Hi everyone! I’m new to this forum and have read many of your stories! It’s awesome to see a community of people there for each other like this one! I"ll try to keep this short. (scrolling back up I realize this is NOT short at all… sorry)
About 7 months ago I was having a BM and got a SEVERE,sudden, pounding, headache to the back of my head. I almost passed out and thought I was dying. It only lasted for a couple of minutes. Because it was so bad, I decided to call my dr and see if it was something they thought was serious and I was told because it had only lasted a few minutes, it probably wasn’t serious. If it returns, I was told to go to ER. It didn’t.
A few months passed, and I always had this faint headache, or pressure. I am one who doesn’t get headaches so although it wasn’t that bad, it was bothersome. I called the dr again who then scheduled me for a Brain MRI. I received my MRI results over the phone and was told I had this “chiari” and that they wanted me to see a specialist at the "DENT’ Neurology Center here in NY. I had no idea what this was and so quickly googled it, and I must say… as a mother of two kids that depend on me… i was scared. I saw how it doesn’t have a cure and the only thing that really helps is brain surgery. What???
As scary as this was, the more I read, the more it explained so much. I’ve had symptoms of many things that could never be explained! All the symptoms that are commonly found with this condition. I have other symptoms that I don’t see linked with it (I’ll post that in another topic) I’m 38 years old and have dealt with some symptoms for many years Many are newer symptoms -developing in the last few years.
I went to my consultation with the specialist at DENT. It was $200 out of pocket as I have a $4500 deductible before my insurance kicks in. The Dr told me they wanted to do an MRI of spine and a few other tests to check fluid flow and such. That was a lot of money to me to not really be told anything other than you need more tests. I scheduled them, but a day later was called and told that again because of the high deductible on my insurance, I’d have to pay $1200 of it up front. I told them to cancel my appointments because I can’t afford that. I figured, there’s no treatment for it anyway and my symptoms I’ve dealt with for a long time (other than this faint headache). It’s a lot of money to come up with to be told I need more tests, or to confirm that yeah… you have this or that but we can’t do anything for you. So, I decided to wait until after January when I can get off the high deductible insurance and switched over to paying more than I can afford weekly (ugh @ insurance costs)
It was as if someone has another plan for me because my symptoms have gotten much worse now. I get a throbbing headache when I bend over too long (painting trim, or doing laundry). My eyes feel like their going to pop out of socket from the pressure as I’m trying to sleep. My balance is getting worse. My blurred vision has gotten worse. Then today it hits again! That one severe headache I had 7 months ago came back to remind me this “thing” is still here. Again, while having a BM I had a SEVERE throbbing headache and I thought I was going to die. I had almost forgotten how severe that pain was!
Now, I’ve looked and looked online to find even more information than last time. Specifically what kind of progression this condition has. Like am I making things worse by waiting to act? Is it something I could die from if I DO wait? From most of what I read, people finally get the surgery because they can’t tolerate the symptoms any longer. I’m not there yet. I just don’t want to die from it while on the toilet (or anywhere for that matter).
I’m sorry this was so long. Any insight people may have would be awesome!!!