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...
I have a question. I was diagnosed a year ago and I rencently went to see a nuerosurgeon to discuss having a shunt placed. Anyway, he seemed surprised that I had only had one LP in a year. Mine was extremely painful-it took them 45 min to find the right spot! So, I never really asked for another one. Anyway, it seems like some of you guys have them regularly? Am i understanding that right? Because my nuero said your pressure will go back up in just a couple days so he said that the use of "theraputic LP" is not beneficial. But is that true?
I'm switching to a new regular nuero tomorrow just because I'm not getting the guidence I need from the regular nuero I've been seeing for the last 12 months. I've been telling him the meds we should try! The nuerosurgeon was awesome and he said I could have a shunt anytime I wanted one but advised me that in people of normal weight and no other circumstances PTC self resolves in 90% of the patients he sees within 3 years. Take that for what it's worth but I doubt my insurance would even cover it at this point because to them, I'm "well controlled" on the handfulls of pills I take a day. Anyway, since I am 1 year down my husband thinks I only have 24 months left--he's such a numbers person! Wish I could get that in writing......
Basically, if getting LPs will help, I'd like to know what you guys have heard on this. I know they use them to test the pressue but for relief purposes.
I'm switching to a new regular nuero tomorrow just because I'm not getting the guidence I need from the regular nuero I've been seeing for the last 12 months. I've been telling him the meds we should try! The nuerosurgeon was awesome and he said I could have a shunt anytime I wanted one but advised me that in people of normal weight and no other circumstances PTC self resolves in 90% of the patients he sees within 3 years. Take that for what it's worth but I doubt my insurance would even cover it at this point because to them, I'm "well controlled" on the handfulls of pills I take a day. Anyway, since I am 1 year down my husband thinks I only have 24 months left--he's such a numbers person! Wish I could get that in writing......
Basically, if getting LPs will help, I'd like to know what you guys have heard on this. I know they use them to test the pressue but for relief purposes.
Surgery should be a last resort.
I just found this amazing resource:
http://www.trunity.net/NOVEL/articles/view/137051/?topic=18618
You should print this out and bring it with you.
Good luck!
I am still surprised that some drs. are still using them as a therapeutic aid.
Besides being almost pointless, in most cases, it is also very dangerous.
You risk, infection, the trauma of the lp, low pressure hds from a scf leak, as well as the possibility of developing Chiari Malformation as a result of too many lps.
My neuro believes, that after the initial one , for diagnostic purposes, you are only counting numbers.
As many of us will tell you, just ask us if our pressure is high?We know when it is better than any test can do.
There are some group of people who do get long term relief from lps, but you would know if that was you after your first one, as your symptoms would not have returned for a few weeks, even months.
I would love to know what basis your neuro is stating that, in normal weight, and no secondary IIH, that they will get better in 3 years? News to me and several more here! I was a normal weight, etc and I am now going on 3 years with no relief of symptoms after all this time, meds and even shunting. i so wish this was true.
I hope your new neuro is a bit more informed and realistic, for your sake. best of luck with the switch! Cath.