UnZipped

Conquer Chiari Walk Acoss America ~ September 18, 2010

2010-08-10T13:56:00.000-07:00

Do you know what you are doing on Saturday, September 18, 2010? I will be joining thousands of walkers in our third annual Conquer Chiari Walk Across America to show my support to raise money and awareness for Chiari Malformation and related disorders.

There are walks in 30 states this year ~ our goal is to someday have a walk in all of the 50 states. Here's a link where you can find a walk in your home town ~ Conquer Chiari Walk Sites. Register to walk or sponsor a walker.

This is a great opportunity to spend some time outdoors, soaking up that cool, crisp fall air and maybe you will meet some new friends who just happen to be chiarians, too. Invite your friends and family members to join you for the walk. Since most of us don't do so well with the walking thing anyway, the walk is usually short and sweet.

Here's some more info about the walks listed below. If you don't see your town, find out if there's one nearby. Just think, maybe you and some friends could coordinate a walk in your town next year. Knowledge is power when it comes to Chiari. Let's conquer chiari!

Conquer Chiari Walk Across America

WHAT? A series of coordinated Chiari walks held at the same time across the country.

WHERE? It is our goal to have at least one walk in each of the 50 states. This year we have 30 walk locations.

WHEN? Saturday September 18th, 2010. September has been named Chiari Awareness Month in several states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.

WHY? To raise awareness of Chiari; to raise money for vital research; and to get people involved.

In 2010 it is our goal to raise at least $300,000 for research. In 2009, more than $250,000 was raised with 90% of the money going directly to fund exciting, new research projects.

http://www.conquerchiari.org/walk%2010/Walk%2010%20General%20Info.htm

Surgery Again

2010-06-18T00:58:00.000-07:00

Anyone who has had the spinal fusion hit me up with honest info on how it went... ie recovery time, pain involved, limitations, PT, and whatever else you might think is relevant. My doctors think it is time I visit the surgeons and begin speaking to them about the fusion. I am resistant to the idea but my head and body are not cooperating with me on this.

2010-05-14T04:15:00.000-07:00

2010-03-23T15:53:00.000-07:00

Revolutionary Decompression for Chiarians!

2010-03-22T07:44:00.000-07:00

Hello all! My name is Lori and I am a fellow Chiarian. I am the mother of two girls, ages 15 and 9. Ten years ago a man picked me up and threw me to the ground. The back of my head bounced and I believe that is when I acquired Chiari. The idea that it can be acquired is relatively new, but it is the only explanation I accept. I was normal before the incident and most definitely not normal after.

Mine started with visual distortions and excruciating headaches. Then came the anger issues and balance problems. I thought I was loosing my mind, mostly because doctors were telling me I was loosing my mind. They kept trying to medicate me with anti-depressants. Somewhere inside, I refused to believe I was mentally ill. I wasn't making this up! So, I researched all conditions that had similar symptoms. I narrowed it down to Chiari or MS. MRIs showed no lesions so it wasn't MS, but they also didn't show Chiari. Then I found an internet article on Chiari 0 which is very controversial. It made sense to me so I looked up the doc behind it and it was Dr. Dan Heffez. He was in Wisconsin, which isn't horribly far from me, so I called and set up an appt. Dr. Heffez ran MRIs I had never seen before. My old MRIs were tiny pictures of my whole head. Dr. Heffez's pics were close ups of the foramen magnum from all sorts of angles. They showed I had a 4mm herniation. The standard for Chiari is 5mm, so according to most experts I did not have Chiari. Dr. Heffez recommended surgery based off of the MRIs and neurological tests he performed in office. I knew I didn't want to be a zipperhead! It freaked me out to get my entire head slashed open -- all those staples, all that pain!! No thanks. So, I researched some more and found a blog about Dr. Di and this teacher in TX who had endoscopic decompression at the Cleveland Clinic. I made an appt, met Dr. Di, and scheduled my surgery. I had surgery, staid in the hospital for 24 hours, never went to ICU, my and then went home. My dura was scored, never completely opened, so there was no need for a cadaver or cow membrane. I have about a 2" indent under the hairline to show for it. I am almost completely back to normal now.

I tell people that I spent ten years on a couch so forgive the lack of social graces :) I do not seem to have the issues affecting those who had the traditional surgery. I am so happy to be free of chronic pain!! I am currently running a supplement trial on myself. This supplement was introduced to me by a friend who found it while researching how to help his mother with MS. It is revolutionary and brand spanking new. I am so excited by it. You can follow my progress on the supplement at mychiaribooboo.blogspot.com. I will try to keep this blog updated as well. I want to thank Q for allowing me to join and become apart of this wonderful community blog.

Love to all,
Lori

Intro

2008-11-18T19:39:00.000-08:00

Hi,

I just joined this blog recently so I thought I would introduce myself and I can tell you a little more about my story later.

I am a fellow chiarian and had surgery February 6, 2008. The primary reason for my surgery was debilitating headaches which started becoming severe in July '06. My finger tips from about halfway down from the last knuckle on were completely dead to feeling. I was having great difficulty swallowing and had to drink with each bite and avoided meats and drier foods that just don't go down as easily. I also had ringing in my ears and a few other annoying but not so serious symptoms.

I am married to a wonderful man and have four beautiful children. Probably my biggest regret with all of this has been that I have not been able to be much of a mom to my kids for quite a while. There ages are 13, 11, 6 & 5. My youngest two don't remember me ever being healthy and able to do fun things with them which breaks my heart.

I have been reading back posts as I have time and it seems like each of you have had life totally change with chiari. I am sorry that this has happened to each of you!

Cindy

Dr. B Explains Tethered Cord

2008-08-28T05:19:00.000-07:00

Here is the latest video on TETHERED CORD ~ Dr. B at TCI explains tethered cord in layman's terms ~ he throws in some dry humor, too.
http://www.chiariinstitute.com/Videos/index.html

Alternative Therapies

2008-04-09T22:04:00.001-07:00

Updated 4/15: Seriously I have only heard from one person. Any ideas people? Don't worry I won't state your name, just suggestions. Any home remedies or such that work for you? For any of your Chiari symptoms btw.

Hi all!
I am putting together a post on alternative therapies. I know my pain doc suggested yoga, massage and TENS. (i hate pills so he is at least trying here!)
What alternative therapy have you tried to help ease pain or other symptoms?
Comment, or email me at queli.is@gmail.com
I will add any suggestions that you all have.

Take care of you,
Q

Preparing for Tethered Cord Surgery

2008-03-17T10:46:00.000-07:00

Since this is a quickly growing phenomenon with patients who also have Chiari, I hadn't heard a lot about preparing for the detethering surgery. I am happily at my 6 weeks post-op date and will share with you my thoughts on the topic.

Emotional Prep:

Since I had the 'occult tethered cord' I talked with a lot of other patients who had the surgery to help convince me that even though my TC didn't show up on an MRI ~ it was still there and needed surgical attention. Also the affirmation that if you have Chiari and Tethered Cord (TC)~ it's best if the TC is addressed first and then the Chiari. Also, please don't be afraid to ask your surgeon to explain in detail what the surgery entails, this greatly alleviated my doubts and fears.

Physical Prep:

I did a lot of core exercised to strengthen my stomach and core muscles in anticipation of using them instead of my back muscles.

What to expect physically?

Keep in mind that everyone has a different pain tolerance, so don't be shy about asking for pain medication. If you are lucky enough to have a pain pump button at your access ~ don't be shy in pushing it for relief!
I won't lie to you ~ the first couple of days are really tough and painful.

Get up and walk as much as you are able ~ it will be painful but the more you walk the better you will feel.

I had heard that nausea is a big symptom after surgery, so before the surgery I expressed my wish not to be nauseous and so I had some kind of medication go right into my IV the whole time I was in the hospital and I never felt nauseated the whole time.

You will most likely have circulation boots on your legs when you wake up from surgery. They are like blood pressure cuffs and they are annoying at first but you get used to them. They help prevent blood clots from forming since you will be bed bound for a couple of days.

You will most likely have a drain stitched into your lower back ~ don't worry ~ you probably won't even know it's there ~ and they will un-stitch it before you leave.

Random Thoughts:

If you are traveling by car back home, grab hold of the handles near the roof of the car and pull up when you are approaching a bump.

Bring a small pillow to put behind you in the seat to support your lower back.

Ask for extra heat packs from the hospital to take home with you ~ they greatly alleviate the pain the back.

Bring some kind of moist facial wipes to wash your face with while in the hospital ~ it feels so good to get your face clean and makes you feel a little bit more human.

Eat LOTS of BRAN products ~ FIBER ~ trust me ~ you will need them.

I experienced vertigo every time I would lie down or turn over in bed ~ it will pass ~ only lasts about a week.

A positive attitude goes a long way. To fight cabin fever, try to plan an activity each week that you can look forward to. It will greatly lift your spirit.

When you are ready to toss the sweat pants in favor of your favorite jeans, put on a camisole top and tuck into your jeans to keep your incision from rubbing on your jeans.

Everyone's recovery is different. At 5 weeks post op I was walking a mile 5 times a day and doing some select PT exercises at the gym.

If anyone has more questions on the detethering surgery, please feel free to e-mail me at: lacieheiser@gmail.com. Our dear friend Queli will have her detethering today @ 12:30pm ~ I am sure she will be able to post on this topic soon when she is up for hopping on the computer again. Hugs to all of you ~ Lace

Preparing for Surgery

2008-01-30T13:11:00.000-08:00

I know that this month, there are a lot of you out there scheduled for surgery. My prayers are with you! This blog is for you, although it is not comprehensive....just some random thoughts as you get ready for the big day. (How exciting!!!)

I am not necessarily an expert on medical stuff, but I have had plenty of surgeries.

Each time the preparation is a little different but some aspects stay the same. Here are a few things I thought of, or were suggested to me. Please feel free to add on through the comments, or email me at queli.is@gmail.com and I will add to the actual blog. These are just things to think about....I hope there is something in here for each of you.

Queli

Mental/ Emotional Prep:

This one I listed first, because if you are anything like me, I freaked when first told I had to have brain surgery.

Before Surgery

- Make a list of questions for the surgeon. Actually place a notepad in you living room or kitchen, so it will be easy to reach when you think of questions or concerns….and believe me, you will. Although I usually think I will remember certain questions, I usually don’t always have excellent recall until after I have reached the car, or hung up the phone. ( BTWthere is not stupid question: If you are worried about pain, ask the doctor how much you should expect, and what their plan is for post-operative pain management. You are the consumer, and have a right to know the ins and outs of what lays before you)

- Self Soothing Activities (bubble baths, long walks) These are things you won’t be able to do for a few weeks, so perhaps you will be able to enjoy them more. Also, I mentioned baths, and walks because those are calming for me. Choose whatever activities are best for you to reduce your anxiety level.

- Journal or discuss with a close friend/family member, what you are thinking and feeling as surgery approaches. This not only helps with anxiety, but it also aids in clearing your mind and processing the experience.

- Don’t take on other’s anxieties. There will be people in your life that are concerned about your surgery. This is wonderful, it means you are loved. However, you don’t need to be the one that soothes them. I mention this one, because I have some across this often as people get ready for surgery. Not only are they concerned about themselves, but also are tired of trying to ease everyone else’s hearts. In my own experience I thanked my loved one for her concern for me, then suggested that she seek counsel from another friend who wasn’t about to have brain surgery.

- List of resources. Having a list of webpages where one can access information regarding Chiari, or the specific procedure can be great to educate yourself and others. When you feel you have had one question too many, you can just share your list OR you may want to revisit some old information as you mentally prepare yourself.

- Make a plan for issues you anticipate.

o I had concerns about the hair, so I bought a wig before surgery. Although I could not wear the wig right away, I felt better knowing I had options)

Pre-Op

Okay this is just a suggestion, but a strong suggestion. Something that has been a huge help for me on the day of surgery is prayer, and Ellen Degeneres’s books. ( particularly, “The Funny Thing Is…”) A friend who was at every surgery, would bring the book and read it to me while I waited in pre-op. Ellen might not be your cup of tea, I can’t imagine that is so but regardless… pick up a funny book for that wait. The nurses think your nuts, but you are going in for brain surgery and laughter truly is the best medicine.

Support System

You will need some reliable people in your life during the post-op period. Make a list now of these people and let them know what your perceived needs may be. This might include someone to be with you during the post-op period (my friends took shifts), making meals, ride to doctor’s appointments, picking up prescriptions, light cleaning, checking in with a phone call, or stopping by.

Do not worry about asking others for help in advance, even if you are not sure you will need it. People in general, want to help. Also they are more likely to call if you let them know beforehand that you will need their help. They are less likely to offer this support after you get home because a)they think everything is covered, and more likely, b) they are not sure if they should disturb you.

Physically

- Take a reasonable amount of time off from work. I have to put this one in for my own insane behavior of only scheduling 2 weeks off for my first surgery. This is not an appendectomy, this is major surgery. You body needs time to heal. Since my lapse in judgement, I have heard that most doctors suggest around 12 weeks. Ask your surgeon for his recommendation. If he says two weeks for the decompression, like my first surgeon did, go get another doctor that doesn’t smoke crack.

- Take it easy! And I mean take it easy, easy for the first few months. No lifting, or anything that causes strain at all. The muscles they had to cut through to get to your skull need time to repair, as well as the outside sutures.

- For the decompression, I personally did well with doing neck exercises, starting while I was still in the hospital. The act of doing the turns and nods felt like some kind of concentration camp torture; I really did wonder if my surgeon was the anti-Christ at first. However, I didn’t have these neck exercises the first time around, and spent a year in physical therapy. TCI made me do them right away, and it helped so much (no physical therapy was needed). Although painful, it actually helped lower my pain levels this time around to turn my neck and get those muscles healing right.

- If you experiences nausea they have great prescriptions for this; don't bother with the over-the-counters for nausea. That’s just my 2 cents ofcourse.

- What to expect physically?

o Everyone is different as far as post-surgical discomfort. Not only that, also every surgeon is different which does make a difference.

o My first decompression: I had a lot of nausea, dizziness, and major “someone please kill me” pain. However, there were complications in my particular case that are rare.

o 2^nd Decompression: More was done then the first, but I had much less pain. My biggest physical issue was keeping myself from too much activity because I did feel so good. I was completely off the narcotics about two weeks post-op, and that was just because they didn’t want me to stop them cold turkey.

o Again, ask your doctor about his or her post-op pain management plan.

o Also ask how long until you can drive. This one also seems to vary surgeon to surgeon (and also is linked with how long you need to be on meds)

Out of Town Surgery

- Places to stay.

o Don’t be concerned with plush accommodations. Post-op, all you will be concerned about is a comfortable pillow, where your pills are, and if it is time to take a walk to keep from developing clots. You aren’t worried about the breakfast buffet, or swimming pool, and neither is your companion.

o If money is an issue, see if the hospital has accommodations for travelers. I know TCI has a place for Chiari patients, and I also found out recently that there is also a Ronald McDonald House nearby.

- If you have to come in a day or so early for pre-surgical testing, schedule it early in the day. This way you can enjoy sight-seeing in the town, so it isn’t just about the surgery. I did this for my surgery in New York. And spent the day before surgery checking out Central Park and Times Square. It gave me and those accompanying me, a mini-vacation prior to the Zipper. It also gave me something to look forward to when thinking about the trip, instead of dwelling on the surgery.

Random Suggestions/ Thoughts

- Nurses have answers. In the hospital, feel free to ask the nurses if you have any questions. My first hospitalization I waited for the doctor and he didn’t have time or patience to answer them (this was not at TCI, btw) But what I found out was that nurses not only speak surgeon, but they also have a vast bit of knowledge in many areas from pain management to aftercare.

- Plan on some self-discovery stuff. There was a definite re-defining period for me after surgery, especially with the hair loss, and limited activity. Don’t be afraid to see yourself in a different light. Also allow some room for growth. Brain surgery is a big deal for anyone. A lot of soul searching is involved, and therefore so is a huge potential for growth. Use it.

- Hold your head before laughing…….it hurts if you don’t :)

- Write down names of people who have helped you out in some way. If you want to send a thank you later on, you might not remember what you would think you would.

- Have someone who is a good note taker take notes when the doctor goes over post-surgical consult, and discharge. Too much information is given, and usually the print out they give you is not as detailed.

- Most likely you will leave the hospital with a list of meds and how often to take them. Ask the nurse to write down the last time you took each medicine before you leave. I thought I knew, but by the time I finished getting the prescriptions and settled into the hotel room, I could barely remember my name let alone which meds I had last.

- Find reasons to laugh; really there are so many, and as I said before…laughter is better for the soul than any meds they can give us.

- Be proud of your Zipper. You went through a lot to get to this point!

- And lastly, but most importantly, use the “I just had brain surgery” excuse at least once. I mean seriously, how often will you have that one?!!!!

Acceptance

2008-01-07T22:16:00.000-08:00

Who says all dirty words only have four letters?
The thing is that acceptance would be easy if we only had to do it once.
Unfortunately, we come across this need everytime Chiari changes in any way.
I was all about acceptance until I had to have another surgery.

Then I found myself feeling like a teen, trying to figure out who I am and what I am going to do with my life. All of a sudden feeling almost as lost as I did that first day I stumbled through the words "Arnold What?"

Acceptance is a hard one....and I would love to say it gets easier.....but that hasn't been true for me. Heck, we come to points with big decisions to make, or hurdles we have to climb.

Acceptance does however, come quicker each time...using the experience of trial and error from past experience to egg me on.
What makes it hard is that I have to keep going through self-discovery. Who am I now? or even What will my limits or benefits be?....from whatever course of action that is suggested.

Talking with friends with other chronic illnesses, this re-visit time and time again to acceptance is pretty much the norm.............even for something as abnormal as Chiari.
I think perhaps even more with Chiari because we don't have as much information when if comes to ACM.
However, we do have each other, and each other's experiences.

Thanks everyone who has walked with me through one or two of my walks on the path to acceptance.

Happy Birthday to ME

2007-11-29T00:22:00.000-08:00

Ok, well technically, it's one day until my 1st anniversary of my posterior fossa decompression, c1 and c2 laminectomy, and duraplasty.

I'll have some kind of post up if I can manage to get in front of the computer, which would involve getting out of bed Friday, which I am terrified to do, because I have now convinced myself that the ceiling will fall right on my head, shoving my skull on its unstable vertebrae down into my butt ( thanks a lot, Queli ;) ), and once everyone appreciates the irony of me having my head removed from my bum, I'll have to start all over again.

Little bit of PTSD? NEVAH!!!

I would like a rousing round of comments of "Happy Birthday" with the words changed to reflect Chiari as each of us has experienced. Or haiku. Or just prose. Who needs rhyming couplets? Not I!

So if anyone does happen to see the sky falling on November 30th, no worries. Just avoid my neck of the woods.

Hehe.
"Neck of the woods"
I'm so punny....

Concave Skull

2007-11-26T21:48:00.000-08:00

Why the hell didn't anyone tell me my head was going to cave in?!!!

It scared me to death Saturday morning to discover my flat zipper had developed a major dip right below my handy dandy new titanium skull.

Turns out major swelling starts to subside around this time (10 weeks post-op)

This should have been written somewhere.

I thought my butt had swallowed the rest of my brain.

Anyhow, heads up for those going into surgery.

It is apparently ok to develop a crater in the back of your head.

Holy Hair Batman

2007-10-22T09:26:00.001-07:00

Ok, so I brought up hair again.

It has been a constant concern for the last several weeks since I haven't had any from the scalp down.

The ponytail fall
Pros: worked well combining it to my existing hair in the front. It as also good because it only takes seconds to go it, and is an instant hair-do.

Cons: It is heavy, and caused some added neck dicomfort. Also I felt a little I-Dream-Of-Genie at times with a ponytail that has to hang high (since it has to attach to some kind of hair)

Wig
Pros: Slip it on, and instant hair. You can buy a couple and switch em out for different moods.

Cons: For long hair, could not work well. For me, I had to ditch the wig. I started out with long hair, so now I still have long hair on the top and sides. The wig looked odd with that much hair tucked under it. My hairdresser said I could cut the top and sides so it would fit better......but I am not ready to let go of the hair I have left.

Scarfs
Pros: Quick and easy

Cons: Not so attractive. Feels like an obvious that I am hiding the scar and baldy areas.

And finally... the one I have been waiting to be able to use
Hair tracks

Pros: I love em!!! I got the ones made of human hair, the same color as my own. They glue in, and can stay in thru washes and such, until I decide to take them out.

Cons: Made need help gluing them in. The scar is an issue also. You don't neccessarily want to glue the pieces to the scar which of course is in the center of the wreck. I glued two tracks in close to the crown, where my scar is fairly healed, and just left a small part unglued in the center, at the point of the scarline.
note: You also need some hair growth before you can use this option.

Anyhow, that has been my journey through hair options.

So far, I find the track working the best. When I go out, only the people that know me, know it isn't my hair... And most of the people who know me are amazed and confused that my hair is back.

Yesterday was my first outing with the tracks, and it was the first time I felt like I looked fairly normal......and thus the only time I felt like messing with making myself up some.........because I felt less like someone who just had brain surgery, and more like everyone else out there.

Coping Mechanisms

2007-09-05T07:36:00.000-07:00

Exactly how DOES one get through brain surgery, recovery, and life in general? If I cut through all the seriousness, which I do love to do, here are my recommendations. I have been beta testing all of them, with varying degrees of success, and can quite honestly say they have made the past year much more bearable.

1. If you're single, sign up for an online dating site.
2. Buy a really expensive European designer scarf to cover your landing strip.
3. Plan a trip. Or trips. Or career change for when you recover. And invite along a family member you're trying to make peace with, then plot in secret to sell them once you reach North Africa, which they'll have never seen coming, because they think after brain surgery you're all calm and peaceful and forgiving.
4. Get a cute physical therapist, preferably with an accent and who plays contact sports.
5. Take up a musical instrument. The more obscure, the better. You don't have to learn to play it while recovering, just start thinking about all the covers to your favorite songs you can butcher.
6. Blog a lot. It helps to hear others voices and perspectives, especially for a condition where so little is known. But maybe do it anonymously, so your doctors don't read it and refuse to treat you any more for "slander".

Chiari is:

2007-08-22T06:02:00.000-07:00

Fill in the blank.

I am doing a fundraiser for my upcoming surgeries in Sept. and want to give a flyer to the guests on Chiari. Part of it would be nice to put it into Chiarians words.

So fill in the blank on one of these questions:
Chiari is:
A Zipperhead is:
Chiari effects me by:

Or come up with your own.
I am only taking a day or two of comments because I am getting these flyers printed......so help!!!

Velveteen Rabbit

2007-08-21T04:49:00.001-07:00

(reposted from other blog- regarding spiritual jouney towards surgery next month)
Ruffled, worn, and falling apart, the veveteen rabbit rest speachless on the floor.
The trip has been exhausting, and the journey long.
Each gentle guiding stroke, is now obvious from the prevailant bare areas where fur once lay, soft and clean.
The fur that remains is now dull and blemished.
The process of becoming real is not so pretty :(

I can't help but look towards surgery, and be reminded of the velveteen rabbit.
My body is worn, ruffled, and falling apart. And it will only feel and look worse in the weeks to come.
What will come from it though is one more step towards what God planned for me to be.
A lot of people think Chiari falls outside of the grace of God; outside of His original plan for me; not what He wanted for his child.
I don't agree.
Although the journey has been long, and its trials evident in my worn fur.........it has all been a series of AFGOs leading me to the raw realness of who I am to become.
AFGOs for those who don't know me, stand for Another Freakin Growth Opportunity. Ofcourse the original version of that I was given has been cleaned for all eyes and ears to take, but either works.
Life is full of AFGOs.
Ugly, painful, wonderful, AFGOs which both make and breaks us.
Yes make AND break.
Not either or.
Refinement burns out the ugly dark pieces. It isn't a gentle process that you come out of unscathed.
The brakes and tears are important; they are Gods wind for us, making our root in Him stronger.
Never feel sorry for me for having this condition. It isn't as debilitating as it is abilitating.
It has taught me far more than words or teachings ever could.
It has planted me stronger in my faith, and brought me closer to God.
But don't expect me to face each new AFGO with a grin on my face.
I don't like 'em.
There, I said it.
AFGOs stink.
They are uncomfortable, usually painful, undisirable times.
They are meant to shed off that next layer to get to the core. And like on onion, as they layers are removed, tears may result.
And this week(or next, I am sure) "How are you?" isn't the best way to greet me if tears make you uncomfortable.
I am emotional, almost bipolar in my degrees of emotion in fact.
I'm am smack dab in the middle of an AFGO, and I ain't happy about it.
But I do still have joy. Joy in the fact that I am held to a greater purpose than this body can possibly restrict me from.
I know that there is good on the otherside of this mountain.
So a better way to greet me perhaps it to just say "keep climbing".
I am almost at the peak, where I will be able to see the road for miles ahead.
Until ofcourse, I hit the next mountain. Unfortunately our lives are not made of one big test, but a series of 'em....... us humans are quick learns as we think we are.
So feel free to join me on this journey ahead............just know you might see tears along the way........and that's okay.
I gotta mountain to climb.
Ofcourse, if someone has a drill to go right through it, I will take that too.........
But for now, I'll keep climbing, loosing some fur along the way (Huge hunk from the back of my head to be exact) Each step to becoming more authentic in my walk.
Sorry this blog is so full of metaphors...........just thought you all could relate more than you could to brain surgery. We haven't all had someone drill into our sculls, but we have all been on this journey.
Take care of you,
Q

Defining Self Post-Diagnosis Pt 2

2007-08-12T18:49:00.000-07:00

Queli has a post up about defining self post diagnosis. This one has been my struggle of late. I am 8 months post surgery, and in the throes of a mid-mid life crisis that any maudlin poet would envy.

Pre-diagnosis, I had studied theater professionally and was a trained pastry chef. Two years ago I left NYC and moved closer to my family because I just wasn't feeling very well, and needed a better support system. When the Chiari was diagnosed, everyone who was close to me seemed to have their worlds turned upside down. I'd been "sick" since my late teens, with episodes going father back..some linked to confirmed auto immune disease, some unexplained..until we learned about Chiari and syringomyelia.

I then entered into the realm of a "brain surgery patient" one in which I've been settling into for the past 8 months. There was an unexpectedly difficult surgery, and a physical recovery which went slower than I was told, and the emotional recovery I am still going through. And I find myself asking.."Who am I now?"

I am not the same person.

I will never BE the same person. For one, I am minus the bunny stomping pain headaches and myriad of bizarre symptoms, plus I have that awesome scar running down my neck. I'm gleefully torturing my physical and occupational therapist twice weekly, but I don't know if I'll ever have the same stamina that made working in a professional kitchen possible. And I don't even know if I have that drive anymore.

My journey lately has been a reclamation of self, and a moving away from my biggest definer being brain surgery ( though that's still my trump card when anyone questions me. Try it..they have no comeback). I'm finding that the fear and overwhelming awareness of being someone with a brain malformation is not what I want the biggest impact in my life to have been. I am not a parent, I am not a spouse, so my sense of impact on the lives of those around me is limited in a different way.

I've gone through my life thus far as seeing myself as more of an artist..a chef, an actor, a blogger and aspiring writer, a person with a need to tell some sort of story, illicet some sort of emotional response out of others, and a pathological need to be understood. And suddenly, I am not scared of life anymore, I'm simply scared of not living it enough.

I do not claim that my story has more merit, my experiences more worth, or that my journey has been harder. I do claim that the catalyst for searching and self inventory has been different than those without tonsillar herniation may have had. Sometimes, in all this, I feel very alone. I can google my condition, I can download abstracts and PDFs, I can peruse support groups, and again I can learn what I am in term of a medical standpoint. But I still can't figure out who I am now.

I'd love to hear what others have experienced with this, and how their lives changed for the better, how their choices changed..not from a physical limitation, but from an emotional upheaval.

An Introduction, Puglet Style

2007-08-08T18:41:00.000-07:00

I'm not sure the best way to introduce myself here, in this new forum. I've blogged since 2004 about various aspects of my life, the good, the bad, the misspelled, and when Chiari entered the picture last year I started to write about that. It was a way for me to make sense of everything, to reconcile myself with everything..a fast and furious diagnosis, a surgery I was unprepared for, a recovery I was even less prepared for, and the aftermath of a life and body changed. It's still something I'm working out. I told Lace when she found me months ago that I worried how my "voice" could impact others, and I told Queli today when she graciously invited me to this blog that it was still a concern.

So who am I? This is pulled from a post I did on May 1st, Blogging Against Disablism Day.

"I am a 30 year old woman who stands 5'5, a bit less since my last surgery. I have legs that are strong, a stomach that is soft, arms that once could easily hoist 50 lb bags of flour and fingers that could crimp dough and shape fondant into rose petals and dip quickly into hot sauces to bring it to my lips to taste. My hands are less steady now, my arms struggle to lift two lb dumb bells, my shoulders are less muscle and more scar tissue but I'm fighting and slowly winning the battle to come back and plunge my arms back into bowls of batters. This incarnation of a brain surgery patient is only the latest. It will not be the last time I come back and rebuild.

I am a woman who has had more surgeries and emergency room visits than I have had years on this earth. I am a girl who is still scared that her past, present, and future will all come to a screeching halt in one of those curtained cubicles, who will be left a footnote in a chart, a diagnosis code, tucked away into someones computer and not into anothers heart. I do not want to go gently or quietly into that dark night. I want to write my own history, experience my own present, and plan and shape a different future.

I am an actor, a writer, a pastry chef, a slacker, a comedienne, a dreamer, an idealist, a humanist, highly intelligent yet ridiculously stupid and a ball of raging fury and fight and one liners and balloon whisks and prescription bottles and tattered plays and dog eared books. And beyond all else, I am a fighter.

I have fought my immune system, my thyroid, my womb, my kidneys, my joints, my neurological system, my colon, my brain, my genealogy, my genetics. I have fought my parents, my friends, my lovers, my employers, my co-workers, my teachers, my classmates, my doctors, and myself. I have warned others to not limit me, or judge me, or change me, or try and make me safer or quieter. Sometimes they listen. Sometimes they ignore. And when they make that choice, I make mine, which is to fight louder and harder and longer and more dangerously, to show that I can, and that I have no limitations.

I am a person who embraces being unique and seeks out what's different. I am not standard. My hair is too short, my laugh too loud, my speeches too long, my silence too deafening, my IQ too high, my potential oft ignored, my choices questionable, my decisions irrational, my fears insurmountable, my passions all consuming. I use humor as a defense, I equate food with love, I'd rather read a book than talk to people, I'm scared of making friends, I hate being exposed, and yet all I want is to be understood and embraced and have someone look at me in amazement and wonder the same way I look at this world. So time after time, I choose to lay myself open in a theater, or kitchen, or on paper, my ways to show you who I am, because I'm not just a patient under a scalpel, an image on a CT scan, an appointment in a book, and while you can tell me what I am, you will never tell me who I am.

I do not know how to define myself, or define my disabilities. All I do know is that I will not let anyone else try and do it for me. My damage is mine. I have earned it."

And now? I am still that woman. But now, at 8 months after my surgery, I am pulling up to 70 lbs at physical therapy. I am going to Spain in October. I am going to teach for two months in India. And I'm finally learning all the meanings behind " decompressed."

Who Am I Today?

2007-08-01T13:13:00.000-07:00

I was diagnosed with Chiari on 9/26/06 and I am amazed at how much my health has declined in only a year's time. I have had all kinds of battles in my head as I desperately try to grasp a tiny thread ~ trying to remember who I was, who I am and who I am becoming. Chiari has forced me to take a good, hard look at myself ~ will I fall or stand in the face of trials and hardships? My colors are true ~ my faith in the Lord, strong ~ but it's still a struggle.

My life journey has not been an easy one, but it has defined who I am and has made me strong. Several near death experiences ~ numerous surgeries ~ witness to the death of my brother ~ a child of divorced parents ~ survivor of two miscarriages ~ and now, Chiari. I AM a SURVIVOR ~ I won't go quietly into the night without a fight. Eye of the Tiger ~ Once again, I am facing my Goliath, but I know that God has incredible plans for my life. He will use this bump in the road for good.

Romans 8:28 And we know that all things work together for good, to them that love God, to them who are the called according to his purpose.

I feel incredibly blessed that God has placed this struggle in my life so that I have the opportunity to draw closer to Him.

Defining Self- post Diagnosis

2007-07-25T07:43:00.000-07:00

Yesterday, I was talking to someone about redefining myself after Chiari.
Thought it would be an interesting topic for discussion here.

I know for me, I had already had to go through that awkward adolescent phase after I came into recovery for my eating disorder 10 years ago. I had to figure out who I was without the anorexia.

So I thought I was fairly confident in who I was by the time the news of Chiari came.

But once it got to the point I couldn't work anymore, I found myself once again, undefined.

Prior to Chiari, I was a student, a therapist, an intern, and strived to be the best at all my roles.

Then in what seemed like an instant, it all faded. I stayed in school to keep my insurance, but my drive was no longer there and my grades went to mediocre at best.

I had no identity.

I was stripped of everything, and left with only two roles in life; being sick, and a child of God.

And believe me, I wasn't like "WooHoo! It's just you and me God! How awesome!!"

No, I was far from it. Even though I clung to my relationship with my Lord, I still could help feeling somewhat abandoned.

How lonely that time was.

Sure I had a lot of support, and people who cared about me. But I still felt alone inside, not sure of what was to be expected.

And I even avoided the Chiari boards online. I didn't want to know what others were going through because I was afraid to know what my future looked like.

It came to the point that I realized that I had to redefine my definition of self.

Who am I?

Who am I with this?

This started a new journey.

One where I had to define myself my God's standards, not the worlds.

And the Christian community was not always supportive.

There are Christians out there that believe that illness is a direct result of sin, or separation from God.

How bogus.

God made this body, with the malformation.

So what do you do with that?

My redefining came from the struggle of life with Chiari.

I found myself in situations where I had to trust God solely to get me through.

And found through it, that my relationship with Him grew stronger.

I no longer felt alone, because He helped me feel the touches of all the hearts around me wanting to help......

Which I balked at first.

Miss Independent couldn't have someone help her with basic self care.

But I had no choice really.

And out of that lack of choice, I found that I had prided myself on something so selfish. I loved to help, but couldn't receive it. Which, when you think about it is crazy!

Anyhow, I babble sometimes relentlessly.

The point is, that through this process I found myself in a new place where I feel more in my own skin than ever before.

My roles, and who I based myself on before, did not give me the satisfaction that I sought.

But I didn't realize it, until I finally let go.

The Big ?: How much hair will they take?

2007-07-24T22:23:00.001-07:00

I know when my sister faced a very serious brain surgery (Non-Chiari), involving a good chance of possible death, or further stroking, or rupturing of her anuerysm. She had only one question:
How much hair are you going to shave?

Sadly, this is a concern for many of us. I know it was one of my first questions when I faced my first surgery (decompression). And this concern came from someone who actually shaved her head in college to make a few more bucks for rent.

Surgery is important.

But hair loss is personal.

And especially since it is out of your control. You aren't going to the hair dresser, and saying go ahead and shave it. You are going under, knowing you will wake up with less hair.

It is a legitimate concern.

Experience has taught me, that surgeons aren't into shaving more than they have to.

I am sure the amount of hair is based on the surgeon, and the person......and possiblly based on what kind of mood the surgery prep guy is in at the time of hair removal.

For me it has been as followed:
PF Decompression: on the back of my head from the indent down was shaved.
Shunt: A small patch on the front right side, directly in line with my right eye on the very top of the scalp (it was completely not noticable on me)

Ironically, as I face sugery, I am thinking again: How much hair?

I am scheduled to have the ICT, which means two bolts in the sides of my head.
Then I have the PFR, which is the decompression in the back;
Plus they are using a skin graph, which is going further up the back.
And then they are putting in a drain (which mostly likely will go in the upper right side where my old shunt was, and there is already a hole in the scull)
And possiblly a shunt added to the mix.

It sorta sounds likemy head will be more shaved than not.

Anyhow, I sort freaked out the other day when I realized this could be the case......(when I was already in tears from pain, and pain anticipation, if you read my post on my other blog)

But now I am thinking I might turn this uncertainy around around.

I am asking the docs at TCI how much, and if more hair is being shaved than not, I might have it shaved the day before I go up so the hair could be donated.

It is a meek way to gain some control in the situation I am sure.........but it feels better to do it that way, then to wake up with crop circles.

If the hair removal will be minimal, I will just let my hair dresser deal with it post-op.

There is nothing quite as refreshing as post-op hair cut :) Specially since my hair is usually dry and dull the months after surgery.

Introductions

2007-07-23T22:30:00.000-07:00

ok, so I am starting this blog to create a place to ask questions, get answers, and share experiences.

Feel free to jump in at any time :)

If you would like to be able to submit your own posts to this site, please send me your email address to queli.is@gmail.com I welcome Chiarians to do this. It would just make this blog more enriched with ideas other than my own.

about me:

I am Queli, 33 female diagnosed in 2001.....my 1st of 5 surgeries was in June of 2002 (PF decompression), I have had a shunt, and then had it removed. I am scheduled for a revision on Sept 10th at TCI.

What about you?