Severe Pseudotumor Cerebri?

[daphodil]

Ever since I was about 6 years old (I am now 18 years old) I remember having troubles with my vision. Once in a while my vision would just leave in both eyes for a few seconds and then come back. Now being a little girl, for some reason I thought it was normal. It wasn't until it got worse and I started to have bad head pressure 6th grade in Jr. (Side note: I was an active child. I was in basketball, tennis, did a bit of ballet an karate and in 6th grade I did track. I was not obese/overweight like the disorder says is common) It wasn't until my freshman year in high school - so about 14 years old - that we finally found a diagnoses. The doctor told us that he thought it was highly unlikely but I could have Pseudotumor Cerebri. He said there were parts that matched up perfectly, especially after having a spinal tap. The spinal tap completely (but temporarily) got rid of the pressure on my head, I was having aches in my back and neck from the pressure on my head and I was having severe vision problems (double vision, blurry vision, and temporary blindness). However, the fact that I'm a healthier weight, I have no swelling behind my eyes and the fact that pressure my spinal fluid is at is in a normal range would indicate that I do not have Pseudotumor Cerebri. But I since I was 5, I've been diagnosed with Sensitive Bowel Syndrome so my body naturally is VERY sensitive to everything. I used to get so sick because I could feel the digestion process in my stomach. It was horrible. Anyways, so the doctor gave me medicine that he would give someone who had Pseudotumor and IT WORKED. So I thought my problems were solved. Wrong. Over the years it's gotten more severe. I'm at the point where I am also extremely dizzy and lightheaded. Working and going to school is a very hard task for me. I cannot focus because of the pain I'm in. My vision can hardly focus and my vision is almost always fading in and out of darkness. The pressure in my head has only gotten worse and no matter how much they up my dosage, it doesn't help. Because I'm not responding to the medicine like I should, the doctors don't know what to say I have, so I have to see a neurosurgeon to get his take on things, which also means a lot of tests. I'm nervous and I have no idea what to expect. My doctor thinks this could potentially be a severe form of Pseudotumor but apparently that like never happens. He knows I cannot lose anymore weight otherwise I'd be too skinny, so my weight is not causing the problem. What are your thoughts? What potentially could this be if it's not Pseudotumor Cerebri? I'm at a loss here and I just want the pressure and the vision loss to go away. Thank you for your time.

[daphodil]

They don't know, it's such a weird case that they aren't 100% sure I actually have PTC. That's the really hard part.

No, I've never heard of it before but I did a little digging and the symptoms are awfully similar so that could be a possibility.

Thank you!

[selmaS]

  Hi....I am not a medical Dr, but I know the PTC can have a cause or none at all...just wondering if u know which urs is?

Also do u know if u may also have Chiari Malformation?

There are a few others with this condition here....so I am sure u will get more info.

Good luck to u.