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benine intercranial hypertension

Posted In: Medical Stories 2 Replies
  • Posted By: royals
  • August 6, 2008
  • 00:53 PM

8 years ago my little girl was diagnosed with an illness that would change her life forever today she is 15 and lives with severe headaches that no one can do anything about my daughter jessica was 7 a fit and healthy girl who loved sports and the outdoors when she started complaning of bad headaches after all these tests no one could tell me what was going on they started my baby on steriods which did nothing other than make her gain a lot of wait after a lumbar puncture they found that the pressure going to her brain was so high, As time goes on and another 4 lumbar punctures they decide to put a lumbar shunt in that drains the fluid away from the brain to reduce pressure well that would be fine if we lived in a perfect world but we dont in the last 6 weeks she has had 5 operations 3 of which they put a machine called an icp monitor in her head which reads pressure that goes to the brain it stays in for 3 days its horrible then twice they have had to change her valve in her shunt because it wasn't working properly now on being released from hospital with a drug called diamox hoping that would help on monday jessica was admitted to hospital with severe side affects from the drug and her headaches are worse than ever they are now at the stage where they dont know what they are going to do they dont have any other cases like jess and are unsure how to proceed we lost count after 27 operations 14 which have come in the last 2 years if anyone knows of anyone with something simalar to this i would love to talk to you dont know where else to turn.
roylene

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  • I don't know if anyone has told you yet but ICH is also known as Pseudo Tumor Cerebri. If you look this up you may find more information than what you have so far. I was first diagnosed with PTC when I was around 15 -16 years old. I was having debilitating headaches. I first went to the ophthalmologist whose first reaction was that I had a brain tumor. In the 80's there were only CT Scans no MRI/MRV's. I went through several spinal taps and many medications, including steroids, diuretics, etc. After some time the pressure readings from the lumbar punctures/spinal taps went back to normal and my headaches ceased. Over the years I have had headaches but none as severe as the ones I had as a teenager. This past July, some 20+ years later, I woke up and had lost partial vision in my right eye. After 3 days I went to the eye doctor thinking I had an eye infection, not once thinking about the PTC from years ago. As soon as he said "we have a significant problem with your optic nerve" I immediately thought of the pseudo tumor. Here we are almost two months, two mri's, two spinal taps later and I just got into the Neuro-ophthalmologist yesterday who confirmed that the PTC is back or has been for some time, possibly never even going away just not painfully noticeable all this time. I was prescribed Diamox and Lasik to begin with. The side affects were very hard. Extreme fatigue and numbness and tingling in my extremities. I have since been taken off of those because my neurologist said my pressure was not high enough on my last tap. He then called in a prescription for prednisone. (which is not recommended for pseudo tumor) My ophthamologist said to hold off on the prednisone until seeing the neuro-ophthamologist. The neuro-opthamologist yesterday prescribed topamox. I will begin taking that tomorrow. I am not too excited about the side effects associated with that med but I also am willing to try it if it can help restore my vision.
    Anonymous 42789 Replies
    • September 11, 2008
    • 09:17 PM
    • 0
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  • I don't know if anyone has told you yet but ICH is also known as Pseudo Tumor Cerebri. If you look this up you may find more information than what you have so far. I was first diagnosed with PTC when I was around 15 -16 years old. I was having debilitating headaches. I first went to the ophthalmologist whose first reaction was that I had a brain tumor. In the 80's there were only CT Scans no MRI/MRV's. I went through several spinal taps and many medications, including steroids, diuretics, etc. After some time the pressure readings from the lumbar punctures/spinal taps went back to normal and my headaches ceased. Over the years I have had headaches but none as severe as the ones I had as a teenager. This past July, some 20+ years later, I woke up and had lost partial vision in my right eye. After 3 days I went to the eye doctor thinking I had an eye infection, not once thinking about the PTC from years ago. As soon as he said "we have a significant problem with your optic nerve" I immediately thought of the pseudo tumor. Here we are almost two months, two mri's, two spinal taps later and I just got into the Neuro-ophthalmologist yesterday who confirmed that the PTC is back or has been for some time, possibly never even going away just not painfully noticeable all this time. I was prescribed Diamox and Lasik to begin with. The side affects were very hard. Extreme fatigue and numbness and tingling in my extremities. I have since been taken off of those because my neurologist said my pressure was not high enough on my last tap. He then called in a prescription for prednisone. (which is not recommended for pseudo tumor) My ophthamologist said to hold off on the prednisone until seeing the neuro-ophthamologist. The neuro-opthamologist yesterday prescribed topamox. I will begin taking that tomorrow. I am not too excited about the side effects associated with that med but I also am willing to try it if it can help restore my vision.good luck with the topomax, they did that with my daughter and made her sick. today she is going in for optic nerve shething to save her eyesight at duke hospital, she is 9, they cannot figure out how long she has had the pressure, which it could have been since she was born, next step is shunting, she got sick on the diamox, and her spinal tap overflowed the machine and went all over the doctor.
    Anonymous 42789 Replies
    • November 9, 2009
    • 01:21 PM
    • 0
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