PTC and other Headache Information Page

Trach-ties

Pseudotumor cerebri....quite a mouthful isn't it? To find what it means it helps to break the word down. "Pseudo" meaning false...."tumor" is pretty self explanatory.....and "cerebri" meaning brain/head. It is a syndrome that is rare and not well understood. There are symptoms that point to a brain tumor, but no mass can be found on scans. People with pseudotumor cerebri have horrific headaches, vision disturbances/loss,papilledema (swelling of the optic nerve), vomiting, loss of balance, memory loss, tinnitus, and other symptoms that would make a physician suspect there is a brain tumor. On doing scans they find that there is no tumor, and many times find no abnormalities on brain scans. On doing a spinal tap they find that the spinal fluid pressure is elevated. Its this pressure elevation that causes these symptoms. The increase in pressure is from making too much spinal fluid, not absorbing it at a normal rate, or a combination of both. Some times these symptoms are minimized by physicians as well as others since this syndrome tends to happen more to women. Another of the "invisible disabilities" that the ones effected have to deal with, most times without understanding from the medical community as well as those around us.



The main means of treating pseudotumor is to relieve symptoms. Medications that decrease the production of spinal fluid or increase its absorption are used quite frequently. In doing this the headache and pressure on the optic nerve, which causes the vision loss, is relieved to some point. Spinal taps drain some of the fluid, but within a day that pressure starts to build again. Shunting is another means of relieving this pressure. A small-diameter tube is placed either in the head or spinal column, with a one way pressure sensitive valve in it,that drains the excess fluid to another place in the body to be absorbed. Another procedure that is done is primarily to relieve the vision problems associated with pseudotumor. It is called an Optic Nerve Sheath Fenestration, meaning they put slits into the sheath that covers the optic nerve to relieve the pressure.



There have been many theories about pseudotumor over the years. It was first believed to be only women. But there are males that have this diagnosis now to dispell that myth. It was also believed to only be in obese patients. There are now normal weight as well as underweight patients who have documented pseudotumor. Some have gone so far to attribute it to eating polar bear meat. There aren't too many that eat polar bear meat anymore so that has fallen by the way side as well. They are making correlations between the use of some medications and pseudotumor, but time will tell which of these is true medical finding or just coincidence. It was also believed that pseudotumor is "self-limiting" and would "only" last up to two years. Another myth. There are some that have had this syndrome for many years and continually have symptoms.



We do not know what the long term effects of pseudotumor are since it has been considered an "orphan" disease/syndrome meaning there isn't enough interest in the medical profession or society as a whole to think that it is worth putting the funds into to thoroughly investigate it. So until this happens we will continue to chase symptoms rather than find a cure or better treatment for pseudotumor.

FAQ about Pseudotumor Cerebri

Do you HAVE to have papilledema to have a diagnosis of PTC?

No. A low percentage of those with PTC have NO papilledema. They may have some sluggish venous pulsations in the optic disc. There may be pallor spots on the optic nerve.

Do you HAVE to have a headache to have a diagnosis of PTC?

No. Most people with PTC do present with headaches of varying degrees, but there are those who have no complaint of headache.

Is tingling in the hands and feet, and strange taste to carbonated beverages usual with Diamox use in PTC?

These are frequent complaints of those using Diamox in the treatment of PTC. These symptoms can be lessened with dosage changes or changing to sequels rather than tablets.

Will I have PTC the rest of my life?

Each case is different. As recently as ten years ago it was felt to be a self limiting disease, lasting up to approximately two years. Now cases have proven that it can last for years and can go into remission and have exacerbations.

Can I lead a normal life with PTC?

Yes a "normal" life is possible with treatment. Some can lead a normal life with medications, while others require more invasive intervention, including shunts or ONSF.

I was told that only overweight women get PTC. Is this true?

No. PTC was originally thought only to be in overweight women. Cases have now proven that it is also present in normal weight individuals as well as males.

To diagnose PTC do I have to have a spinal tap?

Yes that is the one definitive diagnostic tool in PTC. Since the nature of the beast is relatively normal scans, getting a direct pressure reading is the one definitive diagnostic tool.

How long will I have PTC?

That is an individual thing. Every case has different symptoms, intensity of symptoms, as well as duration of symptoms. The symptoms can go into remission for up to months or years and then reappear. It does not mean that will happen in all cases. Just that it is has happened in other cases.



You can find more about Pseudotumor Cerebri at the following links:

Migraine and other Headache Links

Disclaimer; In no way are these web pages or links intended to replace care by a qualified medical professional. They are here for information only. If you feel you fit any of the symptoms listed in any of these links you should seek care from a qualified medical professional.