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One Brain Tumor Survivor's Story

Updated on November 16, 2012

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

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, 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.

Cranial Surgeries

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.

Questions or Comments?

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    • dwnovacek profile image

      dwnovacek 6 years ago

      What an inspiring story! I had no idea they they could connect a nerve in your tongue to a nerve in your face or use a gold weight in the way that they did. Amazing. So glad that the tumor is gone and you're recovering so well. I would imagine that your recovery was helped by your willingness to share your story with others. Thank you for sharing. Blessed by a Squid Angel!

    • TeacherSerenia profile image

      TeacherSerenia 6 years ago

      I know how you feel. Most people have no idea but I do. I too have had a craniotomy for a brain cyst. Only mine was a small cyst (1.5 cm by 1.5 cm - it was never as big as a lemon) but its location was in a dangerous place. Officially it was called a colloid cyst of the 3rd ventricle. I recovered well and have been symptom free for the last 3 years. I might write a lens about it one day.

    • Elle-Dee-Esse profile image

      Lynne Schroeder 6 years ago from Blue Mountains Australia

      What an amazing story of courage and survival.

    • blessedmomto7 profile image

      blessedmomto7 6 years ago

      Wow, what a story. Glad to hear you made a great recovery. Blessed by another squid angel.

    • Ann Hinds profile image

      Ann Hinds 6 years ago from So Cal

      I'm also blessing this lens because ins spite of the trauma and the struggle to get well, it is presented in a way that encourages others. It reminds us that we have much to be grateful for. The weight for the eye is an incredible surprise. There is so much that goes on that we don't know about. Yours is a truly inspiring story. Thanks

    • GonnaFly profile image

      Jeanette 6 years ago from Australia

      So glad to hear that you are well now. This is an encouraging story. Thanks for sharing.

    • profile image

      SnoopyGirl1 6 years ago

      Thank you for sharing your life and story with us! So glad you are well and can enjoy your beautiful family!

    • LissaKlar LM profile image

      LissaKlar LM 6 years ago

      What a blessing that you are well and working again. You must be very brave! Great story.

    • Ecolicious LM profile image

      Penny Pincher G 6 years ago

      I think overall many of us are scared to ask because we don't want to know how easily this can happen to us or we don't know how to ask or we think it isn't any of our business or we worry about making you feel uncomfortable. Instead we stare or look away wishing somehow we will magically and suddenly know the answer. It isn't right, but it is. I think when someone as open, honest and down to earth as you shares your story you break down those worries, those rude walls, and we are more willing to ask you why you have a crooked smile. I'm so happy you are tumor free and able to be with your family. Squid Blessing!

    • profile image

      Pete Schultz 6 years ago

      Hooray for you. I have a friend who is a facial cancer survivor who deals with the loss of some facial controls very well, and has a great sense of humor about it. You appear to handle your situation with equal grace. Congrats.

    • profile image

      anonymous 6 years ago

      Congratulations on being featured by the SquidTeam's Best of Standout RocketMoms

    • joanv334 profile image

      joanv334 6 years ago

      Hello, nice to meet you!

    • Lee Hansen profile image

      Lee Hansen 6 years ago from Vermont

      You have shared an amazing story with us here. You're one strong and courageous woman - your children have a powerful mama role model!

    • MicaK1 profile image

      MicaK1 6 years ago

      What a journey. I love your zest for life! Your smile showed so much love. I'm so glad I checked your profile after you left a comment on my lens.

    • Amy Fricano profile image

      Amy Fricano 6 years ago from WNY

      Glad to find the purple star here. Very special lens. Thank you.

    • profile image

      MarkFashionista 5 years ago

      You are an inspiration to all mothers.. a strong and beautiful woman! Beautiful lens, thanks for sharing your story!

    • WindyWintersHubs profile image

      WindyWintersHubs 5 years ago from Vancouver Island, BC

      Congrats on your Purple Star! You are very courageous and inspirational. Thank you for sharing your story. :)

    • marckq profile image

      marckq 5 years ago

      It must have been very difficult for you, but I admire your courage and the sincere desire to help others by sharing your story and providing information about your experience. You are amazing!

    • darciefrench lm profile image

      darciefrench lm 5 years ago

      Your story is amazing and you are beautiful - I love that we have met on Squidoo. You're a real trooper!

    • norma-holt profile image

      norma-holt 5 years ago

      This lens is invaluiable for its candour and startling information aside from the beautiful story and passion that shines through. Your experience will help many to seek early diagnosis if any of those symptoms persist. *-*Blessed*-* and featured on Sprinkled with Stardust - Health and Medical and also on Brain Matters.

    • CHalloran LM profile image

      CHalloran LM 5 years ago

      Amazing story and very encouraging for a lot of people. When we have life threatening illnesses it is hard to encourage ourselves to not give up and keep our spirits high. But you are a very good example for a lot of people. Best of luck for you and sending positive thoughts your way.

    • debnet profile image

      Debbie 5 years ago from England

      From one brain tumour survivor to another, I applaud you. I understand. Blessed by a Squid Angel ;)

    • profile image

      anonymous 5 years ago

      Thank you for sharing your personal journey through your brain tumor and surgery. You are an inspiration! I wish you many years of health and happiness!

    • athomemomblog profile image

      Genesis Davies 4 years ago from Guatemala

      I've had two friends with brain tumors and have sent your lens on to them. Thank, you for sharing!

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @athomemomblog: Well if you know two people with a brain tumor... Statistically speaking, you shouldn't have one!!!! :) So that's good news!! Thanks for visiting!

    • Lady Lorelei profile image

      Lorelei Cohen 4 years ago from Canada

      You are amazing girl. I know doctors can be neglectful of listening to their patients but you are a super star for managing to survive their bungling. The very best of wishes to you in your future. May it be all bright happiness and glistening magical wishes come true.

    • pumpum profile image

      pumpum 4 years ago

      Amazing story and you are very brave,my dear.

    • profile image

      anonymous 4 years ago

      Amazing story

    • profile image

      RinchenChodron 4 years ago

      Wow , what a story. Glad you are doing alright. And the kids are fine.

    • Linda BookLady profile image

      Linda Jo Martin 4 years ago from Post Falls, Idaho, USA

      That was intense! I'm so glad you've recovered so well. Thanks for sharing the story with us. Blessed.

    • profile image

      anonymous 4 years ago

      Your story is so like mine !!! =} I am 28 years out from my surgery which was two weeks after the birth of our second son, the amazing thing is I worked at that time with a woman who had two sons and an acoustic neuroma surgery, and I have an amazing friend who I met through my journey with the same tumour also.

      Keep up the good work, and know there are lots of us who care.

    • chezchazz profile image

      Chazz 4 years ago from New York

      We have a friend who had a similar experience, surgery and facial effects. My sister-in-law had a grapefruit-sized tumor such as this for some 12+ years before it was diagnosed. She opted for an experimental radiation treatment at Stanford University which successfully shrank the tumor about 5 years ago. So far so good - she continues to be monitored and has no hearing at all in one ear from it, but so far she has been able to manage it without the surgery. This is an incredible story and I admire your bravery and candor and thank you for sharing it. Blessed and featured on "Still Wing-ing it on Squidoo."

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @chezchazz: It's always nice to hear from another person with a similar story. Healthcare can do so much with God's help.

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @anonymous: There are no coincidences in life. God places everyone in our lives at a time and place for a reason, whether we see it or not. :)

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @pumpum: Not sure if bravery counts when you have no choice, but thank you :)

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @pumpum: Not sure if bravery counts when you have no choice, but thank you :)

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @pumpum: Not sure if bravery counts when you have no choice, but thank you :)

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @pumpum: Not sure if bravery counts when you have no choice, but thank you :)

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @Lady Lorelei: Thankyou Ladymermaid.

    • Allison Whitehead profile image

      Allison Whitehead 4 years ago

      What a read. And what an experience for you. So glad you finally got the diagnosis you needed, but frustrating that it took so long. I am blessing this lens... and you too, with good wishes for a healthy future. All the best :)

    • profile image

      anonymous 4 years ago

      Shauna, what was the eye twitching like?

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @anonymous: It would be brought on by stress a lot of times, and also by drinking caffeine. Sometimes my left eye would twitch for no reason at all. It was much like a rapid involuntary closing of my eyelid.

    • profile image

      anonymous 4 years ago

      @shauna1934: Did they say this was related to the brain tumor or more a direct result of stress itself? My eyelid has been twitching occasionally, but I have been very stressed lately.

    • shauna1934 profile image
      Author

      shauna1934 4 years ago

      @anonymous: both. It was the tumor's location, and stress exaggerated the twitching. Lazy eye can also be a symptom of a brain tumor (depending on location), If that's the only symptom you have I wouldn't be so concerned about it. But if you also have headaches, ringing in your ear, or other symptoms, I'd go have it checked out.

    • profile image

      anonymous 4 years ago

      @shauna1934: you're right, i will. i have had pressure in the back of my head, and very infrequent ringing in the air that lasts for seconds. but all of these only started after some extremely stressful events in my life, but i will get it checked out. thank you for taking the time to respond, you are a very brave person battling with this, and clearly very strong!

    • Craftypicks profile image

      Lori Green 3 years ago from Las Vegas

      My daughter has one.

    • profile image

      anonymous 3 years ago

      I have just been diagnosed with both a colloid cyst and an acoustic neuroma. I kept having strange sensations in my head and a MRI was done to rule out a tumor. I am now awaiting an appointment at a larger medical center for options.

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      sabrina-stevensmcewen 3 years ago

      Wow! I feel like you just told my story...except that I had three babies (two pregnancies) with the "lemon" as we like to call it. My surgeries were late October 2013 and I still have facial paralysis. I am just amazed at your strength!

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      Bianaaaaa 2 years ago

      Hi shauna. First id like to say that you're very brave and I'm so happy that everything is okay! But I have a few questions because I have constant headaches but that's the only symptom so far. I'm 14 and very worried.

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      Hope Kulin 17 months ago from Tampa, FL

      Hi Shauna, from one brain cancer survivor to another let me say congrats! It seems that having kids helps us get the diagnosis (my daughter was 3, but they believe it was growing for over 5 years). I know there are many comments but did want to add a little as well. I noticed your tumor was on the left side of the brain, mine was on the right. We refer to mine as the golf ball hole in mom's brain because mine was primary and when they removed it there was no decompression they just took out the matter that was infected. Point being, I never had a single headache and no physical symptoms at all. I actually wrote a hub 4 days after my return from the hospital that I update yearly where I thought everything was fine due to not having the physical symptoms. My diagnosis are all mental due to the side of the brain it is on. Funny how the brain works huh? Good luck and God Bless.

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      Philippa vincent 4 months ago

      Wow. Your an amazing person. Heads up to you. Just gone a year ago I finally was diagnosed with a 5.5cm tumor. After 10 years of debilitating illnesses daily headaches deathly tiredNess feeling 99 carrying a coffin on my back my tumor was sitting on the nerve bundle and had become so big it caused an uncul herniation. When the brain goes down into the spinal cord. I share my story as part of my calling to help people to take ownership of their health. Having been fobbed off by doctors as being childbirth tiredness premenopause getting older depression declined a scan as not having enough symptoms and told to take more meficine I reached the threshold of having my toes inching over the threshold to the otherside. But thanks to 3 very gifted individuals my new doctor who I'd just become a patient of 5 weeks earlier getting me a scan in 2 days time the radiologist who picked up my scan immediately after the scan the neuro surgeon who visited me at the end of the days surgery on a Friday and said we don't do this but I'm bringing in a team tomorrow saturday to operate cause you won't be here on Monday. All well and ends well.

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      Hope Kulin 4 months ago from Tampa, FL

      Philippa,

      Thank you for the kind words, but let me assure you that there have been many many days that I would like a do over, actually there are about three years of my rehab that I would like to have an opportunity to do over again! I share my story in hopes that others can learn from my mistakes, and there are quite a few!

      I am sorry you had such a rough time with doctors but you are correct. You need to make sure that you take your care into control through all stages of the therapy. Doctors are people too and make mistakes!

      Rebecca

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