlogged with patients.

Nick came with me to the appointment and he held my hand as we sat in the waiting room. Given past history, we were both skeptical and apprehensive about our pending experience. Were we about to get blown off once again? Were we going to be graced with yet another doctor who had no idea what to do? Was I about to go all Russell-Crowe-in-a-hotel-lobby at the utterance of another ‘I don’t know’? We were about to find out.

Dr. M greeted us kindly and escorted us back to an exam room. I immediately felt a positive vibe from her and her gentle tone put me at ease. She listened attentively as I described everything I had been experiencing over the past year and a half, making notes and asking follow-up questions. She then performed an exam, testing my strength, coordination, vision and sensations. She continued to ask questions throughout this process, though she did even more listening.

She confirmed that I had significant weakness in my arms and legs, particularly the left, as well as loss of sensations throughout that side. She also noted poor coordination on the left side as well; when asked to close my eye and touch my fingers to my nose, my right finger landed spot on while my left finger ended up in my eye. This wasn’t really news to me, but it was extremely encouraging to finally get some confirmation and validation from a medical professional.

Then, with a slight wince in her expression and an apologetic tone, she told me that this was all very consistent with Multiple Sclerosis.

I was stunned. And I was stunned that I was stunned. Was I really not prepared to hear this? I suppose part of me was fairly convinced that I couldn’t trust medical information found online and that I was being over emotional and naive to believe any of it. And reading about it online was one thing…it was unconfirmed, uncorroborated; pure speculation. Still, the symptoms fit. And to have that substantiated by a neurologist was a bit of a burst to my bubble of denial.

Dr. M. went on to say that this was not a firm diagnosis and that there are several other conditions that can mimic Multiple Sclerosis; it was important that we run some tests to eliminate all other factors. An MRI was scheduled for the following week and she spent the remainder of the visit describing in detail what that procedure entailed.

As we were about to leave the office, she placed her hand on my shoulder and told me to try not to worry and assured me that we were going to get to the bottom of this. I appreciated this gesture. Obviously, I was going to worry my neurotic little brains out, but it was heartening to hear that she wasn’t going to give up on me or just send me on my way without any answers.

As Nick and I drove home, neither of us was sure what to think. We both agreed that even though this was fairly grim news, it was a positive visit. Dr. M. was kind and seemed to genuinely care. And this was real progress. Follow-up was happening; in-depth diagnostic testing was being done. We were moving ahead.

But where were we heading?