Archive for the ‘The Brain’ Category

I arrived at the neurologist this afternoon, after fighting with traffic, with not a moment to spare. And much to my dismay, especially after hearing a woman YELL about how long she’d been waiting, I was taken back within 15 minutes of my appointment time. Considering the hour and a half wait last time, 15 minutes was pretty awesome. My doctor (who is a resident) came in and apologized for being disheveled (which he was), caught up on my chart and started asking questions and doing tests.

He wasn’t pleased with the number of big headaches I’m still having, which is good, because I’m not pleased with it either. He was interested to know that the fast acting med only helped with a real migraine because that lends more support to our belief that these headaches are not migraines.

And then he took a look at my MRI.

I don’t have an evidence of damage from low pressure that we were looking for, but what I do have was something I didn’t expect. It turns out that my cerebellum and brainstem are back to being crowded together in the back of my skull. It seems as though despite having multiple bones in my head removed, there’s still not enough room for my brain. I didn’t get an exact measurement of how far down my brain is hanging now, but it’s clear that things are more squished than they used to be and definitely more than it should be.

So, yea. That.

There’s no really good theory for why. It might be a consequence of low pressure because extremely low pressure can cause brain herniation. And since we know I’ve had chronically low pressure, it’s possible that instead of the enhancements they expected to see, this is the real outcome of the pressure issue.

My neurologist said that he could send me to a neurosurgeon today and they would probably encourage me to have surgery to re-decompress my brain, but he’s not sure if it would help at this point. On the other hand, it seems that eventually I will need to have another surgery unless things stay extremely stable from now on, which seems unlikely.

So there it is. I’m probably going to need another brain surgery.

Fuck.

The only major upside to this that I can see, at least tonight, is that my neurologist is convinced that the chiari HAS to be a part of the 18 month long headache. That has previously been up in the air because surgery should’ve resolved the symptoms related to it. But now that things are going back to a state of squashedness, we can soundly say that we know at least part of the cause for all this pain.

It doesn’t, however, give us any freaking clue of how to treat it. My neurologist and his attending were both incredibly apologetic because they really just don’t know what to do. For now, we’re adding a new medication to the regimen that I’m already on and we’re keeping an eye on the tremor.

We discussed the dizziness/disorientation spells and the best guess they could come up with is that it may have a cardiovascular component. Because my heart races for several minutes after each of the episodes of disorientation, they think it might be an issue with blood flow to my brain that’s causing a part of my brain to kind of short out temporarily. So they’ve ordered a holter monitor and they’re going to watch my heart for a while to make sure everything is good there.

Sigh.

It’s funny, because I went into this appointment today thinking that the most news I’d get was that they still have no idea what’s going on. And boy was I wrong. I learned that we do have an idea of the cause, even if we are still without a solution. I got news that is going to take a while to digest, process and not want to scream about, I got a new medication and I got a referral to have my heart looked at.

This is probably the first time a neurologist appointment has exceeded my expectations. I just wish it could’ve been in a couple less scary ways.

After a 4 month wait, I return to my neurologist tomorrow. When I was there in October he put me on a daily medication, gave me a fast acting headache medication, referred me to an acupuncture clinic and ordered an MRI, in addition to doing a full neuro exam. I was there for like 4 hours, I’m hoping tomorrow will be a little quicker.

The daily medication has been so-so. It does seem to have helped a little with the insomnia secondary to pain and looking at my headache diary, it may have slightly reduced the number of really awful days each month. In November I had 7 headaches of 7/10 pain or higher, in December it was 10, in January 8 and so far in February I’ve had 4. Still a lot of bad days, but maybe slightly fewer than before.

It was also responsible for the supremely obnoxious intention tremor, which while significantly better since I reduced the dose, is still noticeable with some fine motor activities. It has also done a number on my digestive tract, but I’m going to spare you the details there. On the extremely good side, it has made me SO much more level emotionally and so much happier in general. Even for all the bad side effects, I’ve been so grateful for how it has helped me cope with life these past 4 months, that might even be worth all the other crap.

The fast acting medication was awesome the one time I had a migraine. Otherwise it was kind of a flop. I’ll still keep it around for those rare (like literally twice a year) migraine, but otherwise, it’s just collecting dust. The acupuncture never happened because my insurance moves slower than chilled molasses and calling them to find out how things are going is never as simple as it should be. See also, lazy.

And the MRI. I had it done in November and I still haven’t followed up. There are 2 outcomes- everything is fine or everything is not. And the only logical way that it wouldn’t be fine would be if there was evidence of trauma from the low pressure and hey guess what? there’s NOTHING we can do about that. The other option is that my MRI was clean and we are firmly building our home in square one with no idea of why my head has hurt constantly for the last 18 months. Either way, the answer is, well, nothing. The treatment is basically shot number 27,000 in the dark.

And then there’s the other big worry in the back of my mind. I’m sort of afraid to speak up tomorrow about the dizzy/disorientation spells I’ve been having for a couple of reasons. Frankly, I can only have so many diagnoses and issues attached to my medical chart before I just give up and I think I might be rapidly approaching that point. But I also don’t want to mention it because I’m afraid of what it is. I’m afraid of finding out something else might be wrong and having to wade through the process of treating that too.

The bottom line of all of this is that I just want to be a normal 27 year old. I want to go to school, go home and worry about normal, sometimes silly, things. I want to be planning my future, one with kids and a job and all the stuff that I should be able to look forward to. I don’t want to worry about my brain, worry about a future that contains endless days of pain. I want simplicity in my life, and maybe this makes me ungrateful for all the good I have, but it’s still true. I’m tired, and I’m afraid that this appointment will only make that medical exhaustion worse.

I want good news for a change, but I also know the reality of my situation and the history of my pain. So instead I’m steeling myself for tomorrow and hiding that faint glimmer of hope beneath a facade of realistic expectations and desperate frustration.

I finally had my meeting with my mentor yesterday during my long lunch break. My mentor is a wonderful teacher, is very good at his job and has been a wealth of help for me. Each time we sit down he gives me this look of…sympathy or sorrow because he knows all that has happened in the last 18 months. Sometimes that makes it harder for me to talk to him.

He asked me how my head was and I told him. In November, the medication really seemed to help, when I had to drop the dosage from the tremors, the headaches screamed back. I had 10 headaches that were worse than 7 out of 10 pain in December. One out of every 3 days I was essentially incapacitated from pain. And admitting that out loud is harder to do than you might imagine.

Later he asked me what my neurologist’s plans were and what the MRI had shown and honestly, they answer to both is that I don’t know. I have an appointment next month and while I got my MRI in November, I never bothered to follow up with it. I sort of assumed that if there was something hugely wrong, they’d call me. I said I would call, but I just never did. I don’t have any real excuse except that denial is a lot easier than reality.

In denial, I don’t have to think about what that MRI will show. In denial, I don’t have to acknowledge that one of two things will show up- it will be completely normal or it will show enhancements that mean that my brain is starting to suffer damage from the low pressure. And do you know what we can do if it’s the latter? Nothing. We can do nothing. There’s no treatment for having low pressure except all the things we’ve tried. I’m well hydrated, well caffeinated, and I’m not obviously leaking spinal fluid.

The MRI might show that the headaches are a consequence of the low pressure but it won’t tell us what’s causing the low pressure or how to treat it. Stepping out of denial means I have to consider the future, my future. This future.

My mentor looked at me when I explained the situation and said, “you mean, there’s nothing they can do?”

And I just nodded. Because it’s the truth I don’t want to speak, don’t want to face.

There’s nothing they can do. There’s no treatment and there’s no end in sight. I know that I do not face anything tough compared to others who are fighting for each day and I am grateful for all I have, but it doesn’t mean that I don’t need a little time every once in a while to grieve. To grieve a life I’ll never have. To grieve the loss of normal. To grieve a future filled with pain that cannot be helped, cannot be treated, cannot be ended.

I can live like this. I will live like this.

But it doesn’t mean I have to pretend like it’s what I wanted, or that it doesn’t suck.

This is not the life I wanted, not the life I planned for or the life I imagined, but hopefully I can soon crawl back out into the light and remember that it’s a life that I am blessed to have.

I got an email in late December about meeting with my faculty mentor this week (or next) for our biannual check in meeting. Although, for me it’s usually biannual meeting plus 800 emails over the semester for all the 10,000 things my brain usually throws at me. And I was SO excited to meet with him on Friday because I had nothing to report. Nothing except my grades from last semester, which are totally respectable.

So obviously some shit had to find its way to a fan.

I was driving home from school Wednesday and after sitting nearly completely still for the better part of an hour, we were finally up to normal speed. I was three and a half miles from my freeway exit, zipping along at 70 miles an hour in the far left lane when out of no where I got hit with the most entirely debilitating dizzy spell ever. I don’t just mean like, oh, hey, I’m kind of dizzy. For easily 5 or 10 seconds, I didn’t know up from down, I didn’t know right from left. And I felt like I was losing consciousness or at least as though I was losing voluntary control over my body. It was as if I was completely paralyzed to do anything.

I’m not sure I’ve ever been so scared in my life.

I’ve only had this sensation one other time and it resulted in me actually coming alarmingly close to passing out in a hallway at school. It took over 2 hours for my heart rate to find it’s way below 100 that day, and it was blamed on dehydration. I can tell you with absolute certainty that I was not dehydrated yesterday. Not even the slightest bit.

When the dizziness abated and I was able to resume controlling my body at least a little bit, I was about a quarter mile from the exit before mine and I felt like there was no way I was going to be able to not pass out. I got all the way over, got off the freeway and parked my car at the gas station.

I reclined my seat, sipped some water and focused on breathing. Slowly. Air in, air out. Until my heart rate slowed and I felt like I could drive the few miles home on surface streets with relative safely. I made it home in one very upset, scared and anxious piece.

As the evening wore on, I didn’t have any more issues with dizziness, just a normal headache and normal weekday tiredness. I had thought, even maybe hoped, that the dizziness was a migraine aura, but then I had no increase or change in headache, so I can’t imagine that’s the case.

I made it safely to school this morning and was totally fine and then in the middle of the morning, I got a replay of the previous night’s show. And while I am grateful to have been seated in class and not driving a car, it still sucked so very much. It’s something so much deeper than just normal dizzy feelings and it is absolutely debilitating.

I am doing the best I can to not panic, to not assume something is wrong, but it is incredibly difficult. I have had a lot of headaches lately, but I’ve otherwise been managing. And I was so hoping that this semester would be the one where all the health issues finally fully faded into the background and now I’m absorbed by concern. I don’t know if I should be driving (though I did today), I don’t know what I can do to help or what I might be doing that is unknowingly contributing.

I feel like I had things figured out. I knew how to manage my pain, I knew how to deal with the frustration of it, but I am starting to worry that I don’t have any coping abilities left in me. Like I’m literally watching things spiral out of control and I’m just not sure I have the energy to fight another health battle, to deal with another problem.

I just think that at some point enough has to be enough.

I follow a lot of people on twitter, facebook and other blogs who struggle with chronic pain, chronic illnesses and other similar situations. I know that no two people in this realm are alike, and I tend to not be a radical in any of it. I’m just one of those people doing the best I can even with a really unpleasant constant headache. But yesterday I clicked on the home page of a site of someone with chronic illness/pain and I stumbled across a quote there.

“Most people do not realize that as they continue to find things to complain about, they disallow their own physical well-being. Many do not realize that before they were complaining about an aching body or a chronic disease, they were complaining about many other things first. It does not matter if the object of your complaint is about someone you are angry with, behavior in others that you believe is wrong, or something wrong with your own physical body. Complaining is complaining, and it disallows improvement.” – Esther Hicks

I’m going to try to discuss this as calmly as I can. Because this quote made me angry.

I don’t think that complaining all the time is a fantastic thing, but I hardly think complaining is something that “disallows improvement.” I can complain about being in pain, or comment about not feeling well and those statements do not change the way I feel physically. They do not cause me to be in bed longer, to have increased pain or to have more symptoms than I had before I spoke up. Complaining is essentially just the easiest way to acknowledge and describe something unpleasant.

So why is that wrong?

We don’t have to stand stoically aside and watch our lives change because of pain or illness without comment. We don’t have to pretend like it’s freaking GREAT that we’ve had more bad days than good ones lately, and I think the mindset that we do need to be happy all the time is unfair to those of us with chronic illnesses.

I am not writing here to say that there’s no place for optimism in chronic illness or pain. That’s not my point. I think positive thinking is very powerful, but I also think that there’s no shame in needing to vent or complain on occasion. And I really don’t think we should blame people for their pain when they do.

There are things that need to be grieved. There are things that need to be said aloud. There are things that if not said, if not addressed, will fester, and honestly I think that not talking about challenges in life (even if that talking is considered complaining) is what is really going to stall recovery at least mentally.

Acknowledging that things are tough doesn’t cause your white blood cell count to jump, it doesn’t cause inflammatory factors to increase, it doesn’t cause viruses or cancer cells to multiply. But it might allow you to come to terms with what’s going on. It might get someone near you to understand your pain and help you in ways they weren’t before. It might be the first step to getting out of that pain, whether physical or emotional because you finally put a voice to it.

It’s okay to stop pretending that everything is okay. It’s okay to tell someone that things hurt, that things suck. It’s okay to complain occasionally. But I’m not sure it’s okay to tell others who are hurting that they are making their pain worse, that they’re stalling their recovery simply by acknowledging that pain. I don’t think it’s ever okay to blame someone for their chronic illness. And I struggle to understand how someone else who lives life with chronic pain/illness, could possibly think that’s okay either.

I am dreading tomorrow more than most final exam days, and not because I have a double dose of tests, but because one of them is going to be psychologically difficult.

Tomorrow afternoon is my neuroanatomy lab practical. The test will consist of each of us performing 2 out of about 20 neuro tests on an assigned partner. And they aren’t difficult tests. I’m not worried about getting a low grade. I’m more worried about failing the tests as the patient.

As it stands, I know in advance that at least 4 of the tests will show abnormalities,and that, in and of itself, is tough to face. But then there’s the partner component. Because my partner has been paired up with me, one of the only people in our class who has a screwed up brain.

And my partner is an incredibly nice guy, but man. He got screwed.

I just keep thinking about how he must’ve felt when he saw the schedule, saw that he was assigned to me. That his test won’t be a simple administering and documenting of negative neuro tests like everyone else. But his test is instead going to be one where he has to interpret hand shaking, where he has to interpret upgoing toes on a Babinski, where he has to figure out why I can’t discern which numbers/letters he traces in my hand.

I am dreading tomorrow because for the first time in a while, I feel like a burden. I can manage my own problems, my pain, my emotions. I know how to do that, I’ve gone through the months of training. But when my problems start extending to someone else, it’s different. And I hate it.

I know it probably seems silly to be worried and upset about this, but it’s bad enough to deal with knowing that my brain is abnormal, it’s worse to see that suck spread to someone else who shouldn’t be impacted by it. Someone ho didn’t volunteer for this, who isn’t family, who didn’t enter a relationship knowing that I’m a little broken.

I’m never going to be okay with breaking others. Even if they pretend like the cracks don’t bother them. Even if they put on a happy face and act like it’s all okay.

Because I know it’s not. Because I put on that same happy face and I pretend too.

1. Curling eyelashes. Which is no longer a problem since I don’t have any after yesterday when I last tried to rip them out curl them.

2. Carrying a full bowl of hot soup across the living room. Spoiler alert: it ends up being an empty bowl and really wet shoes and socks.

3. Straightening your hair with a flat iron. However, straightening one’s forehead is actually quite easy.

4. Typing on an iphone keyboard, hence my twitter typo of “swearshirt” instead of sweatshirt. Though now I really want a swearshirt.

5. Apply mascara to eyelashes rather than eyeballs.

6. Put on a medical alert bracelet. The irony of this doesn’t escape me.

7. Pour a full pitcher of water into a glass. Though interestingly, it’s quite easy to pour a full pitcher of water all over the counter. And floor.

8. Speed dial the person at the top of the list, which just happens to be right near the “edit” button. However, you can easily delete the person at the top of the speed dial list. Twice.

9. Carry a full measuring spoon of salt across the kitchen to the bowl of brownie batter. It didn’t need that salt anyway.

10. Sneak pieces of brownie from the kitchen. Unless you like to eat brownie pieces off the floor, like I do.

11. Get pills out of a pill bottle because your stupid head has hurt like hell every. single. day. since the medication dose was dropped from 50mg to 40mg. Which has made NO difference in the hand shaking.

12. Hang up the neurologist when he tells you that even though your hands shake all the time, he still wants you to take the medication indefinitely because it helps your headaches. And that you’re lucky because this hand tremor isn’t a problem.

13. Stab your neurologist.

It’s sort of perfect that I’m writing this the day after the brain surgery post. And by perfect I mean annoying.

I got up this morning, peed and started the shower like I do every morning. While the water was warming up I began brushing my teeth. And something felt wrong. My teeth were fine, by my arms and hands and legs and just kind of everything felt weak and off, for lack of a better word.

I went and laid down for a few minutes to see if that would help and while it did help the anxiety that was crawling up my spine, things still felt weird. I went about my morning, a little slower and lazier than usual, but I managed to get on the road towards school.

At school I noticed that my handwriting was different, and more difficult than usual. And the arm weakness was just not letting up.

It wasn’t until I got home at 1:30 that I finally figured out that it wasn’t weakness, it was shaking. Whenever I do anything requiring fine motor coordination, that is, using my fingers to do something other than just stay straight or stay bent, my hands and arms shake.

It’s a tremor.

My first thought was brain tumor because I am a drama queen. I did a little bit of research and learned about different types of tremor (mine looks to be an intention tremor) and it wasn’t until I was about 30 minutes into research that it dawned on me. I scrambled to check out the common side effects of my new medication and low and behold, tremor is a side effect.

Sigh.

I’m having an MRI done tomorrow anyway so if it is a massive tumor (which I know it’s not), they’ll see it right away. But most likely I’m going to have to call my neurologist if I wake up and it’s not magically gone tomorrow. And then we’re going to have to have a discussion about this medication.

The thing is, it does seem to be helping my headaches. I am having fewer awful days. I am a happier person because it is actually an anti-depressant. I feel better.

But I also shake. I also nearly pass out whenever I stand up.

I honestly don’t know if I know if I want to stop this medication. I’m not sure headache relief isn’t worth the obnoxious shaking.

But then again, this is only day 1.

Yesterday marked three years since my brain surgery. It feels like it was ten years ago and I find myself frequently re-doing the math because it seems that surely my subtraction must’ve been off. But no, November 27th, 2007 was three very long years ago.

Three years ago tonight I was out of the ICU and in a normal room, thankful that the day after brain surgery had been much kinder than the day of it. I was still scared, still groggy and confused, but I was off all pain killers except Tylenol and I was able to hold both conversations and my food down.

For the next 8 months, the surgery was deemed a wild success. I had almost no headaches, I felt good, normal. You know, aside from the awful haircut. For a long time I felt like I had absolutely 100% made the right decision in having the surgery. But now, 3 years later, the decision doesn’t seem so clearly right.

People frequently ask me if I got better after my surgery. The truth is complicated. I had 8 beautiful months, and then I’ve had 28 that have been a challenge, especially the last 14. We still don’t know if the current headaches are a consequence of chiari, the surgery or just a special heaping of neurological issues. We have spent more than a year trying to figure that out, and the answer is still unclear.

So is the future.

I don’t know if things will be easier in a year. The pain remains merciless, but everything else is already a little more manageable. I’m able to plan for the future again without being overwhelmed by the present. I’m able to get through more days with less tears, fewer fears.

Remembering that I had brain surgery is always a surreal thing. You never grow up thinking that one day you’ll wake up with staples on your scalp and a cow heart lining on your brain. Or at least, I never did. I never imagined that 3 years after brain surgery, I’d still be fighting headaches every single day. I never imagined that this would be my life.

But it is.

And I am doing all I can to make the best of it. I remember the anniversary of brain surgery not to be upset, or angry. Not to be disappointed, but to be grateful. Three years ago I had brain surgery and I walked away from it without any of the scary outcomes. Three years ago I made a decision that gave me 8 months of my life without pain. I got married, I went on a honeymoon without pain. I am forever grateful for those 8 months.

And I am forever hopeful that there are more months like those. Even if the only way to get there is to make more tough decisions. To endure temporary pain. To face more anniversaries.

So. 7 weeks of waiting. It has been a very, very long 7 weeks. And 7 weeks of doubting that there was a doctor waiting to see me.

But there was.

(And for the record, his name was Matthew and his last name was alarmingly close to what I heard them spell out on the phone. It turns out, he’s not listed on the website because he’s a resident. So I’m not crazy, for once.)

He met me in the waiting room, only about an hour later than my appointment was scheduled and 2 hours later than when I arrived (no traffic for once). We did the small talk stuff, then we dove into a really, really thorough neuro exam which started with a game of “repeat the numbers after me” which I failed after the got to 7 numbers. An auspicious beginning.

Then we went through reflexes, poking, prodding, muscle strength, coordination, walking, etc etc etc. And by and large, I’m pretty freaking normal. He was really unconcerned with my opening pressures from the lumbar punctures, which kind of surprised me. I mean, they’re not earth shatteringly low, but they’re not normal for sure. He was generally kind of one of those underwhelmed people, which I suppose is a good quality in a neurologist.

So after he finished everything he went and got the attending physician. They looked over some MRIs of mine and were ready to talk.

Unlike the resident, the attending was quite concerned about my pressure. He thinks that it has to be playing a part. We’re essentially back to the theory that I must be leaking spinal fluid somewhere, which I’m not sure I agree with, but I’m willing to entertain the possibility or at least do the testing (which requires zero needles into my back).

So that’s what we’re doing. We doing a new brain MRI with contrast and they’re having it reviewed by a neuroradiologist who is going to look for some very small and subtle changes in my MRI. And then we’re playing with pills.

I’m going to be taking a prophylactic medication that I took a few years ago but discontinued because it gave me wildly painful parasthesias (tingling, numbness, burning) in my hands. We’re going to try it again, starting a little slower, easing up. It’s doubly useful because it’s taken at night and should make me sleepy which was a big point he made with me today. They’re concerned that lack of sleep and stress are major contributors and that they have to be tackled before this’ll end. So this medication will help me sleep and might potentially help the pain.

They also gave me a fast acting med for when the headaches are completely debilitating, which I will hopefully not have occasion to try soon, but will if necessary. They also want me to eat better, exercise more and continue to stay well hydrated. And finally, they want me to get acupuncture. Which I am still incredibly skeptical about, but the facility they’re referring me to is comprised of doctors who are trained in Eastern Medicine, so I’m willing to give it a go.

And now we wait and see. The appointment was good, and I really like the doctors, but I’m not thrilled about sticking to the low pressure theory. I really think I’m going to get back a completely normal MRI and then we’re going to be chasing the same deserted path that we’ve chased several times before. I think we’re going to take several steps backwards before we take any forwards, and though that it is frustrating, I know it’s part of the process.

You know, patience is a virtue and all that crap.

But these doctors are committed. They have explained that this is a process, one that will take time and energy and doctor’s visits and phone calls. We’re going to play with a lot of meds and a lot of alternative treatments to hopefully find something that at least helps a little.

I’m grateful that the wait is over, I’m grateful for good doctors who listen and work with me. And though skeptical, I’m hopeful that we’re on the right track. Even if it’s one we’ve gotten horribly lost and stalled on before.

Who knows, maybe this getting lost is the first step to being found.

(And for the record, I did proofread this, but I’m running on very VERY minimal sleep, so I’m sorry for all the typos that I can’t see now. I know better, I really do.)