Waiting with Resources

I finally got a neurologist appointment...in January. 

While on one hand its great I don't need a brain dr asap and I'm not life or death, but FUCK that is a long time to wait to get some answers, or at least get more tests...to get answers. Answers to questions like, do I need brain surgery?

Also side note, I looked up the doctor I'm going to see, and I can't find anywhere that he treats, or has dealt with Chiari before. Not sure what to make of that yet, I mean it's rare enough why boast about it, but shit if you're THE GUY in town, why wouldn't you list it? I guess this is just another question I will have to wait to have answered.

I do have my ENT dr appointment in two days for my sinus, my plan is for him to do the nuclear option on everything. Let's not start with meds and wait and see, then have sinus and nose surgery later. Let's cut, slash, burn. Whatever it takes for me to be able to clearly assess my headaches and rule out sinus pressure headaches.

In the mean time I have learned about good/bad resources for reading and learning about Chiari:

First, stay off Facebook, those support groups are really just the people that are having bad experiences, not to say they are being dramatic, but the softer side of Chiari is not on Facebook and everything is doom and gloom over there.

Reddit. Of course there is a subreddit for it! It is filled with level headed people that have been there, done that. They all have been so nice and informative. Just reading people's stories, after care, their life after surgery has been so wonderful to read. It's nice to read about how it sucked, a dr fixed it, and life CAN go back to normal, or even better than the normal you have gotten used to.

This Youtube channel. Doctors talking to Doctors about Chiari. Sometimes it can be a tad dull, but I like feeling like I am sitting in on these lectures. I like all the stats and charts so I can really be my own Chiari expert.

Current Worry: Sometimes (yesterday) I get headaches so bad I have to go lay down in dark silence, and I get really cold. I also am not sure if I pass out, like black out, lose consciousness style or just fall asleep.

Current Positive: My birthday ruled! Had a day for the record books, and will be continuing the party this weekend with my daughter staying the night at Grandma's and Grandpa's while the husband and I, plus a bunch of friends, are going out and painting the town red!

Diagnoses

Well, shit. I have a Chiari Malformation.

What started as a long ass medical mumbo jumbo word has turned into my most searched google term. I've searched Chiari on everything, google, reddit, facebook and even #chiari on instagram tring to understand what the fuck to make out of it all. And so far I have learned, it sucks.

Long story short if you have Chiari your brian is bigger than your skull and pokes out the back, a lot of the time putting pressure on your neck and spine and it is a roll of the dice on what it wreaks havic on, so there is no one-size-fits-all treatment or even symptoms, and it's just rare enough that even specialists and neurologists have barely heard of it outside of a blurb in a text book and promptly forgotten about.

So this is my story.

I am a sewing blogger (shameless plug). I am turning 32 next weekend, married to a computer guy, and a mother (stay at home mom) of a lovely little 2 and a half year old girl. When hearing the news of this diagnoses my life will, as it seems, be changed forever.

It all started when I was going to the dentist and got the whole head x-ray and they found a cyst in my sinus. Which made sense since allergies this summer kicked my ass harder than in years past. So I go to the doctor, they order a CAT scan and find this little Easter egg in my head along with just about every sinus and nose problem you can think of. I get an appointment with an ENT for Dec 1st to deal with that whole mess and have an MRI done to deal with the Chiari. The MRI confirms it is real (shit), and my big ass brain hangs out on the left side 3mm and 6mm on the right. I am now waiting for my regular dr to send off a referral to a local neurologist (who has "dealt with Chiari before") and they will call with an appointment. It's coming up on a week just waiting for the call for the next step.

In the mean time my squeezed little head has been spinning. It's like someone finally put the last piece of a puzzle together and you can finally see the whole picture. Here is a list of shitty things I had previously thought were just normal or had chalked them up to other things:

• Headaches I thought I needed glasses, I got them, it didn't help all that much. I also thought my allergies were just getting worse as I got older, but as fall came, the headaches stayed. I ALWAYS have a headache to varying degrees.
• Caffeine addict Sure, everyone needs a good cup of coffee in the morning, and a lot of people joke about NEEDING some, but if I don't drink enough I get a headache like no one else. My husband drinks WAY more coffee/caffeine than I do, and if he doesn't hit his limit he just takes a Tylenol and goes about his day like no big deal. I on the other hand feel like my head is collapsing and am on my death bed and am only good to lay in a dark silent room until I get more in my system. From what I've read caffeine increases your CSF production if you have low ICP, now I'm super new to all this, so is my understanding: something something brain fluid production is helped by caffeine.
• Fainting it's only happened maybe 4-5 times in my life and incidents are pretty spread out throughout my life. As a kid and teenager I thought I just got heat stroke because it always happened outside in the summer. Also a few times with really bad lady cramps. 
• Light headed bending over I really thought that happened to everyone and I was just a pussy about it. Even this summer my husband kept his eye rolls to himself when weeding our garden as I took a break after every pull to sit down and get my bearings. I honestly thought I wasn't cowboying through enough. 
• Can't find that word on the tip of your tongue I can have a word, or a name RIGHT there, but when I go to say it...gone. I had smoked a good amount of weed in high school and thought I just smoked myself a little stupid.
• Pressure headaches I get a certain kind of headache like once a week that just feels like I'm in too deep of water. I usually use ear wax removing ear drops that seem to help even the pressure out. I also make a lot of ear wax, not sure if that has anything to do with anything.
• Back pain/neck pain I have been holding a kid for two years now and thought I was just out of shape. Just about every night I need to lay on a heating pad, even though it's my bones/spine that hurt and not really muscle, it still helps.
• Sleep For as long as I can remember I sleep like shit. Falling asleep early for me is 1 am. If you let me, I WILL sleep 14+ hours. I also hear I snore a lot and have scared my husband thinking I stopped breathing.
• Fatigue If I go to Target and then to, say, take my little girl to the park, I'm done for the rest of the day. I have no more energy. I just want to lay down. But on the bright side, I might not be a lazy sack of shit after all! Even just being around a lot of people for a few hours just takes it out of me. I can go to a family dinner and just talking to people and hearing lots of people around me just, takes the wind out of my sails.
• Hands and feet fall asleep really easily When I lay down and hold my phone, my hand goes to sleep, or numb. I've been saying asleep in my head but as I write this I'm realizing that it's not really pin and needles, it just goes dead. If I lay down and put my feet up on the arm of the couch I can only do that for about 3 minutes before they are both dead. This one scares me the most.
• Depression I always have beat myself up for being lazy, or for not wanting to be super social for a long time, or even two days in a row. The reasons were real, and I always thought they were a flaw in my character.

I'm not sure what this blog will become, my story? Updates for family and friends? Or maybe just a diary to get my thoughts out so I don't bore the people around me with complaints and worry. Everyone I have told is super positive and tries to downplay it all, which is nice that they are trying to make me feel better and are coming from a good place, but this is huge, and scary, and I want someone just to say HOLY SHIT THAT SUCKS MAN! I mean...the only real thing anyone can do to help this condition is to do decompression surgery. That means laying face down for 4+ hours while your head gets cut open and a chunk of skull "cut" off, which leads to a week in the hospital and 6+ weeks of recovery, but a pretty cool looking 7 inch cut up your neck and head with staples in it. Maybe I'm weird but I've always wanted a villain scar. 

Current worry: My daughter. I will be having a lot of tests and doctors appointments coming up and I worry about all the babysitting she will need, and just how this all will affect her. Also cost. I'm cheap as fuck and all these tests and doctors don't come cheap, all money that could be thrown into my daughter's college fund.

Current Positive: I could be fixed! I didn't realize how much of a load I have been carrying and the idea that I could garden all day, then go for a walk, then to Target and be a normal level of tired is very exciting. Also just not have a headache? That would be really, really cool.