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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Does this sound like PTC to you?

jessicarutherford
jessicarutherford
Hello All,
My name is Jessica and I'm a 28 year old with one 9-month old baby girl. My Neuro-Opthamoligist suspects I have increased pressure bc my optic nerves are swollen. I recently had an MRI and it was completely clean. I go for a LP early next week to check opening pressure and the spinal fluid for anything that could cause inflammation (any idea what he's talking about?) I have a daily dull headache with some days worse than others, flashes, sparkles and occasional dimming/blurring of my vision, enlarged blind spot, and pain behind my eyes/in neck/upper back. I am also about 60-70 lbs overweight. Does this sound like PTC or anything else to you guys? I'm so worried right now.
Thank you in advance.
Sophiasmom06
Sophiasmom06
yes it does sound like PTC. I think there are markers in the CSF that they look for in terms of MS which can cause optic neuritis, but MS would have been seen on your MRI. if the opening pressure on the spinal tap is not what they think is elevated, come back here and tell us anyway. there are others here who have had papilledema at "normal" pressures. this has been shown to happen if the pressure is spiking during sleep due to apneas. obstructive sleep apnea can increase intracranial pressure (ICP) and can be a cause of PTC. if you are overweight you certainly have OSA. I would urge you to get this evaluated too.
jessicarutherford
jessicarutherford
Thank you so much for your quick response! I don't know anything about OSA and my doctor didn't mention it. Who would I see to evaluate that?
I'm so scared I'm going to go blind. Does that happen often? Or suddenly without warning?
Sophiasmom06
Sophiasmom06
I'm not sure what to say about frequency of vision loss. most of the time if they get the pressure down the vision comes back, that's just anecdotally what I've heard. it can come on suddenly though, so it's nothing for them to drag their feet on. so glad you are having the tap in a few days. make sure they draw off enough pressure/fluid to get you down to below 15 cm water. make sure if they do it while you are on your stomach that they add the length of the needle to their measurement. I hope it will be under fluoroscopy as that is best.

hopefully your vision will improve quickly after the tap and they will put you on Diamox and that will maintain it. if not you should make sure to see a neuro-ophthalmologist quickly and ask about ONSF; this can rapidly take the pressure off the optic nerves.

go to doctorstevenpark.com and read about OSA and UARS. most docs don't know anything about UARS. it's like mild OSA and it has a different symptom profile that you may recognize. there are simple things you can do like using Afrin at bedtime and making sure not to sleep on your back, but right now I would probably not change anything and just get the tap first. there are so many who have been told their pressures are borderline and it's not really PTC when it actually is and then they are in a no man's land and can't get proper treatment. don't do anything to lower your pressure right now, you want to get an unequivocal diagnosis.
jessicarutherford
jessicarutherford
Thank you so much for your advice/words of wisdom. I saw my Neuro ophthalmologist on Friday, and I'll see him Tuesday after the tap. Hopefully he'll have a plan!