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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notsurewhat2puthere 08/30/2011

ok went to the eye dr today and they told me that all my tests of my spinal fluid came back normal. She said that my pressure was high. She then told me that they wanted me to go get the mri with contrast because they couldnt get the contrast in me last time because the eye dr nurses stuck me 5 times to get 1 vile of blood and there was no where else to put the contrast. So they want to test to make sure I dont have thrombosis whatever and gave me diamox sequels 250mg twice daily. Well I went to sleep after the appt and the dr called and said not to take the medication and to call her back. Problem is that you cant get ahold of them and there closed now. Why would they not want me to take the medication? my optic nerve isnt as swollen as it was last time but its still swollen

deleted_user 08/30/2011

Maybe they want to see if the MRI shows PTC and they want to get a real indication, so they need you to not take Diamox?

I don't know, that's all I've got.

-A

notsurewhat2puthere 08/30/2011

I am so frustrated because I missed the phone call because I was asleep. I am really overwhelmed right now I feel like I am completly out of control of my healthcare. Can MRI show ptc? they have a mri done about a month ago and it was clean just didnt do it with contrast

deleted_user 08/30/2011

My second MRI, which I had last September, showed fluid in the ocular area (I forget how it was worded) consistent with PTC. At that time, I was on less medication and I knew my pressure was up. And my eye was hurting. My first MRI did not show PTC at all.

I was put on more Diamox at the time and the pain went away (not the headaches), but yes, an MRI and CT can show PTC, but the real diagnosis is the LP.

deleted_user 08/30/2011

In the discussion topic marked "Headache upon laying down" there is a post about an MRI showing PTC.

Be sure to call your doctor tomorrow to get an answer to your question.

Good luck! Keep us posted!

notsurewhat2puthere 08/30/2011

would a mri without contrast show ptc? I had a lumbar puncture on the 19th and my op was 30

deleted_user 08/30/2011

My MRI did not have contrast, but sometimes it does not show up at all, which I think is a good thing,...

I think with contrast they are also looking at flow,...am I wrong?

notsurewhat2puthere 08/30/2011

she mentioned venous sinus thrombosis

ladyhorn1 08/30/2011

Hi Not sure
My guess is they want you to wait to take the diamox until after the MRI w/contrast is done. So you know you just have to sit tonite and wonder so just hang tight and relax. The only other thing I'm thinkin is that maybe they decided they could see enough without the contrast and that it would be enough to aid with the diagnosis. Either way, you'll have to wait til the morning to get your answer. This is something you have no control over so try to rest tonite, K? Nancy

notsurewhat2puthere 08/30/2011

thanks nancy...I am just annoyed with the whole situation its just taken so long to even get into see doctors and appointments and you cant call these people no one answers the phone or if your lucky and they answer, its not someone who can do anything for you. I just dont want damage in my eyes I will know in the next 2-3 weeks if I have the low income health care through the state and if I get that I will have way more control of my healthcare and can actually go to a nuerologist

ladyhorn1 08/30/2011

Venous sinus thrombosis would mean you had a clot blocking off blood flow in the vein that drains the head. Maybe they wanted to add a MRV to your tests to confirm or r/o that??? My doc told me there were certain signs that were indicative of PTC: empty sella, flattened optic discs and slit or smaller ventricles.
Remember PTC is a diagnosis of exclusion which means if you have this but dont have that, etc is the way they diagnose it. And personally, I feel many docs do not know this dandy criteria....So we educate, and we take control.....

deleted_user 08/31/2011

He doesnt have an answering service? -- hmmm. Thrombosis could be a lot of things? I reallly can't even begin to guess.

I would say that skipping a dose for a day or so, isn't going to effect your vision. Just try and relax and know that for whatever reason it's for the best. Maybe it's to try and get the best result on the MRI/MRV?

notsurewhat2puthere 08/31/2011

I haven't even started medicine and no no answering service

notsurewhat2puthere 08/31/2011

I just want to cry there now saying My opening pressure was normal at 30 that the reading is different than they usually get. They are going to send me in for the mrv and a eye ultrasound next month they are now saying its crystals behind my eyes

deleted_user 08/31/2011

30 is NOT normal. No matter what your height, weight. whaterver.
I'd get a new neuro-opthomologist.. and send the reading over to them.
This is bs. Still go for the MRV. Those are really essential/helpful anyway.. but find out who the expert is.

A GOOD neuro-opthomolist has a 24 hr answering service.

Please seek a 2nd / 3rd opinion.

notsurewhat2puthere 08/31/2011

I really dont have an option right now to go anywhere else. They said that the 30 is in a different unit than they normally do it in. the neuro and the eye dr both told me 30 was normal im not sure what units its in

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