Living with Arnold Chiari Malformation Type 1 (ACM1)

Such helpful news for me!

2012-01-20T13:23:00.001-05:00

I hope this helps someone out there as much as it helps me! I can't go and see this dr until my new insurance will pay for preexisting conditions. That is in April but as soon as it does I am scheduling an appointment with this dr. Because thanks to this article I now know what all my crazy dizzy/fainting feeling are!!

The Heartbeat Clinic

Two recent news articles that talk about Chiari...

2011-07-06T10:25:00.003-04:00

A newstory from Austin.

A newstory from Burleson.

It just gets better... NOT!

2011-07-01T12:50:00.003-04:00

Well my husband's insurance does kick in August 1st but here's the kicker they won't pay for pre-existing conditions for 1 year!! GREAT!! I am a walking pre-existing condition. Seriously why do things have to be so difficult!!

No meds...

2011-06-24T11:51:00.002-04:00

So I haven't refilled my Topamax for this month and boy can I tell... I haven't had insurance in over a year and now no Drs will fill it for me because I have run out of refills, I can't go to the Pain Management dr because they don't see folks without insurance. I saw my PCP just to get some meds but he is now saying I have to see the specialist. So now I wait (not so patiently) for my husbands insurance to kick in in August!!

This is going to be a super long month!!

Nice new article.

2011-06-17T10:24:00.002-04:00

Yesterday I was scanning twitter and was pleasantly surprised to see a local news article on a man with Chiari... WHAT?!?! They actually recognized that there are people living daily with this disease. Now I realize that I am one of the lucky ones. I have random symptoms headaches (daily) and right now this blasted feeling of bugs crawling on me, and maybe some numbness here or there. And of course the dreaded never being able to remember ANYTHING I wanted to say (which of course makes holding a conversation almost embarrassing) but these symptoms are totally doable!! I can thrive. This story took me back to thankful...

Anyways, here it is for you all!! And once again I was just surprised it was in my local newspaper!!

Now the flaws, the title... I know they had to make it all dramatic to get someone to read it and I realize that Chiari is HARD and dibilitating, but really... Yes many of us will die and many have... But there are many of us living as well!! Yea for him for getting to be in the study but why was he chosen, in fact how??? Why wasn't I asked? Or you? Or better yet how do we get chosen??? So many questions I now have!!!

Great Video

2011-01-04T17:29:00.003-05:00

Julie Carter is a great advocate for Chiari, in fact a number of years ago her family was featured on "Home Makeover" because she spent so much time working for US that she didn't have enough time or money to repair her home. Please watch this wonderful video she has put together and pass it on!!!

Private Practice and other things

2010-10-15T14:12:00.002-04:00

Last night on ABC's Private Practice part of the show was about a woman who they diagnosed with Chiari. I of course watched the show. To me it didn't seem accurate at all but of course I live with the disease daily and my diagnoses was nothing like that and I am sure to many of your, yours was not either! A quick and "easy" (because we all know surgery is not easy) fix.

The one positive that comes out of TV shows choosing to air the diagonses of Chiari is it gets the name out there and it gets folks wondering, HEY WHAT IS THAT???

And isn't that what we we want them doing anyway??

I have been feeling off alot lately. Lost of symptoms! I really can't go to the dr because we don't have insurance right now. I guess it is a blessing that I don't have a job because I would have to be missing work but I would also have insurance to go to the doctor so that I could be getting better. Such a double edged sword!!

Symptoms raring their head...

2010-09-30T22:00:00.002-04:00

I have been unemployed for a month now. Wow it really stinks to say that. The bad thing is now our insurance has ended. Without me working we can't afford COBRA. I refilled all my meds so that I would be ok because who knows what would happen if I didn't happen. The bad thing is I think I really need to go back to the neuro for another MRI, my symptoms are coming back in full force and I don't think upping my meds are going to help... UGH! All they did was keep me from getting headaches and the symptoms I am having are the tightening in my neck that eventually makes me feel like I am going to pass out because my heart starts racing as well as numbness in my hands and feet. This is so FRUSTRATING!

It would have to happen right at the time when I can't go to the doctor. Plus I haven't been to the neuro in LONG time!! 2 years maybe. I have have just been seeing the pain management dr because that had been working for me. What to do now.

Trying week.

2010-06-01T10:09:00.002-04:00

So we have been without insurance for a month. I started a new job in April and my insurance ended May 1st. However my new insurance starts today! HURRAY. I have never been without insurance or made my family be without insurance. It was a scary month.

Ok now to the point of that rambling. I ran out of Topamax a week ago. As we all know this drug is a lifesaver for headaches. I have been fortunate that the weather is nicer or I would have had some horrible ones. I did feel off all week and my taste buds are back to normal, except I had gotten so used to my old taste buds that everything tastes super sweet now.

Well today after work I am headed straight to the pharmacy to get my prescription. I don't like the way I feel without my meds!!

Hello to my new readers!

2010-03-22T10:14:00.002-04:00

I will answer your questions Kate! Yes I do still take Topamax. I know a bunch of people who start it hate many of the side effects, the metally taste, I know it totally change the taste of Diet Coke for me but now I don't remember what Diet Coke tasted like before Topamax. I remmber when I first started taking it the Dr said I want to warn there it one side effect I have to tell you about and he was super serious. I was like great. I am going to grow a 3rd eyeball. He says. Weightloss. And I say OH DARN!!! I proceeded to loose 35lbs that year! I haven't looked better! I get compliments all the time on how great I look and I haven't done a blooming thing it is AWESOME!! I take 2 in the morning and 3 at night, for a total dosage of 125. My Excedrin usage is about 2 pills a day and my favorite Excedrin is the tension headache. That is the one that works the best for me. I have Tramadol to use but it really doesn't work as well. So I get my liver checked every 6 months because I prefer the Excedrin. I hpe that helps!!

So excited...

2010-03-16T09:34:00.001-04:00

I have a new follower! She has Chiari as well and she has had surgery but it wasn't decompression! Which gives me hope for days like today when I feel awful but had to pull myself out of bed, throw back some meds and go to work!

Here is her blog! ENJOY!!

It's been awhile...

2010-01-17T22:29:00.002-05:00

Which in the world of ugly diseases can be either a good thing or a bad. In my case that is good. I mean I have my days where there is an ache in head, sometimes a throb, but the pain in manageable! I just had a check-up this last month with the pain management dr and all is well! Our course of action seems to be working!

I asked her once again is it ok that I take 2-4 Excedrin Tension a day?? She said yes! She said that is why I check your liver every 6 months. She told me that I really needed to pay attention to what caused my headaches. I know what they are:

Lack of sleep- can't control I have way to much to do and not enough in the world to do it.

Weather- can't control when it is going to rain

Stress- can't control who is going to make me angry in a given day

The one thing she did say that would help me is to take more time for myself... really I have 2 jobs, 2 kids and a husband and where do I find that???

All in all things are going good on managing this ACM1 and the longer I can hold off on surgery the better!!

Great news for Chiari! Thank you to a fellow Texas Representative Kay Granger!!

2009-07-30T11:37:00.005-04:00

July 27, 2009 --

We are excited to announce that Conquer Chiari has achieved a major
milestone in our fight against Chiari.

Specifically, through a lobbying effort, we were successful in getting the
US House of Representatives to focus on Chiari research in the recently
approved Labor, Health, and Education Appropriations bill (H3293). The
language, which appears in the House Report accompanying the bill (HR
111-220), directs the NIH as follows:

"Chiari - The Committee recognizes that a research conference titled
''Chiari Malformation: State of the Research and New Directions'' was
convened in November 2008 to identify the current state of knowledge and to
identify key areas of research. The Committee encourages aggressive measures
toward implementing these recommendations, including but not limited to:
using advanced engineering and imaging analysis to develop an objective
diagnostic test for symptomatic Chiari, understanding the genetic basis of
Chiari, and increasing focus on pediatric patients including symptoms,
optimal treatments, and quality of life issues. The Committee requests NINDS
to submit a report to the Committees on Appropriations of the House of
Representatives and the Senate by April 30, 2010 detailing its progress."

The legislative language is an extension of the work Conquer Chiari did in
organizing and getting NIH funding for the research conference held in Nov.,
2008.

We believe that if passed by the Senate and turned into law, this will
translate into significant funding of Chiari research by the NIH. Although
there are no guarantees, we are hopeful, and working towards, the Senate
adopting the same language.

The Chiari community owes a debt of gratitude to Rep. Granger, Rep, Lowey,
and their staffs for making this happen. If you live in their districts (NY
and Texas), please consider sending an email of thanks to their offices.

You can see the actual House Report 111-220 here:

The Chiari language is on Page 120.

Rick Labuda, Executive Director

Conquer Chiari

This weather!

2009-04-29T14:10:00.003-04:00

I have had a daily headache thanks to the darn weather! I was doing great and then BAM! I am so tired of the rain. As soon and the barometric pressure starts to fluctuate my headaches go through the roof!

I have started seeing a chiropractor who actually knows what ACM1 is! I am so excited! He does nothing around my neck area but I am hoping that the adjustments with help with blood flow to my brain!

I can say that have ACM1 does give me one thing to be thankful for taking a concoction of medications daily and one of the side effects (among many) is weight loss! As my coworkers left today to go to Weight Watchers and I pray I never have to do that again. I have struggled with my weight and now I don't have to. It just fall off (30lbs to be exact!) Thank you Topamax! Oh yeah thank you for also making cokes taste fun and my hands feeling tingly and numb but you are working on keeping my headaches to a minimum so that is my true THANK YOU!!

Such a blessing!

2009-04-02T09:15:00.001-04:00

Yesterday I went for my 6 month check-up and I am doing really well. And I just had to rejoice. I think we have found a plan that works. I am just maintaining. Sure I get headaches but they are minor compared to what they used to be. I know what my triggers are and that is great! Also he said it was ok if I just wanted to take Excedrin instead of the prescription pain medicine. His only concern was reflux so he wanted me to start a 14 regime of Prilosec. I can handle that. What a great visit!!

I could be so much worse...

2009-01-23T17:13:00.002-05:00

"There is always a light at the end of the tunnel."
"The glass is half full."
"There are always those who are less fortunate than you"

All of these are sayings that you hear almost daily, at least weekly. And I received and email today that really hit home... I am super thankful that my Chiari doesn't cause me to be this bad!!

Thank goodness things are better for him and right now me! God it good!

Feeling AWFUL

2009-01-12T09:12:00.002-05:00

So I know it has been FOREVER since I have written, but I have been feeling ok lately. Not the greatest at times but a headache here or there was manageable. But I have litearlly been coughing with this sinus CRAP since November and I can't take it anymore.

We all know that coughing is like the worse thing for anyone with ACM. Well I have been coughing so hard that I literally choke and almost throw up. In fact a I threw up in my hand not too long ago. I cough all the time. I am MISERABLE. It is like there is one piece of phlegm just stuck in my throat torturing me.

I slept on the couch last night in the hopes of not coughing, well not only did that not work I also got a crick in my neck, so now I have an even worse headache NICE!!!

Someone please save me from this misery!!!!!!!!!

In pain...

2008-10-21T11:20:00.002-04:00

I am on day 4 or something like that of a headache. I have taken all of my headache meds and nothing is working. So here I am once again just trying to make it through the day. It SUCKS!

I just want to go and lay down. And I can't. I really wish someone would stick a needle in my head and just pull it back a little relieve just a tiny bit of tension. That is all it would take. It is just so miserable!

I am scared I am going to overdose on pain meds. I want to take a hydrocodone but I need to be able to function at work. So here I sit and suffer...

I got the weirdest call on Saturday...

2008-08-11T12:07:00.002-04:00

One of my mom's best friends daughter was just diagnosed with Chiari! I mean seriously what are the odds?? She has a 5mm herniation. She just gave birth not too long ago and had been having strange symptoms. She is so relieved that she has someone to talk to! I know how lost she is feeling right now as I was in her shoes just a year ago!! Now I feel like I know everything. Although I am far from being a scholar!!

Who else freaks out ...

2008-07-15T10:28:00.003-04:00

when your 5 year old comes into your room this morning while you are getting ready for work and tells you he has a headache right at the base of his skull?? Only parents with rare head diseases that's who! Let me tell you my heart stopped beating for a minute and I started playing 20 questions with him.

He played kicked ball at school yesterday and I asked if he got hit with ball and he says mom that ball is not going to hurt me. He played rough with daddy last night and daddy lifted him up kind of weird and that was the move that put a strain on his head and neck. NEVER AGAIN! We don't know if my boys have CM1 or not and I don't want to do anything that could progress it in anyway!!

Talk about freak out moment!!!

He was better by the time we left for school.

Yesterday was another bad day...

2008-07-15T10:26:00.000-04:00

By 10:30am I had to go home from work. I had taken my Tramadol and that hadn't even dulled the pain. I was leaning back in my chair at work and knew it was not going to a productive day. I realized this was going to be a day better spent just lounging on the couch. So that is what I did...

Went to the dr.

2008-07-03T16:06:00.001-04:00

I went to the dr. for my refill visit. My dosage was upped because I have been having headaches a little more frequently. I am now taking 3 pills of Topamax at night. Let's see how that goes. I was also told to try really hard to stick to the Tramadol and not take the Excedrin because too much Excedrin can give me an ulcer in the long run. And that would not be fun.

Disney + Chiari

2008-06-24T17:27:00.004-04:00

Do not equal the Happiest place on earth....

So I went to a conference in California. Had a BLAST!! Went to Disney...

And although it looks like I am smiling. I am so dizzy it isn't even funny. Space Mountain used to be my most favorite ride in the whole world. NOT ANY MORE!!!!!

We rode a few more but the ride that really did me in was The Materhorn... I tighten my neck on that ride for fear of whiplash and ended up with a 3 day headache of DEATH!!!

Seriously no amount of drugs would make it go away. I even took hydrocodone and it didn't even make a dent....

We are headed back to Disney in November and taking the boys. I now know that I will not be riding Space Mountain or the Materhorn!!!

Ebay auction for a good cause...

2008-06-13T17:24:00.001-04:00

Please check out this auction, bid and win!!

My good online friend makes these dresses and has recently made one for a celebrity!

Fairy dress auction

Today I am not feeling so good...

2008-06-01T17:13:00.002-04:00

Gosh... How I wish it weren't Sunday... Then I could have the pharmacy call in a new prescription of Tramadol. But it is and I can't. I have already taken 4 Excederin... And that hasn't helped... Seriously my head and neck feel like they are going to explode from the tension. I just want some relief!!! I am going to go ahead and call the pharmacy to put a call into the dr. tomorrow morning. I want to be prepared!!!

This has not been a good week.

2008-03-14T10:23:00.002-05:00

I don't know if it is the weather or what, but my head has felt absolutely AWFUL this week!! I wake up with a headache and have to take my Tramadol by midmorning. The good thing is I can usually get the headache to go away by lunch... I thought maybe I am not eating enough for breakfast, so yesterday I got Mickey Ds. Nope that didn't work.

I HATE HEADACHES!!!!

Pain Free!?!

2007-12-25T21:57:00.000-05:00

I can now say I have been pain free for 2 days... HURRAY!! That is a small accomplishment that I am worried I am jinxing. After having an excruciating headache for more than 3 weeks, 2 days of no pain literally feels like eternity of no pain. I pray I have many more days of no pain!!

Sadness...

2007-12-14T17:23:00.000-05:00

That is what I am feeling today. I learned yesterday at my birthday dinner that my Primary Care Physician died Monday in a motorcycle accident and I am devistated. I really respected this man. He is the one that wanted to call a horse a zebra, be proactive with my headaches and get me a MRI. He is the one that diagnosed my Chiari. Without him I could still be searching.

I am so sad. He was so young. 49! Last month he would have turned 50. Right before Christmas. WHY!?!?! I feel so blessed that I saw him just a couple of days before Thanksgiving.

You will be missed Dr. Welch. Forever riding your Harley in the sky with those piercing blue eyes. You were wise and will be missed!!

Another new Dr.

2007-12-06T09:18:00.000-05:00

I saw a new doctor on Tuesday. He was a Pain Management Doctor. I am now on a drug called Topamax. He did tell me there was one side effect. I am bracing myself for something devistating like I will grow another nose or something and he says. Weightloss! Hallelujah! This is the best side effect one could ever have! Weight loss here I come!!

He also want's to try some injections in my neck that will temporarily deaden my nerves that are being constricted by my tightened neck muscles. Travis isn't so keen on this idea. I have posted a question about this on my Chiari listserv and have gotten mixed responses. I think right now I am going to do a month of Topamax and go from there.

Don't tell anyone but as far as headaches go, I have had a pretty good month. I know I just jinxed myself, but oh well...

Couldn't have said this better myself!

2007-11-20T11:54:00.000-05:00

I found this post on a fellow Chiari's blog and boy she hit the nail right on the head (all puns intended!)

BLOG

http://chiariandsyringomyeliaincanada.blogspot.com/2007/11/but-you-look-fine.html

Coughing HURTS!!!

2007-11-02T11:37:00.000-05:00

Ok so the weather is changing. That is all fine and good but now I have this stupid cough because I have a constant tickle in my throat. Well you know what! COUGHING HURTS! It makes my head feel like it is going to explode! The pressure coughing puts on your head is out of this world. I am so ready for this cough to go away!!

Neurosurgeon Appointment

2007-10-29T12:50:00.001-05:00

Well it feels like we are back a square one. We went back through everything we had discussed on the phone. And I told him that I had talked to the neurologist as well and he had said that the neurosurgeon was more than welcome to call him so they could talk.

He said that of course the decision for surgery was totally up to me and if the headaches weren’t too debilitating we could continue to hold off. My biggest concern about all this is the effect that the medication is having on my internal organs. The Axert I am prescribed now I am only supposed to take 9 pills a month. I take almost 1 daily. I am ok with taking a lot of Tylenol or Excedrin but I know that is hard on you liver and stomach. Another concern I have it the surgery has about a 60% success rate. It is great with stopping other symptoms I could develop such as numbness, extra clumsiness, hard to swallow. But it has poor success with stopping the headache, which is the only symptom I have.

He said after talking to the neurologist he would give me a call and we could go from there. He said if I wanted he would refer me to another neurologist to discuss options. I am just tired of the run around with no definite answer.

Home Makeover and a chat with the neurologist.

2007-10-22T11:22:00.000-04:00

So what did everyone think??? I for one am even more nervous now for my surgery. But I am super happy that this very unknown condition was highlighted on national TV. Publicity is helpful when searching for a cure!

I spoke to the neurologist today, he says that he and his NP talk daily about their patients and he would be doing the same course of action his NP is following. I said I am not having migraines. He then tells me that Chiari doesn't cause headaches. ARE YOU KIDDING!!! That is like the #1 symptom! I now know I am not returning to him EVER! Do you research. Just a simple search on google about Chiari and one will see that headaches are a symptom. He then tells me he has many Chiari patients and I had to bite my tongue to keep from saying wow you have them fooled huh.

I also found a local Chiari group. They have monthly meetups and I can't wait to meet others like me!!

Surgery is imminent.

2007-10-19T16:32:00.000-04:00

I just got off the phone with the neurosurgeon. He said he had been receiving copies of my records from the neurologist but the last one he received was from July, I told him he was missing two reports.

Anyways after telling him my concerns he tells me that he did send me to the neurologist to see if the headaches were caused by anything other than Chiari. (Which they obviously weren't since nothing I was given worked.)

He wants me to make an appointment to see him again, it was almost time for my 6 month check-up. We will discuss the last 6 months, having more MRIs done and then surgery, which we know now is my only option in the hopes of releaving the pain.

There are many non-surgical things that can be done to help keep you from getting a headache or any symptoms but with the job I do, traveling, sitting at the computer, standing behind a table at recruitment fairs, many of the techniques are just not feasible for me. I am going list them below. And you tell me...

Symptom Alleviation Methods

Not sure what to do...

2007-10-18T12:38:00.000-04:00

I just saw the neurologist nurse practioner today. I go every 6-8 weeks because my headaches are still completely out of control. I just don't feel like she is doing the right thing. Everytime I look at her diagnoses sheet is says Migraine. I told her the first visit that I had Chiari not Migraines and she said that it wasn't the Chiari causing these headaches. I know now I should have just got up and left. I did see the real neurologist on my very first visit and he validated the Chiari. I now don't know what to do. She has completely changed my medicines again and I am going broke. My boss suggested I talk to my neurosurgeon (the guy that referred me in the first place) and tell him what is going and and see what he suggests. Any ideas???

Why???

2007-10-16T10:34:00.000-04:00

I have felt awful the last couple of days. I thought maybe it was because I started back to yoga last Monday after a 2 month hiatus and I did some pose that made me hurt. But I am really hurting. My head is back to feeling like it did before I was on all sorts of medication.

Yesterday I took the day off to straighten my house, we moved Logan's furniture into Cole's room and there were books and piles of clothes everywhere. I would start to put stuff away but my head hurt so bad that I would just have to lay on the floor. I didnt' anything accomplished that I wanted to.

I am back at work today and guess what, my head still hurts. AGHHHHHH!

Chiari Do's and Don'ts

2007-10-11T09:43:00.000-04:00

I saw this on another Chiari Blog and thought I would share...

DO'S & DON'TS WHEN DEALING WITH SOMEONE WITH CHIARI

DON'T ASSUME BECAUSE I LOOK WELL THAT I FEEL WELL. LOOKS CAN BE VERY
DECEIVING. MANY DAYS I LOOK GREAT, BUT I FEEL TERRIBLE.

DON'T TELL ME YOU KNOW HOW I FEEL. NO ONE KNOWS HOW ANYONE ELSE FEELS.
TWO PEOPLE WITH THE SAME DISEASE MAY FEEL TOTALLY DIFFERENT.

WE ALL HAVE VARYING THRESHOLDS OF PAIN AND PAIN CANNOT BE MEASURED.

DON'T TELL ME ABOUT YOUR AUNT GERTRUDE AND HER CHIARI AND HOW WELL SHE
MANAGED IN SPITE OF IT. I AM NOT AUNT GERTRUDE AND I AM DOING MY BEST.

DON'T TELL ME, "IT COULD BE WORSE." YES, IT COULD BE, BUT I DON'T NEED
TO BE REMINDED.

DON'T DECIDE WHAT I AM CAPABLE OF DOING. ALLOW ME TO DECIDE WHAT
ACTIVITIES I CAN PARTICIPATE IN. THERE MAY BE TIMES I MAKE THE WRONG
DECISION, AND IF I DO, I'LL KNOW IT SOON ENOUGH.

DON'T BE UPSET THAT YOU CANNOT EASE MY PROBLEMS. IT WON'T DO ANY GOOD
FOR BOTH OF US TO BE MISERABLE.

DON'T ASK ME HOW I FEEL UNLESS YOU REALLY WANT TO KNOW. YOU MAY HEAR A
LOT MORE THAN YOU ARE PREPARED TO LISTEN TO.

DON'T ASSUME BECAUSE I DID A CERTAIN ACTIVITY YESTERDAY THAT I CAN DO
IT
TODAY. CHIARI IS EVER-CHANGING.

DO LEARN EVERYTHING YOU CAN ABOUT THE DISEASE. THE MORE YOU KNOW, THE
BETTER EQUIPPED YOU WILL BE TO KNOW WHAT TO EXPECT.

DO REALIZE I AM ANGRY AND FRUSTRATED WITH THE DISEASE, NOT WITH YOU.

DO LET ME KNOW YOU ARE AVAILABLE TO HELP ME WHEN I ASK. I'LL BE
GRATEFUL.

DO OFFER ME LOTS OF HUGS AND ENCOURAGEMENT.

DO UNDERSTAND WHY I CANCEL PLANS AT THE LAST MINUTE. I NEVER KNOW FROM
ONE DAY TO THE NEXT HOW I WILL FEEL.CHIARI IS LIKE THAT.

DO CONTINUE TO INVITE ME TO ALL THE ACTIVITIES. JUST BECAUSE I AM NOT
ABLE TO BIKE RIDE ALONG WITH THE GANG DOES NOT MEAN I CAN'T MEET YOU
FOR
THE PICNIC AT THE END OF THE TRAIL. PLEASE LET ME DECIDE

AUTHOR UNKNOWN

Extreme Makeover Home Edition

2007-10-10T13:29:00.000-04:00

Just a quick plug for Extreme Home Makever.

On October 21st they will be helping a family whose mother and daugther have Chiari Malformation.

Here is a link to their story!

The neurologist office called.

2007-09-15T11:43:00.001-04:00

And just like the NP had thought I am not having seizures, thank the Lord. The neurologists said I should make an appointment with my cardiologist. I am 28 years old, I don't have a cardiologist!!

Really I think the NP and neuro need to start working together and get on the same page. They have conflicting ideas, yet are supposed to be a cohesive team. I am going just going to follow the NPs orders for now as she is the one that has seen more often. And her plan, seems to be working!

I am normal...

2007-09-06T16:15:00.000-04:00

I just got back from my neurologist and they hadn't reviewed my EEG. But the nurse practitioner looked at my headache calendar and has pretty much decided the fainting was from the headache, which I already knew.

I am supposed to continue her prescribed course of action and go back in 6 weeks.

Pics of my EEG

2007-08-31T09:50:00.001-04:00

I told you was going to post pictures of my Medusa do. So here they are:

I still have no results. I guess no news is good news!

So much to post... So little time!

2007-08-20T13:43:00.000-04:00

Well since my last post so much has happened!

On the 6th I was feeling lightheaded before leaving a coworkers office and instead of making a fool out of myself by saying, "Excuse me while I put my head between my legs," I decided I just wanted to go and put my head on my desk. I made it one step out of her office and passed out cold. This wasn't just a your knees go loose and you fall the floor gracefully, this was a your body goes as stiff as a board and you land chin first on a concrete floor covered with industrial carpet passout. Oh the irony of not wanting to cause a scene!

I was taken by Ambulance to the ER where I was x-rayed for broken jaw (none, thank goodness) and CT Scanned for a brain bleed (none again!).

Instead I got a huge bruise and goose egg on my chin
(this picture doesn't even do it justice!) and a blown vein from their first attempt at an IV.

I was released that afternoon and was told by my neurologist that I needed to have an EEG done "because there was no way it was the Chiari that caused me to faint."

Right have you read any of the listservs I am on. Oh well I digress.

So here I am today officially hooked up to 23 wires for the next 48 hours having my brainwaves measured. Oh what fun!! Don't worry I am going to take pictures. Who wouldn't want to document this medusa hairstyle?

So that is what a migraine is...

2007-08-06T10:30:00.000-04:00

Friday I had the worst headache, but it was different from all my pressure headahces. It just ached across the top of my forehead. I tried every prescribed medication I had. NOTHING WORKED! Laying down made it worse. I slept terribly Friday night. I literally sat up in bed to sleep. Around 4am I felt so nauseous. I ran to the bathroom and got sick a couple of times and went back to bed. I knew that the sickness was simply from the pain. Fast forward a couple of hours, still feeling sick, still have a headache. Get sick again... and again. Finally I forced myself to eat something so I could try and take some more medicine. I took some Excederin Tension and guess what, it worked! How ironic that I have 3 pain prescriptions and none of them worked but a non-prescription drug worked! And thank goodness it did.

I don't ever want to experience that miserableness again!

Back from the dr.

2007-07-26T14:39:00.001-04:00

Today was my 6 week check-up. I now have an even more complicated medication regime. The Nurse Practitioner changed everything up because she said that I shouldn't have to take pain medicine everyday. I am now on my original medicine that I started 6 weeks ago plus she added something called Kappra. It is actually an anti-seizure medicine. There are 2 possible side effects that I could develop. The first is hallucinations. The dr. said that if I wake up in the middle of the night and see a pink dog in the window, not to be alarmed! The second is this medicine can make you mean/mad. GREAT!! Like I am not already mean enough! She said that if at anytime I feel like the side effects are worse than the cure we can change. Mostly she said that the biggest side effect will probably be fatigue. Like I need any help with that!

So that was my visit in a nutshell. She also gave me a new pain med. Hopefully I won't have to take it too often and I go back in 6 weeks...

On a side note Travis and I trying to decide if I should switch insurance. I am in open enrollment for mine but we are moving to a PPO which would be fine you have deductibles and they pay 80/20. Well we are pretty sure I will have surgery within the year and we don't want to have to pay for it. Gotta love insurance!!

This was a BAD weekend.

2007-07-02T09:27:00.000-04:00

I got up on Friday and knew that it was going to be a bad day. I made myself take a shower, get dressed and go to work. But by 9 am I had coworkers telling me to go home, I looked that bad! So I went home and laid on the couch for the day. I took every drug I could (prescribed that is) and it still didn't work. I could barely move my head or my eyes. I felt horrible. Closing my eyes didn't help because the muscles in my eyes hurt so bad.

So I muster through it and woke up Saturday still feeling pretty awful. I went through the day trying not to be a party pooper and acting like I felt ok. I didn't. No one can really know the pain. As unless I let it show on my face, they have no idea. Once again maxed out on my medicine. Got up Sunday feeling better but through the middle of Sunday school I had to go take more medicine. Fought my way through church without wincing too much every time we had to stand up, even made it down the aisle for communion. But dinner I was feeling much better.

This morning I woke up headache free! NICE! Yet here is it 8:30 and I have already taken some medicine because I could feel it coming on.

I just don't know how I am supposed to live like this forever. This is literally taking the life right out of me. It is stealing my life!

Saw the neurologist today.

2007-06-13T14:43:00.000-04:00

Dr. Herzog is a really nice man! We talked about my headaches and he asked if I have always had headaches and I said I had them occasionally as a child but nothing severe and he kept saying well that is not common. He said children should not have a headache of any kind, severe or not.

This helped him to determine that my headache is probably not all from the Chiari. He has put me on a drug regime, that I am to follow until my next appointment in July.

The medicine is actually to help alleviate tension/pressure headaches, which is what he feels I have that is more prominant than the Chiari and could cause the Chiari to act up.

I will take this medicine every night for week. After a week if I don't see a decrease in headaches I will take 1/2 a pill in the morning and 1 and night for a week. If this doesn't decrease I will take 1/2 a pill in the morning, 1/2 at lunch, and 1 at night until my follow up visit. He also gave me a different muscle relaxer to take with the pain medicine but I can only take 8 total in a week. If that doesn't work I am to use the pain medicine with all that, that I had originally be prescribed by my neurosurgeon! Did you get all that???

He wrote it all down for me. And like my PCP who had the analogy of calling a zebra a horse he also used an analogy of fleas and ticks. The ticks are the underlying (tension) headache and the fleas are the Chiari.

He too thought holding off on the surgery was a great idea and said that in 6 months when I go back to Dr. Michael (neurosurgeon) to have him do another round of MRIs, to check the herniation. He said that if the herniation stayed the same then to continue this plan, but if the herniation changed he would advise surgery.

The reason for this is because the longer we let the herniation become. the more likely it is for other symptoms of Chiari to appear and having the surgery would keep them from occuring.

But like everything there is a risk in the surgery as well. HMMMM.

Feeling not so hot today...

2007-05-29T15:11:00.000-04:00

I am feeling like a did a few times before I was diagnosed. I can't describe the feeling but my head feels totally full of water that when I move it sloshes around like a fish bowl. It also just hurts. No particular area just everywhere. Earlier I was in a coworkers office and just the walk back to mine caused my head to hurt so bad, I also couldn't turn to look at someone when they spoke it was like I was pararlyzed. I hadn't felt like that in a long time.

I am feeling better but still feel just weird. I am so ready to see the neuro to find out what we can do!

The got the fax!!

2007-05-15T10:18:00.000-04:00

FINALLY! I called the dr. office this morning and they got the fax from the transcriptionist yesterday! She told me I should be expecting a call from the neurologist this week!

Did they have to go to China!?!

2007-05-08T17:55:00.000-04:00

So I called the neurosurgeon's office again today to see where we were in the process. We are still waiting for the notes to come back from the transcriptionist!! Seriously did the send them to China???

The good news is, I have been feeling pretty good, I did just have to take some pain medicine but I haven't had to take it every 4 hours like I did last month!

Today would have been my surgery day...

2007-05-07T13:40:00.000-04:00

If I wouldn't have had a 2nd opinion. And now I am not so patiently waiting for the referral to the neurologist for pain management.

I had a good week last week but yesterday was bad. But like you all know there are good days and bad days. The 1st nuero wanted to jump right into surgery (which would have been today). The 2nd nuero wanted to do more tests that ended up concluding that I would be a candidate for surgery but I chose nuero#2 to try and do pain management 1st.

I know where we are in process...

2007-05-02T16:18:00.001-04:00

I called the neursurgeon today to see where we were in the process and we are still waiting for the drs. notes to come back from the transcriptionist, the he checks them, then the referral is made. So hopefully we will have an appointment in the next week!

Well the good times have ended...

2007-04-30T16:50:00.000-04:00

I have the start of a headache coming on. I just took some of my pain meds so hopefully it will make the pain bearable.

I still haven't heard from the neurologist about an appointment. If I don't hear anything by Wednesday, I am calling.

AN UPDATE...
Although I have had to take medicine, it seems to stop the headache!!!

Friday was BADDDDDD!!!!!!

2007-04-30T10:20:00.000-04:00

I woke up with the worst headache. Made myself get ready for work. Got out the door and was trying to get going with the day. I had an event at work on Saturday that I was in charge of. By 9:30am I couldn't stand it anymore. I really thought my head was going to explode!!! I tried to get everything together for the next day's event and delegated to someone in the office. (Thank goodness for great co-workers) and I went home. I spent the rest of the day on the couch. I was so miserable that I didn't even change out of my work clothes, I got my pillow and headed straight for the couch. This had to be one of the worst days ever.

I know what caused it... Wednesday I had to fly to Houston to do a college fair at M.D. Anderson. My travel bag weighed at least 50lbs. Well I didn't check it because I knew it would be a quick trip. The bag does not fit down the aisle, so I had to turn it sideways and limp my way to a seat. I then had to hoist the bag into the overhead bin. Super bad decision!!

I woke up Thursday not feeling so great. Bad headache and super tense neck and shoulder muschles. I even went to the mall at lunch and paid $12 for the 15 chair massage out in the middle of everyone in the mall. I was past anyone thinking I was crazy. This 15 minutes was well spent. But of course there is never quick fix. So I was still sore and I think Friday was just the end all be all.

Saturday was much better and Sunday... I don't want to say it out loud. But Sunday was the first day I have been truly headache free in MONTHS!!!!

Of course here we are on Monday, and I can feel one starting to crop up. Oh the joys of crazy sicknesses!

2nd Confirmation

2007-04-23T13:48:00.000-04:00

I had my 2nd appointment with Dr. Michael and after looking at the MRIs done on Thursday he reconfirmed what Dr. Teal (the first neurosurgeon) had said. I do have CM1 and he said that I could now have surgery. However he said that he felt that right now I could just do pain management until any other symptoms occur or the pain just becomes unbearable that surgery is the only option.

You should have seen the look of relief on Travis' face. I now am being referred to a neurologist to discuss pain management. As we found out today my headaches could actually be combination headaches the Chiari plus a migraine, or tension, or sinus. The neurologist can help me get on the right medicine so that I can function from day to day.

I go back to Dr. Michael in 6 months unless I feel I need to come back sooner. Travis did ask if the Chiari is something that can get worse and the dr. said yes. He said that is probably why the real painful headaches just started in November. My cerebral tonsils have moved further into the spinal column. I asked him I will know if the Chiari is worsening, he said that I will start having other symptoms then just a headache. The main symptom would be tingling or loosing feeling in my feet, hands or arms. He said if this happens before my 6 month check-up to definitely come see him.

He basically said that surgery will be inevitable, but we can put it off for now.

Buried Alive...

2007-04-21T22:21:00.000-04:00

I can now say that I know what it feels like to be buried alive. I had my MRIs on Thursday. I was literally in that cocoon for 3 hours. The only time I got to come out was when they needed to switch the headpiece. I did get 1 chance to go to the bathroom and get a drink of water about and hour and half into it. The radiologists (yes there were two because the younger guy who had been doing this for 4 years had never done a CSF MRI aka CINE for Chiari) were super nice and said I was such a trooper for having such extensive tests run.

I have another appointment with the neurosurgeon on Monday, he will tell me what the MRIs said.

I have been feeling ok. My head hurts all the time and I know Travis is getting frustrated with me because at the end of the day I just need to lay around because I am so tired and in so much pain that it takes all I have just to play with the boys. I have tried to explain to him that it is not me being lazy. I just don't want him to resent me. I have told him how much I appreciate all he is doing for me and the boys.

The MRIs are scheduled!

2007-04-16T09:36:00.000-04:00

My 2nd set of MRIs are scheduled for Thursday afternoon. One of the MRIs will measure the flow of spinal fluid, it is called a CINE MRI, the second MRI will actually be of my who spine, this is called a cervical MRI. With the tests the dr should be able to tell much better if I really really do have CM1 or something else.

Today I feel bad...

2007-04-12T13:10:00.000-04:00

Nothing I do or take will get rid of my headache. It is barely making a dent in decreasing the pain. The only relief I got was slumping down in a chair and putting my feet on the edge of the desk, semi fetal position sitting in the chair. But you can't do that at work all day.

I have thought about calling the neurosurgeon to get a different type of medicine. The meds I am using now were actually prescribed by neurosurgeon #1 and I have already had to refill the pain meds. I will be refilling the muscle relaxer in just a few days.

I literally have to take 2 pain pills every 4 hours and 2 muscle relaxers every 6 hours to make it through the day. And those don't rid me of the pain completely, but usually take the edge off.

NOT TODAY THOUGH!!!!!

Still Waiting...

2007-04-10T16:35:00.000-04:00

I am waiting not so patiently for the 2nd neuro's scheduler to call me to schedule my MRIs and an appointment with the neurologist.

There is a ton of red tape, as everyone knows. I will update as soon as I know something!

Great 2nd Opinion

2007-04-04T14:03:00.000-04:00

I went to a different neurosurgeon this morning. He said that he can’t be 100% that I have Chiari Type 1 Malformation without running some more tests. He feels I should not have the surgery until these tests are run. I now scheduled for a cervical MRI, a CINE MRI and a visit to the nuerologist. I am cancelling my May 7th surgery and going to switch to this second neurosurgeon. I am more comfortable with is proactive response versus the first neurosurgeon’s reactive response. Dr. Michael (the 2nd nuero) did say that he can’t guarantee that in a couple of months he may be recommending surgery for me but he would like to start with these other options first.

I will keep everyone updated as we continue on this journey.

Well....

2007-03-30T16:20:00.001-04:00

I had my neurosurgeon appointment yesterday. And like my PCP had thought I have Chiari Type 1 Malformation. And basically that means my cerebellum sits to low in my skull and it pushes on my spinal cord and also messes with the flow of spinal fluid. My herniation is around 7mm. Anything over 5mm the course of action is surgery. I am now schedule for Subopcipital decompression surgery on May 7th. The surgery entails the dr removing a 2x2 inch square from the back of my skull as well as a C1 lamenectomy, the removal or partial removal of my 1st vertebrae on my spine.

The surgery will take about 6 hours and I will be in ICU over night, then I will be in the hospital for around 4 days. I an unable to go back to work for a month and unable to drive for at least 2 weeks.

I am working on getting a 2nd opinion, but wouldn’t you know it all dr. close at noon on Friday. Everything I have read online shows the same thing and that this dr is not too off on his diagnosis. Please pray for us, me Travis and the boys as you imagine Travis isn’t taking it too well and I am scared to death.

I have an appointment!!!

2007-03-28T12:59:00.000-04:00

I have total mixed emotions about this. I am very nervous about tomorrow. What will he say, what will he do? I have to take my films from the MRI with me so he can discuss them. Weird because I thought he already had them.

I am excited because I hope this means I am on the road to pain relief.

The appointment is at 8:30 tomorrow and I hope to come back with a great update!

Yesterday was bad!

2007-03-28T09:50:00.000-04:00

I had been doing so good since the diagnosis. My headaches were there but totally managable. I hadn't had any of the pain/stiffening in my legs after getting up to walk.

But yesterday holy cow! Everytime I stood up to go to the bathroom at work, which is alot because all I drink is water (ALL DAY LONG) by the time I was halfway there I would literally have to run in fear of fainting. I would hurry into the stall just so I could sit on the toilet and put my head between my legs. One of the symptoms of CM1 is fainting. Which before being diagnosed was easy for me to do.

I also had a ton of pressure in my head and neck, by the end of the day as I tried to drive home from work I had the hardest time just turning my head to change lanes, it hurt my eyes and neck so badly.

Diagnosis

2007-03-27T17:51:00.000-04:00

I was diagnosed on March 22nd with Chiari Malformation Type 1 (CM1). I had been having headaches that were pretty intense since Logan was born but they have just continued to get worse and November I went to the ER because I was in so much pain.

They did a CT Scan at the time and told me it was a tension headache, gave me some hydrocodone and sent me home, they also said to see my PCP.

4 months later I finally saw my PCP, who after I told all my sypmtoms to, thought that I had some sympstoms of MS and had me get a MRI. He said he was being more proactive than anything, he didn't feel that I had MS but he wanted to be totally sure.

Well he was right, I didn't have MS but I do have something wrong. Scary as it may seem it is a huge relief to know that there really is something wrong with me and it isn't all in my head (metaphorically speaking).

Now I am just waiting for the neurosurgeons office to call to schedule an appointment to discuss further our plan of action.

New Blog

2007-03-27T17:37:00.000-04:00

I have decided to create a new blog that focuses strictly on my new diagnosis. I am going to use this to catalog symptoms and my everyday emotions of dealing with Chiari Type 1 Malformation.