Thursday, February 21, 2008

Have you seen my brain lately?

You might not have, but I did for the first time today! I want to begin by apologizing to you all for the informality of posting health information online. The seriousness of it isn't great, but the quantity of information is so much that hopefully this blog will answer all preliminary questions and convey information to you all. I promised I would keep you all in the loop about life in Colorado, so here goes...
Many of you who have known me for a while, know that I've always had headaches. I've thought they could be sinus related, then there was the possibility they could be migraines. From about age 12, I've stayed well medicated to say the least! I've had a CT scan, seen chiropractors, downed oceans of water, sought massage therapists, and prayed, but have never kicked the headaches. They are more severe in times of stress or seasonal changes (which gives good reason to blame it on a number ailments!) They progressively got worse when I moved out to Colorado. I thought, it might be the job, or the altitude, or the arid climate. The difference was that the headaches occurred more frequently and in different places (basically all over my head!) The month of November brought roughly 30 days of headache...some days dull pain; some days sharp stabbing pain. So I once again sought a doctor's advice. Luckily, this doctor ordered an MRI.
On MLK day, I had my first MRI, thinking nothing would be found. Three days later, I found out I have Type I Chiari (Kee-ar-ee) Malformation. He gave me the name of a neurological surgeon and said I should set up a visit. Today, Tim and I met Dr. Sean Markey (voted in Top Doctors in Denver 2007.) He delivered good news, so for those of you who stopped breathing a while ago, you can start again.
Basically, Chiari is a condition where a part of the brain (that we don't use for anything) is pushing down through this little hole we all have at the base of our skulls that allows the brain stem to pass into the spinal cord. I'm about 10mm below where I should be. Chiari is much more common in females and often goes undiagnosed because it disguises itself so well. The best way to detect it is to have an MRI (yay for Dr. Boyle!) Surgery is the best way to fix it, but in my case, not necessary (yet.) Dr. Markey has advised that I first speak with a neurological headache specialist (Potters reading this...the NEUROlogical specialist's name is McNutt...yes, McNutt...he first wanted to be a psychiatrist!) He believes McNutt will be able to help me "manage" my headaches. He doesn't feel I will need surgery for a couple of reasons. 1-I've learned to live with pain a lot of people aren't used to. (Tim just has to learn to live with the complaining!) 2-The surgery is invasive, painful, and about a 6-week recovery--not something he recommends I do unless I get worse (more than 10mm of brain leakage.) He does want me to come back in 6 months for a check to make sure it hasn't gotten worse. So that's what we need to focus on...that it doesn't get worse (and there is a very good chance it won't.) The only other thing he advised was to discontinue going to the chiropractor...NO MORE NECK CRACKING!
All in all, I've got more brains than I've got head (not a bad problem to have.) I'm including a link from the National Institute of Neurological Disorders and Stroke (http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm#102923087) that gives you all the medical mumbo jumbo and probably a better explanation to specific questions you might have. After all the specialist have seen my brain, I'll try to upload one of my films so that you too, can say you've seen my brain!

8 comments:

Anonymous said...

Wow, I didn't realize you had headaches like that. Interesting enough a good friend of mine just found out her sister has the same thing. She isn't going to have surgery yet either. Good luck on everything, I hope you can get it under control without surgery!
Tracy

lace1070 said...

Hi from a Chiarian in NY ~ I found your blog through google alerts. I am happy for u that you have an awesome surgeon who is treating you and keeping a close eye on yur brain tail. My blog is all about my chiari journey ~ http://www.msnbc.msn.com/id/23294163/
I have done a lot of research and have posted links if you are interested in knowing more ~ Hopefully u will find inspiration from my journey ~ all of us have a different story to tell. Hugs to you ~ Lacie

Sharon (aka Sitting Porcupine) said...

Hello from a Chiarian in Denver. Like Lace, I have tracked my journey though this difficult condition on a personally blog @ http://headsaga.blogspot.com/

There is a huge community out her to offer you and your family support. All you have to do is ask.

Anonymous said...

Hillary,
One of my best friends found out that she has Chiari after years of suffering too. She has not had the surgery as of yet and hopes to avoid it. Your positive attitude will certainly be helpful as we all know that just regular headaches are so inconvenient and just plain hurt! I am thinking of you and praying about this as well.Love, Cheri

The Rogers' Family said...

Hi,
Even as a very young child my mother said I would hold my head and cry "boo-boo hurts." After 9 MRI's at age 12 I was diagnosed with a Chiari malformation when I was 13 and had to have the decompression surgery to correct it. That was 16 years ago! I remember the amount of pain the headaches cause. Pain where you just sit and cry, but it hurts to cry and you want to lay down, but it hurts to put your head on a pillow. Since the surgery I have not had a headache like that. I pray that you will not need the surgery, and also that if you do for the Lord to guide the doctor's hands.
Kim

Anonymous said...

Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!

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