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About Me
CharlotteD
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About Me
I am a student, a wife and a mom. I have been battling Pseudotumor Cerebri since 1998, Migraines since 1989, and was diagnosed with Obstructive Sleep Apnea in March 2008 and Arnold Chiari 1 in May of 2008, a possible side effect of a failed LP shunt. Facing Potential VP shunt, and Possible Decompression Surgery.
I am a student, a wife and a mom. I have been battling Pseudotumor Cerebri since 1998, Migraines since 1989, and was diagnosed with Obstructive Sleep Apnea in March 2008 and Arnold Chiari 1 in May of 2008, a possible side effect of a failed LP shunt. Facing Potential VP shunt, and Possible Decompression Surgery.
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Interests
Amateur Radio, Homeschooling, church and my family
Amateur Radio, Homeschooling, church and my family
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Recent Activity
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Journal
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:) hope you have a good day
Prayer
Thanks
Thank you again for your nice message. [=
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I was thinking that mine sounds like a high pressure problem and not low. Everytime I call my surgeon he keeps telling me it is too soon to do anything about it. I keep wondering if I made the wrong decision to do this. I have problems with spinal taps so I was surprised that my dr. talked me into a lp shunt instead of a vp shunt. Do you have a vp shunt? Have you had an lp shunt before? Thanks for responding to me. I stumbled across this website and couldn't believe that I found people who could understand what I am going through. I hope you are doing good right now :)
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Support Groups
Close Pseudotumor Cerebri
I have had PTC for 19 years officially diagnosed for almost 11, had a 3 year remission and its on the rebound with lots of complications currently applying for disability because last surgery paralyzed a leg.
Treatments
- Clonazepam Working / Worked
- While its not a pain reliever, it does help me sleep through the pain, I am actually upto about 5 hours a night, which is twice what I was getting when he prescribed it
- Lasix Not Working
- nothing lowered the pressure til my eye surgery then I was stable for a year and needed taps annually til I had the shunt then was good til I gave in and admitted it was back
- Topamax Not Working
- This is iffy it has not touched the headaches but its the first drug that helped the nerve pain from the shunt removal a year ago on 100mg 2x daily was on 50mg 1x daily for 2 months with no affects at all, the side effects kicked in at higher dose equal to that of diamox, including vision loss, but since it did not help with weight loss even with no appetite dr took me off
- Hydrocodone Somewhat Helpful
- Helps tame the headaches If only it would bring them all the way down.
Close Arnold-Chiari Malformation
Diagnosed when trying to rule out shunt failure for Psuedotumor Cerebri, a year ago, no measurements given, but was told it was likely there before the shunt was put in and will likely need correction in the future, had CINE MRI and flow was significantly impaired. Currently without insurance and doc was none too happy that he couldn't recheck
Treatments
- Naproxen Not Working
- what a joke
Open Sleep Apnea
One of many complications this past year, 3 sleep studies later 3 pressure settings later, We are at 17 now, have been on CPAP for a year see pulmonolgist for Dyspnea and Apneas, She is more unahppy about pain control than the apneas, because the apneas arent the only things waking me up multiple times a night.
Treatments
- CPAP Working / Worked
- Air Leaks, but other than that, I can live with it...it took some getting used to, I am on 3rd different mask though high pressures make the right mask a real challenge because so far they are all leaky or leave nasty marks on my face
