Category Archives: Patient and Caregiver Stories

Steven & Kathleen Haley

Steven Haley, patient

Q. How was your meningioma discovered?
A. Through an eye exam after I became quite concerned that my vision in my right eye had rapidly diminished and I began experiencing severe stabbing pain in the back of my eye.

Q. How did you source your doctor? 
A. I, along with family members and one particular woman, Clare, who worked for me, researched widely for a neurosurgeon who was best in his field. I was very fortunate to have a neighbor as well as three friends who were all doctors, two being surgeons. They all came to independent yet the same conclusion; which was that Dr. Peter Black was best of class!

Q. What course of treatment did you undergo?
A. Surgery (nearly 9 hours on the table at BWH).

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A. Clearly, brain surgery is a life-altering experience where your confidence in your survivability is shaken; your awareness of your mortality is heightened; your fears of the unknown are greatly intensified; your concern for physical and intellectual deficits is overwhelming, and the love you have for your children, your spouse borders on manic. During diagnosis, or the “discovery phase”, you are overwhelmed by what you don’t know and what you need to learn in a very abbreviated period of time. Then you move on to treatment, which provides yet its own assortment of anxieties and emotions, which ended with, just prior to surgery, an attitude of “let’s just get this done – and hope for the best.” Recovery, I could not imagine what this would entail. Post surgery, I was glad that I was alive, pleased to hear that they “thought they got all of the tumor”; but disappointed that I had one major deficit (blindness in my one eye). Additionally, the risk and drug regime was considerably more onerous than anticipated but the rapid recovery (within 6-8 weeks) was welcomed. Sadly, however, primary brain tumors are but a symptom to a broader medical condition. Even more disheartening is the fact that the rate of tumor recurrence (statistically speaking) is relative high.

Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from the tumors or your treatment?
A. Annual MRI/MRA exams and neurological health checks. My main “side affect” is continued blindness in my right eye, occasional intense shooting pains in the right side of my head, and frequent running into and tripping over things, people, etc. Sometimes cold days impact the hardware in my head and give me an odd headache. Other than that, life is grand. My health seems to me holding steady and tumor activity seems to be at rest (knock on wood).

Q. Who were your caregivers and how did you interact with them?
A. My wife, Kathy, a therapist/nurse that did house calls and my children at times.

Q. How was your life changed by this experience? 
A. I created a foundation, support lots of medical research and clinical application, fund scholars and students alike in the neurosciences, joined a hospital board, invest in medical technology companies, enjoy and am thankful for every day that I get to wake up and live!! I sleep less and try not to waste my and other’s time on frivolous nonsense.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A. Take a deep breath, pause and develop a plan of action on all fronts: family, work, financial, medical, etc. You need to assemble a troupe of advocates that help you through the ordeal. It is hugely difficult to try to go it alone.

Q. Knowing what you know now, what would you have done differently, if anything?
A. I would have sought medical attention sooner.

Q. How would you assess your quality of life today?
A. I am one of the fortunate ones that believe the quality of my life is far better post-tumor than pre-tumor. My medical setback did not define who I am nor did it paralyze me to inaction. Rather the opposite; it stimulated my thinking and compelled me into all assorted action and not to waste precious time.

Kathy Haley, caregiver

Q. How did you become a caregiver? 
A. I became a caregiver when my husband Steven was diagnosed with a meningioma.

Q. Did you have any special training? From what source?
A. I had no formal training as to how to be a caregiver in this instance. I relied on information from the hospital and Steven’s surgeons. I used basic intuition and the experience I garnered from caring for my children when they were sick.

Q. What resources (or lack or resources) helped or hindered your patient?
A. I think the best resources were those supplied by the hospital and Dr. Black’s office. During the pre-operative visit to Dr. Black’s office, he described the pathology and the surgery. We understood what to expect during surgery as well as the possibility of post-surgical complications and the expectations during recovery. At the pre-operative exam and admissions orientation, we were given more specific information on preparing for surgery and the recovery afterward. The information covered anesthesia, pain medication, what to bring to the hospital, what to expect following surgery, and care at home. This gave us a good understanding of hospital procedure and nursing care. Post-surgery, Dr. Black and his staff were always available for questions and helped us through some issues when we returned home.

Q. What are the challenges you faced or continue to face?
A. The major challenge was getting through surgery. The fear of death, blindness, and/or mental impairment was forefront on our minds. Going forward, the worst fear is that the meningioma will return.

Q. How did you interact with your patient?
A. I was the major caregiver post-operative. I helped with the ongoing care once Steven was released from the hospital.

Q. What was the most difficult part of being a caregiver?
A. In our case, dealing with the anger was the most difficult. I was not prepared for the anger he felt over being a victim of the tumor. This of course was exacerbated by the steroids he was prescribed as a course of post-operative care. This was very stressful. Dr. Black’s nurse suggested we get a masseuse to help relieve the muscle pain and help him to relax. This was a very helpful suggestion.

Q. How has your life changed by this experience? 
A. Luckily, Steven survived the surgery with minimal impairment and has gone on to successfully continue with his career and family life. We no longer take our health and mortality for granted. Life is short so make the best of it. We also founded the Brain Science Foundation to fund research to study meningiomas and beneficial treatments.

Q. Do you have advice for people who are about to take on this role? 
A. First and foremost, be patient and supportive of the patient. Try to gather as much information you can about the disease and the medical and surgical alternatives. The more informed you are the better you can serve your patient. Listen to the medical staff to prepare for post-surgical treatment and convalescence. Don’t be afraid to ask questions and get second opinions.

Q. Knowing what you know now, what would you have done differently, if anything? 
A. I would have insisted that the patient go into counseling after surgery.

Q. What is the most rewarding part of caring for someone with a brain tumor?
A. As with any crisis it brings the patient and caregiver closer together. You get to fight the tumor together.

Carolyn Smith

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.

Cyndi Douglas

Patient

Cyndi Douglas
Patient
Springfield, MO

Q. How was your meningioma discovered?
A.
It was discovered in February 2001, during an MRI to investigate a pituitary dysfunction I had suffered from for many years. I was referred to an endocrinologist and an MRI was ordered to investigate the matter. My pituitary gland was fine, but a large meningioma was discovered in the frontal lobe of my brain

Q. How did you source your doctor?
A.
We chose to have the surgery at a large, university-based hospital, which has a highly rated neurosurgical facility. It was four hours from our home, but because we had only recently moved to our city, Springfield, Missouri, we were not too familiar with the medical community. We would not hesitate to stay here for such a surgery now. In the six years since, we have developed complete confidence in and appreciation for the medical care available here.

Q. What course of treatment did you undergo?
A.
My tumor was large and presented with excessive brain edema so surgery was my only treatment option. The day after my surgery, I began to develop the very serious complication of post-surgery brain swelling. I am told I was so badly swollen that I was unrecognizable. The swelling actually forced the earwax out of my ear canals. After five days of not responding to medication, I had to be taken back into surgery to correct the problem. Several days later, I began to regain consciousness.

I remember my husband being next to my bedside. He told me that I had been in a coma for almost 10 days and I had, in fact, had two brain surgeries. The first surgery was for the resection of the meningioma. The second surgery was a resection of the right frontal lobe in an attempt to correct the problem causing the brain swelling from the first surgery.

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
I was so frightened. I had never had any serious health problems prior to diagnosis and was suddenly blind-sided by a brain tumor. I had teenage daughters who I tried so hard to reassure and be brave for, but I was sick with fear. The very worst moment for me was riding down to brain surgery. I knew there was no other way out, but I just didn’t want to go through it.

Q. What kind of follow-up care are you currently pursuing?
A.
I have a yearly MRI to monitor for any possible recurrence even though my tumor was fully benign and fully resected.

Q. Do you still experience any side effects from diagnosis or treatment?
A.
I have a lot of scar tissue in the frontal lobe of my brain and three years post surgery I experienced a grand mal seizure. Because of that I take anti-seizure medication and will most likely do so for the rest of my life.

Q. Who were your caregivers and how did you interact with them?
A.
I had many wonderful friends and family seeing to my needs following my surgery, but my husband Ron was my hero. He had sold his business and retired the year before so he was able to care for me around-the-clock. For several weeks following my surgery I was severely weak and unable to do the least little things such as brush my teeth, walk or feed myself. He stayed by my side day and night and saw to my every need.

Q. How was your life changed by this experience?
A.
The biggest change has been dealing with the effects of anti-seizure medication.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
Arm yourself with knowledge about your health concerns. Learn all that you can, and don’t hesitate to ask questions of your medical provider. Discover the latest and various treatment options. Find a support group either in your community or through an Internet forum such as Meningioma Mommas. Seek out people who have walked the road before you. Be comfortable and confident with the hospital and medical team you choose. Get second and third opinions. And most important, my personal faith compels me to encourage prayer along with spiritual support and guidance.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
I would have sought out second and third opinions (or more) concerning the state my brain was in with the excessive edema. I would have insisted on extended therapy to control the edema prior to surgery.

Q. How would you assess your quality of life today?
A.
This has been a difficult journey for my family and me, but five years later, I am happy to say that I am living the best years of my life. I like who I am now far better than ever before. I learned things that no classroom or textbook could have ever taught me — compassion, strength of character, priorities and so much more. I have energy and a passion for life that I have never known. My life, my marriage, my friendships, my faith are all stronger and more meaningful that I could have ever hoped for. I also recognize that life is full of tragedy and heartache and I have learned to empathize, encourage and support others going through a life crisis. I believe there is a reason and purpose for everything. We choose how we are affected by what happens to us. I choose to be stronger from my brain tumor journey.

Darcie Tossetti

Patient

Darcie Tossetti
Patient Highland, CA

Q. How was your meningioma discovered?
A.
After several months of having what I thought to be sinus headaches and infections, my PCP sent me to a wonderful ENT. He treated me at first for the same old thing, with no improvement. He then scoped my nose and throat. Finding a small mass, he ordered a CT scan, to determine the size. My left frontal lobe meningioma was discovered with this CT scan. The small mass in my throat was later diagnosed as extra tonsil matter.

Q. How did you source your doctor?
A.
I was first sent to a neurosurgeon, by my Primary Care Physician. After the first meeting with this NS, I was very uncomfortable with him and requested a second opinion with a neurosurgeon who was recommended by a physician friend of my older brother.

Q. What course of treatment did you undergo?
A.
My meningioma was removed through surgery.

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
Not being able to talk face-to-face with someone who had already been through what I was facing. Feeling like I had lost my independence. The fear of having more seizures.

Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I have regular appointments with my neurologist. Have annual MRI and faithfully take my medication. Yes. still after being 20 months post op, I tire very easily, still have problems with my short-term memory and become upset easily.

Q. Who were your caregivers and how did you interact with them?
A.
My wonderful husband, my three grown sons, family and friends.

Q. How was your life changed by this experience?
A.
It has thought me that life is so precious and to take it one day at a time. To live in the moment.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
Ask questions…let the people around you take care of you…find a support group with others who know what you are going through…research…take care of yourself

Q. Knowing what you know now, what would you have done differently, if anything?
A.
Nothing at all.

Q. How would you assess your quality of life today?
A.
GREAT!!!! I’m alive. Trying everyday to enjoy this second chance God has given to me.

Deb Gronostalski

Patient

Deb Gronostalski
Patient

Q. How was your meningioma discovered?
A.
I was out of work on short-term disability in March/April 2003. I was having a difficult time walking by the end of the day, I wasn’t making sense when over tired, my vision was blurry. After many tests with no results the primary care doctor told me “it’s all in your head, go back to work” At the appointment I asked (actually insisted) to see someone about my headaches and blurred vision. She agreed to send to me a neurologist even though she thought it would be a waste of time.

The day I went back to work I got fired for not wanting to change my hours, but I knew I couldn’t make the 80-mile trip driving by myself. At the time I did not realize I was having panic attacks, but now I know that’s what it was. When I saw the neurologist he wanted to send me for an MRI because not only was I having headaches and blurred vision, but he said my gait was off. Three hours after my MRI, Dr. Bazemore called to say I had a brain tumor called a meningioma. He said not to worry, it was the “GOOD” kind to have and easy to remove.

Q. How did you source your doctor?
A.
Dr. Bazemore sent me to a local neurosurgeon. This neurosurgeon really had an attitude of “Oh this is nothing and just live with it for a couple of years.” So I asked people I knew from my prior job for names of doctors in Boston. I went for two more opinions, one of which I scheduled surgery with. Although his attitude was the same as the others, he said it was up to me.

Q. What course of treatment did you undergo?
A.
I scheduled surgery for September of 2003, but as I was being prepped the anesthesiologist said I was too sick with pneumonia and said no way could I have surgery. I had told the neurosurgeon over and over that I didn’t feel good, but he was actually going to do the surgery anyway! Thank God for the anesthesiologist; I just can’t imagine what might have happened.

Needless to say I decided to get another neurosurgeon and hospital. This led me to Dr .Black At Brigham’s. I had a growth spurt from September 03 to January 04 so Dr. Black advised me to have it out. I had surgery on March 22, 2004.

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
Hearing that I had a brain tumor brought back memories of a family member who had brain cancer; she died within seven months of diagnosis. It made me scared for my children not knowing what might happen to me.

I have to say once we met with Dr. Black and his group I felt very calm about my treatment and knew it would all be OK. My recovery was a little more difficult than I thought but it was mostly the dizziness, nausea and not sleeping. I did have VNA and a good support group at home.

Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I am seen by my neurosurgeon once a year at which time he does an MRI. I also have a neurologist who I see every three months because of seizures. Also have other medical issues some of which may have been from surgery but hard to say. I have had to be on several different AEDs due to allergic reactions or they just didn’t work for me.

Q. Who were your caregivers and how did you interact with them?
A.
My fiancé, Jim, and my daughter were the two people that watched over me, but after two weeks I was able to be alone during the day. I did have VNA ,PT and OT for the first six weeks after surgery. Living in the country without public transportation I was thankful to have their services available.
I knew when I was doing too much because Jim and my daughter would tell me to slow down!

Q. How was your life changed by this experience?
A.
My whole life has been turned upside down. Being a mother to four children and divorced, I worked to raise them on my own. I am a type “A” person who has to do everything myself. It’s hard to give up your independence to a brain tumor. When I heard it’s the easy kind to get out, I figured OK, that’s good, not knowing at the time it was not really the “GOOD” kind to have.

I was never a sick person and now it seems I have something new coming at me all the time. I developed a thyroid problem, went into full menopause, gained weight, have cognitive issues/ short-term memory problems. When I had a neuropysch test done the results were that I wouldn’t be able to work, I was very depressed. So I am also on an anti-depression medication.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
I would say “Be your own advocate.” It is very important to listen to your body. Do not walk away from an appointment with unanswered questions. Bring a notebook and someone to all of your appointments — it helps not only to have the support, but the other set of ears. I know that it’s easy to get overwhelmed and walk out, forgetting everything you just heard.

If you are not comfortable with the first opinion, do not hesitate to go to another doctor. Find a support group; it really does help to talk to other people who have or will have surgery. Don’t shut out your family. This is hard for them too; they may not show it, but it is.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
I would have had a neurologist. I didn’t realize that I needed to stay with Dr. Bazemore to follow up with after surgery. I was lucky that my neurosurgeon was available to answer questions and take care of meds when I needed them.

It is important to have a neurologist to also follow any non-surgical treatments such as seizures, depression, general well being. Your neurologist should be someone to keep the other doctors apprised of any and all treatments. It’s important that they all keep in touch.

Q. How would you assess your quality of life today?
A.
There are so many things that go through my mind with this question. I lost my job, my car, my independence. I can’t drive. I can’t work. My cognitive abilities are gone, as is my short-term memory. I walk with a cane. I have seizures. I take 6 medications and I never had to do that before. I just got approved for SSDD and realized life will never be the same!

Although everyday when I wake up, put my feet on the floor, open my eyes, hear my dogs barking and smell the fresh air I realize how lucky I am to be here. I have a wonderful man that stands by me and has been my rock! I have my four beautiful children who “love, me for me” even though I may not be the same old mom. I am blessed with a wonderful team of doctors who take excellent care of me.

I found the best support group in the world, knowing that anytime I need to ask a question they will be there for me. They have helped me through some very tough days, always understanding when no one else did. I don’t know how I would get through this journey without them.
I always say “life will never be the same” but was it ever meant to be. Life is a journey and mine took a road unknown, but I know it will be OK.

Janet Chavez

Patient

Janet Chavez
Patient
Denver, CO

Q. How was your meningioma discovered?
A.
A very bad headache sent me to the ER. First a Lumbar Puncture to rule out a stroke then a CT found the baseball-sized “mass.”

Q. How did you source your doctor?
A.
Insurance referral.

Q. What course of treatment did you undergo?
A.
Stealth-guided craniotomy, 10 and a half hours. Seven days in ICU, 5 days in step-down unit because of paralysis from neck down. Six weeks in rehabilitation hospital (able to take 30 steps by now with walker). Developed DVTS. Put on blood thinners (shots in the stomach), also contracted staph infection in craniotomy incision site. Sent back to hospital; surgery was performed to wash skull bone staph infection was in. Vitamin K to reverse blood thinners before surgery then sent home with PICC Line IV antibiotics.
The infection wasn’t clearing up so I had a second surgery to wash skull bone of craniotomy (bone flap) done three weeks later. I was sent home with IV antibiotics. Then I developed a cerebral spinal fluid leak and infection. It still wasn’t clearing up and also developed second yeast infection. I was sent back to the hospital for removal of bone flap and to repair CSF leak. Lumbar Drain and IV antibiotics. Sent home with PICC Line again for another 6 weeks of Vancomiacine IV antibiotic treatment with a home nurse. Home physical rehabilitation for 10 weeks, then 6 months of facility physical rehab.

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
How hard it was on my family. Also the seizures, headaches and walking with a cane have been very difficult for a person my age.

Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I am currently seeing a neurologist. I had gamma knife done April 6th of this year on residual tumor that had grown to almost its original size and will be having the next gamma knife treatment (the meningioma tumor was too large to do all at one time) in October or November of this year. I am on disability and can no longer work. I have bad headaches daily and need medication for them. I also have leg and back pain, which the doctors are calling neuropathy. I still have lower extremity weakness and walk with a cane and lose my balance often. I also have a seizure disorder and take AEDs.

Q. Who were your caregivers and how did you interact with them?
A.
My husband was my sole caregiver and our relationship suffered greatly from it. After three years we are just now mending our relationship. My husband and two children all suffered more than I did through this entire ordeal.

Q. How was your life changed by this experience?
A.
My career was taken away. I used to be in accounting. I can hardly add two and two anymore. I was the main bread winner with benefits and my husband was a stay-at-home Dad and did construction contracting. We have had to entirely change our dynamic and he had to entirely change careers. I can’t spell anymore either.
My children have both been in therapy. My daughter went through a terrible depression and is just now back to her happy 12-year-old happy self. We have a FOR SALE sign in front of our house as I am writing this. We went through a bankruptcy last year and we had to go on food stamps for a while. We had never needed any help from anybody before and had a very comfortable life. Now we have to sell our beautiful home and move to a place we can afford. But I wouldn’t change a thing.
I have learned so much and met so many wonderful people and have gotten to know my family and my second family and who my friends really are and what is really important in life. I have learned that Meningioma Mommas is a very important part of my life now and keeps me sane. That the research is even more important because my children are most important and I would never want them to go through this.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
Stay strong; keep your sense of humor, and most of all LOG ON TO www.meningiomamommas.org

Q. Knowing what you know now, what would you have done differently, if anything?
A.
Made the neurosurgeon take the bone flap out the first time instead of the third and changed doctors sooner when the one I had kept insisting for 6 years that I had sinusitis and ear infection and vertigo.

Q. How would you assess your quality of life today?
A.
Better than ever!!!! It just includes a cane and lots of doctors and pills.

Janet Ledford

Patient

Janet Ledford
Patient
Fort Smith, AR

Q. How was your meningioma discovered?
A.
My husband and I noticed the protruding of my right eye. I went to my internist who referred me to my ophthalmologist. He immediately recognized that I needed a neurologist.

Q. How did you source your doctor?
A.
I called my aunt, who is a professor at UAMS (University of Arkansas Medical Sciences), and she took control. I had the MRI there and met with her good friend who is a neurosurgeon. He was surprised I had not had more problems as it was very large (almost 20 cm). The sphenoid wing meningioma had spread throughout the skull and encased the optic chiasm. Dr. Ossama Al-Mefty was about to join the staff at UAMS so we waited the few months until he arrived. Dr. Al-Mefty was presented to me as “the man who wrote the book on skull-based tumors,” so I knew I was to wait.

Q. What course of treatment did you undergo?
A.
First craniotomy – (from front of one ear over to the top of other ear), fall of 1993 (15-hour surgery).
Second craniotomy – (same as above), spring of 1999 (four-hour surgery).
Gamma Knife Radiation – spring of 2001

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
I think waiting for the surgery was the most difficult part. I decided to try and get myself in better shape so I swam every day with a neighbor friend. It kept both my body and mind active. The fear of the unknown is always difficult.

Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I am having annual MRIs. The recurrent tumor is still there but the GK has done its job. While the tumor is not shrinking, it is not growing. I see a neuro-ophthalmologist on a regular basis as well. Having one eye has its own problems, like depth perception, etc – but it hasn’t slowed me. Headaches are always an issue and there’s probably not an hour of the day that goes by that I don’t have one but I continue to carry on and work at least 40 hours a week. I had a neurosurgeon who told me I would need to go back to work at 110% because employers look at people differently who have had brain surgery. I think I have done that – to a fault. Memory loss from GK is also an issue and I was warned that it was something I would have to deal with. It is usually word searching, and sometimes confusion, that I struggle with if I am extremely tired.

Q. Who were your caregivers and how did you interact with them?
A.
My husband and family were my caregivers. I had my surgery about 2.5 hours from home. I went to aunt’s home for several weeks to recover. My husband is a jewel when it comes to my care and my mother is an absolute saint! She left her home in Texas to come to my aunt’s to take care of my every need. My husband, kids, mom, sisters and aunt anticipated my every need. My sisters were my moral support and remain that to this very day! My aunt is in neurological research at UAMS so if there were ever any questions she just called my neurosurgeon who lived down her street! How lucky was I?!

Q. How was your life changed by this experience?
A.
I have learned about the fragility of life and was reminded of the importance of family and friends. I look at things with a whole new respect and realize how blessed I am to still be here. I also appreciate eyesight (the one I have remaining!).

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
My advice is to seek the BEST physician available – not the most convenient. That is the most important thing. If someone is to be on Watch & Wait, then stay busy! Don’t ‘use’ your brain tumor to avoid work or elicit sympathy. You only have one life so grab the gusto, grab your friends, and kiss the stars.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
In my case, I don’t think I could have (or would have) done anything differently. I feel I had the best medical care and followed their instructions to the best of my ability. I also feel I have tried to meet the personal goals I set out before me for recovery.

Q. How would you assess your quality of life today?
A.
Quality of life isn’t always about what cards you are dealt – but it’s about how you play them. Although I may just have a full house draw, I’m going to play it like a royal flush.

Joel Kreuziger

Patient

Joel Kreuziger
Patient
Clyman, WI

Q. How was your meningioma discovered?
A.
It was December 2001, I was watching a football game on TV and I went to the refrigerator to get something to eat. Then, just like that, I woke up riding in an ambulance. I quickly found out that I had had a seizure. My mom, dad, and brother witnessed it and called 911. I was kept in the hospital overnight and the next day I had an MRI. To my absolute surprise I was told I had a brain tumor, which I later found out was a grapefruit sized, benign meningioma in my frontal lobe. Other than the seizure, I never had any warning signs like headaches or anything else that now looking back, I would have expected to have had.

Q. How did you source your doctor?
A.
In my particular situation, the doctor that discovered my tumor immediately referred me to a neurosurgeon following the results of my MRI. I was 14 at the time so I really didn’t know the significance of what was all happening. At the time I just went along with whatever my parents and the doctors were saying. I am lucky that I have really good parents.

Q. What course of treatment did you undergo?
A.
I had a nine-hour surgery to remove the tumor just five days after the seizure on December 7th, 2001. I am blessed that I had the surgeon I did; he has to be one of the best surgeons out there. For surgery I am pretty sure I came in on a Thursday, had surgery on a Friday, and was sent home on a Sunday night. At the time I was 14 and in eighth grade. I only missed eight days of school because it happened near Christmas break; less than a month after surgery I was back in school. My classmates made posters and cards for me while I was gone and gave me a warm welcome back. I was also in basketball at the time and the whole team signed a basketball that they gave to me. I remember at the time, not understanding why I wasn’t allowed to play basketball during the week I was going to have surgery, which sounds pretty silly now.

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
The hardest thing for me throughout the whole process was being on Dilantin the nine months that followed my surgery. This anti-seizure medicine took a lot of energy out of me. Each month that the dose was decreased, my energy levels increased. Thankfully, I only had to take this medicine for the first nine months and ever since then I have not been on any medication related to the brain tumor.

Q. What kind of care routine are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I pretty much live a normal life. The surgery affected my short term memory, which is still something I battle with. I have found ways to overcome it though, so I really can’t complain. I just write things down to I make sure I remember them, but I really should have been doing that before the surgery. So yeah, it forced me to do stuff I should have been doing anyhow. Most people tell me that if I hadn’t told them about my surgery they would have never guessed it.

Q. Who were your caregivers and how did you interact with them?
A.
My main caregivers were my parents. They did the most for me. They always made sure to pick up my medicine, took me to my checkups and helped me whenever I struggled with something. Also, my brother and sister helped whenever I needed it. I was always in stable enough condition that I really didn’t have to have anyone look over me all the time. My friends, coaches and teachers were always there for me too.

Q. How was your life changed by this experience?
A.
The surgery was definitely a life-changing event. Because at the time I was only 14 years old and still in eighth grade I had no idea of the seriousness of what I had. Now, the craziest thing looking back is that the day of the surgery I never once worried about the surgery or coming out of it all right. My friends, family, and teachers were worried but I, the person who was going through it, really wasn’t too worried. I would get more nervous before taking a test in a class than I did before having surgery. I now believe it was because I was so young and the fact that all these people must have prayed for me. As silly as it sounds now, the only thing that I cared about going into and coming out of surgery was being able to play tackle football my freshman year. Everything I did in my seventh and eighth grade years was geared towards being successful in football. Football was my life and now, reluctantly and with the advice of my parents and my surgeon, I chose not to go out for football. At the time that was so hard to swallow. As much as I wanted to go out I realized that I owed so much of my life to my surgeon and parents that I had better listen to them. Having to give up football made me realize that sports aren’t everything.

Before the surgery school came really easy to me. I was pretty much always the first or second one done with tests and following surgery school didn’t come nearly as easy to me. The first few years after my surgery I was usually one of the last to finish tests and I struggled with homework. It took me until my junior year to realize I had pretty much given up all of my social life, nearly given up sports and wasn’t getting enough sleep to maintain a rigorous class schedule. After switching to a schedule I could handle things have gone much better, now I am towards the middle of the class.

I also struggled initially with sports after surgery and nearly gave up on them. I played basketball my freshman year and really struggled with it to the point that I almost gave up. I just wasn’t the same; I struggled to keep up with the game but the bigger problem was I wasn’t very motivated. I had always been super motivated towards athletics but that season of basketball I just started to feel like sports really weren’t all that important and that I should focus more on academics. I didn’t even go out for a spring sport my freshman year because at the time I didn’t want anything to do with sports. Thankfully, I went back out for cross-country my sophomore year and stuck with both cross-country and track throughout the rest of high school even though there were definitely times when I wondered if I would ever be any good at sports again. Before I knew I had a brain tumor I treated sports as if they were everything and that’s not a good thing to do. Having the tumor and not being able to go out for football worked out to be the best thing that ever happened to me as far as sports. I ended up going out for basketball my freshman year, cross-country all four years and track for three years. In track I ended up being part of a 4×400 relay team that went to state both my junior and senior years. After getting to state my junior year I shifted all my focus into getting back to state the following year and I had finally gained back that fire for athletics which I had before my surgery. As a senior I finished first team, all-conference in cross-country. Then, in track I anchored the 4×400 and the 4×800 relays. With the 4×400 relay we earned a spot on the podium and took home the final medal at state by finishing as the sixth best division 3 team in the state. To get back to state as a senior I had to do it with an injury. Right before our conference meet I developed a stress fracture in my left foot. At one point it got so bad that I could barely walk. This injury gave me even more motivation to get back to state. Two eventful weeks later we did make it back to state. Amazingly our last five races of the year we ran faster than the previous race in each of them. These were also our five fastest times of the year. After the season, the injury took three months to heal up but it was definitely worth it. I am really fortunate that I had such good coaches and teammates in both cross-country and track. I wasn’t good enough to get to state by myself so I can’t thank the guys that ran with me enough for all they have done for me.

Also, in a vote by all the high school students, staff, and coaches, I received the male senior athlete of the year award. This was special to me considering that usually a football player receives it and the fact that so many people had that much respect for me. Surprisingly, since graduating, my cross-country coach renamed the Award to Dedication after me. It’s definitely an odd feeling having an award named after myself. In a way I feel honored by it, but also think that I probably don’t deserve to have an award named after me.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
My advice to those trying to recover is be willing to accept other people’s help instead of trying to take on more than you can handle – which is what I did. There is no reason to be ashamed of getting help because we’re stronger if we work together as a team rather than trying to do everything as an individual. Another important thing I would advise someone who is having brain tumor surgery is to realize that you will not be exactly the same person. You cannot possibly go through something that major and have the same exact mindset afterwards. Following surgery you start appreciating things more and many things that previously seemed important to you will start becoming less important. Also, it’s good to realize that it’s a long battle through recovery. It’s important to make sure not to rush back into things, give yourself time to heal and be willing to accept support from others. I would also advise someone just diagnosed to find a support group so they can talk to other people that can relate to them.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
One thing I would do differently is to actually have done research on meningioma. Until six months ago I had barely done any research on what I had. I think that helped me in the fact that I never dwelled on having a tumor and never felt sorry for myself. The only thing is that I experienced problems which were related to my tumor and caused me to get really upset at myself. For instance, about three years after my surgery I finally admitted I couldn’t keep up with the academic schedule I was taking. I told my parents my short term memory just wasn’t very good. Up until then I would get so upset at myself thinking I wasn’t studying enough even though I was studying so much that I had no life outside of school. I then had my parents set up memory tests for me at the University of Wisconsin Hospital in Madison, where my surgery took place. The tests confirmed I was right and told me the short term memory deficit was a result of the location of my tumor. I had been so hard on myself those three years over something that I didn’t even realize wasn’t my fault. Had I just bothered doing some research on what I had I wouldn’t have been so surprised that my short term memory was affected. I think a lot of that was because I was so young. I also thought I would be back to normal right away and I found out that it’s a long road to recovery. It’s a life-long battle and also is not something that you can just decide to forget about. The main problem was that I put so much pressure on myself to return to the old me and living life the way I had been. So basically if I were to do it again I wouldn’t have been so hard on myself and I would have learned to relax earlier than I did.

All you can do is live and learn. Some of that was just part of going through my teen years. Everybody has to learn a lot of hard lessons through the high school/teen years so sometimes it’s hard for me to distinguish if some of these personal battles and struggles were because of the tumor or just going through the teen years.

Q. How would you assess your quality of life today?
A.
Life has been really good for me. I can’t complain. I am not entirely sure what I want to be yet but I do know I want to be able to help other people. Right now I am working on getting more involved with helping other brain tumor survivors. I go in for a check up once a year and I have not had any reoccurrences in over five and half years. Other than some short-term memory problems I have had as normal a life as I could have ever expected. I definitely have more understanding towards anybody that has any type of major health problem. This tumor probably kept me from getting into drinking and partying. I have a great appreciation for things that I wouldn’t have otherwise had. I always went to church before having this tumor but didn’t really believe in god to the extent that I do now.

Kelly Greer

Patient

Kelly Greer
Patient

Q. How was your meningioma discovered?
A.
I went to the ER after getting “lost” in Target after having experienced the worst headache of my life the day before when visiting my grandmother at the hospital. Hospitalized for possible TIA, etc. CT scan – nothing. MRI showed 2cm meningioma in posterior fossa. Hospital doctor said “I doubt that they will find anything” with a smirk – like I’m nuts or something, only to have to come back two days later and say “I’m sorry, but you have a brain tumor”… Thanks for the compassion!

Q. How did you source your doctor?
A.
The staff neurologist at the hospital I went to referred me to my surgeon.

Q. What course of treatment did you undergo?
A.
W&W at first, then craniotomy after suffering continuing symptoms and finding Liz at Meningioma Mommas and listening to her input…Thank God for Liz!

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
It was shocking to discover my deficits or limitations and to begin to adjust to them. I am still adjusting over three years out from surgery. The other hard thing has been the lack of understanding and compassion in the medical community. Side effects of drugs. Misdiagnoses due to misunderstanding of the disease.

Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I have given up on getting any real help from the medical community. It seems that they have nothing to offer me. The last neurologist I saw (4th one) walked out of his office when I started crying. So, I am in counseling and finally started anti-depressants. This seems to help me cope and get along with others better.

Q. Who were your caregivers and how did you interact with them?
A.
My husband and my daughters were my caregivers. They have been such a blessing. So patient, kind, understanding. Even though there are many, many times when I have been unreasonable, irrational, misunderstanding, etc. They have gone through so much with me and I am just so thankful that they have not given up on me. I am really blessed by them.

Q. How was your life changed by this experience?
A.
I went from raising a family of five kids, working full time, earning over $100,000 a year, living a very busy life to now being on disability, spending the majority of my day in my room where it is quiet. This has rocked my entire life. I feel as though I have started over with almost everything. I went from independent, self-motivated, self-directed, sharp as a tack, full of energy, little dynamo to dependent, slow, unable to understand a lot, not able to do a lot on my own, not driving anywhere far, grocery shopping once a month in a quiet little store where I can see all four walls, stuff like that.

My schedule is sparse, and I only have one child left at home. I’m unable to babysit my grandkids alone. I burn things and have to use timers when I do anything. I have started fires when cooking, all sorts of crazy things. Thank God my family has a sense of humor.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
Seek the best medical team you can find. Get a baseline neuropsych test. Find a rehab facility. Get into counseling. Find a great support group like Meningioma Mommas. And learn to take it ONE DAY AT A TIME.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
I would have sought a great medical team and stayed in counseling throughout the entire process. I took this entire brain tumor thing way too lightly and did not even have a clue as to what I would be experiencing after surgery.

Q. How would you assess your quality of life today?
A.
My whole life has changed. Plans are something of the past. I never know what I can do until the moment comes. EVERYTHING is harder (physically and mentally) and some things are not only impractical for me to attempt, but impossible for me to accomplish. I have had to learn to deal with my limits. Accept them. Pace myself. And count my blessings of which there are many. There is something to be said for a simpler life, a slower pace. And I do feel very blessed to be experiencing this slower, more simpler way of living. I just wish I was better understood by the rest of the world.

Lindy Klarenbeek

Patient, Executive Director, Meningioma Mommas

Q. How did you become a caregiver?
A.
My elderly aunt was diagnosed with seven meningiomas.

Q. Did you have any training? From what source?
A.
No. I’m not sure any type of training could have prepared me. I learned as I went.

Q. What resources (or lack of resources) helped or hindered you / your patient?
A.
There were limited resources for both myself and my aunt and most of the information I found on the Internet was scary and demoralizing. Luckily I joined Meningioma Mommas, an online support group, and that helped us both enormously. The members educated me on what to expect during my aunt’s surgery and recovery as well as provided hope to her that she could survive and return to a normal life.

Q. What are some challenges you faced?
A.
Ignorance of what it meant for someone to have a brain tumor, getting straight answers from the medical profession, juggling my own family’s needs with that of my aunt’s, trying to provide hope on the bad days and battling exhaustion.

Q. How did you interact with your patient?
A.
By never telling my aunt how she should or should not be feeling and, while trying to be as positive as possible, avoided telling her that everything would be OK as no one can guarantee that. I was realistic and honest and that served us both well.

Q. What was the most difficult part to being a caregiver?
A.
Putting my life on hold and not knowing when things would return to normal. Dealing with brain surgery recovery has its own inherent challenges unlike those patients recovering from other types of surgeries.

Q. How was your life changed by this experience?
A.
It enriched my relationship with my aunt and made me much more compassionate and understanding of all that those suffering with a meningioma go through. As a result I now volunteer for the very organization, Meningioma Mommas, that helped us when my aunt was first diagnosed.

Q. Do you have any advice for people who are about to take on this role?
A.
Try and get as much help as possible, have time off and be prepared for the bad days. Have a family meeting upfront and if you can, delegate specific caretaking duties.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
As well as the physical care of my aunt, I was also the contact for anyone wanting to know how she was doing. At the end of the day, it was exhausting to have to call and email everyone with updates. Nominate one person to do that for you.

Q. What helped you the most during your caregiving role?
A.
Knowing when to have a time-out and to not feel guilty.

Liz Holzemer

Patient, Founder of Meningioma Mommas

Q. How was your meningioma discovered?
A.
My meningioma was discovered after a frustrating journey of trying to find an explanation for my alarming health symptoms and infertility. Ultimately, it was my persistence and gut feeling that something was wrong that convinced doctors I was right, which saved my life.

Q. How did you source your doctor?
A.
In my particular situation, I was immediately referred to a neurosurgeon the next day after my MRI the night previous. Had I had time, I would have definitely sought out a second opinion, which I recommend to anyone.

Q. What course of treatment did you undergo?
A.
I underwent a 12-hour surgery (my only option because of my tumor’s massive size) and four months later, had a second surgery to remove excess CSF (cerebral spinal fluid).

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
The not being told what to expect afterwards. I would have preferred to know the “what ifs” up front, especially the possibility of having seizures again, which happened. Also, that recovery is a life-long process. I wasn’t given any resources at the time of my diagnosis and had to seek them out on my own.

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 have yearly MRIs and am under the care of a neurosurgeon and neurologist. After six years post-op, I still combat daily fatigue and facial paralysis, as well as requiring an AED regimen.

Q. Who were your caregivers and how did you interact with them?
A.
Primarily my husband, family and close friends who had a rotating schedule to look after me. As this was new territory for all of us, it was rife with frustrations and challenges. Definitely a learning process!

Q. How was your life changed by this experience?
A.
In many dramatic ways. I quickly learned how little is known about meningioma and being a survivor has led me to use my writing abilities and find another life purpose — to heighten meningioma awareness and raise critical funding with the goal of one day finding a cure. I live day to day and am a more relaxed person now! Embrace life — have no regrets is my mantra.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
Seek out a second, third, or even more opinions. Join a support group, which can guide you during all aspects of your brain tumor journey. Anticipate the not so great days — it does and will get better.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
I wouldn’t have placed as much pressure on myself to return to the old me and my life the way I knew it. I would have vocalized my deepest fears and concerns earlier too, rather than suffer in silence.

Q. How would you assess your quality of life today?
A.
Overall, I can’t complain. I’ve been blessed with two wonderful children and I know my limits now.

Nancy Conn-Levin

Patient

Nancy Conn-Levin
Patient
Ocean, NJ

Q. How was your meningioma discovered?
A.
My meningioma was discovered during diagnostic testing, which was suggested following visual changes I experienced from the tumor. The MRI scan included in that group of tests clearly showed the meningioma. The visual changes developed gradually and I was unaware that they might have indicated the presence of a brain tumor. Receiving that unexpected diagnosis was a memorable surprise.

My meningioma was discovered during diagnostic testing, which was suggested following visual changes I experienced from the tumor. The MRI scan included in that group of tests clearly showed the meningioma. The visual changes developed gradually and I was unaware that they might have indicated the presence of a brain tumor. Receiving that unexpected diagnosis was a memorable surprise.

Q. How did you source your doctor?
A.
Presumably, this question refers to the neurosurgeon who operated on me. I found him through a family member, who was part of the teaching faculty at a major metropolitan medical center with a large brain tumor program. My ophthalmologist was the first person who suspected the meningioma, and he sent me to a neuro-ophthalmologist who arranged for the MRI.

Q. What course of treatment did you undergo?
A.
I had a craniotomy and cranioplasty, with surgical excision of the meningioma.

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
At the time of my meningioma diagnosis and treatment (almost eleven years ago), I was unable to find local support or information about meningiomas that would help me make choices about how to proceed. That isolation and lack of a sense of community was the reason I chose to focus my career as a health educator toward working with others affected by brain tumors. It also led to my creating an online support group (The Meningioma List), which was started in 1999. The group continues to thrive more than six years later. I also co-founded a local brain tumor support group in 2003, which I still facilitate. That group provides services to patients, long time survivors and family members of those with any type of brain tumor.

Q. What kind of care routine are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I have follow up MRI scans at least once a year (more often when symptoms occur and/or any changes appear in the scans). There are relatively minor side effects that cause me to make adaptations in my life. However, these are not apparent to most of the people who know me. Most of all, I feel incredibly blessed to be able to do the work I do and help so many other people affected by all types of brain tumors.

Q. Who were your caregivers and how did you interact with them?
A.
My husband was my primary caregiver after surgery and continues to be a source of all types of support. At the time of my brain surgery, our daughter was 17 and living at home with us. She was also very helpful, particularly before I was able to begin driving independently again. Although our daughter has her own home now, she is still very caring and supportive.

Q. How was your life changed by this experience?
A.
Perhaps the most significant change in my life was the loss of my identity as a “healthy” person who had not encountered a serious illness. I had always had a positive attitude about life, but found myself becoming even more appreciative and aware of everyday blessings after recovering from brain surgery. While I do experience more fatigue and other “invisible” changes, my awareness of how much worse this situation could have been keeps me feeling very fortunate every day. Particularly after meeting literally hundreds of others who have had meningiomas (some of whom have since passed on from their tumors), I recognize that there is a lot of uncertainty related to how any individual is affected by this diagnosis.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
The most important advice would be to learn as much as possible about meningioma issues, and get at least one “second opinion” about treatment options. Each person’s situation is unique and there are many choices about where, how, and with whom to find the best treatment for that individual. Thankfully, the Brain Science Foundation has comprehensive educational materials on its website, which make this process so much easier than it was at the time of my diagnosis. Experiencing the need for that type of information was the primary reason I wanted to create those materials!

Q. Knowing what you know now, what would you have done differently, if anything?
A.
Like many people, I thought it would be best to have treatment relatively close to home (within 90 minutes) so it would be convenient for my family. If I ever need to have brain tumor treatment again in the future, I would be more likely to find the best specialist and travel to the brain tumor center where that person was affiliated. Also, at the time of my surgery, I was unaware of the importance of having a neuropsychological evaluation, especially prior to surgery. If that had been done, it would have been easier to document the changes I experienced and develop a rehabilitation strategy. Although I did undergo this testing many years after my surgery, by that time I had already developed personal coping strategies for most of the deficits. It would have been much easier and more efficient to be able to take advantage of professional help with this, rather than figuring things out myself over a long period of time.

Q. How would you assess your quality of life today?
A.
My quality of life is excellent! I look forward to continuing to be a proactive meningioma survivor who is able to help other people in a variety of ways. As a health educator, author of health education materials, and support group facilitator, I feel very fortunate that my personal experiences can be useful as a means to offer information, support and encouragement to people all over the world who are affected by various types of brain tumors.

Nancy Waring

Patient

Nancy Waring, PhD
Patient

Q. How was your meningioma discovered?
A.
At a friend’s insistence, I went to see my primary care doctor about a large hard bump in the middle of my forehead. She ordered X-rays. The radiologist’s diagnosis was hyperostosis, a thickening of the bone that is not uncommon in middle-aged women. My doctor suggested that I might want to have the bump shaved down at some point for cosmetic reasons, but that it wasn’t a cause for concern. She mentioned that she would have the neuroradiologist double check the X-rays, since she herself didn’t know much about hyperostosis. I went home largely reassured that I didn’t have anything to worry about. I had just walked in the front door when my doctor called to tell me that the I needed to return to the hospital for a CT scan to rule out the possibility that there was an underlying problem. After the scan, she brought me into her private office and told me that the CT scan showed two lesions on my brain. After an MRI the following morning, we knew the lesions were meningiomas.

The next day, I saw the the neurosurgeon, who pointed out the two tumors on the MRI – an asymptomatic smaller tumor at the crown of my head, which did not require immediate attention and a larger tumor crushing the prefrontal cortical region of my brain. The reason for the bump on my head was not the tumor itself but tumor cells interacting with the bone, causing a bony overgrowth. Surgery for the larger tumor was urgent to determine its aggressiveness. I was scheduled for a craniectomy 10 days after diagnosis. In addition, because of the tumor cells in my forehead bone, I would need to have my forehead bone removed and replaced with a prosthetic forehead. The neurosurgeon asked me to decide on the spot whether I wanted flat titanium, contoured titanium, or acrylic. I was blown away.

Q. How did you source your doctor?
A.
My primary care physician recommended my neurosurgeon, who happened to be at the same hospital where my dad had been an internist on staff for over 40 years. My many relationships at that hospital helped me though the whole experience.

Q. What course of treatment did you undergo?
A.
I had a large craniectomy and tumor resection that took 10 hours. My neurosurgeon was able to fully resect the tumor. Then she created a prosthetic forehead composed of contoured titanium covered with acrylic cement. I’ve had follow-up MRIs every six months since the surgery. About a year ago, the back tumor appeared to have grown slightly. By March 2006, it was clear that intervention was required. Surgery would have been dicey, as the tumor is entangled with a large draining vein and is also in the motor region. For these reasons, a complete resection of the tumor would not have been possible. It was determined that a six-week course of photon beam radiation was the best option. I had that treatment in April and May of 2006. There is about 95% likelihood that the radiation will stop the tumor from growing. I will find out in May 2007 when I have my next MRI. I am more fortunate that some meningioma survivors because my tumors are neither malignant nor aggressive. Moreover, I have come though this experience without mental or physical deficits.

Q. What was the most difficult part of going through diagnosis, treatment, and recovery?
A.
Hearing those five dreaded words, “You have a brain tumor.” Feeling bludgeoned, although that was certainly not my doctor’s intention – she was very gentle – with the possibility that I could die.

My first appointment with the neurosurgeon was hugely difficult to say the least. I was trying to take in what she was saying and ask useful questions – not easy when I was hearing that “we had to move fast” because the situation was dire and that I was going to lose my forehead. Being in the hospital was very difficult. I was extremely agitated from the steroids used to prevent swelling in the brain. I had hallucinations and panic attacks, which steroids can cause. Another big terror in the early phase of my recovery was discovering that I could not understand the material I needed to read in order to write two conference papers I was to present in the fall. There was no question that I was cognitively compromised, and I was terrified that the deficit would be permanent.

When I went back to work in the fall at the university where I teach, I had a very difficult time with sensory overload. I was very light sensitive and had to wear sunglasses all of the time. Noise bothered me, and I found being surrounded by so much activity quite confusing. In addition, I felt invisible, as if no one understood what I was going through. I also experienced a lot of anxiety around disclosure. I did not want to be thought incompetent, but at the same time, I was just barely hanging on by a thread at work. Then in late fall after my surgery, I became quite depressed.

Q. What kind of care routine are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I have my next MRI in May 2007. In terms of routine care, I try to exercise and eat a low-fat low-carb diet and take an Omega-3 supplement that contains a high percentage of DHA, an Omega 3 that purportedly supports brain tissue. I also consider my long-term meditation practice central to my self-care. I have a couple of bald patches near the top and on the sides of my head, where the radiation entered; they don’t show very much because other hair covers them. I can feel some fuzzy new growth coming in.

I suppose fear is more of an effect than a side effect. I experience intense fear from time to time. Sometimes something triggers a memory of a particularly difficult part of the experience, and I feel as if it were happening in the present. Sometimes I fear what may happen in the future. I have experienced fatigue ever since surgery in July 2003. The fatigue was exacerbated by the radiation therapy, but now I am back to my baseline level of fatigue.

Q. Who were your caregivers and how did you interact with them?
A.
My principal caregiver was my neurosurgeon. Of course, my primary care doctor was extremely important, and had she not made the decision to have a neuroradiologist look at my films, the situation would have been even more catastrophic. Of course, the radiation oncologist was also important. With all of my caregivers, I interacted completely candidly. I did not try to keep my terror under wraps and asked a lot of questions. I wanted to be as informed as possible so that I could make the best decisions. I had terrific support from dear friends who accompanied me to each of my appointments. As dreadful as the situation was, I was fully confident that I was in excellent hands.

I am a medical journalist and about nine months after my surgery, I decided to write a book about my experience and that of other meningioma survivors. I interviewed every member of my care team as well as other meningioma survivors and people fighting extremely aggressive tumors such as glioblastomas. All of these individuals have been a great source of inspiration to me, and I consider them important members of my care team.

Q. How was your life changed by this experience?
A.
I feel grateful for every moment and the possibility that every moment holds. As weird as this may sound, I am not entirely sorry that I got a brain tumor. It’s a drag that I still have one and I might have a recurrence of the big tumor, or get another, but the experience continues to be enriching in many more ways. I feel a fundamental connection with people and the natural world that I believe has been somehow enhanced through the meningioma experience. I went through this with a few people who are very dear to me. The deepening of love and connection that develops when you go through something like this with a loved one is quite amazing.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
Draw upon all of the resources you have to get hooked up with the best experts you can find. Turn to someone close to you and have that person help you formulate questions to ask each health care provider you encounter. Take someone to your appointments and have that person take notes. It is impossible for most of us to take in the stunning information that begins with those five extraordinary words, “You have a brain tumor.” Seek out what nourishes you. Be kind to yourself and know that it may take many months to really get back on your feet. Finally, I would say that a diagnosis of this magnitude can be an opportunity to assess what really matters, and it is possible for such a catastrophic event to become an opportunity for growth and transformation.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
In terms of my treatment team and the choices of treatment I underwent, I don’t think there is anything I would have done differently.

Q. How would you access your quality of life today?
A.
The quality of my life is good, exciting, creative – better than ever.

Peggy Flannigan

Patient

Peggy Flannigan
Patient
Tremont, IL

Q. How was your meningioma discovered?
A.
I was always a busy person. I had been working toward my Ph.D. for several years and the end was in sight! But there was just so much going on. About five months prior to my diagnosis, I had flown to Florida for a wedding. Being a university professor, I had taken papers to grade. I noticed that my penmanship was awful, but blamed it on having no desk to use. After the trip, I was occasionally “losing” a word I needed in conversation. I remembered the word in a moment or so, but this problem continued to worsen. I started losing phrases and found myself planning what I would say so that I would have a substitute word or phrase ready or sometimes, I just kept quiet. My family really noticed that! I had always been “involved” and my personality was definitely changing. I no longer seemed interested in activities; I was tired all the time and had to force myself to “act” interested in activities so no one would notice I wasn’t fully participating. I became extremely emotional and would get teary over commercials! My family insisted something was wrong with me and nagged until I agreed to see our family physician.

Q. How did you source your doctor?
A.
From our discussion, my family physician recognized there was a neurological problem, though my neuro exam was apparently normal. He ordered an MRI the following day. When the MRI was completed, he was waiting and called me into the “viewing” room to show me the scan. He pointed out a large tumor in the left frontal lobe and said he wanted me to see a neurosurgeon the next day. I had a lot of edema, so was started on steroids immediately.

Q. What course of treatment did you undergo?
A.
Four days after my appointment with the neurosurgeon, I had a total resection of an 8 cm atypical meningioma. While still in the hospital, my neurosurgeon informed me that he had also diagnosed an additional 1.5 cm parasagittal meningioma that he had not removed. Apparently, it adhered to the sagittal sinus and resection would be too risky. He explained that if it needed treatment in the future, we should consider Gamma Knife. He planned to monitor me closely anyway as my resected tumor was atypical. Atypical tumors have a higher rate of recurrence than typical tumors.

I developed a post-op infection and had to have three additional surgeries over the next few months. The first was about 7 weeks after my first craniectomy and it was to remove the bone flap. I remained on IV antibiotics for about 7 weeks. During that time, I had a third surgery to revise my incision. Three months after the antibiotic therapy ended, I had a fourth surgery to replace the bone flap.

Q. What was the most difficult part of going through diagnosis, treatment and recovery?
A.
For me, the initial uncertainty was very difficult. I was trying to explain to my family something I didn’t understand, yet being the nursing professor, I had always been the one to provide the medical explanations. Later, it was difficult to trust myself to recognize “normals” and “abnormals” when I knew that I had previously ignored such serious symptoms. That was especially true when the infection was developing. I was fairly certain that something was not quite right, but allowed myself to briefly believe that I had just reached a recovery plateau.

These days, the difficulty lies in the period just before my six-month interval between scans ends. I’m always ready to get the next scan over with! Watching and waiting for the next stable report never becomes routine.

Q. What kind of follow-up care are you currently pursuing? Do you still experience any side effects from diagnosis or treatment?
A.
I currently get MRI scans every six months. About 1 year after my initial diagnosis, I was diagnosed with a third meningioma that lies in the high right parietal region. It is only 8 mm and has not changed since the initial diagnosis. That is another reason that watching and waiting is never “routine” for me. I feel like my life has gone on, but I never want to take it for granted.

I am also on seizure medication for precautionary measures. Though my extended EEG could not definitively rule out seizures, it did show some abnormal waves. For the present time (perhaps forever!) I’m taking zonegran 300 mg. I may actually have simple partial seizures as they seem not to happen on this dose. I feel very fortunate not to have any other side effects from my initial diagnosis or treatment.

Q. Who were your caregivers and how did you interact with them?
A.
My son and daughter were both grown and married when I was diagnosed. They were each able to spend time with me when my husband was at work. My son actually washed my hair for me! I was also fortunate to have meals brought in by friends, family, and members of my church after each surgery. It was hard, at times, to allow myself, the caregiver, to become the one being cared for. But when fatigue set in, I was grateful for the extra help.

Q. How was your life changed by this experience?
A.
I’m more appreciative of every day things. I enjoy just doing nothing sometimes and I don’t feel it’s time wasted. I have become an advocate for brain tumor awareness through Meningioma Mommas and in my local community. I believe I have become more spiritual as a result of my experience and though I don’t want to die, I am much less fearful of death than I was before I had a brain tumor. I appreciate friends and family every day.

Q. Do you have any advice for people who are at the beginning of this personal journey?
A.
Reach out to others who have already taken this journey. No matter how much you love your family or they love you, unless they have had a brain tumor diagnosis, they cannot truly understand what you are feeling like someone can who has been there. Though each person’s experience may be different, we who have lived the experience can each help another person navigate this strange journey. Look for a local support group or an online group such as Meningioma Mommas (Men are welcome, too!). I remember for the first several months asking my neurosurgeon’s office if there was a support group and being put off. Finally I found MM. Later, I was able to become part of a local group as well. Both have been important in so many different ways to my well-being. Both groups have lost dear members, but if we don’t open ourselves up to others on this “journey”, we miss out on so much that we may never know of.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
I can’t say I would have done anything different except that I wish I would have sought treatment sooner in order to spare my family the terrible summer they must have had with me when I was in denial. Other than that, I can’t live with regrets. I couldn’t imagine that I would ever be diagnosed with something as “exotic” as a brain tumor. If so, surely I would have sought medical help sooner. Once I was diagnosed, I’ve been a pro-active member of my own health-care team.

Q. How would you assess your quality of life today?
A.
My quality of life is very good. I did complete my Ph. D. (between surgeries!) and continue to teach nursing at the University. I believe that being on Watch and Wait for my remaining tumors is not much different than knowing I had an atypical tumor that could recur. No matter what, I continue to have scans every six months. I believe that anyone who has had brain surgery is on Watch and Wait for the rest of their life. Hopefully, the other shoe will never drop. If it does, I am well educated on my options, and I have surrounded myself with a strong support system to help me through whatever waits!

Ron Douglas

Caregiver

Cyndi Douglas
Patient
Springfield, MO

Q. How did you become a caregiver?

A. My wife was diagnosed with a meningioma, so after 20 years of marriage, it was time to honor the “in sickness or in health” portion of my marriage vows.

Q. Did you have any training? From what source?
A.
I didn’t have any training, although after Cyndi became acquainted with Meningioma Mommas, I learned a lot through her.

Q. What resources (or lack of resources) helped or hindered you / your patient?
A.
Lack of knowledge about meningiomas definitely hindered both of us. For instance, if we would have realized the benign nature of the tumor, we would have taken more time to research hospitals/doctors/treatments etc. Instead, we did not know one brain tumor from another and we thought we had to act within a few weeks.

Q. What are some challenges you faced?
A.
The biggest challenge was understanding the disease and figuring out what to do. After my wife had surgery, the recovery was long and my life had to change considerably during that time. Thankfully, she recovered fully and my life is back to normal, and we are enjoying each other very much.

Q. How did you interact with your patient?
A.
I just tried to do everything I could to take care of her. She made steady progress and before long we were back to normal.

Q. What was the most difficult part to being a caregiver?
A.
The most difficult part was the first few weeks, when I wasn’t sure to what extent my wife would regain her normal functions. With time it became obvious she would heal and be as good as before, of which I am very thankful.

Q. How was your life changed by this experience?
A.
It gave both of us a greater appreciation for life and for each other. My wife appreciates the dedicated way I took care of her, and I appreciate all the things she does even more than before the surgery. The best part is that my wife is more free spirited and less fearful now, so we enjoy things we never could before.

Q. Do you have any advice for people who are about to take on this role?
A.
Seek all the information you can before you make decisions. The Internet has made information readily accessible, and groups like Meningioma Mommas are an invaluable resource. So don’t panic, get all the facts and first. second and third opinions, and be confident you can beat the disease.

Q. Knowing what you know now, what would you have done differently, if anything?
A.
The main thing we would have done differently was to not panic, seek information that is available and to take our time in making a decision about a hospital and doctors.

Q. What helped you the most during your caregiving role?
A.
We had help from many friends and family, and our faith in God was the cornerstone that got us through the crisis. As powerful as modern medicine and science is, it is no match for divine intervention.

Sandy Kaufman

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.