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One Brain Tumor Survivor's Story
I Had a Brain Tumor for 10 Years, and No One Knew It
In 2006 I was diagnosed with a brain tumor the size of a lemon. The doctors said the tumor had likely been growing for 10 years (since I was 16). I never realized that I had all the warning signs of having a brain tumor (and worse, none of my doctors picked up on it either) until the it caused major complications after I delivered my first daughter.
I've met many brain tumor survivors in support groups and our symptoms varied widely because the brain controls EVERYTHING and depending on where a tumor is located symptoms can vary widely.
My Brain Tumor Symptoms
Afraid you might have a brain tumor?
You Might Have a Brain Tumor If...
...you have DAILY headaches (even if they aren't severe).
...looking over your shoulder, or head movement causes a headache.
...you constantly feel fatigued.
...you have a constant ringing in one ear.
...your eye twitches randomly or frequently.
...caffeine causes one side of your face to start twitching.
...one side of your face seems lazy.
...you have random unexplainable shots of pain on various parts of your face and ear.
...you loose hearing in one ear (not both).
...all previous symptoms are all on the same side of your face.
...your sense of balance is horrible.
...you suffer from dizziness, or vertigo.
This last symptom did not make any of my doctors' list... But it was huge for me (and I suffered from it and saw many doctors about it before I got the right diagnosis), so I list it anyway... You might have a brain tumor if you have severe back pain (especially if you've already had MRIs of your back and you don't show anything that should be causing you back pain).
You don't typically think of back pain as a symptom of a brain tumor, but brain is connected to your spine by the dura. If you have an obstruction in your brain (because of a tumor) the CSF pressure could easily cause you to suffer from the pain of a pinched nerve that under normal pressure wouldn't be a problem.
Of all brain tumor survivors I've met, the most common symptom we all had in common was headaches.
What to do if you think you have a brain tumor?
Make an appointment with your family doctor, and ask for a pupillary check because you think you might have a brain tumor. When telling your doctor why you think you have a brain tumor, list ALL symptoms you experience even if they seem unrelated.
Remember - the brain controls everything (and can cause everything to go wrong)! I know brain tumor patients that have lost the ability to smell, memory loss and had changes in their personality.
A Proper Pupillary Check - Something Every Family Doctor, Optomitrist and Nurse Should Learn To Do
In all the years that I had a brain tumor, my eyes were examined regularly. I had annual appointments with an optometrist (I have worn glasses since age 14) and I know my primary care physician also checked my eyes. That tells me that they weren't properly checking my eyes. In my 20s I opted out of having my eyes dilated at optometrist annual exams. I'm pretty sure they would have caught my tumor if I had not opted out; however, it still should have been obvious that something was wrong when they shined the light in my eyes.
Dr. John Fowler is a Canadian ophthalmologist who created "A Day in Primary Eye Care for Family Physicians" in 1978 to help educate family doctors on how to properly detect visual abnormalities. A proper pupillary check could have helped me get a brain tumor diagnosis years (even a decade) sooner.
Detecting Brain Tumors with "Eye" Exams
How Properly Shining a Light in Your Eyes SHOULD Detect Tumors and Other Abnormalities
A real life Squidoo Angel sent me this information and it truly is the information I wish I had when I started having symptoms.
From Sousababy "I worked 10 years in ophthalmology and have helped to detect brain tumors by simply checking for pupillary response. It's something EVERY family doctor should know how to do (properly). I have even followed up this test with an easy to conduct 'confrontational visual field test.' There is often a quadrant or hemi field defect present as well. (A patient may not notice - since with both eyes open, the other eye 'sees' the blindspot hindered by the tumor affecting only one part of the visual cortex). I know that's a little technical talk, but family doctors, nurses, EMTs, everyone who does clinical work-ups should learn how to check patient's eyes. Furthermore, detecting where the defect is (blindspot) can even help diagnose the location of the brain tumor (and indicate if it could be a possible aneurysm . . requiring immediate emergency life-saving surgery). I saw such a pattern when testing a doctor, in fact, on a machine called the Humphrey visual field analyzer. We immediately sent him to the neuro dept. (in the Canadian hospital I worked at)."
Shaved Head, Ready For Cranial Surgery - Summer 2006
MRI of My Brain After Tumor Removal - I had a Benign Facial Schwanoma (often misdiagnosed as an acoustic neroma)
These MRI images aren't as striking (five years post-op) as the original MRI scans. My brain has had a chance to decompress and take back over some of the space that was originally occupied by my tumor. I remember looking at the first MRI after the tumor was removed and thinking, "Wow, I have a HUGE hole in my brain. How am I still alive?"
My tumor was a slow growing facial schwanoma. These tumors are often misdiagnosed as the more common acoustic neuroma. Earlier detection can prevent the permanent facial paralysis I have experienced.
If you're afraid your doctor won't take you seriously print this page to take to an appointment.
My Story is Proof You have to Demand Answers from Doctors
Why My Tumor Went Undiagnosed 10 Years
Here are the most important things I've learned from my 10 year undiagnosed brain tumor.
1. Always tell your doctor all your current symptoms at every visit (even unrelated symptoms, or issues that you've already dealt with).
2. Never assume your doctor REMEMBERS things he or she has treated you for in the past (or even that he or she reviewed the notes in your file on other conditions).
3. Demand Answers, and if you don't get them go get a Second or Third or Fourth Opinion.
4. Never give up. Modern medicine is AMAZING when you get to the right place for your particular problem. Getting there is most of the battle.
Some background history on why my tumor went undiagnosed for 10 years.
At age 16 I started having symptoms. I went to my family doctor numerous times about seemingly unrelated symptoms.
I had frequent headaches, but I have always been a night-time teeth grinder. My doctor diagnosed me with TMJ and I was off to the dentist to get a night guard.
I had hearing loss in one ear, and sometimes had a ringing in my ear. I was seen by an ENT specialist and given hearing tests. The specialist said I was a typical teen, listening to my music too loud and needed to turn the volume down to protect my long term hearing.
In my early 20s I started developing severe back pain. I went to the same family doctor and he recommended exercise, and stretches. I kept returning to him, because I needed medication to function. He would give me an annual MRI of my lower back to see if anything had changed. I showed a slight bulged disc, but it seemed strange that it would be causing me such intense pain.
By my mid-20s I was a complete disaster. I had daily headaches by this point (but thought it was the TMJ) and I had difficulty sleeping with the night-guard in place so I didn't always wear it (and dismissed my headaches to my lack of discipline in wearing the night-guard). For my back pain, I'd given up on my family doctor, and started seeing a chiropractor who claimed he could adjust my spine to make my headaches and my back pain (which now traveled down both legs) disappear. I saw the chiropractor three times a week for a year, with no change. The ringing in my left ear was also continuous by this point.
I should have gone back and demanded BETTER answers for all my ailments from my primary doctor. However, I took the easier path, I just lost faith in doctors and their ability to help me.
Pregnancy - Carrying a Baby and a Lemon
I didn't Know I had a Brain Tumor While I Was Pregnant
When I became pregnant in 2005, I was at the peak of not feeling well. I could no longer lift my left leg without assistance even to put shoes or pants on. However, I had gotten a new family doctor that was bent on helping me "solve" my pain problems with physical therapy and chiropractic work and medication. But when I got pregnant, I went off the medication cold turkey. To this day, I'm not sure how I did it.
I was in pain all day every day. I refused to take anything more than 200 mg of acetaminophen and even that, I wouldn't take more than once a day. I kept asking my OB for help, but she didn't want to prescribe anything and knew this was a condition that I had prior to pregnancy so she didn't dig any deeper.
Then I broke out in shingles (on the left side of my neck - where the tumor was). My OB diagnosed it, but didn't seem concerned. In hindsight, it was obviously the stress of the tumor caused the shingles outbreak.
At about 7 months pregnant, I could no longer function. I had to beg my OB to give me a recommendation to not work. I basically told her, I need medication to get out of bed to deal with the pain - or you're writing me a note so I don't have to get out of bed. She eventually (and reluctantly) complied with my wishes.
The weekly trips to visit my OB for checkups were unbearable. I would sit in the waiting room for hours sometimes, in excruciating pain (hardly able to maintain normal breathing). They would take me in and take my vitals, which would almost put me in the hospital because my blood pressure and heart rate were so high. But they'd let me lay down and wait 15 minutes, and my vitals would go down to a bit more of a normal level, and the doctor would release me home.
I carried my daughter to 39 weeks (with a lemon in my head). My OB would have allowed this to go on until my daughter decided to come on her own - but I begged to have her induced the last checkup because I couldn't handle the pain any longer.
Labor and Delivery with a Lemon in My Head
Still had NO IDEA I had a brain tumor
I went in for a scheduled labor at 7am. I had toyed with the idea of having a natural child birth (since I was so used to the pain anyway) but was urged by my husband to go ahead and have an Epidural.
The Epidural felt FANTASTIC ... for about 15 minutes. It was the first time I had been pain free in 9 months. But it was VERY short lived. The pain came back very quickly. I kept telling the nurses that it wasn't helping, and they kept reassuring me, "I think you're feeling pressure, not pain." Eventually, the nurses called the anesthesiologist back and he started asking questions about my back pain history and it was determined that my epidural wasn't working because of my back problems.
So I sucked it up (used to the pain, afterall) and decided to stay positive and not let the pain get me down. I gave birth about 5pm that night, and I think everyone in the room was a little amazed at my endurance (after realizing that I actually did feel it all).
Two days after giving birth I couldn't sit up to hold my new daughter.
I felt sorry for myself until I realized my daughter could have been the one with the brain tumor.
Postpartum? - Seriously!!?
I saw Three Doctors that Called my Symptoms Postpartum
I was hoping that the baby would pop out, and miraculously my pain would diminish.
Nothing was farther than the truth. The pain subsided when the nurses gave me pain medication (which I hadn't taken for 9 months). But I was deteriorating quickly.
Two days after delivery, I could no longer walk. I was in so much pain, I'd crawl on the floor while caring for my daughter.
When it was time to go see my OB I called and said I could not sit in the waiting room, because I couldn't walk or sit. They made provisions for me to go immediately back to an examination room. My doctor prescribed something for depression, and said that she would recommend a pain specialist.
The details get very fuzzy after that. I know that there were several ER trips, a few 911 calls and a few visits to the pain specialist. I started blacking out if I stood up. The first time it happened, an ambulance was called and the paramedics thought that I had taken too much pain medication. There was another time at the ER where I had blacked out, and the doctor there said it was postpartum (something about my fluids fluctuating). We gave up calling anyone when I blacked out, any I resorted to having my mother help bath me and help care for my newborn. This went on for a good 6 weeks (and my the end of it, my muscle strength was gone as well).
A Brain Tumor Diagnosis - FINALLY!
How a Route 44 Sonic Limeaide and Paramedic Saved My Life
I remember laying in the bathtub (because the pain was slightly less in warm water, and there was literally nothing else I could do - I couldn't even see to watch television or read at that point. My family had completely given up taking me to doctors, or calling 911 when I blacked out. They had me scheduled to go to a rehab in a few days to rebuild muscle strength (even though no one still knew what was wrong with me). I agreed because I felt like such a burden (having my family take care of me and an infant at the same time).
But the last time I remember laying in the bathtub, I remember feeling the black out close in and just pleading with both of my parents to please please please just call an ambulance one more time because something was seriously wrong this time. I'd quit urinating that day. I confirmed I wasn't urinating anymore because I'd downed a 44 ounce Sonic Limeade in record time, and waited... and waited ...and waited....... without result. And then I started feeling the black out close in.
My parents eventually did call 911 (after I was unconscious). The same paramedics came out that came the first time I blacked out (the ones that thought I was OD'ing on pain medication). They actually saw me black out, and saw the way my eyes dilated and knew I either had epilepsy or a brain tumor. And from there, I was in good hands.
According to the surgeon, my CFS fluid shot all the way to the ceiling when they made a hole.
7 Surgeries in Two Years
My first surgery was unscheduled. My vision was completely obscured by the small dots you see when you black out. I couldn't even lift my head off a flat position without starting to loose consciousness. Something had to be done to relieve the pressure by the built up cerebral-spinal fluid. The surgeons weren't thrilled about having to do it, because they knew I'd be hospital bound (having an external device to drain my CFS fluid) until they could schedule the tumor resection surgery (which was at least a week away) and they didn't want me to loose any more muscle mass (or time with my baby).
My first surgery was a complete success in my eyes, though. I woke up with almost no pain! Well, it felt like someone knocked me in the head with a hammer, but comparatively speaking, I felt pain free. The surgeon later told me, that my cerebral-spinal fluid pressure was so great that the CFS fluid literally shot up to the ceiling in the operating room, when they made a hole in my head. After the surgery, I was also able to move around without blacking out (although getting up wasn't an option at the point because my muscles had deteriorated). I could also see again, and could read and journal in the ICU.
I had 6 more surgeries. The next one was to remove about 95% of the tumor. It was a 17 hour surgery. About 24 hours later I had an emergency surgery because my brain hemorrhaged. After that, I had to have my VP shut inserted into my abdomen, because the tumor had left too much damage for me to drain the CFS fluid on my own. Then I had to have a gold weight inserted in my eye-lid to help it close. Then I was scheduled to have the rest of the tumor remove (because some of it was inside the bone behind my left ear. Then I went back to have my facial nerve grafted to my tongue so that I could get a bit of facial movement back.
What Cranial Surgery Feels Like
Little Known Facts about Cranial Surgery
Cranial surgery is far scarier to think about, than to actually go through.
Did you know that the pain you feel after cranial surgery is actually minimal because there aren't a lot of pain receptors in your head? The pain I felt after my first surgery was due to the CFS pressure damage, not to the surgery itself. And I came out feeling fantastic after all my other cranial surgeries.
After my brain hemorrhaged, I had the most intense headache pain of my entire life (even worse than the hydrocephalus pressure). I remember the resident that was on duty that night frantically saying, "I have to call my boss..."
Then I remember an incision being made, and feeling a blissful relief of pressure and being pleasantly surprised at not feeling the incision (of course, I'm sure my pain medication was upped before then as well).
I don't ever remember seeing the resident's boss (my neurosurgeon) that night. I'd imagine he was still exhausted from the 17 hour surgery he completed on me no less than 12 hours earlier. My family said that when they saw him he said he didn't know what he could do for me, but to "Just pray."
Going in for a long cranial surgery? If you remember nothing else - DON'T FIGHT THE VENTILATOR!
Waking Up After Cranial Surgery
Can't See Straight, Can't Swallow, Can't Walk, Can't Hear
I was given some very sound advice by an RN in the ICU, prior to my 17 hour craniotomy. She said "Don't fight the ventilator when it's removed!" My first memory after surgery was of a struggle in my throat. I had no idea what was going on, but I remembered the advice and immediately relaxed all the muscles in my throat and chest - and the ventilator came out smoothly.
My surgery was over around midnight, and I woke up on my own around 8am the same morning. I couldn't make sense of what I was seeing (had extreme double vision), couldn't swallow, couldn't walk and could only hear out of one ear. I was completely disoriented - but incredibly happy, cutting up and making jokes with the RNs and dietitians that were coming in to check on me.
Books that Helped Me Cope and Heal
It was all about staying positive in the end, finding humor in the things that could have really gotten me down (like the bed pan) and finding things that I COULD DO (even when all I could do was lay there). And these were some of my favorite reads as a brain tumor patient.
About My Facial Paralysis
Since sometimes people are afraid to ask.
I am almost 100% back to the person I was prior to having my brain tumor removed. It took almost three years to get 100% back. Before my first craniotomy I lost the ability to walk, crawl and even sit up on my own. I also lost the ability to see due to hydrocaphelus or "water on the brain" that was causing extra pressure because the tumor was blocking the cerebroalspinal fluid from exiting my brain. To this day I still have a tube that runs from my brain to my abdomen to prevent hydrocaphelus.
The surgeries and removal of the tumor caused some other complications including the complete loss of hearing in my left ear and movement of the entire left side of my face (including my eye). However, the doctors fixed me right up by putting a gold weight in my left eyelid so that it would naturally close, and I have also had what's called a "Hypoglossal-facial nerve graft" where they connected my damaged facial nerve to my tongue nerve so that I am able to at least partially use the left side of my face and even kind of "forge" a full smile.
The only noticeable difference between me and everyone else is that I still mostly have a crooked smile. I have no problem talking about it, but no one ever comments on my crooked smile, except for doctors and kids. Doctors want to know if I have Bell's Palsey, or if it's an Ear Nose Throat doctor they are very curious about the details of the type of tumor I had, and what surgeon did such a good job giving me a gold weight in my eye lid.
Kids always ask me why my face is the way it is. I admire their candid curiosity and give them all the answers they want. I even let them touch the gold in my eyelid if they want to.
More about Hydrocephalus and Living with a VP Shunt
and Prenancy and Hydrocephalus
Since 2006 I've had hydrocephalus due to the damage left from the tumor and surgeries. I have a permanent VP Shunt that helps my brain drain cerebrospinal fluid.
Honestly, I can say in the last 5 years since I've had a VP Shunt my life is not much different than before.
Sometimes I have lightheaded-ness and dizziness or a tingling sensation on my limbs when I get up too fast or exert a lot of energy. I also gave birth to my second daughter naturally in 2010 (noticing a lot of tingling in my hands and feet and lightheadedness during labor). However, there were no complications and I was able to push and deliver naturally (without any drugs, a vacuum or even an epidural).
I must admit that getting information about pregnancy and hydrocephalus was somewhat difficult when I found out I was pregnant. My OBGYN seemed overly concerned about my condition, and my neurologist was equally unconcerned about my condition. The best resource I found to help me navigate through my pregnancy was the link below.
I try to keep my experiences like an open book in case they can help someone else.