Please Help!!!

[ciaravincent@yahoo.com]

I have been in post-op for about 6 months now and I have been doing ok. I have had hearing loss, vision problems, eye retardation, random white dots in my vision, vision going blurry, fatigue, irritable, cant find words to things, forgetfulness, my brain says one thing but my mouth says another, nausea, mood swings, headaches, pressure in my head, no motivation, dizzy, loss of balance, and  my incision  has not healed all the way ( i am not healing right). I do have a high pain tolerance so i never know when I am in pain. Two weeks ago I had a seizure and ended up in the hospital again for a week. The doctors did an MRI and CT and said nothing showed up. They looked at my eyes and my ears to make sure everything was ok and they were. When I was discharged, the doctor told me , point blank, that there was nothing he could do for me so he was sending me home. Since being released i am still having all these symptoms but my incision  has began to randomly start  burning and swelling and is painful with sharp pains down it. Also, I get randomly nausea, i fall asleep and cannot help it or do not notice that i do, and i began to get random fast onset headaches that last for about 15 minutes and then it goes away. I had tried to walk back to my dorm ( about .5 miles from my classroom) but by the time i made it home i was short winded and my chest around my heart was killing me. I called my neurosurgeon and he wouldn't listen to all of my symptoms after i told him about my MRI and CT. I am trying to find another neurologist to get another opinion. Is this normal to have all these problems? I know that some of these are common but what about the others? I think I am beginning to go crazy but I know I am not depressed or secretly trying to get out of school because I love what I do. I tried asking my professors about what has been going on ( I am a nursing student) but they said they had no idea since this type of tumor is rare. Any advice, comments, or suggestions would be greatly appreciated !!

[wonderactivist]

ciara, while my symptoms are not exactly the same, I am also apparently past the time when the docs think I should be having problem ... and they just don't do anything but give me drugs.  antidepressants.  I completely understand your frustration.  ((( hugs )))

[alabamajane]

Ciara,
Sorry to hear you are dealing with so many post surgery issues,,,sure sounds like you have a VERY insensitive neurosurgeon ,,, that stinks too!! But not too uncommon unfortunately,,, not sure why he would dismiss your complaints of healing issues and incision pain if it is the same neuro,,, pretty arrogant!  I sure hope by now you have had success in locating a new, more empathetic Dr!! I also hope some of your symptoms have improved,,, I really don't have any other suggestions other than search for Dr who has better bedside manners and some degree of compassion ,,,, it's hard enough to go through this surgery without dealing with Dr issues,,,, best of luck and let us know how you are doing,,,
 
Jane

[Ruthie Mac]

Help! is an understatement... Sounds like you are living a nightmare. My heart goes out to you, and all of us that are dealing with these horrible symptoms... but hang in there, you sound strong and brave.
Don't know where you're located, but have you reached out to House Clinic in L.A. ? They are amazing. They are totally dedicated to the research of AN's and would probably want to hear your story. They give consultations by phone, and follow up regularly. I live on the East Coast and decided to have radiation, and yet, Dr. Goddard from House calls occasionally to see how I'm doing? It's worth a try, I think.
Ruth