Physiology, It’s Not An Exact Science

I know. Annoying, isn't it? Welcome to Dizzy Lorna's world.

Lorna’s world is spinning and this time she doesn’t know why. What’s happening?

Our brief roles as fairly Equal Adults in the Chuck and Lorna Show ended and we were recast as Mysteriously Afflicted Invalid  and Heroic Health Advocate. Not that I minded to a certain degree. I definitely needed someone to drive Ms. Dizzy to doctor appointments. And the idea of a brain tumor distracted me from asking pertinent medical questions or remembering pertinent answers. But I was still able to function remarkably well on a daily basis, having had all that practice years ago at pretending I was sober when I was totally loop-de-looped. Actually, that’s exactly how I felt. I’d been sober for over seventeen years and was feeling constantly drunk, buzzed, a permanent resident of Bed-Spin-City. At least I had a way of describing my dizziness to doctors so they would understand—at least the doctors who drank, which I suspected were most of them.

I'm pretty sure these were real doctors who just played mischievous actors on TV.

The dizziness baffled everyone and really annoyed me, but the brain tumor was my personal rainmaker. The tumor was …

  1. …real. Not big, but visible on fancy scanners, therefore not just in my head—well, it was in my head, but not just in my imagination. Doctors couldn’t see my dizziness and started to wonder aloud about depression and anxiety, which only saddened and worried me.
  2. …dramatic. Lots of people get dizzy for lots of reasons, but brain tumors are jaw-droppers. People say nice things about you before you die when you mention you have a brain tumor.
  3. ….prophetic. When I was young, I convinced myself I would develop a brain tumor and die a theatrical “Terms of Endearment” type death. Blame it on the mind-splitting migraines I developed at five years of age, my melodramatic nature, or some pretty awesome psychic ability, but I kind of “knew” my brain would turn on me, sooner or later.

The brain tumor was on my mind a great deal. I grew as attached to it as it was attached to me. So when the first neurologist we saw told us it was “nothing,” I was insulted. He called it a Meningioma, “just a pea-sized mass” that was lodged between my skull and the sheath that covers my brain. He’d just crack my head open and it would, “pop out and roll onto the floor.” Well, la-de-flipping-da. Dr. Buzz Saw wasn’t going anywhere near my precious tumor brain. I wanted another opinion from someone who took my tumor a bit more seriously than a flying vegetable.

No thank you, Dr. Buzz Saw. Hand over my head and allow me to exit with my brain and tumor in tact.

Dr. M became my permanent neurologist. He was professional, astute, personable, and believed in both my dizziness and my brain tumor. While he told me I should go see an actual neurosurgeon for the tumor, he diagnosed my dizziness as “Basilar Artery Migraine” and gave me medications notorious for helping with such illnesses. Chuck and Dr. M spent lots of time arguing about my diagnosis while I listened and the room whizzed around me. Chuck, being a financial guy and expert on me, thought Dr. M was wrong; Dr. M, being a neurologist and having treated similar cases, felt he was on to something. I was the silent patient, patiently waiting to see who would win the argument. It was a draw.

Need I say more?

Chuck needed another opinion on the dizziness and I needed someone to tell me my brain tumor was dazzlingly ominous, so we went to two  major medical centers in Boston. The results:

  1. After ruling out everything from AIDS to Lyme Disease, the best medical minds in Boston decided I had Chronic Fatigue Syndrome (CFS) even though the only thing I was tired of was all the blood tests and diagnostic procedures involving spinning me around and blasting me with strobe lights. CFS is what you have when doctors don’t know what you have.
  2. After several fancy imaging procedures that also revealed an anomaly in my basilar artery, the neurosurgeons believed that my tumor was a Meningioma, but they should scan me every six months to watch it and see if it kicked moved or grew. I wondered if we should give it a name. They would decide if and when it should be removed. Maybe they would even tell me.

In the meantime, I didn’t skip a beat as a successful college professor, mom, and patient wife. I was able to drive short, familiar distances and feed and dress myself. If I closed my eyes, I fell over, so I made sure not to close my eyes while teaching or driving—something I learned wasn’t a good idea anyway. For added excitement, I developed chronic nausea (from feeling like I was stuck in the spin cycle of an industrial Whirlpool washer) and a vigorous case of insomnia (from…oh, why not?).

Hey! I'm already pure as the driven snow. I don't even swear. I can't be any cleaner. Please let me out of here!

What was a dizzy Lorna to do? That’s when I began writing funny stories about my childhood. That kind of writing was therapeutic and safe. It reminded me of a time when I was almost “too healthy,” gave me something to laugh about, and (should Chuck stumble across what I wrote), I wasn’t writing anything that could get me into any trouble.

Like I needed more trouble…

Is more trouble brewing? Is Lorna too dizzy to notice?

~ by Lorna's Voice on October 17, 2011.

22 Responses to “Physiology, It’s Not An Exact Science”

  1. Gee, Izzy, I’m sorry to hear that. We all have our “somethings” to deal with, don’t we?

  2. Isn’t it interesting the way you can learn to bond with an illness? It’s like it answers those questions you had so how can you let it go. But … I know what you mean about battery of tests. they can be gruesome. You become ill from the idea of them. I have had sdvere headaches and dizzyness from time to time. I was physically abused as a child so I had a lot of head injuries. I, often, wonder if my brain has lots of little bruises waiting to say to doctors, “Hey, come on in and join the party”.
    Toodles,
    Izzy

  3. When Chuck and I had a common goal, we linked arms and were solid. The common goal was “fixing” my health problems–something I was as much invested in as he was. Since he was a natural leader and problem solver, he took lead the way; since I was so freaken dizzy and worried, I (once again) let him and was grateful for such an enthusiastic health advocate. He became very protective of me (as did my whole family) and it was comforting.

    How did I deal with the uncertainty? I read as much as I could and we kept going to different doctors looking for more detailed or different explanations for the growing number of symptoms as the months passed. I also tried to resume as “normal” a life as possible–working and home life–just to prove to myself that I was still me, only a dizzy version of me. I even tried new things just to show the world that I wasn’t going to let this thing stop me. I’ll be writing about that whole effort and how it worked out next.

    Thanks so much, Phil, for being such a loyal and interested reader. Your questions are helping me to know what things I’ll have to include in the book. You will definitely see your name listed among the Acknowledgments.

  4. Thanks. There was A LOT more crying than laughing when I was going through all of this–believe me. But eventually I learned to manage the symptoms and realized that many people have health problems a great deal worse than mine.

  5. I think that after all that laughing and crying you came out the other side really well Lorna, sometimes it is very difficult to know what will happen next, but after all your worries and fears I can see that you have conquered, of course the dizziness is still with you but what a brave lass you are Lorna 🙂 Do have a most delightful rest of evening my friend…

    Androgoth XXx

  6. I’ve been away for a few days so I’m taking in these posts one after another, almost as though they are chapters in a book (imagine that!) and the story is compelling this way, although it doesn’t lend itself to constant comments as well, since you’ve now piqued my interest to read on, and I know there is another installment already waiting.

    How on earth did you cope with the unknown? That is what I am having the most difficulties understanding. And although there were strains on your relationship with Chuck, how did that uncertainty play into how you two related, other than Chuck reverting to a once again lead role, almost regressing to that Father figure thing you mentioned previously?

  7. It was interesting, I’ll give you that! At some point, you look at all the crazy stuff going on and start to either laugh or cry. I did both.

  8. As you know, then, being diagnosed with anything changes how people define you and treat you. Besides having to deal with the symptoms, you have to deal with the emotional fall-out (whatever that looks like on any given day) for you and those around you.

    I’ve never heard of that diagnosis. What is it? I suppose I could Google it…but I’d rather hear about it in your own words.

  9. Am thankful that the subject of this post was in the past because here it is many years later and you are still here. Can’t wait to hear how you have come to terms with such a chronic disease. I remember when I was first diagnosed with Anklyosing Spondylitis. The Dr. ran into be at a restaurant and came up to me to say he was so sorry to be the one to break the diagnosis to me. That statement was the worst thing I ever heard and really shook me up for a while.

  10. This must have been absolute hell. I have no idea how you managed to cope. It seems however that you did far more than cope. I take my hat off to you.

  11. Not to worry Peter. I found a way to drive SHORT and familiar distances without having too much trouble. Also, I lived in a rural area where traffic meant 5 cars. Perhaps it was risky to some extent, but if ever I felt overwhelmed, I had a back-up plan for a driver. The tumor wasn’t related to the dizziness. And Chuck and I were, once again, pulling together to find a “cure” for me, so we were “good.” Well, that’s what it felt like to me, so I wasn’t stressed about that part of my life.

    Thanks for all the concern. That I’m here writing about it is the biggest “spoiler” of the whole story! 😉

  12. The whole thing made me nervous. Yu had so much on your plate what with Chuck Dizziness and the tumour. I’m still boggling that you could drive at all. Sounded risky as hell. I hope the dizzyness is better now. I wasn’t sure whether it was cnnected to the tumour or was “just” part of the migraine. Anyway, You are one tough lady to have dealt with all this

  13. Migraines are quite common and come in all varieties. I’m glad that you don’t have the splitting pain anymore, but the visual stuff must be quite distracting.

    I still get the headaches with pain, but have medication to help. As I write about my life and people like you share your lives with me, I’m finding so many people who are dealing or have dealt with the same or common issues. This is an unexpected consequence of my blogging adventure. I love feeling so not alone!

  14. I too suffered from debilitating migraines for years until I went through menopause and then they stopped–hallelujah! Then I started having “ocular migraines” where my vision becomes impeded temporarily by sparkling, shimmering, jagged lights. Very weird but no treatment necessary. These bodies are very interesting and you are so right–physiology is not an exact science–there is so much that doctors can’t explain.

  15. The “not knowing” is excruciating. Those symptoms, alone, would be dreadful, but having to go through all the testing, talking and deciding on top of it all.

    I’m wondering if you had been on your won, would the situation have been less stressful? Sounds like you wisely listened to your intuition about the first surgeon. I suspect you would have done just fine if you were alone.

  16. I hear you, Tilly. I was expressing how I felt after batteries of diagnostics ruling out everything under the sun and lots of doctors shrugging their shoulders. I’m writing this story chronologically and trying to capture the moments as they were occurring. I was very discouraged and surprised when they finally came up with CFS was their diagnosis. One doctor even told me words to the effect that I used in the story, if not those exact words. Another doctor said it was his “garbage can” diagnosis, to which I to took great umbrage.

    I often felt that my symptoms weren’t taken seriously because there weren’t any definitive diagnostic tests or places to point to in my physiology where they could see my dizziness and eventual other symptoms. Lord knows I know it’s real. I’ve been dealing with a veritable circus in my head and immune system for 10 years. If I didn’t poke fun at this situation, I’d be sitting in a hospital somewhere taking nourishment and drugs by IV.

    As the story evolves, you’ll see how I give credibility to CFIDS as I learn more about it on my own and learn how to make friends with it rather than fight it (thus using up precious energy).

    If in the interest of brevity and levity, I gave the impression that CFS (now CFIDS) is not a real condition, then I will rectify that in my next post in the series. That certainly wasn’t my intention and I thank you for bringing it to my attention. 😉

  17. This is all so frightening. For a month when I was doing homecare nursing at UCSF in San Francisco, I helped with discharge planning on the neurosurgery unit. I could just taste the fear. Life-changing.

  18. Good question, Holly. I’m not really sure. Maybe because I’d had migraines all my life and this was so very different or maybe because he thought it had to be worse than a “simple” migraine explanation. When faced with such a life-changing event like a major compromise in one’s health, all kinds of things go through your head. You don’t just want explanations; you want explanations that fit with your expectations. Maybe Dr. M’s diagnosis didn’t fit with Chuck’s expectations. I was still in enough shock that I didn’t have any expectations–all I hoped for was an end to the dizziness and maybe a reason why it happened in the first place so I could avoid it should it ever happen again.

    Unfortunately it never left, so whatever caused it is still with me… 😉

  19. The docs never found anything wrong with my vestibular system, so no Meniere’s Disease, or related inner ear issues. The only thing they could come up with is a neurological symptom of Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) as they now call it. When I was diagnosed, most of the literature/research focused on physical fatigue. Now there’s a lot more known about the cognitive fatigue aspect to this condition, including problems with focus/concentration and dizziness. Yes, I still have the dizziness (not the tumor) and the tumor had nothing to do with the dizziness.

    I’m so sorry to hear about your father. At least he didn’t suffer a prolonged, painful death. I’m sure it was hard on you to have him die of something so unexpected, but at least he didn’t suffer.

  20. It sounds more like Meniere’s disease… did they find out what was wrong? Do you still get the vertigo (spinning)? Or was it a tumour that had to be removed? (I know, I know – you’ll tell me to keep reading! 🙂 ) Anyway, whatever it was that you had wrong – my sympathies.

    Sadly, my dad died from a brain tumour, so I know a bit about it, though his was pretty-much asymptomatic for a long, long time and we didn’t know about it til just a few short weeks before he died. He fell in the street and broke a rib and if it hadn’t been for that we might never have found out. He’d had no headaches, no dizziness.

  21. Why did Chuck not like Dr. M’s diagnosis? I don’t know what I would’ve done in your case…I might have milked it for all it was worth to not have to go to work…that just shows how lazy I am, lol.

  22. I’m not touchy by nature, but I have to take exception to this: ‘CFS is what you have when doctors don’t know what you have.’

    The Hub has had severe CFS for fifteen years and, while I can and do joke about it, I don’t think that kind of remark is helpful in raising awareness and dispelling the myth that it is all in the mind (though it is neurological) and/or idleness.

    Otherwise, another entertaining post on a serious subject.

Silence can be just what the doctor ordered. You know I'm a doctor, right?

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