Hey!
Glad your 6th Spinal went smoothly. Did they drain any fluid to bring your pressure down?

Does it help you if they do CSF?

For some reason, draining CSF never relieved any of my symptoms. Just got a wicked spinal headache every time that lasted for weeks-even blood patches didn't help. Weird.

Hope you are resting and feeling better :)

Yeah she took about 25-30cc's of fluid out and it did help but took about a half hour for headache to get better. I had a wicked one right after it was done but lying down for half hour made it feel better. Back is what hurts the most. My headache will probably come back in a few days time

Glad you are getting some relief now at least from the headaches...

Spinal Taps never helped me for some reason. What is your Dr's long term treatment plan if ok to ask?

Before my shunt, lumbar punctures, even though the process was always hell, the hospital I'm treated at is a teaching hospital, and the people performing them were always learning seemingly on me, and missing the place with the fluid, were my heaven.
Even if for a VERY brief period of time, I always felt great after an LP.

not sure yet what plan is i go back april 11 ill probably have to see my neuro ophthalmologist again and im back to taking my meds ugh

Canamerica, How is your shunt working? Any kinks or revisions?

I was given the choice between a shunt and Optic Nerve Decompression Surgery and chose the Decompression Surgery.

Nickkiez, what meds do they have you on? I am guessing Diamox? Diamox is harsh...

Hope you are still feeling good today!

I don't take diamox I couldn't tolerate the side effects I was so out of it I couldn't function. I take a similar drug called methazolamide. I have to get back to the dosage I was on before which is 200mg a day

My shunt is great, no revisions, no infections so far, it's been a year an a half. I don't have a programmable one, just an old school tubey plastic one. Before surgery, I was mostly blind, after surgery (and I'm told a lot of fluid is drained out during surgery) I woke up and could see.
Still had some mild headaches, not from pressure, the NO attributed them to a lack of pressure, actually and was put on Topamax, and been pretty headache free. I find when I do get headaches, if I get them is like, when it's that time of the month.
But yeah, no revisions, breakages, or infections yet, I thank my lucky stars, I've read the horror stories of shunts.
I see the NO once every 6 months and have a CT every 6 months, and an MRI once a year, unless I'm having problems. Trips to the ER are longer, because, lets say, I have a fever and am sick with bronchitis, they have to make sure it's not an infection in my shunt. Or if I went to the ER with stomach pain, they have to make sure it's not my shunt.
Other than that, though. I went from being a college dropout who couldn't do anything but lay around all day and look at nothing, to back in school, car and licence, and now working two jobs.
:)

Awesome canamerica!
Glad your shunt is working so well! I think we hear a lot of horror stories about shunts here, because most people who have had successful shunts and are in remission, don't always need to come to a support group.
It's great to hear a Shunt Success Story! :)

Glad the shunt worked for you I wonder what the next course of treatment for me is guess I'll find out in April

Hey Nickkiez,

Have you thought about what you would like your net step to be?
If your Dr has brought up surgery, have you thought about shunts or optic nerve decompression?

How long ago were you DX'd? Do you feel like your methazolamide works? When I was on Lasix, I knew it worked-SO many trips to the bathroom every day and absolutely no fluids after 6p!

Anyway, I hope your appt in April is a good one and you walk away with a good treatment plan you feel comfortable with.

all i know is i dont really want surgery if i can help it and yes my doctors have suggested surgery back in 2011 but didnt want to put me through it at that time. i was first diagnosed in 1996 then again 2010 and again yesterday or should i say it probably never fully went away. i was on methazolamide for a year and a half before it started to work stopped it in april 2012 because of it being on long term back order now i am put on it again and will probably be for rest of life i was told

You and I have each have PTC for 17 years....sucks!

During periods of Remission, most of them lasting 6 months-2 years at most, I was always left on Diamox/Lasix I guess as a precautionary measure.

Even after successful Decompression Surgery I was kept on Lasix. I've been in remission for several years now. When I got Dx'd with some other illnesses, my Dr took me off the Lasix because I was on so many other meds, I have an exam every month just to be safe, and would have to go back on Lasix, or could have the surgery again If I took a turn for the worse.

The funny thing is, I actually MISS the Lasix. After so many years on Diuretics, it seems like I always feel bloated. I keep asking my neuro-optho if I should just go back on the Lasix to be safe-he just laughs.

that sucks that you've had this as long as me i wouldn't wish this on anyone. i now cant wait till April 11 to see what their plan is for treating me again i bet ill have to see my neuro ophthalmologist again havent seen her since nov 2011

I just cut the opthomologist out of my medical team completely and just see my neuro ophthalmologist I felt like my opthamologist was just the 'Middle Man' so to speak.

It does suck having PTC this long, but I do feel lucky that I have periods of remission and that I had a successful surgery that has helped very much.

Keep me posted about your appointment and treatment plan...It's been awhile since I have needed a treatment plan, so I am curious if there is anything new out there.

Here's to a headache free day :)