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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... have DAILY headaches (even if they aren't severe).

...looking over your shoulder, or head movement causes a headache. constantly feel fatigued. have a constant ringing in one ear.

...your eye twitches randomly or frequently.

...caffeine causes one side of your face to start twitching. side of your face seems lazy. have random unexplainable shots of pain on various parts of your face and ear. 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. 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.

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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

Shaved Head, Ready For Cranial Surgery - Summer 2006

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)

Lemon Sized Brain Tumor MRI After Removal

Lemon Sized Brain Tumor MRI After Removal

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,