Monday, February 23, 2009

for some odd reason the last post wont allow me to edit or type anymore, so I have to finish here, weird

After we get insurance through disability we are to aim for a spinal tap and probably a consult with yet another neurosurgeon to get a ventricular shunt placed where we can control the pressure.
We need a doc that isn't just going to wait til I go blind to do so though. I am tired of being sick all the time and the PTC is having just as strong of an effect on who I am as my leg is....but its been a year since I have been able to walk.


Sherry said...

Hi Charlotte,

I'm a silent follower of your log. I'm so happy your seeing a new neuro. It sounds like to me your going down a new path that seems to be the right one...

I have spinal taps about every 8 weeks. (Not the norm. But my pressures get very high. My neuro wants to do a vent. shunt, however I am having gastric bypass in about a month or two, as I am waiting on insurance now) and he has agreed to wait on that as well). :) My highest pressure was 58. My last spinal tap was Dec 30 and I'm due for another one as my pressures are getting high again, as my headaches are getting dibilitating again. (I have four small children and the dizziness and blurred vision with my optic nerve swelling is severe when my pressures get high) So... I'll be going back in soon!

I don't know if you've had an LP before, but if not, and you need someone to talk to. Please email me. I can give some comfort maybe, as I've had 7 in the last 8 months. ugh!!! I am also on Topamax. Its a very nasty medication to be on. As I've said, I read your blogs and know you really feel tired and yucky I'm concerned that he's jumping from 50 mg to 200mg. I could NOT do that jump. Personally. It is a HUGE HUGE shock to your body, depending on how your body handles medications. I can only hanlde topamax in 50 mg incriments. I take 250 mg two times per day. My neuro is working me up to 400 two times per day. Anyway, just wanted to say good luck! I'm praying for you and your family! Sherry

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