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Tuesday, June 3, 2014

According to my neurologist, I'm to report any new neurological symptoms. It's difficult to report anything to my neurologist considering the next available appointment for existing patients is not until November. How f'ing ridiculous is that?

Anyhow, the past few days I've noticed, and this is hard to describe, that my chin and the portion underneath my lower lip seem to quiver for no reason when I relax my face. I use the word "relax" because I typically have some sort of facial expression and rarely have a totally relaxed face. Even when I'm in deep thought, reading, or doing something on my iPhone, I always have a facial expression that requires the use of muscles to generate a facial expression. Granted, it doesn't happen every time I relax my face, but still.

Although this may seem minor, it's still disconcerting. I had a stroke to the left side of my cerebellum resulting in about 50% damage to the left side. So if this is stroke related, why is it affecting both the left and right sides of my chin/lower lip? I'd like to chalk it up to the latest change in my psych meds.

Is this considered a neurological symptom? Do I want to know? I'm thinking the answers may be possibly yes and probably no respectively.

In other news on the negative news front, I received a statement of benefits from my insurance company regarding my ER visit. The cost for my ER visit, including three CAT scans - $12,658! Of that, I'll have to pay 20%. Yay! Add that to the other $12,000 some odd dollars I already owe the same hospital from my ICU stay last year. Unfortunately, the latter balance is 100% my responsibility.

Meanwhile, on the good news front, I won a copy of Stephen King's latest novel, Mr. Mercedes. I had forgotten I entered a contest on his website. I arrived home today and found a package from Simon and Schuster. I knew there was a book inside but had no idea why one would have been sent to me. It's not a signed copy, but hey, I won something! It's the little things that make me happy these days.

Sunday, June 1, 2014

13 Months Post-Stroke

I haven't written in the past couple of months. I've been rather busy.

The first anniversary of my stroke was two months ago. I went back to work for the first time one week prior to that. Unfortunately, I had to start a new job with a different company as my former company did a mass layoff of my department shortly after my stroke. I guess that's one way to get rid of someone on short-term medical disability.

Going back to work was difficult. It wasn't easy getting past the tiredness I felt, and still feel, every day. Fortunately, I don't have any negative after effects as a result of the stroke, just the lingering tiredness, so I can't complain too much.

My husband doesn't understand my need for extra sleep during weekends which irks the hell out of me. I'm constantly telling him he will just have to deal with it.

On the anniversary of my stroke, I relived every single moment of that day. I was even afraid to go to sleep the night prior as my stroke happened around 3 AM in the morning. I recalled how I felt crappy the day before and the dizzy spells I had. I didn't know then that I had already had a vertebral artery dissection.

In hindsight, I realized I must have had the artery dissection approximately four months before the stroke. I can remember dizzy spells starting at that time, one so severe that I could barely walk from my office to my car without feeling as though I was being violently pushed to one side. It was so severe I was surprised I even made it to my car. Once I did, I fell against the car to keep from falling. I did not immediately drive anywhere. I sat in my car leaning forward with my head between my knees for about 30 minutes. The dizzy feeling was unlike any I had felt before and very difficult to explain to anyone else.

A couple of days later I decided I needed to see my general practitioner. I explained the dizzy spells I had been feeling, including the one where I had difficulty walking to my car. He examined me but could not explain the reason for the dizziness. As they had only happened on three or four occasions and none to the extreme of the walking to the car incident, he felt there was no need for further investigation. It did not occur to me to ask for a CAT scan. Apparently it did not occur to him either.

On the anniversary of my stroke I did a lot of thinking, a lot. I wondered, and still do, why I never had any type epiphany or major change in my outlook on life. I think it's rather sad that I haven't. I don't know what I expected, though.

I was 42 when I had my stroke to the cerebellum. I never cried or felt sorry for myself after the stroke. While in hospital, my mother kept commenting that I was the most chipper stroke patient she had ever seen. She kept telling me not to be so chipper or the doctors would think there was nothing wrong with me. No matter that they kept me in the Neuro ICU ward for nine days because of the brain swelling and that, according to the neurosurgeon, I narrowly escaped a craniectomy. I kept thinking to myself that she's a very intelligent woman and why the hell would she think or say such.

Because I haven't had an emotional reaction to having a stroke, my Buddhist friend tells me that's unhealthy and that I will have to deal with it eventually. I'm not sure exactly what he means or how I am supposed to do so considering I'm not a Buddhist.

Really the only reaction I've had, if you can call it a reaction, is being pissed off that I had a vertebral artery dissection followed by a cerebellar stroke. I'm not constantly angry about it, though, but I do think about it every day, at least respective to the artery dissection and my neck. I'm nervous as hell about having anything else happen to my neck. I worry every time I drive that someone is going to rear end me and cause a major neck injury.

I recently had dinner with a friend I had not seen in about eight years. He ran up to me and grabbed me very quickly and firmly to give me a hug. Being that I am only 5'1" tall and he's at least a foot taller than I, my neck bent backward. According to my doctors, I'm not to hyper extend my neck back. My neck started hurting at that moment and hurt throughout dinner.

After three days of it continuing to hurt, I decided to go to the emergency room. Better to be safe than sorry. While there, I had a CT scan to check the artery. I had already had four scans while in hospital and two in the months following. At the six-month point the neurologist said my artery did not heal. As of 13 months after the stroke, it has still not healed. I'm told it never will.

According to the neurologist, I'll be just fine and dandy living with only one functioning vertebral artery. I can tell by the way he tells me so I'm supposed to be relieved. I'm not! I'll constantly worry about my neck. At least the ER doctor, who knew after the last CT scan that the artery did not heal, understood why I'm worried. He said that most everyone who's had an artery dissection feels the same. He didn't make me feel like a head case like my neurologist does. My neurologist is almost dismissive. For that, and other reasons, I need a new neurologist to say the least.

So that's what I've been doing for the past couple of months. Work work work and worrying three hours daily (during my commute from hell) whether or not I'm going to be rear ended by another car. Fun, fun.

Wednesday, January 29, 2014

My Insurance Company Dictates My Bipolar Meds Options

I've recently changed health insurance companies. The new one provides awesome prescription benefits - with one major exception - they will only cover generic psych meds.

Needless to say this is frustrating as hell! I now have to switch from a brand medication that's worked wonderfully for a couple years. Unfortunately, there's not a generic available. Hopefully whatever I change to will work just as well.

I've taken several meds for bipolar disorder over the years but none that have worked as well what I'm having to switch from. So, back to my doc I'll go. It's never fun changing meds; it's like a giant chemistry experiment. Ho hum. Stupid insurance companies.

Sunday, January 26, 2014

A Vertebral Artery Dissection Don't List

I had a major cerebellar stroke as a result of a vertebral artery dissection. My doctors gave me a list of things to NOT do during the first six months while the artery was healing. Mine didn't heal in six months, but here's the list:

- Hyperextend my neck back
- Have my hair washed in a shampoo bowel at a salon
- Be in a car wreck (as though I would have control of that)
- Ride roller coasters
- Play contact sports
- Paint ceilings
- Most importantly: NEVER see a chiropractor

None of the doctors could demonstrate exactly what they meant by hyperextend, but I got the point. I was afraid I could never look up at the stars again. Aside from hyperextension and getting my hair washed at a salon, I wasn't worried about avoiding the other don'ts. To this day, and going forward, I will never lean back and put my head in a shampoo bowel. I stand and lean forward. My stylist doesn't mind as she has other clients who do the same, but for different reasons.

There's a chiropractic office near my house. Their roadside signage reads "We accept ALL cases". It really irritates me. I want to go in and challenge them by saying "would you take me?" No chiropractor in their right mind would, or should, touch someone who's had a vertebral artery dissection. That goes for carotid artery dissections too.

Meanwhile, at the six month appointment with my neurologist, he said I could "resume normal activities and live a normal life" and do all of the above - with the exception of seeing a chiropractor. Why could I now do these things after six months? According to my last CT scan (I've had six) my left vertebral artery was determined to be "markedly diminutive and abnormal" and has not changed since the first CT scan. Great, it's still occluded. On a side note, it cracks me up that the radiologist chose the word diminutive; small would have sufficed. The neurologist has no idea why the artery hasn't healed nor if it ever will. According to him, only 1% of artery dissections don't heal. Par for the course considering artery dissections are so rare; vertebral more so than carotid. Considering it hasn't healed, and aside from not seeing a chiropractor, I'm clueless as to why I can resume "normal" activities.


Friday, January 24, 2014

Sarcasm and Humor Help


During my nine-day stay in a hospital Neuro ICU, I wasn't able to keep my sarcastic nature at bay.  According to my parents, I was born sarcastic.



Here are things I said that probably shouldn't be said when being treated for a stroke:



Doctor: 'You've had a stroke.'
Me:  'HOLY SHIT. Oh, sorry for the outburst.'
Doc: 'That's okay. I would have said the same.'

Psychologist  sent to assess me: 'Are you afraid of anything at home?'
Me: 'Only during tornados and storms. I'm afraid of trees falling on the house.'
Psychologist: 'Have you ever done anything to harm yourself?'
Me: "I'm sure my diet and lack of exercise haven't helped.'
Psychologist: 'Will you be worried about anything when you leave the hospital?'
Me: 'Yes, how I'm going to pay the bill.'

A neurosurgeon told me surgery (decompression craniectomy) would be performed as a 'last resort'.
Neurosurgeon upon entering room (looking very serious to give me an update regarding possible surgery): 'Um...'
Me: 'So, do I get to choose the spot where you drill and cut into my skull?'
Neurosurgeon: 'No, we'd do it at the top and wouldn't shave off as much hair as you might think. But, I have things to do this weekend, so I'd rather not have to come in to do surgery'.
Me: 'I'd hate to interrupt your tee time.'
He left the room shaking his head. He didn't appreciate my humor, obviously. 
Fortunately for us both, I narrowly escaped the surgery although he did return to visit quite frequently.

Boss, not yet aware of why I was in hospital: 'How are you feeling?'
Me: 'Pretty shitty. I had a stroke so I won't be in Monday.

My mom: 'Stop being so chipper, people will think nothing is wrong with you!'
Me: 'I think the MRI and CT scans say otherwise'.

The point of sharing these snarky moments - humor definitely helps lessen stress. Despite any possible deficits, I  never thought I wouldn't come out of my nightmare okay.  Granted I may have been the only one who found myself humorous, sarcasm definitely helped me get through it, both during and after my hospital stay. 

Tuesday, January 21, 2014

Why I Fear Headaches

It's been ten long months since my stroke yet every time I have a headache I have a minor freak out moment (actually a few minutes, okay, longer than a few).

A little background... I was violently woken at 3am by my cerebellar stroke. I was fast asleep and then BOOM, I was wide awake. I had very violent vertigo that felt as though my body was spinning out-of-control backward (feet over head) over and over and over again at a fast rate of speed.

I gripped the comforter hoping to stabilize myself, but that didn't work, hell, I couldn't even feel the bed beneath me. I was yelling "Oh my God, help me, help me, help me" to my sleeping husband who had no idea what the hell was going on when he woke.

The entire back of my head and neck were in excruciating pain - worse than any migraine you can imagine. My neck felt as though it had been beaten with a baseball bat and my head with a hammer (not that I have any idea what either feel like, but it's the best way I can describe it).

I didn't go to the emergency room for four days but that's a different story entirely. When I finally made it to the ER, I described the headache (still there but worse) and vertigo in such detail that the ER doc knew something was seriously wrong neurologically. I've read a number of cases where people go to an ER thinking they have vertigo or severe dizziness and are told by doctors, yep, thats what's wrong, when actually they've learned later they've had an artery dissection (vertebral or carotid) and/or stroke.

Anyhow, the point of this post... (and again, I'm not offering medical advice!) Last night I had a headache on the back left side of my head - the side where the dissection and stroke occurred. It didn't feel like a typical headache and it wasn't exactly the same or as excruciating as with the stroke. It's times like these when I wonder if I should go to an ER or if I'm just being paranoid. I struck out the ER option as I wasn't having vertigo or dizziness while doing the "touch my finger/touch your nose" test with my husband.

Should you ever find yourself at an ER for vertigo or dizziness, be sure the doctor performs this test. It was this test that told the ER doc that I definitely had something wrong neurologically. I failed the test as I had Nystqgmus (Wikipedia can show you show what it looks like and describes it in detail). She ordered an MRI and CT scan, but "touch my finger/touch your nose" may have made the difference between being told I had vertigo and to go home rather than being diagnosed correctly!

Saturday, January 18, 2014

Warfarin for Life?

One of the most disturbing things I had to deal with during the first six months following my stroke was taking warfarin; not physical therapy; not having a vision problem; not being unable to drive. I knew PT would help me. I knew my vision would get better. I knew I would eventually drive again. I did not know if I would have to take warfarin for the rest of my life.

Anyone who has or does take it can tell you warfarin was introduced in 1948 as a rat and mouse poison; a pesticide. As such, too high a level can cause internal bleeding and even death - basically how it works as a pesticide. I should imagine you can see why that was disturbing.

Tuesday, January 14, 2014

Did I Take My Meds This Morning?

I'm having one of those days where I can't recall if I took my morning bipolar meds. This is not alarming but rather irritating as I feel more than a wee bit forgetful today. On a minor tangent - both bipolar meds and having a stroke cause memory issues (short-term for me).

How could I forget? I have a system at home to ensure that I take them but I unexpectedly traveled and stayed last night elsewhere. So do I or don't I take them now? I have to weigh the pros and cons - then devise a system so this doesn't happen again. Taking too much of an anti-seizure med (for bipolar) is probably worse than missing one dose but think I need to take it now as I've been a bit hypo-manic lately.

Regardless of your age or reasons for taking any meds, one should definitely devise a system to eliminate those "did I or didn't I" conundrums.

Monday, January 13, 2014

Headache, Neck Ache and Brain Injury, Oh My!

I've always had frequent headaches which I've attributed to stress and/or sinus infections. One day I began having head and neck aches of a different type.

My vertebral artery dissection occurred on the left side. Beginning four months prior to and sporadically until my stroke, the back left side of my neck and head hurt terribly, almost daily. I took any number of over-the-counter medications to combat the pain but it was usually back again the next day. I simply chalked it up to stress and decided I should see a massage therapist; never saw one, though.

I had three or four scary occasions prior to the stroke that were indicative of vertebral artery dissection (one involved trying not to do a face plant in a parking garage on day two of a new job). Each time I felt progressively dizzy with gradually impaired walking ability; more so stumbling. Self-diagnosis (shame on me!) revealed I had occasional but severe vertigo.  I saw my general practitioner but was told he could not definitively say why I was having vertigo. Tests of my heart and whatnot were normal. So, as these dizzying occasions were rare, on my merry way I went until 3am morning day of the stroke (yes it was a VERY rude awakening - pun intended).

Nine months later and I'm still wondering if there was anything I could have done to prevent the stroke.

Saturday, January 11, 2014

Vertebral Artery Dissection, Anyone?

My stroke was the result of a vertebral artery dissection (VAD). A VAD can be caused by any number of innocuous occurrences: hyper-extension of the neck while painting a ceiling; having your hair washed in a shampoo bowl at a salon; car accident; even wild and crazy and/or rough sex.

To my knowledge (covering my ass here - I am NOT a medical professional),  there's absolutely no rhyme or reason as to who can have a VAD.

How about you? Ever suffered, or know anyone who has, a VAD?

Friday, January 10, 2014

Why I Decided to Blog - A Brief Intro to My Brain's Adventures

So why start a blog? Because everyone else is doing it.  Of course that's not my answer. First and foremost, please note that I am extremely sarcastic at times, so reader beware.

And now for a few moments of seriousness... Over the last nine months, I've had more than ample time (too much damn time) to ponder why my brain decided to malfunction at the ripe old age of 42 years. Prior to the last nine months, since 1999, I've been wondering the same about my brain yet for an altogether different reason.

Nine months ago I had a completely out-of-the blue major cerebellar stroke. Fun, huh? Especially at the ripe old age of 42 years. There's more to why and how the stroke occurred but I will revisit that in future posts. Let's just say that, depending on which reference or doc you choose to believe, the odds of what led to my stroke are 1:100k. Geez, I must be lucky!

Flashback to 1999... At age 28, I was diagnosed with bipolar disorder. That discovery wasn't even remotely as shocking as recently being told I'd had a major stroke. So, more on my bipolar brain in future posts too.

If given a choice, which would you choose, being "touched" with bipolar disorder or having a major stroke (cerebellar or other)? Like I said before, I've had a somewhat torturous amount of time to ponder that question and more. And that's the main reason I decided to start a blog.