indisputable symptom?

[2tired2b]

I have been reading the threads and finding out my problems mirror many here. I have a type 1 Chairi that I'm told isn't a problem. But like most of you I am still trying to find what IS the problem. I know it's different for everyone but with dizziness, headaches, "heavy head", tingling/crawling skin and one sided weakness being characteristic of several things is there ONE symptom that is most always associated with Chiari? I also have polycythemia and many of the symptoms are the same. I am managing that now but not feeling better.

[2tired2b]

Thank you for your replies. I have lived in one area so long and have been bugging the doctors here for so long I think I'll have to leave the area to be taken seriously LOL! Does anyone know of a NS doctor anywhere in Idaho? I see there is one on the doctor list in Portland and I may have to consider that.

[*Stormy*]

Well I was going to say that headaches at the back of the head are usually what most Drs will think is a hallmark sign but there are many problems with that. First of all, may of us didn't have the classic Chiari headache (myself included), and, from what I know about polycythemia, headaches and dizziness are common with that too. The problem is, that even without having another disease to contend with, Chiari symptoms are really widespread and a lot of them can be caused by a lot of different things. That is why this condition is so hard to diagnose. Luckily, you already know that you have the herniation so you can run with it. I would exhaust all your options, find a NS who knows his stuff, even if you have to go through a few to get there. Having this and trying to get the answers is a hard, long battle but you need to find the right Dr and then you should get answers to your questions.

Good luck!
Carolyn

[neava]

i agree with rob44 most doctors dont know even what it is, i went to hospital for an appoinment, and had to explain what it was, and how does it effect me.

i think we can all go wtih you on the not feeling good, you need to look at rest and not over doing your self, find your limits and dont push those

[rod44]

My NS told me that a headache when coughing that lingers is one sign of CM. People get HA from coughing but they go after a few seconds.
Finding a NS or NL who deals with CM is important as most Doctors dont understand CM.