My Pineal Cyst
Donation protected
Hello, my name is Amy. Nearly one year ago I was diagnosed with an 11mm Pineal Cyst, in the dead centre of my brain.
Taking it back to the beginning, before my MRI and diagnostic, my symptoms consisted of mild yet continuous vertigo and extremely dull (non daily) headaches. I never once considered that these symptoms were related to neurological issues.
After my diagnostic, I was participating in regular blood tests and hoping for a quick solution. Every result displayed that I was surprisingly “healthy”, even though I certainly didn’t feel it.
I jumped from GP to GP, searching for answers, advice and overall, what it could be. But rather than understanding my symptoms, all of the doctors were quick to advise me that I was suffering from depression and anxiety, I mean seriously?
I remember thinking, as a result of my GP not having answers, I was diagnosed with depression and or anxiety?
After persistence, my doctor then turned to into google (which my GP suggested me not to do) - and there you go, “neurological” was linked.
I instantly requested (from one of my many GP’s) for a brain MRI, which was booked for the following week. My results came back in shortly after, and there it was worded “Incidental finding 11mm Pineal Cyst”.
My GP then referred me to a neurologist which was booked out for the next two months.
With my vision becoming blurry and headaches becoming increasingly sharp, the thought of waiting for two months stressed me out. My hearing became harder and even electric-like, I was experiencing daily head pressure (which is the worst symptom I deal with to date), and lastly, short term memory was getting fuzzy.
Two dark weeks later, I conducted research and found a private Facebook group dedicated to like-minded people also suffering from a “pineal” cyst. I found that all these people have extremely similar or mostly the same symptoms that I had.
Just as I begun to feel relieved and not alone, I then discovered that there’s no cure except surgery.
With anxiety and nerves hovering over my shoulder, I finally met with the specialist.
She advised me in the meeting that yes, I have a cyst (benign cyst) and no, my problem does not carry any Symptoms except headache.
Emotions started to down me at this stage. I am a extremely healthy person who looks after myself, and suddenly I felt like I was trapped in a dark hole suffering such excruciating symptoms, with no one to turn too or understand me. I didn’t know what was going to happen to my body and what new symptoms I might incur.
Month’s had past. Symptoms has worsened and I knew I had to get this thing out - even if I did have to undergo surgery. I didn’t care, it didn’t scare me.
I booked in to see Dr Charlie Teo on September 19th. There was a lot discussion revolving around this particular surgeon in the Facebook group I mentioned earlier. I took Mum and Dad (for support of course) as this was just becoming all too real for my 23 year old self.
We arrived at Dr teos office in Sydney and waiting a long four hours to see him (as you can imagine, I was going mad). Once he finally called my name, we sat down and discussed about what I experiencing.
He gave me the facts of surgery and told me all that could go wrong, but he also mentioned all that can go right. Dr Teo also spoke about how other doctors/ neurologist/neurosurgeons across Sydney and infact across the world will say that my symptoms are not related. But, he said “They are related”, and he could prove it through patients he operated on with the exact same cyst in the same location in the brain.
I cried and I was so happy and relived that someone believed me and believed that what I’m experiencing, immediately I said, “Where do I sign?”.
Dr Teo advised me to discuss the costs with the receptionist after the meeting, so I shook his hand and spoke with the receptionist. She advised me that the surgery was going to cost $100K without private health, and $45K with private health.
My face dropped and I went numb.
Following the meeting, I immediately got myself into a private fund. I have to wait out the 12 month waiting period, which is up in August 2017.
Since becoming a member of Private Heath, I try on the daily to convince myself that I’m okay. I’m trying to live out my life normally and hope my symptoms don’t worsen, but they do.
Although I may look “healthy” and “pretty normal”, I’m far from feeling normal.
It’s now May 2017 and I’ve managed to make it 6 months and wanted to make it another 12 months before I had surgery as I have just purchased my first home, I had to move on and not disable my life and I think I’ve managed to do the best I can but now I’ve realized I have pushed my limits. In a result of “living normally” My cyst has caused extreme pressure in my brain like you wouldn’t imagine, I wake up with chronic fatigue every morning, at the gym I have had to stop myself from running/sprinting as this causes too much pressure, and in most cases my head feels like it is going to explode, to bend over and tie my shoes it feels like the blood circulation to my head is cut off so this now has become a task, laying on a pillow or even having my head pressed against something creates excruciating pain it's like having a pole going through my temples and then the list goes on .
I will admit, I have a couple of good days. But then it’s quickly interrupted with a major pressure headache, sharp shooting pains that jab from temple to temple and more pains but just can’t seem to remember what they are : (Thanks short term memory).
Im desperate for the old me, I want my old self back. This won’t just better my life, but will also better the ones closest to me. These people have to support me on my awful days, witness what I go through, watch me cry and hear me complain about the pain.
I’ve realised this month that I cannot wait any longer. I really need your help and support.
I would like to stress that this is also an educational and personal post for people that are often told their symptoms are a sign of anxiety or depression.
Don’t take that as an excuse. If you know your body well, listen to it and do whatever you have to do to find an answer, like me☺.
Lastly never judge someone because you may never know, they may have a pineal cyst in their brain too. I really appreciate the time you have taken to read my incredibly raw and personal story.
Lots of love
Amy x x
Taking it back to the beginning, before my MRI and diagnostic, my symptoms consisted of mild yet continuous vertigo and extremely dull (non daily) headaches. I never once considered that these symptoms were related to neurological issues.
After my diagnostic, I was participating in regular blood tests and hoping for a quick solution. Every result displayed that I was surprisingly “healthy”, even though I certainly didn’t feel it.
I jumped from GP to GP, searching for answers, advice and overall, what it could be. But rather than understanding my symptoms, all of the doctors were quick to advise me that I was suffering from depression and anxiety, I mean seriously?
I remember thinking, as a result of my GP not having answers, I was diagnosed with depression and or anxiety?
After persistence, my doctor then turned to into google (which my GP suggested me not to do) - and there you go, “neurological” was linked.
I instantly requested (from one of my many GP’s) for a brain MRI, which was booked for the following week. My results came back in shortly after, and there it was worded “Incidental finding 11mm Pineal Cyst”.
My GP then referred me to a neurologist which was booked out for the next two months.
With my vision becoming blurry and headaches becoming increasingly sharp, the thought of waiting for two months stressed me out. My hearing became harder and even electric-like, I was experiencing daily head pressure (which is the worst symptom I deal with to date), and lastly, short term memory was getting fuzzy.
Two dark weeks later, I conducted research and found a private Facebook group dedicated to like-minded people also suffering from a “pineal” cyst. I found that all these people have extremely similar or mostly the same symptoms that I had.
Just as I begun to feel relieved and not alone, I then discovered that there’s no cure except surgery.
With anxiety and nerves hovering over my shoulder, I finally met with the specialist.
She advised me in the meeting that yes, I have a cyst (benign cyst) and no, my problem does not carry any Symptoms except headache.
Emotions started to down me at this stage. I am a extremely healthy person who looks after myself, and suddenly I felt like I was trapped in a dark hole suffering such excruciating symptoms, with no one to turn too or understand me. I didn’t know what was going to happen to my body and what new symptoms I might incur.
Month’s had past. Symptoms has worsened and I knew I had to get this thing out - even if I did have to undergo surgery. I didn’t care, it didn’t scare me.
I booked in to see Dr Charlie Teo on September 19th. There was a lot discussion revolving around this particular surgeon in the Facebook group I mentioned earlier. I took Mum and Dad (for support of course) as this was just becoming all too real for my 23 year old self.
We arrived at Dr teos office in Sydney and waiting a long four hours to see him (as you can imagine, I was going mad). Once he finally called my name, we sat down and discussed about what I experiencing.
He gave me the facts of surgery and told me all that could go wrong, but he also mentioned all that can go right. Dr Teo also spoke about how other doctors/ neurologist/neurosurgeons across Sydney and infact across the world will say that my symptoms are not related. But, he said “They are related”, and he could prove it through patients he operated on with the exact same cyst in the same location in the brain.
I cried and I was so happy and relived that someone believed me and believed that what I’m experiencing, immediately I said, “Where do I sign?”.
Dr Teo advised me to discuss the costs with the receptionist after the meeting, so I shook his hand and spoke with the receptionist. She advised me that the surgery was going to cost $100K without private health, and $45K with private health.
My face dropped and I went numb.
Following the meeting, I immediately got myself into a private fund. I have to wait out the 12 month waiting period, which is up in August 2017.
Since becoming a member of Private Heath, I try on the daily to convince myself that I’m okay. I’m trying to live out my life normally and hope my symptoms don’t worsen, but they do.
Although I may look “healthy” and “pretty normal”, I’m far from feeling normal.
It’s now May 2017 and I’ve managed to make it 6 months and wanted to make it another 12 months before I had surgery as I have just purchased my first home, I had to move on and not disable my life and I think I’ve managed to do the best I can but now I’ve realized I have pushed my limits. In a result of “living normally” My cyst has caused extreme pressure in my brain like you wouldn’t imagine, I wake up with chronic fatigue every morning, at the gym I have had to stop myself from running/sprinting as this causes too much pressure, and in most cases my head feels like it is going to explode, to bend over and tie my shoes it feels like the blood circulation to my head is cut off so this now has become a task, laying on a pillow or even having my head pressed against something creates excruciating pain it's like having a pole going through my temples and then the list goes on .
I will admit, I have a couple of good days. But then it’s quickly interrupted with a major pressure headache, sharp shooting pains that jab from temple to temple and more pains but just can’t seem to remember what they are : (Thanks short term memory).
Im desperate for the old me, I want my old self back. This won’t just better my life, but will also better the ones closest to me. These people have to support me on my awful days, witness what I go through, watch me cry and hear me complain about the pain.
I’ve realised this month that I cannot wait any longer. I really need your help and support.
I would like to stress that this is also an educational and personal post for people that are often told their symptoms are a sign of anxiety or depression.
Don’t take that as an excuse. If you know your body well, listen to it and do whatever you have to do to find an answer, like me☺.
Lastly never judge someone because you may never know, they may have a pineal cyst in their brain too. I really appreciate the time you have taken to read my incredibly raw and personal story.
Lots of love
Amy x x
Organizer
Amy Flack
Organizer
Emu Plains NSW
