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...
So I checked in at Johns Hopkins on Tuesday for my icp monitoring. They use a catheter ran through the spinal tap needle which is then hooked up to monitor. The care was excellent nursing staff rocked even the nutrition staff brought an extra tray for my kids! Dr Solomon was my doctor there and he does the inpatient side of the csf clinic he listened and was very thorough in his explanations. So why am disapponted?
After being on the diamox since jan 21st I weaned from 1000mg to 500 to 0 in two weeks my pressures showed normal. I went in with the ear ringing, under water sound in my left ear especially,visual pulsation, sore eyes,headache and this weird numbness on the left side of my face. However 48hours of monitoring even laying flat and my icp stayed in what they called a normal range around 11. Why?????I know that had it rained while I was in there it would have been have shown higher. I actually felt the worsening of my symptoms as I weaned off the diamox although it never went back to how it was pre diamox. I know my pressures seem to flucuate and have days of feeling ok followed by days of bad pressure and migraine headaches. But of course now he is going to focus on treating the migraines and has given me effexor and took me off diamox.
I am worried now about what is going to happen to my pain level now. It is supposed to rain tomorrow the day after my d/c so I guess I will see how much worse it will get. My body reaction to diamox is not as bad as some and not that I want to be on it but I am concerned. I need to go back to work and only have another 4 weeks before they no longer have to hold my job and I think I could muddle through with the headache but the dizziness I can't. My job has no light duty and since I work in rehab I have to be able to lift and support people. So far my neuro has not given me anything for the dizziness, which comes with activity and bending and squating ,except the tilt table test. That of course showed nothing and the dr that admistered it explained to me that the rocking type of dizziness wouldn't show on that test. So I fear I am beginning to look like a big fat liar. My mri/mrv showed the fluid, my prolactinoma, my empty sella and my venous stenosis so I don't understand why pressures and tests aren't agreeing.
I know this was too long but I needed to vent. I have noticed lately that the back of my neck seems to be clicking too but I haven't said anything because that will probably come back normal too. Any thoughts?
After being on the diamox since jan 21st I weaned from 1000mg to 500 to 0 in two weeks my pressures showed normal. I went in with the ear ringing, under water sound in my left ear especially,visual pulsation, sore eyes,headache and this weird numbness on the left side of my face. However 48hours of monitoring even laying flat and my icp stayed in what they called a normal range around 11. Why?????I know that had it rained while I was in there it would have been have shown higher. I actually felt the worsening of my symptoms as I weaned off the diamox although it never went back to how it was pre diamox. I know my pressures seem to flucuate and have days of feeling ok followed by days of bad pressure and migraine headaches. But of course now he is going to focus on treating the migraines and has given me effexor and took me off diamox.
I am worried now about what is going to happen to my pain level now. It is supposed to rain tomorrow the day after my d/c so I guess I will see how much worse it will get. My body reaction to diamox is not as bad as some and not that I want to be on it but I am concerned. I need to go back to work and only have another 4 weeks before they no longer have to hold my job and I think I could muddle through with the headache but the dizziness I can't. My job has no light duty and since I work in rehab I have to be able to lift and support people. So far my neuro has not given me anything for the dizziness, which comes with activity and bending and squating ,except the tilt table test. That of course showed nothing and the dr that admistered it explained to me that the rocking type of dizziness wouldn't show on that test. So I fear I am beginning to look like a big fat liar. My mri/mrv showed the fluid, my prolactinoma, my empty sella and my venous stenosis so I don't understand why pressures and tests aren't agreeing.
I know this was too long but I needed to vent. I have noticed lately that the back of my neck seems to be clicking too but I haven't said anything because that will probably come back normal too. Any thoughts?
Here's a crazy theory. I read somewhere (but can't remember where) that pituitary adenomas can cause high csf pressure. I wonder if pituitary tumors secrete at a constant rate, or if it fluctuates? If it does fluctuate it might explain the csf fluctuation. I think the way to test this out would be to get the pituitary tumor taken care of and see if there's a change in your pressure. Here's something I just found:
"More recently, Maira and colleagues have also demonstrated altered CSF dynamics in a large series of patients with the empty sella syndrome. These alterations correlate highly with prolactin abnormalities and symptomatology, both of which resolve with shunting." http://pituitaryadenoma.net/emptysella.htm
Here's more:
"Continuous intracranial pressure monitoring has demonstrated intermittent pressure increases in some patients with pseudotumor and empty sella, but others lack such rises. Severe systemic hypertension may play a role in such intermittent increases; it is present in as many as 31 percent of empty sella patients. Patients "
http://pituitaryadenoma.net/emptysella.htm
Seasprite thanks for this info it sounds like me. My ttreatment for the pituitary tumor is delayed because my daughter won't stop nursing and they can't tell if my prolactin levels are up abnormally. I've tried to be patient with her but I need to take care of myself now. I don't know how big it is now but I saw it and will order my medical record to compare to any research.
Hope