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...
Hello all - hope everyone is well.
Last week, I saw my regular Dr for an 8-ish week check-up to see if the acetazolamide + weightloss is having an effect on my papilledema. The papilledema is still present, however, my vision has definitley improved as my left eye is no longer 'fuzzy' and on the eye chart my vision is back to better than 20/20, for which I am so thankful! My papilledma has been "still there but slowly improving" on every check up I've had thus far.
Before this, I had a thorough eye examination two weeks ago as I am experiencing some new disturbances (still predominantly in left eye). More stars in vision, straight lines appear 'wavy' or have a kink in them, and I get 'ghost vision' when I am tired. But the doctor I saw said my eyes looked healthy, the optic nerve swelling was slowly reducing, and described these disturbances as 'pins and needles' as the pressure reduces on my optic nerves (the example he gave was leaning on your arm = dead arm, then relieving the pressure = pins and needles).
However, despite the visual improvement I notice, my Dr recommended Optic Nerve Sheath Fenestration in 3 weeks' time if there's no significant reduction in papilledema then. This has got me quite scared and I wanted to find out if any one here has had it done or has an opinion? I was under the impression that this surgery was carried out when vision was WORSENING, not improving (albeit slowly). Any advice would be greatly appreciated, potential surgery has got me freaked out.
Thank you x
ONSF is usually a last resort if the Diamox and weight reduction isn’t working. Once they cut into the sheath it’s done, so if you are not comfortable I would get a second opinion. It sounds to me that the Diamox and weight loss is working. I was seen every 2-4 months in the beginning and as long as there were improvements the NeuroOphthalmologist was happy. It took a good 4 years for them to finally let me stop the medication. It was a very slow process to get the papilledema to resolve. Depending on your doctor some may have never treated this before and some may have had lots of patients with this, so I would make sure this doctor is sure of what he is recommending and understands how long this process takes. I was on 2000 mg a day which is pretty aggressive. If they don’t feel your swelling is going down fast enough maybe they need t increase the dose. I would research as much as you can because this condition has so little research done on it that I really don’t think the doctors even understand it that well. My NeuroOphthalmologist was also a researcher professor at the teaching hospital I got diagnosed at and he was doing studies on it so I really trusted him. He’s since retired. Good luck with everything!
To say little research is done on this condition, my doctor is flippant with me and I get the impression she's set in her ways. She probably doesn't like me because I do research and try to do what I can!
So all in all I definitely will keep researching, and at my next appointment I'll be asking for a thorough comparison of the photos and field tests of my eyes etc. because I'm not having surgery without understanding why! It seems like it might be difficult to get a second opinion here on the NHS in England, as patients don't have a right to one, but I will be asking for one. If not possible, I'll think about having a private consultation.
Also thank you for the info and papers you post Sophiasmom06, they're interesting reading.
Thanks again and hope you're both well.
the interesting thing about the veno glymphatic paper is the amount of time they spent describing the lymphatic drainage pathway for CSF. the reason that you have papilledema is because your CSF is draining out of your skull along the optic nerve. if you had a better venous drainage pathway, maybe it wouldn't go into your nerve like that. I had jaw surgery where they moved my mandible forward by 1 cm, and this put me into remission. my ICP dropped from 23 to 14. I think it took the pressure off my jugular veins so that CSF could drain through the venous system. I never had pap but my ICP was 23, not as high as most people. still it was miserable and I feel bad for all the people with lower pressures who get blown off because they are not over 25. these cut offs are arbitrary and do not serve patients.