Last updated: 8/26/2007
Maureen's Meningioma Brain Tumor Story
My story may be long. If reading my experiences helps anyone, then it was worth their time.
I hope that you will read my entire story and find its message one of hope, knowledge and of many realizations about living with or having a Meningioma Brain Tumor. It was initially difficult to write this story because for so long, I would not sit down and do that. I finally realized that it is all right to write about it and that it can help others! Further, I realized that as I updated it each time that it is important for others who have brain tumors or whose loved ones have brain tumors to hear from real people, such as myself, who have dealt with all the real life issues of this condition from doctors, tests and hospitalizations to our symptoms, emotions – all because of a brain disease.
While being diagnosed with a brain tumor often seems like the end of the world, it does not need to be. I am here to tell you that it is not! How we each respond to what is happening will have an affect on the eventual outcome of our situation.
I would suggest that if you are newly diagnosed with a brain tumor to rally around you those people who love you. Ask them to read my story and other brain tumor patient’s stories. Ask them to listen to yours, as well. Have courage to face it and then ask, “OK, now what?” and move forward. It is amazing to me that when people understand more about brain tumors, the kind of brain tumors that there are and their treatments – they are more apt to help in any way they can.
I hope you will read this to the end and discover that while my road has had many bumps and changes, I have become who I am because of the life altering events, not in spite of them.
My story about having brain tumors begins with having illness for a very long time before the final events that resulted in having my first brain surgery. I have heard from many people and learned that most people who have brain tumors seem to go through much in the same thing: unexplained illnesses and no medical tests to determine what is wrong, weeks, months and even years with no treatment. Finally, some doctor does some tests and finds a brain tumor. Then, we receive the help we needed all along. It should not have to be that way.
Back up to 1975: I was in a serious auto accident in 1975, after which I had headaches that progressed and worsened as the years clicked away. At the time of the auto accident, I had what they MDs called a 3rd degree head concussion; multiple bruises on top of more bruises and other injuries. On the 2nd or 3rd day into recovery, I had a Pulmonary Embolism (which is very painful). Pulmonary Embolisms can be deadly and require immediate attention. I was glad I was still in the hospital. I was immediately placed on Heparin through an IV Shunt. Then, I was on Coumadin (blood thinner) for several months with follow-up X-rays and evaluations with a Pulmonary Specialist doctor.
The contortions of my body during this violent auto accident had sprained just about everything. I was stiff, sore and miserable for months. I went for intense physical therapy, including swimming - eventually. My headaches became worse and the doctors and physical therapists said, “This is not uncommon for that kind of head trauma.” So, no diagnostic tests of my head, such as a CAT Scan, were done at that time.
As time progressed, my overall health declined in measured amounts. I had six to eight kidney and/or bladder infections per year, more migraine headaches that you could ever imagine - my whole head felt like it would explode at times. I had pains and more aches and pain, none of which made any sense at all. I was a mess.
The migraine headaches that I had became the kind where you feel as though someone is stabbing your head. The pain was not just a day or two and then subsided. It began to be weeks on end with varying degrees of pain - worse to worst. Those migraine headaches were the worst pain I have ever experienced. So I totally understand about unrelenting migraine headaches.
I tried everything to control the migraine headache pain, including eliminating all of those supposed foods known to cause migraines. Prior to that time, I had not had anything but occasional bad headaches - not migraines. I went from specialist to specialist, doctors to psychological profiling, and of course, got told these kinds of things:
- “It’s all in your head.”
- “You are stressed out, do these stress relievers.” (I was stressed, all right, because I was sick a lot and no one could figure out why!)
- “Head trauma often causes these kind of headaches. Deal with it.” (That was cruel.)
- “Here are some pills.” Then, when I reacted to those: “Here are some other pills.” (This happened over and over. I now have a list a mile long of medications to which I have adversely reacted.)
- “You're having a mid-life crisis.” and “Get over it and get on with your life.” (At age 31 to 34 years old then - I doubted that one seriously. I was generally a very together, calm and Spiritual woman! The only crisis that I was having was that I was sick and no doctor could figure why or what was going on, much less do any testing to find out why I was sick!)
- “You need to see a Psychiatrist.” (Oh, that is a good one. Did that! One psychiatrist told me to divorce my husband of almost nine years, which eventually did happen, but that was not the problem and I was not ready to hear that at that time.)
- “You are obviously very sensitive to pain. The headaches can’t be that bad.” (That one was a good one~ How can anyone tell you that the pain you feel is not that bad? The doctor saying that really had no clue!)
- “Put up with it.”
And, the list of comments goes on and on! Since I have received many e-mails from so many people for the last 4 years at Virtual Trials, I can only imagine that some reading this will not think: “Gosh, this sounds familiar!”
I was sick of being sick! Yet, I knew something was very wrong with me. I had never been like that in my life! I gave birth to both of my sons by Caesarean Section and recovered in no time. Four months before the bad auto accident (1975), I had a hysterectomy for Fibroid Tumors, which some researchers are now saying might be related to Meningioma Brain Tumors! It will be interesting to see what medical research finally finds on this one!
Up to that point in my life, I had been one of the most active and healthy people I knew, as I danced and exercised a lot. Modern Dance was in my Soul. I loved dancing! I ate a well-balanced diet, exercised a lot, took vitamins and was very spiritual. I knew my body very well, knew my own mind, thoughts and how I acted and reacted to many aspects of life and its experiences. I also knew my personal Spirituality very well. I had been practicing Transcendental Meditation to help with many aspects of my life.
So, I finally, I STOPPED going to doctors! Obviously, they were not doing me any good. Why go? I only went to a medical practitioner if I ended up with an infection that I could not cope with and for which I needed antibiotics. I chalked up a list of medications to which I reacted that are now several pages long.
In 1981, before we knew that I had a brain tumor, I ended up being transported to the Emergency Room in Sacramento (but same HMO as before). The worst thing happened to me. I was brought in by ambulance to the ER. The MDs thought that I had suffered a stroke (which some symptoms seemed to indicate). I could not talk correctly (gibberish and words in the wrong order) to communicate what was happening with me. My speech was quite slurred and my legs were so weak that I could not walk. My head was splitting and felt as though someone was stabbing my head with a knife - over and over. My eyes had the worst pressure behind them and felt like they were going to burst out of my head. I had a strange event reoccurring that was called focal seizure activity. Most of my symptoms should have been a clue that it was not a stroke and a CT Scan done at that time, because they would have found the brain tumor.
Some friends from Sacramento came to see me at the Hospital Emergency Room. My boyfriend at the time was really scared. The MDs in the ER convinced me that they needed to have spinal tap to see if there was blood in the spinal fluid. That was the really bad thing that happened to me in that ER. I later learned that it was absolutely the wrong procedure for what was really wrong with me. Remember, they did not know that I had a brain tumor, nor did I, yet. I later learned that a spinal tap is the worst thing to do to someone with a brain tumor. Of course, now, I do not think that anyone would do that. MRIs and other tests are much more effective in finding a diagnosis and certainly not invasive.
When I finally could sort of walk about 24 hours later, the ER released me. My left leg drug and I had a difficult time walking and my foot would not cooperate. I kept falling down. Here I was, a person who had been a modern dancer, very coordinated all of my life and I could not convince the doctors that I felt spastic (the only way to describe it) and that something was wrong - very, very wrong - with me! (I was naive enough then to think that doctors could “fix me” when I was broken.) I drove home to Hayward CA (100 miles) the next day, alone.
The ER Doctors said that I had not had a stroke. They told me that I needed to ask my regular MD to send me to a Neurologist when I returned to the San Francisco Bay area. I went to my MD (at the hospital where I worked). He threw away the referral paper for the Neurologist (right in front of me), saying that I did not need to see a Neurologist. He said that the migraine headaches were “probably causing the symptoms, as some migraines do that.” Then, he gave me some new pills, which did not reduce the pain much. I reacted adversely to those pills. My balance was clearly off and I literally ran into my doctor in a hallway at work one day. As I apologized for bumping into him and he recognized me, he asked if I was all right. I said “NO!” – and mentioned the reactions to the pills I was having. He told me to cut the pills in half and take half doses. Tried that and still reacted adversely to that medication.
At one point, I was with friends at a medieval event in the mountains about 50+ miles up a winding mountain road outside of Reno, Nevada. I had taken some aspirin for a migraine headache. I nearly died that day. I vaguely remember almost slipping away and was later told that I was going into a coma. The rest of this, I only know because friends told me what happened! One gentleman friend realized that I did not look right. He carried me to the medic’s camp. The lady who treated me was a Registered Nurse. After this whole incident was over, she told me that she was really scared, as I was slipping away and she debated whether to have me taken down the hill. Had I not come around soon, she said, she would have had me taken to the nearest hospital. Remember, there were no cell phones in those days. Here we were, a very long and arduous trip from civilization and I needed immediate medical attention. She said that she prayed for guidance as to what to do to help me. I really believe that she was indeed an Angel of Mercy, as she treated me for anaphylactic shock and I believe that kept me from dying that day! Nice to have angels working for us when we need them!
All my friends and this RN said that it was hours before I really came around. They had really debated whether or not I was even stable enough to transport, if they needed to take me to Reno. There were no phones nearby and no way of quickly getting medical help to the site. They were at the mercy of what she had available in her medical kit. Fortunately, she had a very good medical kit. Since that time, none of our groups will camps that far from civilization, as they realized how dangerous it could be – in case of an emergency. I recovered from that episode and was given lots of fluids (thought I was going to float away). The RN said that if she had an IV of fluids, she would have given it to me {whether an MD would have agreed with it or not}. In those circumstances, you need to do what is necessary.
I went to my regular MD when I returned home following that incident. He acted as though it was no big deal and questioned whether I really had gone through what I related to him. He questioned if the aspirin was the culprit. However, no further look into anything about what was going wrong with my body! Well, the aspirin had to be the culprit as it was the only thing I had taken! I have never taken, nor will I take any aspirin product since that time and that was more than 22 years ago!
During this period of time when I was so ill, I had gone to another medieval event near Eugene, Oregon. We were camping there for nearly a week. About the fourth day of this event, I had a horrible migraine headache for which nothing worked. Then, apparently, I had suffered near kidney failure. I was so ill that I could not get out of my bed (in a tent). A medic (an RN) came to see me. Determining that I was very ill, I was rushed to the nearest hospital Emergency Room about 50 miles away from where we were camping.
I remember being really sick and in a lot of pain, while I was taken to the Emergency Room in the middle of the night. I spent several hours in the ER, I was told. The ER doctor gave me a shot of Thorozine and then something else along with it to help counteract the side effects (I do not know what I was given). I remember that these shots did reduce the migraine headache pain quite a bit. Since I also had a very nasty kidney infection and he said that I was nearly at kidney failure, he gave me a strong antibiotic for that. He said to “force fluids” and follow-up with my doctors the next week at home.
I remember feeling the effect of the Thorozine for about two weeks after those shots. It is true what they say about the Thorozine Shuffle as you are really slowed down and cannot function very well. I felt like I belonged with the undead in a cheap Hollywood C rated movie - really zombie-like. Humor keeps me going sometimes and no disrespect meant by these comments.
I recovered from that kidney infection and as the months and years passed, I had about six kidney and/or bladder infections per year (during the years I was ill with the brain tumor). Unfortunately, the MD’s who I was seeing did not think this was too odd. I questioned why I was having so many infections and they had no answers.
Now, here is another good part! After the brain tumor was removed, I stopped having kidney and/or bladder infections. Now, is that not interesting? Makes me wonder about the effects that the brain tumor may have on the kidneys, on allergies and other things, as my allergies were out of control, until well after my first brain surgery – when they lessened.
Finally, another two weeks later (after the serious kidney infection and shot of Thorozine), I went to my regular MD and insisted on a referral to a Neurologist (I have to admit that I was borderline assertive-aggressive at this point). I obtained an appointment to see a Neurologist right away (fortunately). That MD gave me more pills (Cafergot). I reacted to that. It did not affect the headaches at all or lessen the pain! To say the least, I was not the least bit amused.
That MD thought that my migraines might be allergies. He ordered allergy tests with an allergist (so off to yet another doctor). I went for those and was nearly allergic to everything it seemed: plants, trees, grasses, dogs, cats, cows, hemp {no wonder doing macrame gave me the sneezes}, you name it and I was allergic to it and reacted horribly to the test. What a mess! (I hear Betty Davis saying: “What a Dump!” - at this point. It is all right to laugh! I do!)
The allergy tests affected me so bad that I had to have a shot of adrenalin, because of the severe reactions at the test spots. They created a massive hives situation on my arms - and, oh, did it ever itch! Then, sitting in at my desk at work, I began having asthma-type symptoms and was wheezing so bad that I almost ended up in the hospital where I worked. One of my co-workers helped me up to the allergy clinic, where I saw that MD and that is when I got a shot of adrenalin. The MD said to come back up before 5:00 P.M., as he wanted to make sure I was all right to drive home {or I would go in the hospital overnight}. They gave me Benadryl to take for the hives and itching.
Back to that first Neurologist: About two weeks later, I went to the Neurologist again and (get this!) he said to me, “If it will make you feel better, we will do a CT Scan.” I was so angry and appalled! I was, quite frankly, beside myself! I am sure that at that point I probably did seem like a really stressed-out woman (and as though my hormones were running rampant). After what I had been though, was there any wonder that I was not bouncing off the walls, totally stressed and all? {I wanted to come across his desk and deck him - would never have done that, however.} Not a single MD whom I had seen seemed to care one rip about what was wrong with me. I think that is what bothered me the most. They still had no idea what was wrong with me and clearly, some things were very wrong. I was very ill. Still, no diagnostic tests had been done to look inside my head or anywhere else, for that matter.
I went for the CT Scan and reacted to the iodine dye contrast. So, that was another really scary time. I began wheezing and choking on fluids that my body released from the allergic reaction to the substance they had injected into my veins. The thing I found interesting is that the medicos at that time had not believed the recent allergy testing for a reaction to iodine! This is another real “Duh!” moment in medical history. They gave me a Benadryl injection to counteract the iodine dye contrast and I think some sort of steroidal medication. They said the Neurologist would call me with the results to the CT Scan in a week.
I did not hear from that Neurologist about the CT Scan Report, until I called him.
In the meantime, I realized that I had another option available to me for medical care! I had dual insurance that I had forgotten about and had not used! Wow! I could go outside of that HMO. What a concept! I was in the tail end of a nasty divorce by then. I still had the HMO insurance under his company. However, as an employee, I had elected to have another insurance coverage, which took me outside of that HMO.
My boss at the time, told me about a local Doctor of Osteopathy (D.O.) that he liked in the next town about five miles away. I went and this kind elderly doctor and he began lots of tests, including kidney function tests, blood tests and testing for arthritis and numerous other things. I think he was looking for cancer.
He tried different medications for the seemingly arthritis symptoms that I had {swelling, water-retention}. A note here: Those symptoms disappeared after the brain tumor was removed in 1983. At one point, my ankles swelled so much; my skin felt like it would split and it hurt to walk. No medication this doctor tried for me helped. Nothing made me get better and the migraine headaches began to go from the tail end of one lightening and easing to going into the next full-fledged migraine headache. I was a real mess.
Then, only because I needed to take a copy of the CT Scan Report to my new D.O., did I go to Medical Records Department (at the HMO) and request a copy of the CT Scan Report. I wanted to read for myself what the report said, find what it meant and take a copy of the report to my new doctor outside of that HMO! After I got the report, I read that CT Scan Report in absolute disbelief! What in the heck is a Meningioma? I gathered from the report that it was a brain tumor. Until then, had never heard that word.
I immediately went down the hall to the Medical Library, across from Personnel where I worked. My dear friend (the librarian), Alice, helped me look up MENINGIOMA in the medical books. I was horrified, stunned and angry! You can imagine what else, too! It was “ALL IN MY HEAD” darn it, and, “IT” was a BRAIN TUMOR — Gasp!
I had been so sick for so long and finally it was almost a relief to know that there was something really wrong! Yeah, I was sick because of a darned brain tumor! Granted, it was not that big; needless to say, IT was making me very ill! Although I knew something was really wrong with me, it had never occurred to me that I had a BRAIN TUMOR!
I shuddered; I shook and then tried to calm down! I went back to Personnel and told the ladies I worked with about my CT Scan Report. They were all stunned. I then called the Neurologist (as this was more than a week after the CT Scan). I asked him when he was going to call me with this information? He did not say anything at first. Then, he said he had not received the report yet - or some other lame excuse. I sort of let him have it on the phone. I was still very angry.
Darn it, when a report comes back saying that a person has a brain tumor, the MDs needs to let you know that as soon as possible and then begin planning what to do about it!
The Neurologist acted like he could have cared less. He finally referred me to a Neurosurgeon across the San Francisco Bay at another of that HMO's hospitals. That ended up being another very bad experience. That NS said that at my age (remember I was 34) and with such a tumor that I should get used to having migraine headaches as part of life and get on with life and do nothing. I probably could have sued him and the HMO for malpractice. However, I was too busy trying to get through each day. I was on my own, lived alone and barely functioning anyway. I did not have the energy to do that and I needed my job.
I did not even make it into my bed most nights, falling asleep on the couch. I was constantly exhausted. I did not make it to work a whole lot that last year or so, either.
Later, I found out from close friends how much my personality had changed over the last few months and years leading up to having the first surgery. Good friends will tell you these things! Life was slipping away and I could not seem to do anything about it. Life was sinking and I felt quite helpless and hopeless.
All right, now that I knew that I had other options, my D.O. sent me to a world-renowned Neurosurgeon/Brain Surgeon at University of California at San Francisco (UCSF), Charles Wilson, M.D. Dr. Wilson explained that he felt that we should watch it for a year, before doing anything, because I was not in immediate danger. He also said that this way, he would have a baseline of it and could measure the growth rate, since it was not very large. He said that they just do not rush in and do brain surgery.
UCSF did another (much clearer) CT Scan that showed the tumor clearly at the top of my head in the Falx (between the two halves of my brain), pressing into the right convexity - presumably which caused all the left-sided symptoms and weakness and focal seizuring I was experiencing. Their equipment was state-of-the-art at that facility at that time. MRIs were not in use much, yet and CT Scans were the diagnostic tool being used for brain scans. Now, everyone uses MRIs.
During the next 12 months, I steadily declined. I felt so drained (sort of like in the movie Dark Crystal when they sucked the life out of the little folks). The tumor did grow in a year’s time.
So, on February 3, 1983, I checked into the University of California San Francisco Hospital for pre-op procedures. On February 4, 1983, a Benign Falx Meningioma was removed by a craniotomy. Surgery lasted 5.5 hours. They opened up a huge hole at the top of my head with five of those entry holes that remain as indents in your skull. The Meningioma was benign and part of the Falx was removed with it, the report says.
When I woke up from that surgery it was the first time in ages that I did not have a migraine headache. Of course, I was on oxygen and that helped. I was 35 years old. I recovered easily, even though about three days after surgery I got a cold in the hospital. They said no sniffing, no blowing my nose and what a mess that was! My nose and under it got really chapped. I used up a lot of Kleenex dapping at my nose.
I was in the intensive care unit (ICU) for a day. Then, moved to another ward with about eight patients, sort of like an ICU with an RN on the floor at all times. Then, I had a private room for which I was glad. I was in the hospital for a week. I began walking all over the hospital floor, to the solarium and looked at the San Francisco Bay and visited with other patients and their families. Everyone was so nice. I was not allowed to leave that floor. They did not want brain surgery patients walking all over the hospital and scaring everyone with their gauze helmet heads (also it is dangerous, I suppose).
I was fortunate enough to have my Daddy there with me at the hospital for about six days. I was glad for a familiar face following surgery. We had a chance to visit a whole lot. I am so thankful he was able to be there. My Mother had recently had a stroke, so was not able to make the trip. At least my Father was there! I recommend everyone have someone you know be there for you after surgery. If my Daddy had not been able to be there, I do not think I would have had anyone else, as none of my family or friends could be there on a constant basis, day in and day out.
I was on Decadron (steroid) for two weeks after surgery {reduces brain swelling}. It made me so hungry that I ate everything in sight. I was still thinner then than now and put on about 10 pounds during my recovery. Had to walk and exercise like mad to reduce those inches and pounds, once I was recovered and was back to work. I was on Dilantin for five weeks. Then, I got the worst hives that I had ever had. About that same time, I got a bladder infection and had to be treated for that. Here is another bit of great news, after that surgery and that bladder infection, I did not have a bladder infection for several years!
Being bald is a real trip! It is just simply weird, especially for me who had always had lots of hair! I had very long hair (to the waist) before I had it cut short and then shaved. I never wore a wig. I wore hats that I had made to match outfits that I had made {granny skirts}. My hats served me well. I gave them away to the next employee at the HMO where I worked who had brain surgery.
I recovered fairly well, rather quickly and returned to most of my normal activities soon. I was motivated to do so. I missed my boys and wanted to see them and had to wait until June, as they lived in Texas with their Dad. I felt so great afterwards with some side effects, which did not last. Gradually, the symptoms got to a tolerable level and I stopped falling down, running into walls and doorjambs, bruising my arms.
I managed to return to work within two months after surgery. For about three months, I felt like I needed a nap by 3:00 P.M. every day. However, it did take some time to begin to feel like myself again! I began going back to the gym/spa and worked out with my dear friend, Alta.
About seven years after the surgery, some of my memories returned to me about certain events during the brain tumor years. I realized that I had lost some memories and once I began remembering, it was like a whole chapter of my life had been restored. I could then close some doors to those chapters and opened new doors to my new life.
Since 1983, I have had not had headaches that I would classify as a migraine, except for three bad ones during the first year after surgery. It took me a while to equilibrate to being able to go above 2,000 feet in altitude without having altitude sickness. I have only had a very few bladder infections since 1983. My allergies are not as severe and I have not had further testing done, nor have I tried any of the medications to which I adversely reacted. I am just not comfortable with trying any of them to find out if I would still react and why would I?
During the time before I had the first Meningioma removed, I remembered saying to the D.O. at one appointment that it was as though my left side of my body was not mine and there was no connection between my left and right side of my body. I just did not feel like myself during those years. I often felt stupid - as though my brain did not function right and my thought processes were not right, but I could not help it. Nothing I did made any change with what was going on with me, even my meditation and prayers. However, I believe that my meditation and prayers kept me sane during those years.
During the time when I was the sickest, I remember having destructive thoughts and those really scared me a whole lot. I know that my Spiritual side suffered. I got mad at God and asked Why This? - Why Me? and How could you do this to me? Eventually, I realized that this was not anything that could be changed. Perhaps the experience was something that I had to go through to understand other peoples’ grief and medical situations. I asked God to help me. Eventually, I lost my anger and became calmed by knowing that I had not brought this upon myself. It was not my fault. I was no longer stressed and I realized that God did not do this to me on purpose or to be mean.
Life goes on and once I got better, I had to move back to the Bay Area where I worked. I had moved about a week before surgery to Sacramento to stay with friends, as I had no idea (nor did anyone) what I would be like following surgery. They helped me and it was nice for them, as I paid rent on the room in which I stayed. My dear sister, Janet, came to visit me a lot. She cleaned their home, as part of the help. That was nice and we had great visits. She helped me become me again! I will never forget that. She is a dear sister, very loving and supportive.
The medical staff at UCSF and Dr. Wilson were very straightforward in their approach. A friend of mine was one of the Neuro Nurses on the floor and that was an unusual experience, having a friend care for you as a nurse. My overall experience was a good one at UCSF. Both Dr. Wilson and Mitchel Burger, MD, my Neurosurgeons from UCSF are on the American Brain Tumor Association Advisory Board.
My story is not over! There are other chapters.
I had a follow-up MRI at one year (1984), at five years (1988) and at eleven years (1994). As I do this update, November 1, 2004, marks 21+ years since that first Meningioma brain tumor was removed.
The UCSF MDs said that if I got beyond 10 years without showing any more Meningioma brain tumors that I probably would never * have any more of them, ever! (Unfortunately, the doctors were wrong about that!) They recommended MRIs every five years. I felt like I did not have to worry about them and tried not to even think about the tumor years or surgery. I was, after all, taking good care of myself, mentally, spiritually, health-wise and all and with what the doctor’s had said (* above), I felt quite secure that I would never have to face going through brain surgery again.
From about 1993 on, I have not felt good or right. I did not think for a minute that I had another brain tumor. I have had two to three bladder infections, more colds and bad allergic symptoms.
I fell down a total of four times during 1999, had extreme dizziness and other symptoms that just did not make sense, a BIG RED FLAG went up and waved at us! Listen and look at what is going on here! Something must be wrong!
Concerns really hit us when I took a very nasty fall while in California in late November 1999. My left leg just gave way and did not function. Down I went - really hard onto a cement sidewalk. My two sisters, who I was walking with at the time, were as shocked as I was. We thought at first that I had broken my left tibia. Thank heavens I had not. I sure had some mighty bone bruises, though. My sisters insisted that I look into this falling down business, the dizziness and other weird symptoms that did not make any sense. They insisted that I see my D.O. right away when I returned home to Ohio {where I now lived}.
So, I did and talked with the D.O. about looking inside my head to check (for a brain tumor) with an MRI. My doctor ordered the MRI, saying to me three times that day, “I do not think you have a brain tumor, but we will do the MRI because you have had one in the past.”
When my December 16, 1999 MRI report showed three masses, two of which were identified as Meningioma brain tumors, I was devastated all over again. I could not believe it! How could this be happening? I went into denial, sadness and was quite angry.
Then, as I went for three different Neurosurgeon appointments (to get their opinions), my husband and I were told about these three masses, two Meningioma brain tumors and one CT Scan report later claimed that the mass behind my ear was a hemorrhage that resolved itself, which we learned in 2002 at the Mayfield Clinic in Cincinnati that it is nothing of the kind and of no consequence.
After going to get these three Neurosurgeon opinions, I got the approval of my company’s Insurance Company for the Neurosurgery - Brain Surgery - to remove the Right Parietal Meningioma. My husband and I had settled on the Cleveland Clinic. So, I went into the hospital on April 3, 2000 for pre-surgical testing and preparation. On April 4, 2000, 17 years and 2 months to the day after having the first Meningioma removed {and now at the age of 52}, I had a Right Parietal Benign Meningioma removed at Cleveland Clinic Foundation Hospital.
This recovery has been more difficult for me. The surgery was only 2.5 hours long and I spent 2.5 days in the hospital.
Update: June 27, 2000 - What I wrote to friends/family recently:
Life is like a roller coaster with ups and downs and it often takes us for a loop-de-loop that we are not expecting! On Monday, June 26, I went for Neurological Evaluation at Cleveland Clinic, since I have been experiencing symptoms that all seem to have increased over the past month or so. Instead of feeling better following the first few weeks of this brain surgery recovery, I have begun to feel worse. It has been 11 weeks since my brain surgery.
The problem is that I still have another Meningioma. Best guesses with symptoms are that it is this tumor causing the problems. One of the symptoms is an ammonia smell from time (I smell ammonia, but it really is not there). The others are fatigue, uncoordinated gait, waking up every day with a headache, blurry vision and several others.
So, after trying to deal with these, praying that they would just go away, keeping daily notes on my calendar, not feeling like I am progressing - but moving backwards, we felt that my condition needs to be addressed.
After having talked with my Neurosurgeon's RN recently (I sent her a Fax-Memo), she set-up an appointment for me to see Neurologist as soon as possible. She felt that we could not wait another six weeks. Thus, the appointment this Monday.
The Neurologist asked me a bunch of questions (based on my Fax-Memo list of Symptoms, Concerns and Questions). He did a mini-Neurological Exam. He had seen me two weeks after my surgery. He said that brain tumor patients all have a “long laundry lists of complaints” and that they realize for the patients that it is unnerving, unsettling and frustrating. He said that he is very concerned about the ammonia smell - as it is a form of seizure activity. My notes on my calendar reflects that this ammonia smell has occurred at least four to six times per week, sometimes two to three times per day.
The doctor is concerned about my headaches. He asked how much caffeine I get - not enough to be a concern, he figured, as I have two cups of coffee (very light) per day and do not drink sodas or other things with caffeine! So, he determined that caffeine is not the offender.
My allergies are calm now, especially for this time of year. I am not outside a lot to breathe in the pollens and we have a very good filter on our HVAC system in this house. Plus, I am not waking up with stuffed head and nose, so they clearly are not sinus headaches.
Gee, what could be causing headaches when I wake up every day? My best guess is the pressure that these darn tumors put inside the head as the headaches subside a whole lot after I have been up for a while!
The doctor had me walk and as I stumbled across the room, catching my balance on the wall, he asked if I use a cane. I said “no” (I do not like to walk with a cane, because I think it is hard on the wrists and back), but he did not tell me to use one, but indicated that if I felt I needed to, to do that. Forget walking one foot in front of the other. I would be hard-pressed in a sober situation to pass a sobriety test! (Laugh! It is OK!) Needless to say, it is frustrating when you have been very coordinated all your life to feel like an absolute klutz when you walk! One of my dear friends said that I should just use the cane and get the best out of it - besides she said, you would be elegant with a cane! Nice to hear, but part of me says that using a cane admits I am disabled and I may not be ready for that step, yet.
The doctor asked about my mental state, the stress, my frustrations, etc. I told him (and Scott explained some more) about our insurance situation on top of every thing else. That is when I said that I could not handle the stress of how I feel, physically with my symptoms. I frankly did not need this insurance mess on top of the stress of having brain surgery and still having a brain tumor to deal with as well! He said that I should not have to deal with the insurance companies. I said that I need Scott to do that for me now, as it just makes me so darn angry.
Then, he asked what else was there and I began to cry (I try to be so tough and not do that); so told him that I feel “sort of stupid” (lack of better word at the moment) now as I feel this increasing mental decline that is really pushing my anger and frustration buttons! He handed me the Kleenex box.
Actually, this next part is quite good as the doctor explained that since I have had two brain surgeries over the past 17 years and still have a Meningioma Brain Tumor in my head, that it is not uncommon to feel the way that I do. He said that every time a person has brain surgery and brain tumors, they lose certain brain functions. I told him that I just “do not feel smart enough to go to work” because I have such a hard time concentrating and remembering things. It takes me a long time to do anything, such as writing a memo like this. I fish for words when I talk or write (and I have not had to do that before). He said I would not have to go to work now and is keeping me on disability with an Undetermined Release Date - wait and see how things go. The reality is that if this other tumor is inoperable and continues to cause me to decline, I may never be going to work. Time will tell.
He asked me if I wanted to go on an anti-seizure prescription and he explained all the pros and cons of that. I said that if I really did not have to, I would rather not, unless I absolutely needed to (too many medication sensitivities) and I had reacted to dilantin the first time around. He said that we need to call them immediately if I have other things that seem more like seizures, besides the ammonia smell, i.e., full shaking, or obvious shaking. He did not think the tremors we tried to explain were seizures (but who knows?).
Then, we talked about the mental stress and frustrations while I was really upset some more. I had also told him that I just do not feel like myself anymore (or very normal). The doctor seemed to think that I am normal for my situation and with the existing tumor, the unbelievable stress that I am under at this time. That was a nice validation. I have a right to feel what I am feeling, given my current situation.
The Neurologist suggested that I try to get more activities in my life. I walk some, but walking is a problem because of my gait and I get really tired, really quickly. I think I am going to ask Scott for a stationary bike. It would be good for both of us. I would like a recumbent one, as that would be less stress on low backs.
I did tell the doctor that I have been doing some art and craft projects for fun (dècoupage, shadow boxes and such), focus and to relieve stress, plus meditate twice per day. He wrote that down and seemed to think that was really good (at least I am doing things). I told him that I e-mail, write and that helps me a lot and that we have supportive family and friends. So, even though I face this inevitable dragon - the brain tumor monster - I can feel comfort in that I have so many supportive friends and family.
We go forward from here. My next MRI is August 7, 2000. At that time, I see the Neurosurgeon to discuss options and also see the Neurologist again. My job right now is taking care of myself and working at trying to adjust to the new me.
Thoughts, Hopes, Information & Helping Others
My thoughts continue on brain tumors, recovering from brain surgery, living every day with a brain tumor, pondering the things that I believe in, seeking connections to the whys, genetics, reasons, cures and for hope. So I write more that perhaps my experiences can help others cope.
The MDs said at the time of my first Meningioma that it could have been triggered to grow when I was in the auto accident in 1975 and had the 3rd degree concussion. Who knows? They just do not know about these things. Here we are in this advanced techno age and medical science has so little information on why we have brain tumors (of any kind).
Needless to say, I have seen a plethora of medical doctors over the years. I have even gone to some doctors who just act like you are crazy when you give your medical history and say that you have had a brain tumor removed. Then, they blow you off and never listen. Time to get another doctor. I think that some of them just do not know how to act with brain tumor patients.
I learned that one of my great uncles on my Mother’s side ultimately died at age 79 from a Meningioma brain tumor that had become so large, the Neurosurgeons could not get it all when he had surgery two years before he died. He went blind, too. So far as we know, there is no one else in the family who has ever had or has Meningioma brain tumors and we all hope and pray it stays that way! So, we do not know if it is genetic.
I do not look forward to checkups or doctor appointments. However, I know that if I want to live the rest of my life in a quality situation, I must have them! I may have to make decisions for treatment options for the other Meningioma in the future. That is something I do not look forward to; however necessary it will be for my health.
I try to live each day as though I enjoy being here, surrounding myself with family photos and things I like, making my own little peace of heaven on earth. I know God’s plan for me is for a long life, so I must find the best medical care I can get, insurance aside!
So, all of this is part of my her-story and experiences with Meningioma Brain Tumors, doctors, hospitals, medications and all the devastating illnesses that go with what these tumors do to the body!
I have often wondered how many other people suffered as I have and how many folks end up with these things and the MDs just do not do the testing to locate them!
I have learned that we have to be our own advocate or appoint someone in your family to do that! With all the technological advances in medicine, I do not believe anyone should have to suffer in these modern times. Get doctors to do the tests to find what course of treatment is best for each individual's situation. Get the insurance companies to pay for the diagnostics, necessary treatments, hospitalization and surgery to give quality of life back to the living! Is not that why we all have insurance?
I advocate this: I believe that no clerk behind any insurance desk has the authority (or right) to tell any patient or doctor what treatment to give or to deny treatment! To deny any patient treatment goes against the Hippocratic Oath that doctors take when they become a doctor. In my opinion, the insurance companies need to follow it, too!
I will step off my soapbox now!
I try not to be angry or upset. I strive every day toward adjusting to the changes in this physical body and with my mind and I now, need to work toward accepting this New and Different Me! I am glad to be alive! I have loving family and wonderful friends!
UPDATE: August 8, 2000 - We actually have some GOOD NEWS!
I went for my 4-month MRI and evaluation after April at the brain surgery at Cleveland Clinic on August 7, 2000. In talking with my doctors, we have found that we had been misinformed about the Meningioma brain tumor that still exists. We had been told by a doctor in Columbus that it was near the Circle of Willis. That Meningioma is not near the Circle of Willis.
The good news is that the brain tumor has not grown since December 1999 or April 3, 2000 MRIs. The rest is that the existing tumor is another Falx Meningioma, but deep brain (about 2 inches lower than the original one removed in 1983). I asked the doctor if this was a re-growth from the 1983 tumor and he very emphatically said “no!” without hesitation, so that is very good news!
However, because access to the brain would be difficult in that area, a very high-risk surgery and the fact that it has not grown, the NS’s recommendation is to “Watch, Wait & See” (some more). Sort of the idea, “Let Sleeping Babies Lie” - applies here. Let sleeping tumors lie and do not disturb them! He said next follow-up MRI in another six months (around February 2001). Unfortunately, I am still experiencing symptoms that are not very pleasant. I am just not coming back to feeling well again, and it has been a long haul! I manage all these symptoms the only way I can, deal with them and adjust to changes. It is a challenge, but I am glad that I still have a sense of humor. So far, I have not broken anything expensive! The doctors are still keeping me on disability with an undetermined release.
If it can be funny, here is one of the funny things! Brain surgery/tumors have deleted some of my brain's memory chips! Now, for some things that can be helpful. However, I questioned: recipes and cooking? Well, that is actually quite hilarious (sometimes), but at other times, it is disappointing and frustrating! Having been able to cook for most of my life with all those recipes in my head, I now find that my recipe files have been erased. It is, well, just a tad weird! I have always loved to cook good food (and consume it). Well, poor Scott has had some very strange meals (but I do not think he has suffered and we have not had to throw away any food). It is just strange to be a stranger in my own kitchen! In searching my brain for some other files, I find that I am missing some other things, so we adjust and go on with life.
The MRI shows that the Right Parietal area of my brain, where my April 2000 tumor was removed, looks very clean and clear. That is good news! The doctor’s recommendation was that if that Falx Meningioma requires treatment that I consider the Gamma Knife. Read further and you will learn why I would not ever consider it. To read about the Gamma Knife: http://www.elekta.com. I got more information from their Website than from other booklets about Gamma Knife Procedure.
Believe me, Scott and I appreciate all the e-mails, cards and letters, support, good thoughts and prayers sent our direction these past few months. I am inclined to believe that this support had been directly responsible for stopping that other tumor's growth. We pray it will never grow any more, or better yet, shrink! It has helped me to know that my family and friends really care!
Resources on the Internet
I hope that anyone seeking information will take a few minutes to look at the following Websites {if you have Internet access, or can log on at a library}. All have been helpful for us to arm ourselves with information that is so vitally important when faced with brain tumors.
These Websites and others are loaded with excellent information, not only for the patients, though also for care givers, family and friends.
I appreciate being able to tell my “her-story” through Virtual Trials and glad that I have received so many E-mails from folks who have read my story here. I respond to all the e-mails that I receive. I can only talk of my personal experiences. I cannot and would not give anyone any medical advice. For any medical questions, each patient and their families need to direct those questions to their doctors.
Helping others through e-mail has been helpful for me, as well. It connects those writing with a real person who can relate to their real problem. I have heard from hundreds of people so many whose experiences have been much the same as mine with doctors, hospitals and insurance companies. It is comforting to know that I can refer those needing more information to the American Brain Tumor Association and to Brain Trust or National Brain Tumor Foundation where people can receive lots of help and advice. It is nice to be of service in that way and I am happy to take the time to do that. We all need information and should utilize all we can get. To be armed with information is to be forewarned.
I have developed some friendships via various Internet sources and that has been a great experience and of great help and a wonderful exchanges. I am finding that there are many who are worse off than I am and many who have good ideas and advice, based on their personal experience.
Update: February 4, 2003
Actually, I should have done this some time back. I have been busy with other things, one being, getting my Website up and running. Well, I got the things to my Webmaster and he got it up and working. I do not know how to do that part. I have changed Neuro doctors.
Summer of 2001, the Neurologist at CCF told me that there was nothing he could do for me and did not bother to see if any other specialist could see me and help. I left there feeling as though no one at CCF cared. So, I sought out a new doctor and clinic. I strongly feel that we each need to go to the doctors who offer hope and help, kind words and will not hesitate to send you on to someone else who can offer help, if they cannot. I did not get a warm fuzzy feeling when the doctor told me, “I cannot help you,” so why would I want to continue to see such a doctor?
We learned much from this new Neurologist. The existing Posterior Falx Meningioma brain tumor (deep brain) has not grown since my December 1999 MRI. The doctor said in July 2002 that I do not need to have another MRI for a year. So, this is good news.
I am convinced that the prayers, healing energies and good thoughts of family, friends, healers and my own positive outlook and thoughts have kept that tumor at bay. There is an NBTF remote healing experiment in progress (I am not a part of that study). However, I am determined that we have already done our own experiment and that it is a success. I am and the MRIs are proof that healing energy, prayers and all do work. It is the only explanation I have for the lack of growth. I am confident that God has more work for me to do.
The other activities we have been doing is more Metaphysical and Spiritual ventures and a booth at the Universal Light Expo in Columbus, Ohio {you can see their website from a link through mine). I have taught seminars, offered readings and participate and attend other in Spiritual events. Activities are listed under Appearances on my Website. Please see my website at: www.AkashicAuras.com to learn more about what my life’s purpose really is and what I really do in the Spiritual and Metaphysical arena. I enjoy contact with folks who wish to write or adopt one of my hand created Artistic, Intuitive, Imaginative Decor. Hand making these items keeps me busy, focused and forces me to use my skills. It keeps me going and connected to God. All this helps me heal, maintain good health and balance, keep a sound mind and continued use of my body, plus brings my personal Spiritual levels higher.
I have two loving and devoted sons, Mike and Scott, with wonderful wives, Susie and Chris (respectively) who have given me adorable grandchildren Cassie, Katie and Colin. I love them all and miss them when they are not here.
I am very fortunate to have my loving husband, Scott. Without his help and support, I could not manage. With my faith in God and my strong Spiritual connection, I will make it through each day. Live offers us choices on how we live each day, each hour. I choose to live in calm, peace, with love and in The Light of God.
Update: November 1, 2004 – Networking & Outreach Programs
I continue to have an MRI every July. So far, there has been no growth in the deep brain Meningioma tumor. I still maintain that how I live my life, my Spiritual beliefs, the healing energies and prayers of friends and family have kept it from growing. I also believe that my personal attitude toward life has kept me feeling better – overall.
I do, however, have health conditions for which I see a Neurologist locally about every 3 to 4 months. She has also had some testing done which has identified certain things. In a perfect world, there would be a cure for what ails me. Since there is not, I wake up each day and as said by Tom Hanks’ character in Sleepless in Seattle, “I breathe in and out” – life goes on and we do the best we can each day, nothing more and nothing less. When I am tired, I rest or sleep. I have good days and bad days, but I get up every day, thankful that I am alive.
I have a new primary care doctor, as well. I advocate to everyone that if any doctor is not providing you with the best health care – find someone else. It is really not that difficult to do. We are the ones who hire our doctors and we can fire them if they are not doing anything to help us! I am very glad that I found s new primary care doctor, as that has made all the difference in the world. We all need the best doctor.
I am happy to have been a part of the FACES OF BRAIN TUMORS book that goes to U.S. Congress in Washington D.C. each May. Yes, all brain tumor patients have faces, names, lives and his and her stories. When people see us, to look at us, people cannot expect that we are anything other than doing all right. There is no particular look that would cause anyone to say or think: that person has a brain tumor.
People with brain tumors come in all sizes, shapes and ages and from all countries and cultures. We are people who deserve to be treated with dignity, which includes having good and complete medical care that is not dictated by some clerk behind an insurance desk. Those clerks and others in the industry might feel differently if someone in their family suddenly was diagnosed with a brain tumor, brain cancer of any other serious disease for that matter. We deserve to be treated as a human being and not as the number on our medical record or our social security card. The world needs to know the statistics of brain tumors. Research needs to be done by medical science that must find cures for all brain diseases. It is my hope that the U. S. Congress seeing our faces and stories in the book will realize that we are all people, just like them and that we can achieve better health care and more funding for brain tumor research, so people like us can be cured. Put FACES OF BRAIN TUMORS in your browser and see what comes up!
I am happy to have donated one of my 2000 post brain tumor surgery hats for the HIDDEN UNDER OUR HATS project. I think that it is a very important aspect of and makes a statement about those who have had brain surgery to remove a brain tumor. The project was displayed for U.S. Congress in May 2004. I understand that it is being taken to various locations for display. For more information, see: http://nabraintumor.org/btaw_hats.htm.
I am thankful to Al Musella of Virtual Trials for the opportunity to post my story. I have heard from people all around the world. Thank you for reading this story and I hope that it has inspired you to look at others differently and if it is you who has the brain tumor, look into the mirror and realize you are not your brain tumor. If you feel so inclined, please write to me of your experiences.
I do not write updates to many family and friends anymore about what is going on with me. Some people I do let know about my MRI results. I figure if that the people who know me and who are interested in knowing my status will ask. It is a matter of choice what we tell others and when. I decided that updating on e-mail was not benefitting me and I did not want a pity-party attitude. I cope and get on with my life as best as I can. I do what I do. All any brain tumor patient can ask for is hope. We can realize that life is a precious gift and live our lives, as thought each day could be our last day and show others that we care about them. Sometimes that says more than anything and it is returned in kind.
Updated: June 2006
My deep brain Meningioma still sleeps and that is fine with me. It has not grown since 1999. In fact, the latest MRI of April 2006 shows it smaller than ever before. So, I have to wonder if my Spiritual endeavors and my faith and belief in God has caused it to actually recede?!?!?
I was asked last year to share my Brain Tumor Survival Story in a book published by a lady in Greece! I had many wonderful correspondences with Maria.
Lastly, I offer that each person who unfortunately ends up with a brain tumor begin saying to themselves in the mirror this: “I am not my brain tumor!” That is not who we are. It just happens to be something that for whatever reason, we are to experience.
If you need additional information, I have an e-mail with some good advice based on the hundreds of people who have written to me and my own experiences. I would be happy to e-mail it to you. So write me if you are interested. It covers much that I would never put on-line about employers, insurance and other information that can be very helpful to not only a brain tumor patient, but for their families.
~ Maureen
- A 59 year old wife, Mom and Grandma in Ohio.
- I write self-empowered, Spiritual Messages, books and articles. I create ARTISTIC, INTUITIVE, IMAGINATIVE ONE-OF-A-KIND DECOR – Taking Needlepoint, Beading and Design
- Where No One Has Gone Before! My items inspire the imagination! Contact me at www.AkashicAuras.com to learn more about what I do and who I really am!
- I live with a “Watch, Wait & See” Meningioma Brain Tumor and live with determination that it will not get me down! I just “Keep On, Keeping On!” Since 1999 it has not grown. I am happy to be alive!
- I am a Member of: ABTA, NBTF, Society for Creative Anachronism, Inc. (SCA) and The Nature Conservancy and a Proud American Citizen.
- My story may be long. If reading my experiences helps anyone, then it was worth their time.
Update 8/26/2007: Maureen is doing well, but is overloaded with email so we will be temporarily removing the feedback form.
