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...

761 Members

8,021 Posts

0 Online

nette90336 09/10/2015

I had a spinal tap when I was first diagnosed almost 2 years ago. How many have you guys had?

Lauren2 09/11/2015

I've had 3, all of them almost 2 1/2 years ago when I was first diagnosed. After my first spinal tap they diagnosed me and put me on diamox right away and did another one a few days later to see if my pressure had gone down at all. About a month later I was in the hospital again and they did one more to see where my pressure was at. Since I don't get any pain relief from the taps, they don't do them any more and it was just simply a diagnostic tool, but I know after reading a lot of posts some people have had 20-30 and so on spinal taps because they provide them relief.

ladyabug 09/13/2015

So far i have only had one spinal tab in May upon diagnosis. Neurologist is considering doing another one on September 23rd. Not a for sure thing yet. This would be like Lauren only diagnostic to see if diamox is working.

mellowamethyst 09/13/2015

I've only ever had one for diagnosis in November of 2013.

Taleema 09/15/2015

Just had my 3rd spinal tap middle of July... they were trying to re-assess my diagnosis; the opening pressure was confusingly normal despite having amazing results after having the LP (felt lots of relief for almost 1.5months), so I sure hope we repeat it.

RN4408 09/24/2015

Two total though one was 5 years ago and unrelated to IIH; the other for diagnosis. NO said I can have another if I want it but I haven't bothered.

pippiphurray 09/25/2015

I've only had one a week ago to get diagnosis and I'm so glad that it relieved my headache! Honestly I can see for those that it does give relief where they would get 20 or 30.

Notalone4 09/30/2015

Wow!!!!! I've had so many over 5 years that I've lost count

Cath278 10/11/2015

I've had about 10. All bar one to make sure I still had IIH! You bet I did. All mid 30s reading.
I normally would get between 8-12 hours relief, no more. But boy are those few hrs good!

I now feel very strongly against therapeutic LPs but do understand a patient wanting it.
They are so dangerous really. Now I say to my neuro when she suggests one, just ask me how high it is, I know.

Tharal 10/20/2015

diagnosed march 2015 I have had 3 and about to have my 4th. opening pressure on first one was a 54. mid thirties since. This next one may be higher as my optic nerve in my left eye is worse than its ever been.

nbolton423 10/21/2015

Diagnosed April 2014, had one a few days after diagnosis. Was put on 500 mg of Diamox and then 1000 mg. Stopped taking in in May 2015 and my symptoms still haven't returned. Hoping they're gone for good.

Join the Conversation