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...
Hi everyone, I have a question for those who have a shunt or know someone with a shunt. I had so many LPs I cant recall the # of them of them anymore. I've been on Topamax and Diamox the highest doses and my VF test is still not good and I have swelling of the optic nerve. They told me it was time for a shunt.
Question is, I know my body goes through flares. so, is a shunt going to be permant? Are there people who had to a have a shunt that was on medicine but wasn't on the highest dose? Are there people that had to have a shunt that didn't have to go through so many LPs.
Question is, I know my body goes through flares. so, is a shunt going to be permant? Are there people who had to a have a shunt that was on medicine but wasn't on the highest dose? Are there people that had to have a shunt that didn't have to go through so many LPs.
have you treated your sleep apnea?
I take sleep meds too.
if you have to take sleeping pills for insomnia, that is both a sign of sleep apnea and something that will make your sleep apnea worse, most likely. if you have untreated sleep apnea (not really an "if" in my opinion) then this is making your PTC worse, and may be causing your papilledema. if they haven't ruled out sleep apnea then they are ignoring a secondary cause, which ought to be treated first before shunting you. my PTC went into remission with jaw surgery for my OSA. of course if your vision is imminently threatened, you will have to do something immediately.
I would get a second opinion and ask about optic nerve sheath fenestration from a nuero ophthalmologist before having brain surgery. That is just my opinion.
ONSF was not on the table for me because after each spinal tap my vision got better. Which meant (to my doctors) that a shunt would help me because it would lower my pressue for me. Usually they do not do ONSF unless your vision is in danger.
I have a love hate relationship with my Shunt. I've had two revisions and still have pain daily just not the level I was having. Now, I'm having other complications such as stabbing pains in my pelvis and stomach from the catheter. They tell you that the VP shunt is permanent but I know some people that have had them removed. There is a chance that your shunt can be infected and cause sepsis. There are alot of things that can happen w/your shunt.
Something you cold possibly inquire about is a Stent. Its transverse sinus stenting. They perform a MRV to see if you have narrowing or stenosis in the veins that drains blood from the brain. They have found that alot of pseudotumor patients have narrowing or stenosis in those veins. One of my veins was 100% closed and the other 65% closed. They placed the stent in the 65% closed vein and I did get some relief. My neuro had 20 patients and 19 of them were completely cured. I was the only one lol! I hope some of this is helpful