I am a 46 year old, single mother of 5 children expecting my first grandchild any time. I have worked since I was 12 and have always been able to support myself and children - until now.
BEFORE MY DIAGNOSIS
The majority of my time and life have revolved around my children and have always enjoyed being active with passions ranging from boating, gardening, painting, volunteering, swimming, biking, boxing, crocheting, baking and writing. With my soul poured into the lives of those most important around me, I never really found time for much else other than family, work and school. Up until last week, I was in school full time working on my Bachelor's degree in software engineering.
I was in a terrible car accident in May of 2013 and suffered from a serious head trauma and concussion that seemed to leave my brain in a constant state of fog and confusion. Believing that it was simply taking a long time for my brain to heal, I didn't worry and the doctors found no medical basis for it. So I continued with work and school, struggling to maintain and keep up as all mental effort took me 5-10 times longer than before the accident.
Then I awoke on the morning of June 17, 2014 with a battery of issues: vertigo, balance and coordination issues, ringing in my ears, constant headache and pressure behind my eyes and in my ears, light sensitivity, visual disturbances (double vision, blurry vision and problems focusing my eyes), numbness and tingling in my extremities, nausea and general muscle fatigue and weakness. Thinking that this was a recurrence of my symptoms from the car accident, I returned to my chiropractor (many times), my general doctor, a neurologist, and ENT. I had blood work done, ultrasound, hearing tests, nose sprays, anti-biotics and an MRI of my neck and brain. MRIs we're never performed after the car accident. The doctors didn't deem it necessary and the person who hit my car had no insurance leaving me with all the medical bills to pay.
So the doctors said all tests came back fine, including the MRI which showed a 1cm pineal cyst in the center of my brain. Hmmmm. Sounded fishy to me.
I researched pineal cysts online and discovered that though the occurrence of these cysts is not unheard of, experiencing symptoms is extremely rare and quite often overlooked every day by doctors and neurologists. Thinking back over the past 12 years, I can finally attribute some of my unexplained symptoms to this cyst, which can be present from birth and then become "activated" and begin growing.
PINEAL CYST MRI IMAGE
Not much is known about the cause of these cysts except that they occur primarily in women, are generally benign but will continue to grow and create increasing medical issues, such as hydrocephalus, blindness, seizures and/or black outs, dementia, difficulty walking and staying awake. There is no known remedy for this other than brain surgery. Since the cyst is located in the center of the brain in the Pineal Region, it is extremely difficult to reach and there are only two neurosurgeons in the country I have found who perform the surgery.
PINEAL CYST SYMPTOMS (Mine are checked)
Diplopia (double vision) ✓
Blurred vision ✓
Greying or blacking out of vision
Coloured or black floating spots
Pain looking upward
Sensitivity to light ✓
Pressure & Pain behind the eyes ✓
Pain in eyes ✓
Eye Strain ✓
Feeling of rubber band around the head ✓
Pressure in forehead ✓
Pressure in head ✓
Memory problems/brain fog ✓
Frequent Headaches ✓
Popping/crackling sounds in head
Jaw pain ✓
Bilateral ear pain ✓
Pressure in ears ✓
Ringing sounds ✓
Temporary hearing loss
Sensitivity to sounds ✓
Numbness & Tingling, commonly in hands/arms/legs/feet ✓
Sleep disturbances ✓
Balance & co-ordination issues (gait) ✓
Muscle spasms ✓
MY UPCOMING SURGERY
I'm very protective of my brain and as this is such a complicated surgery, I have selected Dr. Hrayr Shahinian at the Skull Base Institute in California. He pioneered the endoscopic procedure for removal of this cyst 20 years ago and has performed 3000 of these surgeries specifically with minimal invasiveness and a 98.5% success rate. The incision is the size of a dime and the doctor uses the natural pathway between the brain's two hemispheres to access the cyst, eliminating unnecessary exposure of the brain and no damage to the brain matter itself.
Surgery is scheduled for 10/28/14. This miraculous procedure will allow me to leave the hospital within 48 hours after surgery and ready to return home to Florida a few days later.
Video of Pineal Cyst Removal Surgery
THE RECOVERY PROCESS
Due to the constant pressure in my head from the cyst which affects my vision and cognitive capabilities, I have been home on disability since June 17th and had to finally withdraw from school until after I recover. I hope to be back in the saddle by mid December if all goes well. Vision and cognitive function will be a bit slower to return to normal, but the issues resulting from the pressure in my head should be gone almost immediately.
As this is a rare condition and only two surgeons in the US are experienced in its removal, the doctor is considered out of network for my health insurance. My costs for the surgery are $45K, which is due by 9/28/14 (1 month prior to my scheduled surgery). This poses a huge financial burden on me as I have no savings, no assets, no parents ( both died of cancer in the past few years) and no way to pay for this much needed surgery.
If unable to move forward with the surgery, I will continue to be disabled, my health will deteriorate with some symptoms becoming irreversible, unable to care for my children or myself and my education will stay on hold. I have witnessed miracles in my lifetime and know first hand the power of people and believe that together we can make this happen.
PINEAL CYST AWARENESS
I was greatly disturbed to discover that my doctor had the information about the pineal cyst a year ago. My previous doctors (10+ years ago) probably also had this information. What I've found in my experience, research and talking to people out there who are also suffering with these symptoms is that there is a pandemic blindness to this condition. The majority of doctors, neurologists and neurosurgeons insist that the cyst does not cause symptoms because it is so rare and pursue every other possible cause including psychiatric illness. These people are directed in endless circles and mazes with no answers and no hope of relief.
I know how frustrating this is and to live with a subpar quality of life is merely surviving. Through this experience and process I would like to raise awareness in the medical community and for others like me who have been fortunate enough to at least find the solution to their medical phenomenon.
Much thanks to everyone in advance for your help and support. My family and I are eternally grateful. Feel free to reach out to me any time throughout this process. I will try to be diligent in keeping everyone up to date on my progress over the next 6-12 months as we lead up to the surgery, struggle through recovery and begin the road back to "normal".
P.S. I am offering to color my hair any color of the rainbow for anyone donating at the $500 level and will shave my head for the $10K donation level. May as well have fun with this!
Michelle Goldman & Family
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