Chiari Online Support Group

How important is it to get this testing done?


#1

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!!!


#2

Here is a previous discussion concerning headache pain while having BM’s and how you can help avoid it: http://www.chiarisupport.org/t/my-head-pain-has-taken-over-my-life/6538.

Trustworthy online information resources about Chiari (as opposed to alot of the “Dr Google” on the internet) are listed here: http://www.chiarisupport.org/t/chiari-info/8790.

Hope this is helpful.


#3

Hi Sabrinalynn, welcome to the support group! I’m so glad you found us. I had that same thing happen to me , the BM thing. I got scared to go to the bathroom, I thought it was going to kill me, but I never mentioned it to anyone. I thought they would think I was crazy. This started happening to me sometime around the end of 09 I think, anyways things got a lot worse, and like you I thought I was going to die. By the beginning of 2011 things got so bad I could no longer work. I went to my family doctor and he ran a bunch of tests and found nothing and had no idea what was wrong with me. He sent me to an ENT doctor, because my hearing was muffled , I had ringing in my ears and my balance was off. I also had the pressure behind my eyes. Anyways the ENT immediately thought it was a neurological problem and sent me for an mri. From there my mri reports were sent a neurologists. I thought I was going to finally get some answers, but that didn’t happen. He told me my mri was clear. He sent me to the hospital for a lumbar puncture to measure my spinal fluid pressure. I’m so glad he did even though the test was awful. The radiologist asked me what my symptoms were and told me that I probably had something called chiari and then he turned and walked out of the room before I could ask him anything about it. My mother in law was waiting in recovery for me , so when they wheeled me in there I asked her if she had ever heard of it. Luckily for me she had, she has a niece that has it. She immediately called her. Her niece told us to go get a copy of the Mri report and read it ourselves. So we went there as soon as we left the hospital. There it was right there in the report. I couldn’t wait to see that neurologists again, so I could ask him why he didn’t tell me about it. When I finally confronted him about it, he said he doesn’t tell anyone about it because it doesn’t mean anything. I said to him then why would the radiologist at the hospital be able to diagnose me just based on my symptoms? I have symptoms and they are getting worse. I also told this same neurologists about the BM thing, he had never heard of such a thing happening, go figure. He told me to go see a neurosurgeon. I did and finally had surgery in the summer of 2011 at the age of 38. My life did not go back to normal, but some things did improve and some things got worse. I have never been able to go back to work. My life is just very different, but I’m still here living it the best way I can. Everyone’s outcome is different though, some have surgery and it is a success for them. My advice to you is to have your husband and family learn as much about chiari as they can . You need a good support system around you.

Kelly :slight_smile:


#4

We don’t mind the long stories as long it helps you get it all out. Thus can be frustrating as heck, especially not knowing whether or not the pains will get stronger or not. But your in the right place for support and understanding because there are many of us in the same boat. But whatever you do make sure you do the research and come here for support because someone is always here to help and to listen.


#5

Its pretty darn important to get the testing done. Time is rarely of the essence (but it can be,) The thing to keep in mind is chiari is a lot more common than most think (likely the most common neurological condition in fact) Surgery is rarely the solution In fact 80% never have surgery and rarely is surgery the “final answer” for those who do. As mentioned in other posts there can be a multitude of other reasons for your symptoms. The fact that you have atypical Chiari symptoms is a flag. Chiari can be an easy out. Keep in mind the vast majority of “chiaris” are incidental findings. What you read on the internet is not what usually happens.

Your group is saying the right things regarding flow and other spinal conditions. Straining during a BM is usually a cerviacl issue. There are multiple treatments for that and it appears they want to explore that issue. The fact that their home page offers medical MJ is either concerning or comforting. They at least understand chronic pain needs treatment - not necessarily surgery. No you are NOT going to die although opening the bills for a major workup could cause a heart attack (that was joke)

Hang in there this is a great group and they Will be with you every step of the way.