Thank you so much for taking the time to answer my email regarding my 29 year-old granddaughter that has been blind now for almost 3 years. As many patients with PTC/IH, my granddaughter suffered the usual neck/head pain, double vision, nausea; but in a period of about five months after going blind all the symptoms (with the exception of blindness) seemed to go away (except for an occassional headache and sometime swishing in her head).
In past five weeks she has started having all the typical symptoms again (headache, swishing, nausea and most of all panic attacks). Panic attacks, I am sure are caused by her fear that the original symptoms are coming back on her after three years.
Is this possible to be free of pain and then to have it return again years later? Does one ever get past the beginning stages of this disease? She and her husband of 9 years have moved in with my husband and me in our downstairs apartment. She has recently been seen by a neurologist at University of Virginia Hospital and a small (and I do mean small amount of her vision has returned). Enough to see objects if she holds her head a certain way in order to look out of the corner of her right eye. She will be evaluated by a local neuro optomologist that is being arranged by the Virginia of Blind and Visually Handicapped.
I just feel so helpless because in some ways I blame myself for not being more attentive to her when she was complaining with headaches and blurred vision in the beginning and I suppose this will haunt me until the day I leave this earth.
Again, thank you for taking the time to respond to my last email.
Ellen (Tasha's grandmother)