Patient
Carolyn Smith
Patient
Stoneham, MA
Q. How was your meningioma discovered?
A. My meningioma was discovered as an incidental finding. I had experienced a very severe headache in the fall of 2003. Since I was seeing a neurologist for another problem, I mentioned the headache to him. He immediately ordered several tests, CT scan and MRA/MRI being two of them. The MRA/MRI showed a “lesion” in the area of the pituitary gland. The neurologist immediately made appointments for me with an eye doctor, a neurosurgeon, and a doctor specializing in pituitary glands, etc. The neurosurgeon ordered a second MRI with contrast so he could see more clearly what the lesion was. Officially on Oct. 20, 2003, I was told that it was not a “lesion” but a brain tumor, probably a meningioma. It resides in the cavernous sinus and is completely encasing the nerves to the right side of the face T4-T7 and is wrapped around the internal carotid artery. (Looks like two fingers making an O). Because of the danger to the nerves, I was told that the only option at this time was watch and wait with yearly MRIs to see if the tumor had grown.
Q. How did you source your doctor?
A. My initial neurologist was recommended by my primary-care physician. The neurologist recommended the neurosurgeon that I saw initially. I was not willing to accept the watch-and-wait decision.
After an initial period of shock and disbelief, I used the US News and World report on hospitals to track down the nearest hospital with a high rating in neurosurgery and look for the highest-ranking doctor in treatment of cavernous sinus tumors. I saw him late November 2003 and he gave me the same answer while answering many other questions.
By this time I was interacting with a message board called Meningioma Mommas. I posted a request for information about doctors who treated hard-to-operate tumors. The women on the board gave me several names. One was in very close to me, Dr. Peter Black. I then saw him for a third opinion. He agreed with all the rest that surgery was not an option for me.
Q. What course of treatment did you undergo?
A. I have not had any treatment for the tumor. I have had several follow up MRIs and evaluations including visual field tests every year, but the recommendation continues to be watch and wait.
Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. The most difficult part of this diagnosis is the knowledge there is something growing in my brain. It is slowly clamping down on the nerves to the right side of the face, which is causing “tic” and other facial issues. This tumor is wrapped around the artery and I wonder if that is affecting my blood pressure. I have developed a “hyper” sensitivity to nerve problems. I ride a roller coaster of emotions, going from depression — “I can’t deal with this,” to “I can enjoy life, why let a tumor limit me?”
Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A. I continue to see the original neurosurgeon yearly and have yearly visual field and eye exams. I have not had another headache of the severity of the one that triggered this finding, but have experienced an increasing number of “stress” headaches. The tics and other problems with the right side have been controlled by taking an AED.
Q. Who were your caregivers and how did you interact with them?
A. My husband is my primary caregiver. He has been very supportive and particularly helpful when I have gone for doctor’s visits. Because I have not had any treatments, I have not needed other support at home. I have found considerable support from my church where I am encouraged and uplifted. I have found other support from the Meningioma Mommas message board. The people there have been very comforting.
Q. How was your life changed by this experience?
A. The biggest change is how I view life. Living with a problem like this has forced me to re-define “normal” life. It was particularly driven home to me because on Oct. 19, 2003, just one day before I received my official word, a good friend and associate from work was killed in a freak accident. Suddenly life just did not seem the same.
Q. Do you have any advice for people who are at the beginning of this personal journey?
A. My advice has two parts. Part one is — the life path you were just following has now been destroyed and you have been knocked on to another path. It is not one you would have chosen but it is the one you will now have to follow. Trying to return to your former path will only increase your depression. Part two is — join a support group either online (Meningioma Mommas for example) or locally. When going through a major medical problem, it is very helpful to have others to talk to who have been through it or are walking it out. They can give you knowledge a doctor can’t and advice that will save you time and energy along the way
Q. Knowing what you know now, what would you have done differently, if anything?
A. I am not sure I would have done anything significantly differently. The thing I would have done and wished I had is obtained copies of all medical records as I was growing up. In the past I have had CT scans and other procedures, which have been lost because of hospitals closing. Lesson learned is only with these records can I document to a new doctor what has been done before. Doctors seem unwilling to listen to the patient.
Q. How would you assess your quality of life today?
A. My quality of life is only fair. Most of this is due to other medical problems, which are unrelated to the brain tumor. Yet, I continue to wonder if the brain tumor isn’t adding to them.