Why Put Off Surgery?

Why Put Off Surgery?

I could give so many reasons:

There’s just so much to do at work

President’s Day is coming up

Have tickets to these upcoming plays

The L train is down

My cat’s birthday is coming up

Honestly, I’m scared. I’m past scared, I’m petrified. My surgery won’t be just one, there’s at least two and they’re done over 2 days. The first is the one I have read the most about, which is the decompression for the chiari malformation. A part of my skull will be permanently removed to give my brain more room.

***Oh Lord, I just googled to get more detailed info to post and there is a youtube video of the procedure. Nope, won’t be clicking on that link.

Yes, I have too much brain. Yep, I have a fat head. Decompression surgery is supposed to give relief from the brain pressure, and allow for the CSF flow to get back to normal. There’s going to be some shaving involved. Say goodbye to the hair. Then there’s going to be staples…lots of staples in the back of my head.

I’m scared.

Second surgery is for the dorsally angulated odontoid process, and will be performed either hours or the next day later. The surgeon with go in through my nose with tiny drills to chisel out part of my C2 (the bone that my brain is impaling itself on). One doctor had previously informed me that I would be in traction for a week before the surgery and then they would go in though the back of my mouth. Traction!!!! Cutting my mouth open? Aaaaaaaaaaaaaa! Um, no thanks, I’ll take the drills. Post drilling, they’ll take some bone from my hip, attach it in the vertebrae, and rods and pins put in place. My neck will never swivel from side to side again.

I’m even more scared.

So here’s the smack in the face with a cold fish. Reality, my friend… my enemy. These surgeries will only hopefully stop the progression, and there is a very good chance I will never regain what I have already lost. There’s also a chance I will need more in the future. My surgeon has been very frank with me and says anything we get back will be a bonus. As much as I am all for hope, I’m actually glad he didn’t sugar coat it. I’ve also seen a lot of posts about decompression surgeries that needed to be repeated, botched ones, symptoms returning and not knowing why, etc. Some people need only a few additional, others need 20+; and then others I’ve read die from complications and other reasons unknown. I know, I know…step away from the computer.

There’s going to be recovery time in a rehab facility. I’m going to be on my back for a while and need someone to help take care of me. There will be a lot of NCIS marathons.

Needless to say, I will put this off till I’m dragging my legs behind me. It could be months, a year, or it could be years if I’m truly lucky. Oh, if they could only find a cure before I get to this point. Please everyone understand, SURGERY IS NOT A CURE.

Still scared. Someone please make me laugh. I need it today.

#chiari #invisibleillness 

Just a Day in the City

Heard on the subway: “Even when I was a vegetarian, I ate escargots. They’re just bugs you know…”

Je suis seule…

Just have to love the French. They even make the most simple, saddest statement sound beautiful. (So sue me, I’m a cheeseball on the level of Margo Martindale’s “Carol” from “Paris, je t’aime”.) New York can be that beautiful sort of romantic lonely (you know that grey rainy, tea kettle whistling in the background while wistfully looking out the window sort of heart-string lonely). Today, this is a different sort of lonely. Having a chiari in New York can make the lonely go down a devastating route.

Damn, I have never felt more alone.

I’m fighting this war against my body in the city, on my own. My folks live back south and my boyfriend (at my age, feels so weird using that word, but can’t come up for a better term for him after all these years) lives in Boston due to a job that was truly too good to pass up. The problem is my docs don’t want me living alone. The idea of giving up that independence is something I’m just not ready for yet. Look, don’t think I’m writing this to say people aren’t there for me enough. My parents and boyfriend, do everything they can for me, and I am forever indebted to them for their support, love, and all they do. I also have one incredibly dear friend. He’s a little brother sort, who has keys to my place and checks in to make sure I’m alive and not in one of those stupid situations of, “Help, I’ve fallen and I can’t get up!” It’s just (I know, step away from the computer) I read on Facebook and other blogs about people with illnesses and disabilities (who live outside of NY), and their amazing support systems of family and friends, and wonder how having a huge network like that would feel. I used to have friends, or I thought they were friends. Now they’re just Facebook icons posting pics of their food, kids, and such. Yes, FB is a plague in our time, making everyone go through simulated connections and destroying true communication, but this whole annoying chiari business can cause even more friends to peel off in grand numbers since you can’t go out much any more.

Here’s a little of how the lonely creeps in.

As mentioned before, balance is a massive issue with my chiari, so daily tasks can be quite a challenge. Day begins, get up and if it’s a good day there’s no wobbliness. Then there’s the case of the bad day and you swing the legs over, attempt to go upright, sway, nosedive forward and bean yourself on the head on a chair arm. I even managed to knock myself out once. Imagine explaining the purple and green egg on my head at work. Ugh. Showering can be quite an adventure also. Damn it! I am not ready for a senior bar in the shower or shower chair! Unfortunately there are days I could really use one. You got it, I’ve fallen in the shower and even clean out of the shower onto the floor, then there’s also the case of hitting the towel rack. Sigh.

Jumping ahead to the commute Well, it’s NY so it’s going to be by subway, and we all know how that is from a previous d post.

Now, as for work, I’m pretty fortunate. Am at least behind a computer (even though that’s not the best thing for ACM), and don’t have to be wobbling around constantly. Sitting though can be torturous. Lean one way,  brain slides…lean another way, bone protrudes more…find the perfect sitting position, someone f@cks with my chair. Yes Dorothy, we are still in high school. Even though there is a “DO NOT SIT IN THIS CHAIR” sign on it, people readjust the chair that work got for my spine and had also set it up especially for my size. Every little thing like this chair can help me make it through the day with maybe just a little bit less pain. I used to love my job and worked extra hours on projects that really made me feel fulfilled. I even ran an art blog, partnered in a successful gallery, and was out to all hours promoting my artists and seeing friends. Now, I just do good to make it through the day and hope that no one thinks I’m weak. People understand exhaustion for people with cancer and chemo, or the flu, or a broken leg; but when they can’t see my screwed up inner workings, they can’t understand why I’m about to collapse. I feel like vulture sh*t.

Time to head home. Can’t feel my hands and feet. Head has a spike piercing through the back of the top of the skull. Eyesight is quivering and fading. No, there’s no going out for post work drinks, dinner in Chelsea, spending time with friends. Rattle around the subway again. Home. Click on the lights. No one’s waiting for me with arms outstretched ready to hug me.  No voice messages. Too much pain and numbness to cook. Uncork a bottle of wine and become one of those couch potatoes I swore I would never become.

Damn, I am so alone.

Not every… but on random nights, I’ll hear the lock turn. “Hellooooo, you around? What’s happening?” My friend that checks in sometimes pops his smiling face around the doorframe. “You eat yet? You need to dump your boyfriend and date a sandwich. C’mon lets get some food.”  A little later “Ping”! Skype jingles, and I know it’s Boston calling. My world may be smaller, but maybe I’m not always so damn alone.  Now I know who really matters, and truly know who all those people I used to call “friends” really are.

Note this entry was written in advance and after putting the first blog post up, (And yes, I posted it on Facebook. Was the only way anyone would ever see it.) I have started hearing from some people again. Honestly, I can’t even find a way to express how much it meant to me. Maybe FB isn’t the plague. Would just so love to see more people face to face, and have real intelligent extended conversations. Friends have always meant so much to me, and so many of them I have always considered my family. Miss cooking for you. Miss listening to your tales. Miss you all. 

#chiari #invisibleillness 

Lame and late

I know. I’m lame and late on posting. After being informed my writings are deemed negative, I lost a bit of confidence. Believe me, having these malformations, abnormalities, etc. make a person unsure enough. Hmm…negative? I know I like dark humor and dearly love to laugh at myself (it’s a self preservation technique I’ve used all my life). Well, hearing all that from people I love and respect made me reread and over think everything I was working on and had yet to post. After taking a break to sort this out, I’m back. Can’t guarantee I’ll be a bluebird of happiness. All I can do is write what I see and feel, and post when it feels right.

#chiari #invisibleillness 

Art (?) and Education

Before I get into a chiari related post, I just have to say one thing. Just received a press release for Flaunt Magazine’s Art Basel group show. There’s going to be a private performance piece by Vanessa Beecroft, in collaboration with Kayne West. Oh Lord, please no! Marina Abramovic and Jay-Z’s were bad enough! I’m so glad I’m not going to be in Miami this year.

Back to the chiari

Fell of the blog last week. Had a bit of time off work, and my body let me know loud and clear that I’m getting worse. I’m getting closer to what I fear the most. Ok, maybe not the most, but it ranks higher than zombies and gremlins.  Spent most of the week horizontal, and staring at my iPhone. Time wasn’t only spent reading Gawker, Wonkette and Blink on Crime. Found myself pouring over chiari pages and searching for any more tidbits of info I could get.

So you’ve now heard my little recap on ailments. Here are some links to support and also much more in depth information on Chiari Malformations. There are so many diverse symptoms and not everyone will have them all. I’ve seen some people liken the diversity to a box of chocolates since you never know which one you’re going to get. Another thing I’ve noticed on chiari support pages, is an abundance of posts by women. This got my curiosity and my googling up. According to the Chiari Institute, women are affected three times more than men. Just what we need, another affliction that leans toward females.

Since so many doctors have little or no knowledge of chiaris, it’s best to arm ourselves with more than a little bit of knowledge. Below are just a few links, but there are many more out there.

links to informative sites and pages dealing with Chiari Malformations:
http://www.conquerchiari.org/index.html

http://www.conquerchiari.org/documents/presentations/SYMPTOMS%20Presentation.pdf

http://asap.org/index.php/disorders/chiari-malformation/

http://www.chiariinstitute.com/chiari_malformation.html

more information and support

https://www.facebook.com/ChiariEncouragement

https://www.facebook.com/ChiariWarriors

information and a great way to explain to anyone what it’s like to live with an invisible illness.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

#chiari #invisibleillness

Gravity Always Gets You In the End

Looking back, chiari and insufficient CSF flow symptoms have persisted all of my life. I just didn’t know what was truly going on. In childhood, it was clumsiness, eye floaters, ears ringing, etc. Honestly, I and probably everyone else just thought I was a wimp. Each year church softball season would come along. At the beginning the coach would try me out at pitching. Could lob the ball over the plate pretty decently for a few throws until my head would ache and a pain in the back of the neck would bring on nausea and I’d be shuttled off into the outfield. As the years passed, I shied away from sports and too much sun.  My eyesight started doing something I like to call “Picasso vision” (maybe this attributes to some of my judgment in men). Glasses never seemed to do the trick. Due to the constant ringing in my ears, I always slept with an old hood hair dryer running on cold. Excuses for every ailment/symptom kept piling up.

2011-2012 was when everything finally came out in the open. My balance was so bad that I couldn’t hide it any more. Jeff moved to Switzerland for work and on my first visit to help get him settled in, I lost physical control. The secret was out. Had no choice but to start delving deeper into my own research. Have a wonderful GP, but he had never dealt with any of this before. He sent me to multiple specialists to rule everything out from eyes, ears, innards, eegs, ekgs, pet scans, you name it they stuck me with it, shocked my muscles, strapped me in contraptions, and pretty much made me feel like a magnet from all the MRIs I had. Finally was sent to a neurologist who dealt with people like me with chiaris, tingling appendages, etc. Everything also seemed to sound like MS. I thought this was the beginning of truly sorting the mess out. WRONG. Little did I know specialists aren’t so special when they do not read the scan results. I could have been fully diagnosed right then! Instead, this ass decided since I’m a female and my significant other is in another country, this whole thing must just be a case of nerves and all in my head even though he acknowledged I had a chiari. He just thought it wasn’t big enough to matter. One important rule on chiari malformations is size does not matter. His solution was to just drug me up, but luckily the meds made me walk into a closed door and I stopped them immediately. Stress may have made my symptoms worse but were not the cause. Little did this man know, I eat stress for breakfast. Mr. Specialist sent me all over again to another round of doctors and other neurologists. NO ONE READ THE TEST RESULTS! I spent over a year being shuttled around and told it is still all in my head. There are so few doctors that actually know about (or are well informed about) chiari malformations or dorsally angulated odontoid processes and those that do, do not always know how to deal with them. 

Hurricane Sandy hit and closed NYU Hospital, and I used that as a way to just stop. I gave up. Months passed and I grew worse. Jeff finally put his foot down and made me go back to my GP and my pain management specialist and that was when I finally truly found help. Dr. Jesse Weinberger at Mt. Sinai was my savior. He listened. He didn’t dismiss me because I’m a woman. HE READ THE TEST RESULTS! By this point the files were as thick as the Gutenberg Bible and it did not even make him hesitate. He also looked at all my scans and pointed immediately to the bone poking into my brain, platybasia, and the chiari (which did turn out to be pretty big). Then with further tests, he found more. Finally the truth is revealed! It was all in my head all along… and my spine, and my skull, and my brain. Oh, he also pointed out that gravity is a big key in all this too. Jowls and boobs aren’t the only things that sag as we age. My brain is and will continue (until I give in to surgery) to slide further back into my spinal column and keep impaling itself on that lovely bone.

I will always be indebted to Dr. Jesse Weinberger, Dr. Lawrence Adler, and Dr. Vinoo Thomas. They care, they listen, they never gave up on me, and they are the embodiment of what you want from a doctor. They are the best of men.

A really good read

http://www.amazon.com/Women-Asylum-Voices-Behind-1840-1945/dp/0385474237

Picked this up eons ago, but it stuck with me. In some of the case studies, women were institutionalized based purely on a man’s word. Some were told, it’s all in their head. Sound familiar?

#chiari #invisibleillness 

I am, Invisible Woman

Ever heard of an “invisible illness”…well, a chiari malformation is a member of that party. Migraines, fibromyalgia, and many others are also included in this group. You look fine (well sometimes bedraggled by the end of the day), but you’re battling your body on a daily basis. Every chiarian can have a multitude of varying symptoms.

My list is longer than I want to submit you to, but below are a few of the select symptoms:

left-side of the entire body (including my face) numbness

inability to feel my hands and feet

spike drilling through the top of my head

back of brain being squeezed

feeling like my head is set on a pike

difficulty swallowing and sometimes feel like throat is being squeezed

vision fading and at times I feel like I have chameleon eyes

eye floaters

major balance and dizziness issues which result in falling down

tinnitus

exhaustion

and the list goes on…

Most important though, I am slowly becoming paralyzed. Even though at times this is difficult, I try to remember, there are many people worse off then I am.

Commuting into work in NYC isn’t exactly chiari friendly, and it’s really not too partial to those with “invisible illnesses”. Here’s a little insight on my daily transport to work:

Just imagine a subway trip with only one or two of the above symptoms. That’s me the wobbly, cane toting – girl (not feeling much like calling myself a lady today, since I truly wanted to smack a subway etiquette offender with my cane). Struggling to see straight, not fall off the platform, and navigate stairs. Oh, there are elevators in some of the stations. They’re there, and you can use your nose to find them. Usually someone has designated them as their private loo. Also inevitably by the time I get out of the subway car and amble over, there is a long line of people who could readily take the stairs but well…there’s no polite way I can describe these people, so I won’t even try. I’ve seen people in wheelchairs nudged out and made to wait for the next lift by this lot.

Part two of our adventure: Desperately searching for the elusive seat on the subway… every   single   day. Here we go. Wait on the platform. Crowd starts to build. Subway pulls up and the doors open, and the seas don’t part. As people try to get off there’s always some idiot that rushes like a linebacker to get on. These are  the body slammers. Try to sit down. Here comes the side-swipe. Wham! Or there’s the full body check. Oof! Canes don’t matter. Doesn’t matter when I catch myself on a pole before I hit the floor. All that matters is, they get their “Precious”, that damn seat. There’s the other classic offender: the hipster douche dude that’s a siddler. They nudge, they shove, till they get to just the position they want by the pole and wrap their entire body around it, not caring who has their hands already on it. Another one that tops them all is the person that asks, “Why do you have a cane? You don’t look like there’s anything wrong with you. Chiari? What’s a chiari? I’ve never heard of that before. I bet if you just tried yoga, you’d get better.”

Then there’s the best one…the one that always surprises me. I’ll be standing in a packed car, swaying or just hanging on to a rail, and I’ll feel a hand on my arm or back. Glance down and there’s a seated young lady smiling at me. “Would you like to sit?” These rare moments give me a little bit of hope in people again.

Maybe I’m not always invisible.

#chiari #invisibleillness

Side note: Sometimes you just have to laugh. Can make the day so much better.

"Son of the Invisible Man" from "Amazon Women on the Moon"

Hello world,

Starting this blog with mixed emotions and even a few jumbled thoughts. Over the past years (in actuality, turns out it’s been all my life), I’ve been battling something my doctors could never quite sort out. I finally have some answers on my health. Turns out the lot of what I have, is a chiari malformation, platybasia, missing/detached right vertebral artery, dorsally angulated odontoid process (C2), brain aneurysm, and stenosis of carotid arteries. Long list to simply put, my brain is sliding back into my spinal column and cutting off spinal fluid flow and a bone is poking into my brain/brain stem. This wonderful perfect storm of malformations is making living in New York quite an obstacle course and a balancing act of challenges. Anyway, this will be a little place where I can get things out in the open, share a little information, and maybe find a way to give back something to the world.

#chiari #invisibleillness