02-02-2024, 09:51 AM
My name is Charissa McCulloch and I have a unique situation I am requesting help with.
In December of 2017 I had my first ever seizure. This led to brain scans that showed a Rathke’s Cleft Cyst on my pituitary gland. I had an EEG and was informed that my seizures were not epileptic in nature. The radiologist did not make note of the cyst on those images. In April of 2018 I was sent to Oregon Health and Sciences University (OHSU) for a week long seizure study. The team there reviewed my scans and found the cysts. They immediately set me up with a focalized MRI and referred me to neuroendocrinology. Neuroendocrinology informed me that my hormones were fine when reviewing my lab results and that the cyst was not pushing on anything in my brain, so it was not causing my seizures and symptoms (facial paralysis, ovarian cysts, catatonia, headaches, and neck pain). 11 months later I was introduced to Dr. Justin Cetas at OHSU. He had already looked through my chart before we even talked and immediately told me he would remove the cyst and that 60%-70% of the time his patient’s symptoms go away. In April 2019 I underwent surgery to marsupialized the cysts. My symptoms I had been having immediately went away. I was thrilled to finally have found a doctor that listened and believed me! Six months after the surgery I started having symptoms again. An MRI showed that my cyst had repaired itself and filled again. This time it was not as large, about 4mm, but was still causing all of the same symptoms. In May of 2020 Dr. Cetas performed surgery again and was more aggressive with removing the sack. This did cause a small amount of damage to my pituitary gland; I have diabetes insipidus and it is managed well with medication. Once again, all of my symptoms went away after the second surgery.
In June of 2022 I relocated to Idaho and transferred my care to a neurosurgeon in Boise so that I wouldn’t have to travel to Oregon for my MRIs. Dr. Cetas had already left OHSU to go work for the University of Arizona. At this time I just wanted a doctor to do my annual referral for an MRI to make sure my cyst was gone. In May of 2023 I had an MRI and was told all was good. In October 2023 I started experiencing vision changes and headaches. I immediately made an appointment with my eye doctor and asked my neurosurgeon for an MRI. The eye doctor said that my prescription could be updated and that my eyes are in a constant spasm. The MRI showed that there was a cyst on my pituitary gland. Immediately I was concerned, especially since Dr. Cetas had since passed and I would have to find another doctor to help me out.
In December 2023 I was able to meet with the neurosurgeon in Boise. At this point I had started having seizures again as well as sudden dizziness, numbness of the mouth and tongue, and disorientation. The neurosurgeon told me what I had heard before; The cyst is not the cause of your seizures and symptoms. I was referred to neurology and my referral was refused because they felt it was more of a psychiatric issue. The thing is this, I AM NOT CRAZY! I know my body and I know how to fix the problem. I immediately made an appointment with neurosurgery at OHSU knowing that the doctors were colleagues of Dr. Cetas and would understand my situation.
On January 16, 2024, I had a virtual appointment with a neurosurgeon at OHSU. I was once again told that my cyst was not very large (5mm) and that it wouldn’t cause my symptoms, especially seizures. I explained my back history with Dr. Cetas and the doctors said “I am not Dr. Cetas and if you are asking me to do this surgery, I will not.” I was at a loss. How could a colleague of Dr. Cetas, the man who saved my quality of life, not understand my situation? I questioned what I was to do with my quality of life. How am I to hold down a job when I call in to work at the last minute because I had seizures overnight, or am so disoriented I can’t drive to work? I was given no answer.
Part of the problem is that my cyst will fill and drain every few weeks. My scans in November of 2023 showed the cyst was 2mm in size. When the scan was done, I had no symptoms and felt just fine. I know that 2mm is too small to do surgery on, so how can we catch this thing when it is filled and take care of it? I was in the emergency room earlier this week for seizures and asked for an MRI, but the doctor said no because it was not emergent. I wish I could have had it done.
I am looking for help with removing this cyst. I know that my quality of life is suffering because of it. I also want someone to learn from my situation. I know it is uncommon for this cyst to return a third time, and my story may be helpful in fulfilling research needs. I understand that surgery on the pituitary gland can be risky, but it is a risk I am willing to take. I know that this is the answer to getting rid of my symptoms.
This leads me to ask, would you be willing to have a discussion with me about my case and potentially perform surgery to remove the cyst?
In December of 2017 I had my first ever seizure. This led to brain scans that showed a Rathke’s Cleft Cyst on my pituitary gland. I had an EEG and was informed that my seizures were not epileptic in nature. The radiologist did not make note of the cyst on those images. In April of 2018 I was sent to Oregon Health and Sciences University (OHSU) for a week long seizure study. The team there reviewed my scans and found the cysts. They immediately set me up with a focalized MRI and referred me to neuroendocrinology. Neuroendocrinology informed me that my hormones were fine when reviewing my lab results and that the cyst was not pushing on anything in my brain, so it was not causing my seizures and symptoms (facial paralysis, ovarian cysts, catatonia, headaches, and neck pain). 11 months later I was introduced to Dr. Justin Cetas at OHSU. He had already looked through my chart before we even talked and immediately told me he would remove the cyst and that 60%-70% of the time his patient’s symptoms go away. In April 2019 I underwent surgery to marsupialized the cysts. My symptoms I had been having immediately went away. I was thrilled to finally have found a doctor that listened and believed me! Six months after the surgery I started having symptoms again. An MRI showed that my cyst had repaired itself and filled again. This time it was not as large, about 4mm, but was still causing all of the same symptoms. In May of 2020 Dr. Cetas performed surgery again and was more aggressive with removing the sack. This did cause a small amount of damage to my pituitary gland; I have diabetes insipidus and it is managed well with medication. Once again, all of my symptoms went away after the second surgery.
In June of 2022 I relocated to Idaho and transferred my care to a neurosurgeon in Boise so that I wouldn’t have to travel to Oregon for my MRIs. Dr. Cetas had already left OHSU to go work for the University of Arizona. At this time I just wanted a doctor to do my annual referral for an MRI to make sure my cyst was gone. In May of 2023 I had an MRI and was told all was good. In October 2023 I started experiencing vision changes and headaches. I immediately made an appointment with my eye doctor and asked my neurosurgeon for an MRI. The eye doctor said that my prescription could be updated and that my eyes are in a constant spasm. The MRI showed that there was a cyst on my pituitary gland. Immediately I was concerned, especially since Dr. Cetas had since passed and I would have to find another doctor to help me out.
In December 2023 I was able to meet with the neurosurgeon in Boise. At this point I had started having seizures again as well as sudden dizziness, numbness of the mouth and tongue, and disorientation. The neurosurgeon told me what I had heard before; The cyst is not the cause of your seizures and symptoms. I was referred to neurology and my referral was refused because they felt it was more of a psychiatric issue. The thing is this, I AM NOT CRAZY! I know my body and I know how to fix the problem. I immediately made an appointment with neurosurgery at OHSU knowing that the doctors were colleagues of Dr. Cetas and would understand my situation.
On January 16, 2024, I had a virtual appointment with a neurosurgeon at OHSU. I was once again told that my cyst was not very large (5mm) and that it wouldn’t cause my symptoms, especially seizures. I explained my back history with Dr. Cetas and the doctors said “I am not Dr. Cetas and if you are asking me to do this surgery, I will not.” I was at a loss. How could a colleague of Dr. Cetas, the man who saved my quality of life, not understand my situation? I questioned what I was to do with my quality of life. How am I to hold down a job when I call in to work at the last minute because I had seizures overnight, or am so disoriented I can’t drive to work? I was given no answer.
Part of the problem is that my cyst will fill and drain every few weeks. My scans in November of 2023 showed the cyst was 2mm in size. When the scan was done, I had no symptoms and felt just fine. I know that 2mm is too small to do surgery on, so how can we catch this thing when it is filled and take care of it? I was in the emergency room earlier this week for seizures and asked for an MRI, but the doctor said no because it was not emergent. I wish I could have had it done.
I am looking for help with removing this cyst. I know that my quality of life is suffering because of it. I also want someone to learn from my situation. I know it is uncommon for this cyst to return a third time, and my story may be helpful in fulfilling research needs. I understand that surgery on the pituitary gland can be risky, but it is a risk I am willing to take. I know that this is the answer to getting rid of my symptoms.
This leads me to ask, would you be willing to have a discussion with me about my case and potentially perform surgery to remove the cyst?
