Woke up this morning to yet another day of finding that chiari is something that reminds you daily that it is there.  My head felt like someone was hitting me in the back of my skull with a hammer.. thump, thump, thump... actually more like POUND, POUND, POUND.!!!!

I got up out of bed to find that I had one dose left of ibuprofen... ugh.. Not a good thing so today I have to remember to get more.. I don't want to have to get caught without relief..

I refuse to live on prescription pain killers..

I was told that chiarians best friend is a cup of coffee.. I believe it now..  it quickly helped the worst part of my headache.. now its just a dull ache as it usually is once again..  I hope that this kind of headache is not going to be a daily thing.. way too much pain to put up with on a daily basis already..

Facing surgery is a scary thing, but living life without possibility relief from this pain is worse..  There are many chiari sufferers that choose to not have the surgery.. I cannot be one of them.. these symptoms are coming on strong and fast.. getting worse day by day.. If I don't have the surgery, I fear it will be my demise...

In the midst of explaining to my husband how bad the headache was and how to would be easier for him to understand what is going on with my health if he would learn more about chiari and what other couples are going through with this condition. He rolled over and responded coldly

 "You are going to have to start thinking about something other than your chiari!"

 Like I should just brush my pain off like it is dirt on the bottom of my shoe. He acts like I have an option in not thinking about something that constantly causes me pain.

I work 40+ hours a week, and I have been having these symptoms for several years now, it is not until recently that they have increased to the point of being unbearable. have a very high pain threshold, and I suffer through my pain regardless of what I am doing.. Every time I move... every time I speak, every time I turn my head, every time I reach for something, every time I sit, every time I stand..  How can I not "think" about something that is in my head regardless of what I do??
My husband cam back from a weeks vacation in Florida, spent a lot of time with his old school buddies.. now he wants to move there... so he can enjoy life... with no worries...
Sounds great, except with this surgery I am facing, I think it is unrealistic to even think about doing that until after the surgery is over and I know what my limitations are, and that is if I survive it...  Yes the surgery is risky.. it is the brain they are messing with.  Complications can happen, and because they can happen.. patients are told to prepare for the worse case scenario..

So I will create somewhat of a bucket list...  a short one, as I really don't have a lot of time and energy to go traveling and such.

Chiari is such a painful thing to have to deal with.  I have not yet been decompressed, and the pain is non stop.  It has gotten to thew point where I have to take a pain pill in order to go to sleep and even then I have so much pain in my neck that I have to lay a certain way or I cannot sleep. Well during the night last night I had somehow rolled over onto my back and my head must have slipped off my pillow.. it was about 3 am that I woke up in excruciating pain, my neck was bent way to the left and the pain was so intense I couldn't move.. It brought tears to my eyes but after about 45 minutes of slowly working myself to the edge of the bed I was able to stand while holding my head tightly in a normal position. 2 ice packs later I was able to lay back down and get back to sleep. Not a good night... I hope the doctor will be able to do my surgery soon and I can get some relief from all this pain..
Chiari malformation is such a horrible thing to have to deal with for anyone, the symptoms  can be ongoing, or come and go according to the pressure position and which nerves are affected. Symptoms can lessen and it is possible to reverse some of them with decompression surgery if it is caught before permanent damage occurs. The problem though is that so many find out too late about this condition and nerve damage has already progressed too far to reverse.

 That is why it needs to be caught early on in life.  If doctors actually saw chiari for what it actually is instead of as "just a little thing" then more people would get treatment sooner and not have to go through this pain all the time , they live their lives not knowing why they are hurting.

I include myself in that because I am 53 years old and have just found out for the first time that I have chiari malformation.  I have had countless MRI's to figure out why I have all these symptoms that I have, no doctor ever told me until now.

 WHY DID IT TAKE SO LONG TO FIND OUT????

Because these doctors have been taught to ignore chiari unless it becomes symptomatic.  The problem is that they are so used to "ignoring" this condition, that when it is a threat to human life they never think of chiari as the cause.

This needs to stop, people are suffering, people are dying, all because the doctors don't know any better??

Educate yourself, educate your doctor, don't expect him to look out for your best interests, you have to look out for your own..  Your doctor is running almost 24/7 on a schedule that involves seeing thousands of people, most of the time he has no spare time to do research for you personally, you have to do it yourself and for your loved ones..

Be in the know!!!  Do your research!!  Look at your MRI's yourself.. you can pick up a copy at the same place where you got your MRI's done, give them a call... look for yourself.. see if you have a chiari malformation in your head...