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Old 06-03-2009, 03:53 PM   #1
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jjza HB User
Unhappy Living with Pseudotumor Cerebri

I am 31 and I was diagnosed with Pseudotumor Cerebri in 2003. I have had an LP Shunt and 2 VP shunts and none have been working. I am living with the horrible symptons of this disease and I need help. I was approved for disability for this and I now have no insurance until I get Medicare through Disability in November. I have no doctor nor do I have any pain medication to help with the headaches and I am slowly seeing my vision get worse. Does anyone have any advice or suggestions of what I can do to get help?

Thank you for anything info you can give me.

 
Old 06-04-2009, 03:09 PM   #2
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Re: Living with Pseudotumor Cerebri

I have the same disease as you.. Do you see a lot of black floaters in day light? i get headaches off and on only on right side.. My eye doctor told me that the key to lessen the effects is loose weight.. i am very over weight.. almost 300 pounds at 25 years old..

 
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Old 06-05-2009, 09:27 AM   #3
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Re: Living with Pseudotumor Cerebri

Hi Italia 43
I do see black in the daylight and I have blurry and double vision. I am not overweight which is why they say mine is so complicated. I am not a "canidate" for this disease. I just wish there was someone out there to help me. Please let me know if you have any suggestions.

 
Old 06-05-2009, 05:12 PM   #4
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Italia 43 HB User
Re: Living with Pseudotumor Cerebri

hey.. i was also told to have a spinal tap to take out fluid in my spine.. i refused this though.. got to scared.. pseduotumor is when we have to much fluid in our brain and pressure in our optic nerve.. My opthamologist sees me every 3 months to do visual feild tests. i did take a mri last year that came back normal though.. I heard that topomax is very good for pseudo tumor too..

 
Old 06-08-2009, 08:14 PM   #5
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Re: Living with Pseudotumor Cerebri

Thanks for the info but I was on Topomax and Diamox and neither woked. This is my 3rd shunt and they are telling me my opening pressure is too high and the tubes may be too small but because of my insurance I can't find anyone to help me. How are you doing with this?

 
Old 06-21-2009, 11:30 PM   #6
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Re: Living with Pseudotumor Cerebri

Hi. I'm 32 and I was diagnosed with PTC in 2008. Mine is post-traumatic. You should see a pain doctor that will do therapeutic lumbar punctures(spinal taps) to drain the excess spinal fluid and lower the pressure in your skull. You might have to get them done monthly, as they did with me. I'm probably due for another one about now. We are going to the Mayo clinic in Rochester, MN next month to see Dr. James Watson. They regularly treat people with PTC, so they know more about it. It is important that you get that pressure lowered. Pain pills only take the edge off for me, but that's better than nothing and you have to be careful taking them for too long. You might also see an opthalmologist, as I did, that specializes in patients with PTC, to check the pressure on your optic nerve. I have not had any shunts put in yet but I am going to talk to the dr. at the Mayo Clinic about it. If I can help any more, let me know. I hope everything goes well for you.

Adam

 
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