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[Lizinator33]

I was diagnosed in August 2015 with CM 1. My main complaint is intense migraines that can last for days. Over the past couple of months new symptoms have started coming on. Bad neck/ shoulder pain, stuttering, choking on food... Anyways my NL tells me that my migraines aren't consistent with Chiari because Chiari headaches come in the back of the head only and mine are only on right temporal lobe. They tell me that I was born with this.. Well how do they know??? I'm 33, and just having bad symptoms... They don't seem to want to listen to me at all... I have a major question. When I had my first son in 2000, I had to have a blood patch done because the epidural went too far into my dural space. Is it possible that I have had a csf leak all this time?? I now have a softball size spot in my lumbosacral region that I'm wondering is fluid?? Any thoughts would be greatly appreciated! Elizabeth

[Emme80]

A good Dr. will hear you, so keep talking. ;),

[Emme80]

I had a few headaches-some that I knew were tension at times, and some that were clearly migraine (a sumatriptan nasal spray was my gold. Within 20min., that migraine would be clearing up!!! And I still get migraines-but WAY far fewer! Drastically decreased!) i was dx'd back in 2005, but with nothing that was..unmanageable  or...it didn't interrupt my life in any way. However, in early 2015, many symptoms came crashing down upon me. Including the headache that would strike me from the back of the head/ it'd shot from base of skull-felt like from spine to base of skull & radiated like electric shocks towards&grounding the top of my head. That's when I started asking Neurologist questions again & ... Chiari came up again. While going through a whole array of tests, more symptoms hit me quickly. Numbness, tinnitus, vertigo, vision problems..etc.
But, yes, I still have what I've been told are true migraines, but there are many headaches that can be caused by Chiari & as Selma said, nerves being compressed  can create wild thing & how it effects our bodies varies.
I can say that I've had drastically fewer migraine (that they said weeny related to the Chiari ) since the surgery. But no more lightening bolt headaches....well, a handful perhaps, but so short lived, where as before surgery, the'd kept hitting me, leaving me frozen/stuck for a majority of the day. But those as well, DRASTICALLY reduced..
That's just my experience. Keep talking until someone will & WANTS to listen to you!!

[selmaS]

  Hi and welcome to the Chiari forum.

I would think and hope that the CSF would have be reabsorbed by now that is a long time....but who knows for sure....

There are many Drs out there that do not realize that Chiari can and does affect us....so research Drs and find a true Chiari specialist.

I had surgery in May of '09 and I had head aches that were all over most were in the back but I had them in the front as well...along my temples...I really feel Chiari can affect us in different areas depending on which nerves may be compressed due to Chiari....find a Dr that specializes in Chiari and ALL related conditions.