My Story

General
1

In December 2012, I noticed my first real issue with my memory. Didn't remember a conversation I had on my cell phone with my son about when we would have Christmas. But it was there, on my phone. Then there were the things at work. Lots of stress, everyone in my office was fired but me. Just thought it was that. I don't remember a day that my head and neck didn't hurt to some degree. Quit crocheting because I would see a "circle of fuzziess" after just few minutes. The ringing is getting worse in ears. The pain in my neck is the same, not any worse. My mother died in June 2012 of alzhemizers so that is my biggest fear.

So I finally went to my Dr. Jan. 2013. He suggested an MRI. I declined thinking it was just the stress from all the terminations in my office, overload of work, etc. A couple weeks later, I starting missing things at work. Not just small things but major things. I know the difference when you say, oh yeah I forgot to do that verse, having something that has your fingerprints all over it and you are seeing it for the first time. It made my heart drop to the floor. Went back to the Dr. had the MRI and MRA. Got the call that there were signs of a few mini strokes and something I had never heard of Chiari Malformation???? During the conversation I was asked if I where I wanted to go, Mayo or Barnes in St. Louis. When asked that question, I was still back on the mini stroke words!

Ends us I am going to a neurologist at the University of Iowa this coming Tues. So we shall see.

I have pain all the time, always have. I have what I call "zingers" in my head. I have I guess what they call migraines, starts out as a spot you can't see through then a ziz zaz flashingline that goes across from the right to left, then the pain. Headaches that are worse when I have to bend over. I have fainted at different times in my life. I don't pass out anymore, because when I start to feel that way I get to the floor. Yes even at work. The bathroom is really close, so I hide it.

Sleeping is absent for me. Has been for years, however that it getting alot worse. Most nights 2 to 3, some nights none.

I am sure that I haven't said anything that you all haven't heard. I just want to feel better. I think I have just adapted to symptoms and it is only now that they are getting worse that I find that these things are making life's daily activities hard to do.

What do you think?

I am thankful I found this link. I am looking forward to the comfort and reassurance I am sure to receive!

2

Hi..

Welcome! Thank you for sharing your story with us...

Let us know how you make out Tues....Just wanted to suggest a couple of things for you to ask the doc at the appt....CINE MRI...which is a flow study to see if your cerebral spinal fluid is flowing correctly...this is an important test...it is pronounced ..cinny....MRI..like MINNY...as in mouse!!

Also, have you had a full spine MRI to rule out a syrinx??? A syrinx is a fluid filled cyst that is on the spinal cord...people with Chiari can develop a syrinx.

I do have a side note for ya..I , too, suffered so much with severe insomnia ...after I had my decompression surgery ...that improved immensely. My visual issues have gotten a bit better...however, it remains an issue for me....however, I am grateful for any positive results.

3

Thank you everyone. I do not know why they sent me where they did. I will ask about the cinny test. I hope I can get help. Each day is slowly getting worse. Thank you for making me feel like I am not alone.

4

You are more than welcome! You are not alone ..I know that feeling when you feel that you are out of touch and feel as though no one 'get's it'...But..here....we all get it and we help one another through the tough days!

Let us know how you are, ok??

5

Will do. I fear that I will get told there is nothing wrong with me and that will be that. Honestly the very few times I have went to the Dr. over the last years I have mentioned some of the symptoms and they were always dismissed. I am hoping that with the results of the MRI that will be at least something. Anyone on here go to the University of Iowa for this condition?

Thanks,

Tina

6

So I had my appointment on Tuesday with the Neurologist at University of Iowa. When I finally got a chance to ask about Chiari, he said, "OH that, that is nothing" His diagnosis, sleep deprivation, anxiety and migraines. Wow! I could have saved my self a trip and diagnosed myself. No what do I do?