Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I've been kind of MIA from the board for several months between the scare of possible ovarian cancer to moving across the country, so I apologize for just jumping in and asking tons of questions.
After having two large masses removed from my abdomen last year it seemed as though my PTC had gone into remission. Then when we traveled across the country I started having odd neck pain, and other issues. I followed up with my new ophthmologist and neuro both of which have dismissed the symptoms as relating to PTC, but I disagree something is off and it's not getting better.
They are right in the fact I'm not having headaches, I don't have elevated optic nerves (always my #1 symptom). But when I sit for any real length of time 30 mins or more) I get horrible neck pain like someone has hit me in the back of the neck with a bat. My neck will pop (like cracking your knuckles) if I turn it even slightly. My eyes feel out of focus but get better if I stand and get moving. I don't get truly dizzy but I can't move suddenly or I lose my balance (even though I'm sitting). And I noticed sometimes I really feel like I'm in a fog (thinking wise). As you can imagine these symptoms do not mesh well with driving.
I still take Diamox 250mg every 12 hrs. Anyone else have anything like this? Do you think these could be low pressure symptoms? My other concern is should I be worried this is something like Chiari? I have an MRI scheduled for Friday, mainly cause it's been 4 years since I have had one, but not sure if it is just of my head if it will show my neck as well.
After having two large masses removed from my abdomen last year it seemed as though my PTC had gone into remission. Then when we traveled across the country I started having odd neck pain, and other issues. I followed up with my new ophthmologist and neuro both of which have dismissed the symptoms as relating to PTC, but I disagree something is off and it's not getting better.
They are right in the fact I'm not having headaches, I don't have elevated optic nerves (always my #1 symptom). But when I sit for any real length of time 30 mins or more) I get horrible neck pain like someone has hit me in the back of the neck with a bat. My neck will pop (like cracking your knuckles) if I turn it even slightly. My eyes feel out of focus but get better if I stand and get moving. I don't get truly dizzy but I can't move suddenly or I lose my balance (even though I'm sitting). And I noticed sometimes I really feel like I'm in a fog (thinking wise). As you can imagine these symptoms do not mesh well with driving.
I still take Diamox 250mg every 12 hrs. Anyone else have anything like this? Do you think these could be low pressure symptoms? My other concern is should I be worried this is something like Chiari? I have an MRI scheduled for Friday, mainly cause it's been 4 years since I have had one, but not sure if it is just of my head if it will show my neck as well.
the abdominal masses may have been increasing central venous pressure, increasing your ICP, such that you noticed a difference when they were removed. I had the same experience after my thyroidectomy. now, we have talked before about sleep apnea. did your docs ever figure this one out? the thing is, the anatomical problem which causes OSA will also cause an airway problem while waking. and this airway problem will cause an abnormal neck posture. it may be that your neck pain is secondary to a de-compensation of your ability to maintain your neck in a position that keeps your airway open, without also having muscular pain from holding your head in an awkward position.
The abdominal masses were definitely affecting my CSF levels both hormonally and putting pressure on my abdomen as they were both roughly 9cmx8cm each!
I guess I will see what this MRI says and go from there. Thanks for the advice/response!
Your symptoms sound like PTC so I see where you disagree with the doctors. I would get checked for Chiari because that is a possibility as well. You really need a neck MRI.
Hopefully your MRI's will help figure out what is causing your issues.