Author Archives: brainscience

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.

In Memoriam – Barbara Powers – The Brain Science Foundation

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Barbara J. PowersThe Brain Science Foundation is deeply saddened by the loss of Barbara J. Powers, sister of BSF Co-Founder Kathy Haley. Barbara was a tremendous supporter of the Brain Science Foundation since its inception. She was a lovely, cheerful person who brought a lot of smiles and laughter to the world. She will be deeply missed.

Barbara J. Powers, 57, of Southborough died on Sunday, April 7, 2013, at Metro West Medical Center in Framingham after a short illness.

Born in Framingham, she was the daughter of Nancy (DeLucia) Powers of Southborough and the late James J. Powers, who passed away in 1999.

Barbara was a 1973 graduate of Algonquin Regional High School and received her bachelor’s degree in 1977 from the University of Vermont.  For over 28 years she worked for Comdex and retired as the Vice President of Operations. After her retirement she was very active with the Brain Science Foundation of Wellesley, organizing golf tournaments and other fund raising events. Barbara was an avid golfer and Boston sports fan. She enjoyed spending time with her many friends. She especially cherished her time with her niece and two nephews. Barbara was a very kindhearted, fun loving, generous person, who will be greatly missed by all who knew her.

In addition to her mother, she is survived by her sister Kathleen Haley and her husband Steven of Dover and their children, Matthew, Courtney and Christopher Haley; two aunts, Jacquelyn Beale of Meriden, CT; Joan Murphy and her husband Jim of FL and several cousins.

Visiting hours will be held on Thursday, April 11, from 4:30 to 7:30 PM at the Morris Funeral Home, 40 Main Street, (Rte 30) Southborough.

A Mass of resurrection will be held on Friday, April 12, at 10 AM at St. Anne Church, 20 Boston Road (Rte 30), Southborough, followed by a burial at Southborough Rural Cemetery.

Memorial contributions may be sent in her memory to Brain Science Foundation, PO BOX 812701, Wellesley, MA 02482, brainsciencefoundation.org.

To leave words of condolence to the family, please visit morrisfuneralparlor.com

BSF Supporter Publishes Memoir – Proceeds to go to BSF Research

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Longtime BSF supporter, Meningioma patient, and physician, Jaleh Sahandy, MD, has published her memoir. The book, entitled Living with Brain Tumors: the True Story of Courage and Strength While Struggling with One’s Fatality is available on amazon.com and barnesandnoble.com.

Dr. Sahandy has graciously offered to contribute 10% of the proceeds from her book to the BSF to help fund further research. The BSF would like to thank Dr. Sahandy for her generosity!

Click here for more information.

Meningioma Awareness Day

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Meningioma Awareness Day brings together physicians and other health providers, researchers, meningioma patients and their families for mutual learning about the latest research into the causes, detection, and treatment of the disease. The event provides information and strategies for coping with with a meningioma, a tumor that affects 600,000 people in the country.

Some comments from previous events include:

“Thank you BSF! Without you I’d still be fumbling in the dark and scary ‘Rabbit Hole’! Looking forward to the next MAD and all the good folks who will attend.” Patient San Diego, CA

“Thank you all for the sense of hope and not being alone there that you manage to project to me and my wife by your great efforts.” Family Member/ Friend Ellicott City, MD

“Thank you for providing all of this information at one place!” Patient Warren, RI

“I appreciated the way the doctors were able to make such complicated information accessible. Thank you!” Family Member/ Friend Edgartown, MA

“The speakers and their presentations were concise and to the point… which allowed for easier understanding and a wealth of information.” Patient & Survivor Boston, MA

“This was my first time at MAD and I felt I it was a great experience; very informative. I found it especially helpful to speak one on one with the doctors and also other meningioma patients.” Patient Warwick, NY

“Going home, feeling better and more knowledgeable about meningioma and me. Hope to be at the next meeting.” Survivor Boston, MA

“I felt welcomed and empowered.” Patient, Edgartown, MA

Taking Care & Taking Charge – 2015

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Through the generosity of the Daniel E. Ponton Fund for the Neurosciences at Brigham & Women’s Hospital, the Brain Science Foundation is pleased to present an all new patient education event. We are delighted that thanks to Mr. Ponton, we are able to offer this event free of charge for all attendees.

Taking Care & Taking Charge aims to provide brain tumor patients with the tools and resources they need to take care of themselves both physically and emotionally. This unique opportunity will be held at Brigham & Women’s Hospital in Boston on Saturday, March 7, 2015.

We look forward to welcoming brain tumor patients, their family members, caregivers, doctors, nurses, and allied health professionals for a day of education and empowerment.

The program will follow a patient’s journey through the many phases they face, including:

  • Discovery: We will look at such topics as diagnosis, bioethics & genetics, and caregiving.
  • Treatment: Topic areas will include selecting your health care team, what to expect in the hospital, and a look at chemotherapy and radiation options.
  • Long term healing: Specific talks will address psychological aspects, physical and occupational therapy, integrative care, and nutrition.

The day will culminate in a series of breakout sessions where attendees can take a deeper look at such topics as Integrative Care (such as energy therapies and homeopathy), Nutrition, Clinical Trials, Caregiving, and Physical and Occupational Therapy.

View the final program here

For more information, contact Sarah Donnelly at 617-852-5230.

BSF Golf & Tennis Classic 2015

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BSF Golf & Tennis Classic raises important funds for groundbreaking clinical trial

“Tee It Up for Brain Tumor Research: the Brain Science Foundation Golf & Tennis Classic” was a tremendous success! Held on September 21, 2015 at Oyster Harbors Club in Osterville, MA, the tournament gathered 165 supporters, including foundation leadership, corporate sponsors, clinicians, patients, and friends of the foundation. Funds raised at this event will directly fund the first ever Phase II Clinical Trial of personalized drug therapies for Meningiomas. This project is truly groundbreaking and represents a paradigm shift in therapies for primary brain tumors generally and for meningiomas specifically.

Oyster Harbors and Cotuit Bay served as a stunning backdrop for the occasion, and the weather could not have been better. Sixteen tennis players were treated to a competitive round robin on the courts, while 88 golfers were challenged by Oyster Harbors’ beautiful course. Additional sponsors and guests joined for the evening reception, where we were honored to hear from numerous clinicians in the field of neuroscience.

E. Antonio (“Nino”) Chiocca, MD, PhD, Neurosurgeon-in-Chief and Chairman of the Department of Neurosurgery at Brigham & Women’s Hospital and Harvey W. Cushing Professor of Neurosurgery at Harvard Medical School, as well as Jeremy Rich, MD, Chair of the Department of Stem Cell Biology and Regenerative Medicine at the Cleveland Clinic were on hand to welcome attendees and speak about the importance of research funds. Priscilla Brastianos, MD, Director of the Central Nervous System Metastasis Program at Massachusetts General Hospital and Instructor of Medical Oncology at Harvard Medical School presented new data regarding the first ever multi-center trial of precision medicine in brain tumors that she and her team launched in September. In 2013, the BSF funded Dr. Brastianos’ research as she led the first effort to comprehensively genomically characterize meningiomas. This research resulted in the discovery of novel, recurrent mutations in Meningiomas, which led Dr. Brastianos’ to launch this clinical trial. The trial began in September, and we expect it will have a significant impact on how we treat Meningiomas in the future.

The BSF is proud to direct all the proceeds of the Golf & Tennis Classic to this exciting clinical trial.

Thank you to all our sponsors and participants! A special thanks to Ocean Spray Cranberries, the Kessler Foundation, the Lagasse Group, Suffolk Construction, DTR Modern Galleries, and New England Capital, all of whom have been top sponsors of this event since its inception in 2009.

The Brain Science Foundation is honored to have such a devoted group of supporters and we would like to thank each of them for their belief in our mission.

dr-bguys

ladiestables

The Master Class: Endoscopic Anterior Skull Base Surgery

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March 11, 2015 at 9:00 AM EST -to- March 12, 2015 at 5:30 PM EST
Brigham & Women’s Hospital – Shapiro Center
70 Francis Street
Boston, MA 02115

Register Now

This May, the Brain Science Foundation is proud to co-sponsor The Master Class: Endoscopic Anterior Skull Base Surgery with Brigham and Women’s Hospital. Led by world-renown pituitary expert and longtime Brain Science Foundation collaborator Edward R. Laws, Jr., MD, FACS, the course provides the opportunity for surgeons to learn the endoscopic techniques that he and his team at BWH use to treat pituitary tumors.

We are pleased to offer CME credits for this course.

The Master Class gives neurosurgeons from around the globe the opportunity to learn specialized techniques using the most up to date technology. In addition to didactic lectures on peri-operative management, surgical anatomy, techniques, and complication management, the course features live operations simulcast from the operating room to the lecture hall, including 3-D displays. Attendees have the opportunity to interact with the surgeons in the OR throughout the case.

Dr. Laws and his team have assembled a world-class group of speakers for the program:

Edward Laws, MD FACS,
Course Director
Director, Pituitary/Neuroendocrine Unit
Brigham & Women’s Hospital
Professor of Surgery
Harvard Medical School

John Jane, Jr., MD
Professor
Department of Neurological Surgery
University of Virginia

Spencer Payne, MD
Assistant Professor
Department of Otolaryngology/
Head and Neck Surgery
University of Virginia

Ian Dunn, MD
Department of Neurosurgery
Brigham & Women’s Hospital
Professor
Harvard Medical School

Whitney Woodmansee, MD
Division of Endocrinology
Brigham & Women’s Hospital
Assistant Professor
Harvard Medical School

Sashank Prasad, MD
Department of Neurology/
Neuro-Ophthalmology
Brigham & Women’s Hospital
Assistant Professor
Harvard Medical School

Charles Cho, MD
Neuroradiology
Brigham & Women’s Hospital

Timothy Smith, MD
Department of Neurological Surgery
Brigham & Women’s Hospital

Program Highlights:

  • Anatomy and Surgical Techniques
  • Neuroendocrinology for the Surgeon
  • Neuro-Opthalmology for the Surgeon
  • Vascular Nasal Flaps and Skull Base Reconstruction
  • Panel Discussion – “Getting in and out of trouble”

Live Operative Simulcasts with commentary by Expert Panel:

  • Pituitary Macroadenoma
  • Expanded Endonasal Approach to Suprasellar Tumor

Click here to register and read hotel and travel information

Comprehensively Characterizing the Schwannoma Genome

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Peleg Horowitz, MD, PhD

Schwannomas are a diverse group of brain tumors that cause symptoms by progressively and unrelentingly compressing and displacing the normal brainstem and cranial nerve anatomy at the skull base. Most schwannomas are slow growing, but their clinical impact on patients isanything but benign: symptoms progress from ringing in the ears, imbalance, and hearing loss to facial dysfunction, brainstem compression, and early death. The intimate relationship of these tumors to nerve fibers controlling facial expression and hearing makes their treatment challenging.

Treatments for many other tumor types have arisen from an understanding of the subtle differences between tumor and normal cells. Particularly important are changes in the genetic code that serve as a blueprint for how cells should behave. Early studies into the genetics of schwannomashave shown frequent disruptions of a gene called NF2 that encodes a tumor suppressor; however, no treatments currently exist that target NF2 directly.

A major barrier to more effective treatments is the lack of understanding of the genetic events outside of NF2 in these tumors. Preliminary findings suggest that other parts of the genome may be important as well. This project will perform an in-depth, comprehensive study of the genomes of several schwannomas to fully characterize the genetic alterations in these tumors. Such changes may be in the form ofsubtle mutations (“typos” in the genetic code), larger deletions or insertions, or even massive genetic rearrangements that give tumor cells a particular growth advantage over normal nerve sheath cells. These findings will then be verified with a focused study of a much larger group of schwannomas. Dr. Horowitz and his team hope that this study will uncover important new genetic changes that drive schwannoma growth and development, pointing the way to new treatment strategies.

POWER UP for Brain Tumor Research 2014

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“POWER UP for Brain Tumor Research: The Barbara J. Powers Memorial Golf Tournament” was a tremendous success! Held on September 15th, 2014 at Nashawtuc Country Club, the tournament was a significant fundraiser for the Brain Science Foundation and will help to support continued research in the pursuit of a cure for primary brain tumors.

This year’s event was extra special, as it gave the foundation a chance to honor the memory of Barbara J. Powers who was an integral part of the BSF family. Barbara was a driving force behind the Golf & Tennis Classic for years before losing her battle with cancer in 2013.

Foundation leadership were joined by corporate and personal sponsors including Suffolk Construction, Ocean Spray, the Kessler Family Foundation, the Lagasse Group, and many more. Their support goes a long way in helping us raise awareness and much needed funds to support innovative, results driven brain tumor research.

It was a gorgeous day at Nashawtuc Country Club, and all in attendance enjoyed the challenging course, fun contests, delicious meals, and an excellent auction. We were honored to hear from our special guest speaker Dr. Priscilla Brastianos, who shared with attendees the impact that BSF funding has had on her research. Dr. Brastianos and her colleagues are about to launch a cutting edge clinical trial for meningiomas. She has woven together a team of national and international collaborators to study the molecular pathogenesis of brain metastases. The BSF is proud to have provided Dr. Brastianos with her first research grant, and we remain proud to continue to support her work.

Overall the tournament was a true success! The Brain Science Foundation is honored to have such a devoted group of supporters and we would like to thank each of them for their belief in our mission.

barb

Thank you to our 2014 Sponsors!

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POWER UP for Brain Tumor Research brings together BSF supporters to pay tribute

The Brain Science Foundation is thrilled to acknowledge our many sponsors for this year’s POWER UP for Brain Tumor Research: the Barbara J. Powers Memorial Golf Classic.

BSF Golf & Tennis Classic – 2014

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The Barbara J. Powers Memorial Golf & Tennis Classic

“POWER UP for Brain Tumor Research: The Barbara J. Powers Memorial Golf Tournament” was a tremendous success! Held on September 15th, 2014 at Nashawtuc Country Club, the tournament was a significant fundraiser for the Brain Science Foundation and will help to support continued research in the pursuit of a cure for primary brain tumors.

This year’s event was extra special, as it gave the foundation a chance to honor the memory of Barbara J. Powers who was an integral part of the BSF family. Barbara was a driving force behind the Golf & Tennis Classic for years before losing her battle with cancer in 2013.

Foundation leadership were joined by corporate and personal sponsors including Suffolk Construction, Ocean Spray, the Kessler Family Foundation, the Lagasse Group, and many more. Their support goes a long way in helping us raise awareness and much needed funds to support innovative, results driven brain tumor research.

It was a gorgeous day at Nashawtuc Country Club, and all in attendance enjoyed the challenging course, fun contests, delicious meals, and an excellent auction. We were honored to hear from our special guest speaker Dr. Priscilla Brastianos, who shared with attendees the impact that BSF funding has had on her research. Dr. Brastianos and her colleagues are about to launch a cutting edge clinical trial for meningiomas. She has woven together a team of national and international collaborators to study the molecular pathogenesis of brain metastases. The BSF is proud to have provided Dr. Brastianos with her first research grant, and we remain proud to continue to support her work.

Overall the tournament was a true success! The Brain Science Foundation is honored to have such a devoted group of supporters and we would like to thank each of them for their belief in our mission.

Characterizing the Functional Phenotype of Infiltrating Macrophages in Meningiomas

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Elizabeth Bradshaw, PhD

Little is known about the immune response to meningiomas, even though a robust infiltration of a specific immune cell type, monocytic cells, has been described. Understanding the role of the infiltrating immune cells in meningiomas is critical for future applications of immunotherapy.

Little is known about the immune response to meningiomas, even though a robust infiltration of a specific immune cell type, monocytic cells, has been described. Understanding the role of the infiltrating immune cells in meningiomas is critical for future applications of immunotherapy.

Little is known about the immune response to meningiomas, even though a robust infiltration of a specific immune cell type, monocytic cells, has been described. Understanding the role of the infiltrating immune cells in meningiomas is critical for future applications of immunotherapy.

Little is known about the immune response to meningiomas, even though a robust infiltration of a specific immune cell type, monocytic cells, has been described. Understanding the role of the infiltrating immune cells in meningiomas is critical for future applications of immunotherapy.

Immune cells are highly adaptable to their environment and respond to signals from surrounding cells causing them to change how they appear and behave. Monocytic cells can either enhance orsuppress tumor growth, depending on the signals they receive from their environment. It is thought that the tumor cells themselves can influence the behavior of the monocytic cells, making them a potential therapeutic target.

Dr. Bradshaw and her team hypothesizes that the monocytic infiltrate in meningiomas is highly heterogeneous, and part of it is composed of myeloid-derived suppressor cells, which potently prevent the immune system from attacking the tumor. Myeloid-derived suppressor cells themselves are very diverse in the markers that identify them and in how they suppress immune cells. This heterogeneity may reflect the heterogeneity of the various tumor types thatinduce them. The team will determine what sub-types of monocytic cells exist in meningioma, both pro- and anti-tumor, what role they are playing in suppressing the immune system from attacking the tumor and how the tumor cells control their behavior. Such findings could lead to novel strategies to modulate the immune system to enhance its effectiveness in managing tumor growth.

The Role of Epigenetics in the Pathogenesis of Human Pituitary Adenomas

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Ursula Kaiser, MD

Pituitary tumors are among the most commonly occurring neoplasms of the central nervous system, comprising approximately 15% of intracranial tumors. Although typically benign, they cause significant morbidity through mass effects and/or the inappropriate secretion of pituitary hormones, resulting in loss of vision, infertility, growth disorders, and metabolic disturbances.

The causes of pituitary tumor formation have been studied extensively, but the mechanisms involved in pituitary cell transformation remain elusive. Hormones and growth factors that modulate normal pituitary development and endocrine activity have been implicated in pituitary tumor growth, but do not appear to be the initiating cause. Mutations of tumor suppressor genes or oncogenes, as seen in more common cancers, do not seem to play an importantrole in the majority of pituitary adenomas. Recent evidence from Dr. Kaiser’s lab suggests that epigenetic histone modifications may play important roles in pituitary tumor pathogenesis.

Epigenetics is the study of heritable changes in gene expression or cellular phenotype caused by mechanisms other than changes in the underlying DNA sequence. Dr. Kaiser and her team plans to leverage the unique resources of the Brigham & Women’s Hospital Pituitary/Neuroendocrine Center and the associated comprehensive pituitary tumor tissue bank to further investigate the contributions of such epigenetic histone modifications to the formation of pituitary adenomas. Epigenetic studies in these tumors can lead not only to new insights into the pathophysiology of pituitary adenomas, but can in turn provide insights into the mechanisms underlying other cancers. These studies are also likely to help us understand why these adenomas do not progress tomalignant carcinomas in most cases, and may help us understand pathways that restrain the progression of pituitary tumors from benign to malignant neoplasms, which may have significantly broader implications for other tumor types.