Patient

Sandy Kaufman
Patient
North Hollywood, CA

Q. How was your meningioma discovered?
A. I started to experience hearing loss in my left ear in late 2004. By February 2005 I had an occasional ringing. After a hearing test the audiologist told me that she thought something was behind the eardrum. The Head and Neck doctor I saw told me it was otosclerosis and I had to live with it. After a few months of progressing noises — ringing, trucks idling and waves crashing, and a horrible pressure in my ear, along with a sensitivity to sound — I decided to get a second opinion. That Head and Neck doctor did a whole battery of blood work and ordered an MRI. The MRI was done the morning of May 31, 2005, and the next afternoon the doctor called to tell me I had a meningioma.

Q. How did you source your doctor?
A. I’m a member Kaiser HMO. I needed skull base surgery and the only southern California surgery team is in San Diego. One of my sons is a doctor with a colleague who was a chief of neurosurgery and knew a Kaiser neurosurgeon in northern California, who said the San Diego doctors were good. As a Kaiser member I really didn’t feel I had too much of a choice. I did research the doctors on the Internet and received information about them from a Meningioma Mommas member.

Q. What course of treatment did you undergo?
A. On July 6, 2005, I had a retrosigmoid craniectomy to remove a 4cm left posterior fossa tumor based on the posterior petris bone. (A CPA tumor)

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. The unknown. I was very fortunate that I had doctors who were knowledgeable and supportive, but the first few days after diagnosis were horrible —trying to get information to understand the implications of the need for brain surgery. I was also fortunate in having a son who could get information for me and who talked to the diagnosing doctor and had my MRI read by his friend. I do not know how the “average” person wades through this process.

A very scary time was when I got a staph infection in my incision and was terrified it would spread and I would die. (The doctor was very reassuring, but
Poppa Stuart calmed me the most.)

Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I get a yearly MRI, which I will do for four more years. I continue to hear noises and am now hearing chirping crickets that suddenly sound like they are swarming and go into a dizzy spell. I still experience some sensitivity to music or in group settings.

Q. Who were your caregivers and how did you interact with them?
A. My husband, a son who delayed his moving into an apartment because of my surgery, and a long-time friend. Everyone was wonderful. Friends supplied meals, my husband doted on me. Everyone was there for me. But one friend insisted that because the tumor was in the lining of the brain that it wasn’t a real brain tumor.

Q. How was your life changed by this experience?
A. I appreciate life a lot more and want to live it to the fullest, but sometimes the noises make me want to take a hammer to my head to try and get rid of them. Then there are the times I suddenly realize, again, that I had a brain tumor and will fall apart completely. I think I will always worry that the tumor will come back and I’ll have to have another surgery.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Get as much information as possible. Get a 2nd opinion, or 3rd or 4th, if needed. Join a support group — Meningioma Mommas was the best thing I could have done. I received support and information and continue to do so. Be proactive and don’t let anyone bully you into a treatment or non treatment. AND, if you need it, get counseling to help deal with it.

Q. Knowing what you know now, what would you have done differently, if anything?
A. I would have had my tumor tested for hormone receptors. My doctors feel that there is no relationship between hormones and meningiomas, but I started HRT 14 years ago — probably around the time my tumor started developing and growing. Otherwise, I feel that I did all I could do, knowing that I was having the “easy” brain surgery. Now I realize that brain surgery is never easy for the patient.

Q. How would you assess your quality of life today?
A. Fairly good. I consider myself to be one of the success stories.