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 am new to this group. I was just informed that I have Pseudotumor Cerebri, my neurologist told me on Tuesday. I have been trying to do research online but everything i have found makes me SCARED to read anymore online. I have another appointment my doctor on Tuesday, and i don't know what to say to him (questions to ask). My family is upset about all this, they are saying that it is not a big deal and from what i have read online it is a very big deal, i dont know if they are in denial or what..
Any advise on what to ask my doctor on Tuesday?
Any advise on what to ask my doctor on Tuesday?
First, I'm sorry you have wound up here like the rest of us and have to go through this. There is a very good group of folks here though who are super knowledgeable and supportive--hope we can encourage you along the way.
Some things you read are more or less trustworthy: I would check out these sites, http://www.iih.org.uk/, http://ihrfoundation.org/, http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/pseudotumor_cerebri/pseudotumor_cerebri_qa.html.
Basically, if I were you I would try to get as informed about your sings and condition as I could be. Learn all the medical terms and what they mean. Learn what signs you have and don't and why your specialists are concerned and not and what they think the next steps should be, and what implications they anticipate for you.
I would ask if you will be started on medications, if they will send you for any further testing? Have you had an MRI, were there signs of increased Intracranial Pressure (ICP) on your MRI? Did you show signs of swelling on your optic discs, how bad? What is their suggestions for treatment? that kind of thing to get you started. Do they think there is an underlying cause for your IIH?
Also, I would asked about getting tested for Obstructive Sleep Apnea. One of our members is a Dr. and she has published on her research on the connection between OSA as an underlying cause of sleep apnea. You can search the topic here on the forum discussion posts.
Good luck with your appointment. Hope it goes well!! Hang in there!
I went back to the doctor today and he put me on some medicine because when they did the lumbar tap it did not lower my pressure and my head is killing me and my eye sight is going and i have been to three different eye doctors. I just want my head to quit hurting..
I'm sorry about your family. most of us have had trouble being taken seriously by family, friends, and doctors. try to always believe in yourself and don't let people make you feel bad just because they don't understand and they dismiss you. this is an invisible illness. they can't see it so they down play it. there is a booklet put out by the invisible disabilities association that might be helpful for your family. "But you LOOK good."