...or not.

So. News. Per the radiology report:

My herniation (listed this time as 6 mm when previously 5 mm - chalking that up to human error) is more consistent with cerebellar tonsillar ectopia than with Chiari. According to what I've read though, the only difference is the ectopia is smaller and asymptomatic, while Chiari is larger and sometimes symptomatic. I guess I don't understand the difference.

Very mild disc degeneration that has nothing to do with anything.

The study showed no abnormal CSF flow BUT my posterior CSF space is visibly narrowed and there is an isolated "foci" (hah, big words) of hyperintensity in my left side brain. According to the report this could be from migraines (possibly), diabetes (don't have it), hypertension (not sure if they're talking blood or brain, but I don't have high blood pressure), or vasculitis (not a clue).

They also noticed my thyroid gland was odd: "parenchymal volume loss" is the term they used. Hashimoto's came to mind but I haven't researched it enough to know if that's a possibility for me.

Back to square one. Again. There is *something* neurological going on, but my PCP is just as clueless as I am now. She doesn't think it's something surgical, I can drop Dr. Hahn (hooray!). Multiple Sclerosis was suggested but I refuse to let myself think about it. Next step: call neurologist and make another appointment to be poked, prodded, and squinted at once more. Square one. I hate square one.

Some answers?

Tomorrow morning I have an appointment to find out what the results of my spinal fluid flow MRI was. Thinking about it leaves me breathless: what if they find something abnormal? What if they don't?

If my spinal fluid flow is blocked, it likely means I'll be heading to surgery soon. Brain surgery. If there's not a blockage, we are back to square one. All of my symptoms appeared mysteriously out of nowhere, with no explanation, and no way to resolve them.

The past week has been stressful. Personal issues, relationship issues, living space issues, not to mention my mystery symptoms worsening. A couple of days ago my left foot stopped moving. Just stopped, for no reason. I could feel my foot - it wasn't "asleep." There were no pins and needles. My foot felt a little cold, but that was it. I tried to move my muscles and they simply did not respond. It lasted about five minutes, but it felt like an eternity. I lifted my leg to the couch and gently rotated my foot and pushed on my toes. Ever so slowly, my foot remembered how to work. My toes still have trouble wiggling but at least it's not permanently paralyzed. I'm so, so afraid that it's going to happen again but next time it'll be my whole leg. Then my body. Then my respiratory system...  Sleep comes hard when you're afraid you'll quit breathing and never wake up.

Today my perception of temperature wigged out. I felt like I was burning up, then suddenly felt I was taking an ice bath. The thermometer read a constant 96.0 degrees. I felt dizzy, my head was pounding, my heart was pounding... Not a great day, all in all.

I just want answers. That's all. Some hope that this isn't permanent. Some day I will feel like a normal person again. Where I can go grocery shopping without my back feeling like it's on fire after a few minutes. Days when I can go a full day without a headache, or napping because the pain is too overwhelming to stay conscious one more minute.

Hopefully tomorrow there will be answers... I don't know if I have the energy to hope much longer.

The changing dynamic...

There was a death in our family yesterday. For reasons I won't go into, this means my mother-in-law is going to move in with us.

Don't get me wrong, I love this woman. She has made me feel so welcome in her family. Even if I wasn't married to her son she would be someone I look up to. This whole situation though... Me being sick and out of work, struggling to pay our bills, Phil thinking of getting a second job, our marriage on the rocks... And now my mother-in-law is coming to live with us indefinitely.

The one thing I could always count on was the peace I feel when at home. It's so calm here, there's always this air of tranquility, Now the whole dynamic of our home - hell, our LIVES - is changing and I don't know what it's going to look like when the dust settles.

And the poor woman who passed away. I'm going to miss her. She was so kind to me. The first time I met her she made me feel right at home. She was so thrilled when she found out Phil and I were getting married and I would be joining their family permanently.

How am I doing? I don't know. There's so much work to be done and my body is too weak to do it alone. I am afraid I am going to feel obligated to play hostess when Phil's mom moves in, even though it will cost me spoons I can't afford to lose. (Spoon Theory, look it up.)  I told someone my world was turned upside down when I was diagnosed with the Arnold-Chiari Malformation. Now it's being turned inside out for good measure.

When I moved back to Spokane from Montana in 2007 I was at rock bottom. I used that opportunity to rebuild my life and more importantly my SELF from the ground up. I became the person I always wanted to be: courageous, successful, loving, kind and happy. My hard work paid off and I ended up working toward an amazing career, Phil went from being a dear friend to my boyfriend to my husband, we bought a home and built a little furry family... I was on top of the world. Then I got sick. Things started falling apart. I see rock bottom looming again and I don't know how to stop this downward spiral. I don't want all my hard work to go to waste. I don't want to bust my ass yet again, build up my life to the way I want it, and see it crumble to ruin yet again. I'm tired of fighting to be happy when it seems to come so easily to everyone around me. Life keeps pulling the rug out from under me and I don't know if I have the strength or desire to stand up again.

Like a ghost...

Days like these are the worst. Days when I can't get comfortable, and I wander from the bedroom to the living room to the office. Days where I'm not in enough pain to take extra medicine (and deal with the side effects they inevitably cause), but I'm uncomfortable enough to put aside my books, paintings and various craft projects that typically keep my mind busy. Instead, I wander, like a ghost, biting back bitter thoughts toward people who are out there living their lives fearlessly and happily. I'm the ghost of this house, a faded reflection of the woman who used to live here.

Oh, of course, there's that small voice everyone seems to have, crying out, "This isn't me!" The pain and fear smother her and I continue my circuit around the house: bedroom, living room, office. Bedroom, living room, office.

Bedroom, living room, office.

I didn't choose this limbo. I didn't choose this broken body. I didn't choose this story. Sometimes I wish I had the courage to choose an ending.

Bedroom, living room, office.

Sometimes I find myself gasping for air; a reminder that I'm still bound to this mortal coil. I'm not a ghost, no matter how faded and defeated I feel. I just can't find it in me, sometimes, to want to breathe. I'm tired of the mask I wear, the appearance of strength and happiness. Leave me alone, I want to tend this bitter garden, eat this bitter fruit, and watch my Self shrivel up into a bitter shell.

Progress!

Fantastic! The neurologist poked me and stared at me and then LISTENED to what I had to say. He agreed that I deserve to have the spinal fluid flow MRI and he's going to talk to my PCP and the Neurosurgeon about scheduling it with the other MRIs I have to have. He initially thought I had psuedotumor cerebri (good call, Chad!) but my optic nerves look fine, not swollen like they would be with psuedotumor. He said, "Sometimes someone's symptoms make us go, Aha! those symptoms lead us to XYZ diagnosis. But these symptoms and how they're presenting aren't as clear cut. It could be the Chiari, but it could also be something else."

Finally I feel like someone is willing to listen to me and try to figure this out, not leave me out here in limbo wondering if this is my lot in life and nothing will change it. When he asked if I knew the remedy to having Chiari, I said yes. Decompression surgery. He asked if I'm that eager to have brain surgery.

I told him no, I want to talk to a Chiari specialist and make sure this is what's causing my issues. But I also want an end to this daily suffering, and I want to halt any further nerve damage as quickly as possible. He looked surprised that I had a well-thought-out answer.

Long story short: the neurologist can't think of anything that these symptoms could be, other than Chiari, but he's not 100% sure it's the Chiari causing these symptoms, if that makes sense. He is going to coordinate with the neurosurgeon and get me the test I need to determine how bad, really, the Chiari is affecting me.

It's such a great weight off my shoulders. I feel like we have a direction now. Things are starting to move, oh so slowly, but they're MOVING.

Thanks to everyone who has been keeping me in their thoughts and prayers. Sometimes it's so lonely here I feel like I'm going to suffocate, but then I realize I'm NOT alone. I have friends out there rooting for me and it keeps me from going too insane. :)

my neurosurgeon...

...is obviously not the right doctor for me.

I finally had my neurosurgeon's appointment this morning after waiting seven weeks for someone to see me... and what a letdown it has been. She was so focused on calling me fat that she glossed over the Chiari. Yes, I have Chiari, but she thinks because it's only 5mm it's a "mild" case. When I told her I had been reading up on it and it's not the size that matters (heh) but the spinal fluid flow, she said I didn't present any symptoms of a spinal fluid blockage and I shouldn't be reading things on the internet because I might start thinking for myself. I told her I hadn't had a CINE MRI and she said she doesn't order those because insurance usually won't pay for them. The business of medicine strikes again!

She also said all of my symptoms except the headaches (tinnitus, sleep apnea, balance issues, aphasia, memory issues, pain/burning in my neck & shoulders, vertigo, and on and on...) are all because I'm SO FAT. And she wouldn't do surgery on me because I'm SO FAT it would GUARANTEE complications. And I should see a morbid obesity clinic because I'm SO FAT. And we need to check for heart disease and blood clots in my legs because I'M SO FAAAAAAT! And she wants to do an MRI of my neck to check for a syrinx that she doubts is there but I may not fit in the MRI tube (even though I already have) because I'm FAAAAAAAAAAAAAAAAAAAT. And if she DID have to do surgery, I wouldn't be able to lay on my stomach for long enough for her to do the surgery BECAUSE OF THE FAT!

Did I mention how disgustingly, massively, blubberwhaley I am according to this neurosurgeon? (For the record, yes, I'm overweight. I've always been overweight. Before the sudden uptick in symptoms, I had started walking every day, doing yoga, eating healthy, cutting back on medications I felt weren't necessary... I lost almost 15 pounds. Now I'm practically bedridden. How am I supposed to lose weight when standing up makes me dizzy and my vision go gray?  We ordered a set of resistance bands so I could lay in bed and use them as I felt up to it. It's not like I go to McDonald's every day and lay on the couch covered in french fry crumbs! I still eat a gluten free diet and drink lots of water and cut soda out almost completely. But I don't have high blood pressure, high cholesterol, diabetes, thyroid problems, or any other "fat" diseases. The pain and headaches slowed me down, and I started gaining weight. The disease caused a lot of the fat, not the other way around.)

She ordered another MRI, doppler on my legs, and is sending me to the ophthalmologist because she "doesn't see any indication of double vision." Apparently me telling her I have double vision is lies all lies.
Phil wants me to give it a month with this neurosurgeon and see where this path leads. I want to smack her in her smug mouth and find a different doctor.

God, I'm so disappointed. I thought things were finally starting to look up.

From the bed...

Doing better, emotionally. Between encouragement from unexpected sources to a neurosurgeon appointment this week, I no longer feel like I'm drowning. I've got a direction now and things to do to prepare. It feels good to know someone will finally talk to me.

That said... God, this pain is miserable. I made it through my sister's wedding ceremony but ended up leaving fairly quickly afterward. I was her maid of honor. I was so embarrassed about my limitations (wearing different shoes because my feet are so swollen, having to cling to the best man as we descended the stairs, and sitting during the ceremony instead of standing by her side) I tried to push myself harder than I should have. Luckily, Phil has been quite the mother-hen, keeping a pretty constant eye on me. He knows when I've had enough but lets me make the final decision about when to leave/what to do. He's usually right but I'm too stubborn to give up control of my life to this disease. The past two days I've been sleeping pretty constantly to recover from the wedding. That's not like me... 

Tomorrow is an appointment with my PCP and the day after is the appointment with the neurosurgeon. Nervous does not even come close to how I feel. What if the NS doesn't believe me? Or dismisses my symptoms as something else? Or doesn't have any experience with Chiari? Or shifts me back to another doctor for whatever reason?

I would appreciate prayers, good thoughts, whatever you please, especially the morning of the 8th. Patience is not my strong suit and I don't know how much longer I can hold out.