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...
Hey everyone -
Thanks again for all your replies on my previous post. The last couple of days I have had vision "splotches" in my right eye and it is making me scared because it only confirms how serious this dang PTC condition can be. As most of you know, I can no longer do the Optic Nerve Sheath Decompression surgery anymore and I can't take Diamox either...so, my fears of having to have a VP shunt seems to be what I'm going to have to do..I see a Neurosurgeon next Monday and wonder if there are any particular questions that may be beneficial in asking? Any suggestions? I just hate the idea of having to deal with a shunt and all the hassles that it may cause with everyday life, especially with my job. My NS is located 1.5 hours away from my house, so it isn't like I can just jump in the car if I have a problem. You know what I mean? I guess I'm just getting scared of what the doc will say...
Hope everyone is having a great day!
Thanks again for all your replies on my previous post. The last couple of days I have had vision "splotches" in my right eye and it is making me scared because it only confirms how serious this dang PTC condition can be. As most of you know, I can no longer do the Optic Nerve Sheath Decompression surgery anymore and I can't take Diamox either...so, my fears of having to have a VP shunt seems to be what I'm going to have to do..I see a Neurosurgeon next Monday and wonder if there are any particular questions that may be beneficial in asking? Any suggestions? I just hate the idea of having to deal with a shunt and all the hassles that it may cause with everyday life, especially with my job. My NS is located 1.5 hours away from my house, so it isn't like I can just jump in the car if I have a problem. You know what I mean? I guess I'm just getting scared of what the doc will say...
Hope everyone is having a great day!
I know you are scared. I know yoe have only heard bad things aboout shunts. Believe me I had all those same feelings and actually cried to my wife as I was laying in my hospital bed just before surgery. She asked me what it was that I was so afraid of. Was is fear that the operation would not work? Was it fear that something would go wrong? Was it fear that that my head would look funny or what people might think or say? And she kept asking what it was that I was so afraid of. I just told her "honey, I am just scared. It is an operation that is going to happen inside my head and it just scares me". Well then they came to get me. Laurie went eith me until the very last minute and when I awoke there she was. She asked me how I felt and when I said "like shit" she said "I love you, Dr Shafa said the surgery went well". And here I am trying to help you ease your fears. Remember, I was only trying to get rid of a headache. You are trying to save something much more precious, your sight. I watched my father go blind while battling cancer. I vowed to never live blind. The surgery was well worth the fear. I wish I knew you better and that I knew your friends and afamily because I would gather everyone around you and hug you and tell you, "it is going to be ok".
Please don't be afraid of what the doctor tells you. We too had to travel 93 miles, 1.5 to 3 hours to get to the NS but it was worth every hour spent in the car. You are in my thoughts and if I can do anything to help your fears just let me know.
Shunts do work. I am living proof.
TJ
GB,
Did you read my Ogana Gold discussion? This stuff helped me out...maybe you could give it a shot, it wouldnt hurt.
Dymin