Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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Notalone4 04/02/2011

Hi everyone, hope ur all having a wonderful day. After doing more research on chiari 1, I remember my neurologist explaining this condition to me but it never went any further. So now I'm wondering how others have been treated for the 2? Most of my headaches come from that region, so now I'm wondering why my neuro has ignored these symptoms. After visiting this website I learned my symptoms are shared by many others, while my current neuro makes me feel as though I'm over exaggerating. Thanks to everyone helping to get the word out about ptc. If it weren't for yall I'd still lost. And Thanks to the help of another supporter (sorry I haven't gotten names yet know) :( I contacted my eye dr. about getting a referral to Wash U (> 3 hrs away), and after she realized how far away it was she decided to do a little research of her own and found a spec. 2 hours closer(thank God). Now I'm wondering what other dr.'s have done to others experiencing the same symptoms? I'm also curious about the stunt procedure, has anyone had any luck with it and does it help with the daily headaches?

deleted_user 04/04/2011

HI and welcome....I am in the same boat as you. i have Chiari and PTC. I was decompressed in 2007 and then a year later had the shunt put in.

I was doing great up until recently. I seem to have hit a slump again. Pressure is back and the daily headaches are unbearable. I have a pain mgmt doc now and Im working with him to see what works.

So far nothing does.....Good Luck to you!
Were you decompressed?
I take it you dont have a shunt.
Are you on Diamox?

Notalone4 04/04/2011

Hi and thanks... My neuro hasn't done or said much of anything about it besides the fact that she's seen worse. I am on 1000mg of diamox and have had 3 lp's. My headaches seem to occur in that area and my neuro doesn't seem to concerned about it, but after seeing earlier post of others I'm starting to. What is decompression?

deleted_user 04/04/2011

Decompression is when the NS cuts into the back of your neck and then opens up the space that the hind brain is usaully hanging down into. It is Chairi surgery (basically). Look into the surgery on the net and you will find info about it.

mary1973 04/07/2011

Hey toya, were really close im in STL, what is your herniation measurement?
Hit me back and we can talk, maybe call you if you like.

Mary

Notalone4 04/07/2011

That would be great. If u don't mind, send ur # to my email latoyast78@yahoo.com
My measurement was about a year ago and it was 3/4 of an inch

mary1973 04/07/2011

Toya, wow your chiari herniation is significant...............did your doctor send you to a NS for surgery consult? Give me details please, just wondering why ur still walking around like this.

Mary

Notalone4 04/07/2011

They haven't mentioned anything else about it. They have stayed focused on the ptc.

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