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Patient Stories
This Months Featured Story
Ruth Rudderow | Surgery November 2017 - Dr. Dong Kim
My Pineal Gland Cyst Journey started in the early 1990s. After bloodwork showed high prolactin levels, my doctor sent me for an MRI which showed a pineal gland cyst. I was told it was “small and don’t worry about it”. So, I didn’t give it a second thought.
Through the years, I have had a number of medical issues that could not be explained such as Trigeminal Neuralgia. That diagnosis led to an eleven-year journey of “you have MS” – “you don’t have MS” – “I think you have MS” – “I don’t think you have MS”. The four different neurologists that I consulted could not give a definitive ruling on whether I had MS. My MRI showed brain lesions but the spinal tap was good. The fifth neurologist I consulted said that I did not have MS, so I am going with that diagnosis (white spots on an MRI can also be from migraines which I have had since I was 18). I also had facial numbness and tingling in my hands and feet which was just chalked up as nerve damage from the Trigeminal Neuralgia. Turns out people who have a pineal gland cyst have a higher incidence of Trigeminal Neuralgia and are frequently misdiagnosed with MS!
A few years ago, I started have some cognitive and vertigo issues which were attributed to aging as all the medical testing came back fine - still no reference to that nasty cyst in my brain! This was a bit distressing as there is a history of Alzheimer’s Disease in my family. Turns out people who have a pineal gland cyst usually have cognitive and vertigo issues!In addition to the occasion migraine, I have always had a lot of headaches. In December, 2016, I realized that I had had a headache for a week. Not a bad headache, just a dull pressure feeling. The headaches continued daily and started to increase in intensity, along with pain in my ears. I also noticed that the mild vertigo that I experience was no longer mild. My primary care physician chalked it up to allergies and put me on an over the counter medication. After trying that for a month and having no relief, I returned to the doctor but this time, I came prepared with a list of all the medical issues and symptoms that I was having. After reviewing this information, she ordered an MRI of my head as most of my symptoms were head related. Unfortunately, there were no records of the first MRI to do a comparison but the size was now considered large (0.7 cm X 1.6 cm). The doctor who read the film suggested that I return in a year for a follow-up MRI. Fortunately, my primary care physician did not follow that suggestion but instead told me to see a neurosurgeon. After doing research, I determined that Dr. Dong Kim was the right fit for me. Since having surgery on November 8, 2017, most of my symptoms are improved or eliminated. The procedure has been a life changer! I feel better than I have in years and am looking forward to a much-improved future.
Ruth Rudderow | January 2018
Through the years, I have had a number of medical issues that could not be explained such as Trigeminal Neuralgia. That diagnosis led to an eleven-year journey of “you have MS” – “you don’t have MS” – “I think you have MS” – “I don’t think you have MS”. The four different neurologists that I consulted could not give a definitive ruling on whether I had MS. My MRI showed brain lesions but the spinal tap was good. The fifth neurologist I consulted said that I did not have MS, so I am going with that diagnosis (white spots on an MRI can also be from migraines which I have had since I was 18). I also had facial numbness and tingling in my hands and feet which was just chalked up as nerve damage from the Trigeminal Neuralgia. Turns out people who have a pineal gland cyst have a higher incidence of Trigeminal Neuralgia and are frequently misdiagnosed with MS!
A few years ago, I started have some cognitive and vertigo issues which were attributed to aging as all the medical testing came back fine - still no reference to that nasty cyst in my brain! This was a bit distressing as there is a history of Alzheimer’s Disease in my family. Turns out people who have a pineal gland cyst usually have cognitive and vertigo issues!In addition to the occasion migraine, I have always had a lot of headaches. In December, 2016, I realized that I had had a headache for a week. Not a bad headache, just a dull pressure feeling. The headaches continued daily and started to increase in intensity, along with pain in my ears. I also noticed that the mild vertigo that I experience was no longer mild. My primary care physician chalked it up to allergies and put me on an over the counter medication. After trying that for a month and having no relief, I returned to the doctor but this time, I came prepared with a list of all the medical issues and symptoms that I was having. After reviewing this information, she ordered an MRI of my head as most of my symptoms were head related. Unfortunately, there were no records of the first MRI to do a comparison but the size was now considered large (0.7 cm X 1.6 cm). The doctor who read the film suggested that I return in a year for a follow-up MRI. Fortunately, my primary care physician did not follow that suggestion but instead told me to see a neurosurgeon. After doing research, I determined that Dr. Dong Kim was the right fit for me. Since having surgery on November 8, 2017, most of my symptoms are improved or eliminated. The procedure has been a life changer! I feel better than I have in years and am looking forward to a much-improved future.
Ruth Rudderow | January 2018
Jo Warren | Surgery August 2017 - Prof. Charlie Teo
September 2013 started out full of the excitement of untold potential. I had just moved in to a new apartment with my partner and I was full of excitement at the anticipation of setting up home together for the first time. On the second Saturday in our new home, I pottered around the apartment plumping up soft furnishings and rearranging ornaments that my partner had haphazardly placed on the book shelf. As the day drew on armed with cleaning products I moved into the main bedroom to see what needed to be done. I remember looking at a smudge on the wardrobe mirror. As I turned to pick up a bottle of window cleaner from the bedside table, without warning and as fast as lightening I was hit by excruciating pain. It was like my head had collided with a freight train. The pain emanated from a single point on the left side of my forehead and was accompanied by a sharp burning pain drilling through my left eye. I remember rocking backwards and forwards, trying to shake away the pain. I rushed to the bathroom cabinet to grab some ibuprofen tablets. I waited for the pain to ease but the tablets didn’t take effect! The pain was relentless, I lay down on the bed but it brought no relief, restlessly I tossed and turned. After about 50 minutes the pain started to ease and I was left with an intense feeling that my brain was bruised and swollen. On the Monday morning I went straight round to see my GP. She advised that I most likely was suffering from a rare condition called cluster headaches. The bruised feeling along with extreme fatigue lingered like a sickly smell for 3 days.
Without fail for the next 4 years I continued to get attacks every two to four weeks apart. The onset was always early evening or early in the morning. Each attack was violently painful and was always followed by days of extreme fatigue. At times the pain was so server I would bite down on a pillow or rolled up towel to suppress my screams. I was prescribed medication after medication to no avail, nothing brought relief! I changed doctors several times in the hope a solution would be found. In 2015 I started to see a neurologist. A few new theories were thrown around maybe it’s Trigeminal Neuralgia, maybe it’s Occipital Migraine. By mid-2015 it seemed that migraine was the final consensus. This diagnoses never sat well with me, having watched my brother suffered migraine as a teenager my headaches didn't follow suit.
For the years that followed I was tested for an array of autoimmune diseases, epilepsy, mini stroke, but the tests would always come back clear and I continued to be treated for migraine. I started to lose count of how many different medications I had tried. During this time I started to experience additional symptoms on top of the headaches! Poor sleep, muscle spasming and twitching, unexplained vomiting, blurred vision, urgency to pee, memory recall issues, red hot burning pain in my left arm. I had two bad falls where my left leg just gave way. The fatigue was taking its toll and I started to withdraw from social activities. I was either too tired or scared I would have an attack and would need to lock myself away in a bathroom and suppress my screams. By early 2016 I was suffering extreme fatigue 24/7 and in December that year I had an episode of loss of vision for about 40 minutes. I saw an eye surgeon and was told I had a retinal tear in each eye, 10 minutes of laser surgery and it was all fixed, however she felt my loss of vision and other symptoms were brain related not eye related. On the eye surgeons recommendation I went back to my neurologist and had another MRI. It was only then I was told I had a 14mm x 10mm Pineal Cyst and that it was an incidental finding and was of no significance! I was later to learn that the cyst had been present on an early scan but it had not been reported on. Shortly after I was given a referral to see Professor Charlie Teo for a second opinion. As I sat in his waiting room I felt sure he would tell me I was wasting his time and that he had sicker people than me to see! You get so used to being told it's nothing to worry about. I instantly liked his open honest nature. Much to my surprise Charlie offered me surgery. He explained the risks involved and advised if my quality of life was being affected by my symptoms and it was stopping me from doing the things I loved, then that was the time to have surgery! I knew in that moment this was something I needed to do if I was to have any chance of my old life back! The next few months were torturous, the rest of my medical team believed surgery was too risky and that it wouldn't help me anyway. The upfront quote for this surgery was $100,000, all this to contend with, and all the while my health was rapidly declining. I was incredibly fortunate to have 4 family members offer to pay for my surgery by splitting the cost between them. I will be forever grateful to them, there are no words to express this kind of gratitude! I'm a very pragmatic person and if I'm honest very stubborn too, so once I had thought it all through I knew I had to drown out the noise of other people opinions and book the surgery. My main objectives leading up to surgery were to make sure all of my affairs were in order and to make it to the end of each day.
28.08.2017 The Day of Surgery
I remember feeling really calm going in to surgery, I had been struggling for so long I didn't really have any excess energy left to squander on worrying. The last thing I remember thinking as I was going under was at least I'm going to have a really deep sleep for the first time in 4 years! On waking up from surgery I instantly knew I had made the right decision. The pressure in my head was gone and I was able to move my right eye freely and see clearly again! Whilst surgery may not be the right path for everyone and for some it brings a whole new set of challenges, I have been so very lucky that my recovery has gone from strength to strength. Recovery takes time and the early days can be a little rough. You have to listen to your body, but for the most part I am back living a very active and fulfilling life.
Life becomes two very distinct chapters before brain surgery and after brain surgery. In the days and months that followed the gravity of my situation hit home. I had major brain surgery and I am here to tell the tale! As I write this I hold back tears of grief and tears of joy. Grief for all the years lost to this illness and joy that I am now well again! I have a new found clarity of life, colours seem so vivid now, blues are a little richer and greens a little lusher. Smells are sweeter, food tastier and friendships new and old so much stronger.
Special Thanks to my brother Adrian, Jody his beautiful wife and my sister in laws parents for making this surgery possible.
Joanne Warren | August 2018
Without fail for the next 4 years I continued to get attacks every two to four weeks apart. The onset was always early evening or early in the morning. Each attack was violently painful and was always followed by days of extreme fatigue. At times the pain was so server I would bite down on a pillow or rolled up towel to suppress my screams. I was prescribed medication after medication to no avail, nothing brought relief! I changed doctors several times in the hope a solution would be found. In 2015 I started to see a neurologist. A few new theories were thrown around maybe it’s Trigeminal Neuralgia, maybe it’s Occipital Migraine. By mid-2015 it seemed that migraine was the final consensus. This diagnoses never sat well with me, having watched my brother suffered migraine as a teenager my headaches didn't follow suit.
For the years that followed I was tested for an array of autoimmune diseases, epilepsy, mini stroke, but the tests would always come back clear and I continued to be treated for migraine. I started to lose count of how many different medications I had tried. During this time I started to experience additional symptoms on top of the headaches! Poor sleep, muscle spasming and twitching, unexplained vomiting, blurred vision, urgency to pee, memory recall issues, red hot burning pain in my left arm. I had two bad falls where my left leg just gave way. The fatigue was taking its toll and I started to withdraw from social activities. I was either too tired or scared I would have an attack and would need to lock myself away in a bathroom and suppress my screams. By early 2016 I was suffering extreme fatigue 24/7 and in December that year I had an episode of loss of vision for about 40 minutes. I saw an eye surgeon and was told I had a retinal tear in each eye, 10 minutes of laser surgery and it was all fixed, however she felt my loss of vision and other symptoms were brain related not eye related. On the eye surgeons recommendation I went back to my neurologist and had another MRI. It was only then I was told I had a 14mm x 10mm Pineal Cyst and that it was an incidental finding and was of no significance! I was later to learn that the cyst had been present on an early scan but it had not been reported on. Shortly after I was given a referral to see Professor Charlie Teo for a second opinion. As I sat in his waiting room I felt sure he would tell me I was wasting his time and that he had sicker people than me to see! You get so used to being told it's nothing to worry about. I instantly liked his open honest nature. Much to my surprise Charlie offered me surgery. He explained the risks involved and advised if my quality of life was being affected by my symptoms and it was stopping me from doing the things I loved, then that was the time to have surgery! I knew in that moment this was something I needed to do if I was to have any chance of my old life back! The next few months were torturous, the rest of my medical team believed surgery was too risky and that it wouldn't help me anyway. The upfront quote for this surgery was $100,000, all this to contend with, and all the while my health was rapidly declining. I was incredibly fortunate to have 4 family members offer to pay for my surgery by splitting the cost between them. I will be forever grateful to them, there are no words to express this kind of gratitude! I'm a very pragmatic person and if I'm honest very stubborn too, so once I had thought it all through I knew I had to drown out the noise of other people opinions and book the surgery. My main objectives leading up to surgery were to make sure all of my affairs were in order and to make it to the end of each day.
28.08.2017 The Day of Surgery
I remember feeling really calm going in to surgery, I had been struggling for so long I didn't really have any excess energy left to squander on worrying. The last thing I remember thinking as I was going under was at least I'm going to have a really deep sleep for the first time in 4 years! On waking up from surgery I instantly knew I had made the right decision. The pressure in my head was gone and I was able to move my right eye freely and see clearly again! Whilst surgery may not be the right path for everyone and for some it brings a whole new set of challenges, I have been so very lucky that my recovery has gone from strength to strength. Recovery takes time and the early days can be a little rough. You have to listen to your body, but for the most part I am back living a very active and fulfilling life.
Life becomes two very distinct chapters before brain surgery and after brain surgery. In the days and months that followed the gravity of my situation hit home. I had major brain surgery and I am here to tell the tale! As I write this I hold back tears of grief and tears of joy. Grief for all the years lost to this illness and joy that I am now well again! I have a new found clarity of life, colours seem so vivid now, blues are a little richer and greens a little lusher. Smells are sweeter, food tastier and friendships new and old so much stronger.
Special Thanks to my brother Adrian, Jody his beautiful wife and my sister in laws parents for making this surgery possible.
Joanne Warren | August 2018
Scott Thomson | Surgery November 2011 | Prof. Christopher Lind
I had a 3mm musculoskeletal mixoid condra sarcoma 98.5 percent removed by professor Christopher Lind at sir Charles Gairdner hospital 7 years ago in November. At time of diagnosis/resection I was the 4th documented case of this tumour in this area of the brain and 1 of 14 in the world.
I presented to Hedland Health Campus after two weeks of headaches and a form of seizure. They did CT scan where they found my tumour. Flew to Perth where the did my surgeries. Prof Linde did my first surgery before they had confirmed the biopsy results ( they didn’t believe the results ) as the tumour biopsy results said I had a musculoskeletal mixoid condra sarcoma, normally extraskeletal mixoid condra sarcoma is found in bones/bone marrow. With the biopsy confirmed and second surgery completed they then implanted 2 shunts, 1 programmable and 1 mechanical. The reason for the shunts is because my third ventricle was damaged by the tumour and my body couldn’t flush/drain/recirculate the CSF. The shunts drain into my bowel. So prof Linde removed 98.5 percent of the tumour, I went to radiology to a consultation with doctor Shaun Bidder in sir Charles Gairdner oncology unit. He told me that radiation will do nothing for the tumour I had but we would do 30 treatments anyway.
I am coming up to 7 years since the excision/radiation of my tumour with each scan showing no change.
Scott Thomson | October 2018
I presented to Hedland Health Campus after two weeks of headaches and a form of seizure. They did CT scan where they found my tumour. Flew to Perth where the did my surgeries. Prof Linde did my first surgery before they had confirmed the biopsy results ( they didn’t believe the results ) as the tumour biopsy results said I had a musculoskeletal mixoid condra sarcoma, normally extraskeletal mixoid condra sarcoma is found in bones/bone marrow. With the biopsy confirmed and second surgery completed they then implanted 2 shunts, 1 programmable and 1 mechanical. The reason for the shunts is because my third ventricle was damaged by the tumour and my body couldn’t flush/drain/recirculate the CSF. The shunts drain into my bowel. So prof Linde removed 98.5 percent of the tumour, I went to radiology to a consultation with doctor Shaun Bidder in sir Charles Gairdner oncology unit. He told me that radiation will do nothing for the tumour I had but we would do 30 treatments anyway.
I am coming up to 7 years since the excision/radiation of my tumour with each scan showing no change.
Scott Thomson | October 2018