New here, lots of questions!

First off, I am NOT diagnosed with Chiari, but I do have a cervical stenosis diagnosis. I have life-limiting symptoms and I have read about Chiari for years and just keep coming back to it for some reason.

Let me give my history. 15 years ago my left ear began ringing, and none of the tests really showed anything. No tumor. Then 10 years ago I gave up driving because my eyes would not stay focused on the road. It's like they kept wanting to "move". Plus, driving at 55 MPH was way too much stimuli coming at me too fast to pay attention to driving. Also during that time, I noticed that while driving, if I had to glance at my kids in the back seat, then when I looked back forward, I would see stars. I didn't feel dizzy or anything, so I just kind of ignored it and learned not to turn my neck very much.

Around 6-7 years ago, I went through a time where rolling over in bed my neck would give a loud "pop" noise, which I had never had before. I didn't notice any direct effects from it, just thought I was getting old(at 45) and the old bones were wearing out.

Then, 6 years ago I began getting lightheaded with standing. I had a time-limit of about 10 minutes, and then the heart racing would be too much so I would sit. I went to doctors who diagnosed it basically as orthostatic intolerance(later as POTS). As the years have gone by, I mostly now stay at home, as I can't drive and can't stand long enough to shop. Over the last few years I have become extremely heat intolerant, sensitive to noise, sensitive to light, and sensitive to touch(a "pat" on my back actually hurts me).

Now, when I do try and walk, what my eyes see is kind of like trying to walk and look through a camera at the same time. My whole visual field "jumps" with my steps. I find that I just end up looking at the ground when I walk.

Another problem, for example, is when I shower. I cannot tilt my head up to rinse my hair or face, as that just brings on the lightheadedness and unsteadiness(same with closing eyes to rinse face).

The thing that makes me wonder about Chiari is, I have to sit kind of slumpy. I absolutely cannot sit up in a straightback chair, as it makes my heart race and all the same symptoms I get from standing. I wonder if, as I sit all slumpy, that that angle is better for my neck and skull. Does that make any sense? It is like having my neck straight or extended is not good for me.

I don't have any headaches, but constantly changing head pressure from the whole beginning. It's odd, I had to do a test a few weeks ago where I had to blow really hard for 15 seconds, and do it 3 times. Of course, I felt awful afterwards, all lightheaded, eyes pounding, etc. and when I was done and went to leave, I kept tripping over my feet. The nurse asked if I was okay, and I was like yea, I don't know why I am doing that. After reading about Chiari, I see where any forceful pressure can aggravate bodily things.

Can anyone relate? I am so tired of not having anyone know why I am like this.

I have an awful memory, so I am always having to edit or add to my posts!

I forgot to mention that when I do sit straight up, I get a burning across my shoulders and in the upper middle of my back,along with a ton of stinging sensations.

Also, my shoulders have literally been tense for the last 5 years. It is now their natural state. I have to think about untensing, and they do, but then go right back to tensing up.

KSue12,

I am so sorry you are living with such serious symptoms. Everything you have listed I have also lived through. It does sound like Chiari symptoms. Do you have a Neurologist or NeuroSurgeon? I would highly recommend you make an appoiment with one

and get them to schedule a MRI. That is the only way to diagnose a Chiari Malformations. Please know that everyone on this discussion group is amazing and will be here for you whenever you have questions. I pray you get some relief & see a dr. that will help you.

God Bless,

Tracy Z.

Hi Welcome....

I am so sorry you are suffering so. I think Katie and Tracy gave you the best advice. You need an MRI of the head as well as a full spinal MRI to make sure you do not have a syrinx..which is a fluid filled cyst that is on the spinal cord.

Your symptoms are all to familar to me....you worded everything great....Totally get where you are coming from.

Let us know how you make out getting these MRI's done.

Peace,

Lori

Thanks everyone! I had one MRI when I was diagnosed with the cervical stenosis, but no one said anything about Chiari(obviously). I looked at my own MRI and didn't see anything jump out at me. I'm just wondering, a few years ago I had read somewhere that an upright MRI gives the best image. Is that needed or is a lying down MRI all that's needed?

I just keep thinking of how I need to sit in a "C" position(kind of lounging) to feel my best.

Lastly, I don't get headaches, but does the fact that my eyes/vision "beat" to my heart beat mean that there might be too much pressure?