When I am quiet on the Internet, it usually means something is very wrong. Because, normally, I have a lot to say and many people to say it to. I generally do not like to post if all I am going to do is bitch, because who wants to read that. Everyone has problems, right? Until I can get to the point where I can have a sense of humor about something, I do not like to put it out there.
A caveat if you are looking for upbeat reading material: I am not sure when and if I can get to the point where I will have a sense of humor about the current state of affairs, and I need to vent right now. If you are looking for light and fluffy, the following is dark and twisty, and I suggest you read something else.
The gist of my vent is that I have been sick for over two years. Initially I started seeing my former GP because I was fatigued, all the time. No matter how much I slept, what I ate, or how much I exercised, I was exhausted and always felt like I had the flu. After a full battery of labs came back mostly normal - a little anemia, a touch of vitamin deficiency - the "feeling badness" was blamed on my lifestyle, my young kid, and being an attorney with a litigation firm. Stress, stress and more stress. Per my doctor, I made an effort to reduce my hours (a decision that ended with me ultimately leaving that firm) and do all the "right" things to feel better. Nothing helped.
Incrementally, I started to feel worse. It became apparent that the constellation of emergent symptoms could not be attributed solely to BusyMomWithaJobItis. At this point, I became more aggressive in getting to the bottom of what the problem was. At my insistence, I was punted around to a herd of medical specialists of every imaginable flavor - all the while continuing to be a busy mom attorney with a (new) job. Oh, and I signed up for a fundraising half-marathon thinking if I denied being sick, I would feel better (I did not complete training when it made me feel worse than ever).
Every specialist I saw had ideas, but no concrete answer. Over the span of one year, I had *probable* lupus, MS, myasthenia gravis, unspecified autoimmune disease, connective tissue disorder, chronic fatigue syndrome, fibromyalgia, Lyme disease, diabetes, blood clotting disorders. But none of it quite fit, and the diagnostic picture never fully added up to any one disease. Until finally (!), an MRI scan in November 2007 showed a lesion in my brain. This was after a 2006 brain scan came up clear - when neurosurgeons looked back at it, the tumor was there - just not as visible.
Mystery solved! A lesion in the brain is bad and will make one sick. Finally an answer, albeit a terrifying one. This discovery prompted a manic level of activity in terms of testing, appointments, and increasingly specialized specialists. Lesions in the brain can grow really really fast, and are often fatal, so time was of the essence.
You would think a brain lesion visible on film would ensure the ability to make a clear diagnosis as to what said lesion WAS. But that is not the case, despite what the medical shows will have you believe, most diagnostic mysteries are not solved within the span of forty-eight minutes. In 2007, the differential diagnoses for my brain lesion were: 1) neurocytoma (brain tumor) 2) astrocytoma (BAD brain tumor) 3) colloid cyst (not a brain tumor) or 4) neurocystisarcosis (worms in the brain). Do you watch Grey's Anatomy? Addison's brother, Archer - with his worms in his brain? Yep, that. My neurologist was convinced I was secretly traveling to third- world countries and eating uncooked pork that I was not telling her about.
I saw two neurosurgeons after the 2007 MRI. They both assured me that I had a congenital brain abnormality called "hamartoma." Hamartoma reads like a tumor on brain imaging film but is not actually considered a brain tumor; the distinction being that brain tumor cells grow over time and hamartomas do not. Usually.
Yay! I celebrated the fact that I did not need brain surgery for a life-threatening problem. However, since hamartomas can grow in rare instances, I was slated for twice-yearly brain scans for observation. After serial brain scans and consults with some of the world's foremost experts on brain tumor, the original diagnosis of hamartoma has been dismissed. As of today, the panel of world-class experts have determined that I have a brain tumor of *likely* benign etiology in the left frontal horn of the left lateral ventricle. Due to the difficulty of this type of surgery, the tumor is still in there and has not been biopsied, but I am now followed very closely. This is actually deemed a treatment plan in the brain field for surgically difficult cases, the pros it "watchful waiting." I call it, "Drink more than is probably healthy and pray." Semantics.
Here is what I now know: I learned that without a biopsy, there is no way to be 100% sure of what exactly is in there. But I learned that due to tumor location, a biopsy of this nature is considered major brain surgery, nobody will do it. I learned that the tumor location is very very rare. There have been fewer than a hundred cases documented and researched. EVER. The neurosurgeon who is now one of my doctors only "does" brain tumors in this one area of the brain. People fly to see him from all over the world because of his specialized expertise, and he has seen four of "my type" over the entire span of his career. I have learned that a mass in the ventricle of the brain, as far as brain surgery goes, is about as bad as it gets.
This is because the ventricles are in the center of the brain, like the seeds of an apple. To get to the seeds, you have to split the entire apple with a knife clear down the middle *(my own analogy). Now imagine the same principle applied to a brain.
A caveat if you are looking for upbeat reading material: I am not sure when and if I can get to the point where I will have a sense of humor about the current state of affairs, and I need to vent right now. If you are looking for light and fluffy, the following is dark and twisty, and I suggest you read something else.
The gist of my vent is that I have been sick for over two years. Initially I started seeing my former GP because I was fatigued, all the time. No matter how much I slept, what I ate, or how much I exercised, I was exhausted and always felt like I had the flu. After a full battery of labs came back mostly normal - a little anemia, a touch of vitamin deficiency - the "feeling badness" was blamed on my lifestyle, my young kid, and being an attorney with a litigation firm. Stress, stress and more stress. Per my doctor, I made an effort to reduce my hours (a decision that ended with me ultimately leaving that firm) and do all the "right" things to feel better. Nothing helped.
Incrementally, I started to feel worse. It became apparent that the constellation of emergent symptoms could not be attributed solely to BusyMomWithaJobItis. At this point, I became more aggressive in getting to the bottom of what the problem was. At my insistence, I was punted around to a herd of medical specialists of every imaginable flavor - all the while continuing to be a busy mom attorney with a (new) job. Oh, and I signed up for a fundraising half-marathon thinking if I denied being sick, I would feel better (I did not complete training when it made me feel worse than ever).
Every specialist I saw had ideas, but no concrete answer. Over the span of one year, I had *probable* lupus, MS, myasthenia gravis, unspecified autoimmune disease, connective tissue disorder, chronic fatigue syndrome, fibromyalgia, Lyme disease, diabetes, blood clotting disorders. But none of it quite fit, and the diagnostic picture never fully added up to any one disease. Until finally (!), an MRI scan in November 2007 showed a lesion in my brain. This was after a 2006 brain scan came up clear - when neurosurgeons looked back at it, the tumor was there - just not as visible.
Mystery solved! A lesion in the brain is bad and will make one sick. Finally an answer, albeit a terrifying one. This discovery prompted a manic level of activity in terms of testing, appointments, and increasingly specialized specialists. Lesions in the brain can grow really really fast, and are often fatal, so time was of the essence.
You would think a brain lesion visible on film would ensure the ability to make a clear diagnosis as to what said lesion WAS. But that is not the case, despite what the medical shows will have you believe, most diagnostic mysteries are not solved within the span of forty-eight minutes. In 2007, the differential diagnoses for my brain lesion were: 1) neurocytoma (brain tumor) 2) astrocytoma (BAD brain tumor) 3) colloid cyst (not a brain tumor) or 4) neurocystisarcosis (worms in the brain). Do you watch Grey's Anatomy? Addison's brother, Archer - with his worms in his brain? Yep, that. My neurologist was convinced I was secretly traveling to third- world countries and eating uncooked pork that I was not telling her about.
I saw two neurosurgeons after the 2007 MRI. They both assured me that I had a congenital brain abnormality called "hamartoma." Hamartoma reads like a tumor on brain imaging film but is not actually considered a brain tumor; the distinction being that brain tumor cells grow over time and hamartomas do not. Usually.
Yay! I celebrated the fact that I did not need brain surgery for a life-threatening problem. However, since hamartomas can grow in rare instances, I was slated for twice-yearly brain scans for observation. After serial brain scans and consults with some of the world's foremost experts on brain tumor, the original diagnosis of hamartoma has been dismissed. As of today, the panel of world-class experts have determined that I have a brain tumor of *likely* benign etiology in the left frontal horn of the left lateral ventricle. Due to the difficulty of this type of surgery, the tumor is still in there and has not been biopsied, but I am now followed very closely. This is actually deemed a treatment plan in the brain field for surgically difficult cases, the pros it "watchful waiting." I call it, "Drink more than is probably healthy and pray." Semantics.
Here is what I now know: I learned that without a biopsy, there is no way to be 100% sure of what exactly is in there. But I learned that due to tumor location, a biopsy of this nature is considered major brain surgery, nobody will do it. I learned that the tumor location is very very rare. There have been fewer than a hundred cases documented and researched. EVER. The neurosurgeon who is now one of my doctors only "does" brain tumors in this one area of the brain. People fly to see him from all over the world because of his specialized expertise, and he has seen four of "my type" over the entire span of his career. I have learned that a mass in the ventricle of the brain, as far as brain surgery goes, is about as bad as it gets.
This is because the ventricles are in the center of the brain, like the seeds of an apple. To get to the seeds, you have to split the entire apple with a knife clear down the middle *(my own analogy). Now imagine the same principle applied to a brain.
Less-invasive endoscopic surgery is considered the new technique for surgical intervention in the ventricles, the surgeon uses specialized instruments to access the center of the brain without splitting the rest. Less than twenty brain surgeons in the world do it. I have seen three of them. I have been told, over and over, how challenging and highly specialized this type of brain surgery is.
As time has progressed and subsequent scans have been performed, these brain surgeons who like a challenge (unlike all those slacker brain surgeons you meet everyday) have been able to view the progression of my tumor. The current theory is that my tumor is "probably" a subependymoma (Grade I) or a central neurocytoma (Grade II).
I quote below from a brain tumor survivor's blog I have been following for awhile. The website is http://www.adultependymomabraintumor.com/
Ependymomas are graded using the World Health Organization (WHO) standard - grades I and II are considered benign and grades III and IV are considered malignant or "anaplastic." However, benign ependymomas can be anything but benign. "Low grade" is a more descriptive term than "benign." As space-occupying lesions in an extremely limited space, often they are malignant by location, and sometimes they can recur, perhaps not as fast as might be the case with anaplastic ependymoma, but they can recur nonetheless. Mine recurred the first time after three years. The location of a brain ependymoma can be devastating. Think real estate as in, "location, location, location." Where the tumor is and the skill of the neurosurgeon in attempting to remove it are most important. Some people are wrecked from the surgery to try to remove an ependymoma that might be attached to one or more cranial nerves on the brainstem. The cranial nerves are twelve pairs of nerves that are the critical sources of a person's ability to breathe, smell, see, chew, taste, move and hear. My surgeries resulted in several deficits because of the "insult" to some of these nerves. Fortunately, I have regained these abilities at least partially. Some patients, though, never regain some vital functions, such as their swallowing, walking or speaking ability.
Is this brain cancer? It's not a simple answer. Ependymomas are tumors and they can recur either locally in the brain or into the spinal cord, so in that sense they are cancerous. However, sometimes they are slow-growing and do not spread to other parts of the body and in that sense they do not behave like cancer. Most importantly, and frighteningly, ependymomas, even if benign on the WHO scale, can be deadly simply by their location, either if they grow and cause death or if they are removed and cause death from the surgery. Ependymomas are treated like many cancers with surgery, radiation, and/or chemotherapy. New growth of a slow-growing tumor might not show for years. The scary truth is that any form of ependymoma that is either inoperable surgically or unresponsive to radiation and/or drug therapies eventually will kill the patient, on a timeline that is specific to the individual case. (Words of Carol Walsh, Brain Tumor Survivor)
A few months ago, my vision went out. All of a sudden, out-of-the-blue, I was legally blind, while driving on the highway. This proved to be mildly inconvenient. Much concern was made about what was going on inside of my head, given the tumor, and there were tests run and scans done and emergency evaluations.
And herein lies the rub: the consensus among these highly-specialized brain experts is that 1) I do have a brain tumor (bad) 2) To remove said tumor is highly-risky life-threatening surgery and no surgeon I have seen will agree to operate - at this point (bad or good?) 3) I will have to have serial scans to monitor tumor growth every several months (more watchful waiting) but 4) this tumor in my brain is considered CLINICALLY INSIGNIFICANT to the symptoms I am having.
What?! So, I have a brain tumor, which may eventually require surgery which has a good shot at killing me - the five-year survival rate is @50-75%, depending on which resource you consult - BUT THAT IS NOT WHAT IS WRONG WITH ME. The neurosurgeons think doctors just happened to stumble across this tumor during rigorous testing for something else and the tumor is not the real reason I cannot function and they DO. NOT. THINK. THIS. TUMOR. IS. CAUSING. THE. SYMPTOMS. WHICH. ARE. CURRENTLY. MAKING.ME. SICK.
This past month has been terrible. I am sick and getting sicker. Still no answers. And the idea of dealing with something "else"?
Is this brain cancer? It's not a simple answer. Ependymomas are tumors and they can recur either locally in the brain or into the spinal cord, so in that sense they are cancerous. However, sometimes they are slow-growing and do not spread to other parts of the body and in that sense they do not behave like cancer. Most importantly, and frighteningly, ependymomas, even if benign on the WHO scale, can be deadly simply by their location, either if they grow and cause death or if they are removed and cause death from the surgery. Ependymomas are treated like many cancers with surgery, radiation, and/or chemotherapy. New growth of a slow-growing tumor might not show for years. The scary truth is that any form of ependymoma that is either inoperable surgically or unresponsive to radiation and/or drug therapies eventually will kill the patient, on a timeline that is specific to the individual case. (Words of Carol Walsh, Brain Tumor Survivor)
A few months ago, my vision went out. All of a sudden, out-of-the-blue, I was legally blind, while driving on the highway. This proved to be mildly inconvenient. Much concern was made about what was going on inside of my head, given the tumor, and there were tests run and scans done and emergency evaluations.
And herein lies the rub: the consensus among these highly-specialized brain experts is that 1) I do have a brain tumor (bad) 2) To remove said tumor is highly-risky life-threatening surgery and no surgeon I have seen will agree to operate - at this point (bad or good?) 3) I will have to have serial scans to monitor tumor growth every several months (more watchful waiting) but 4) this tumor in my brain is considered CLINICALLY INSIGNIFICANT to the symptoms I am having.
What?! So, I have a brain tumor, which may eventually require surgery which has a good shot at killing me - the five-year survival rate is @50-75%, depending on which resource you consult - BUT THAT IS NOT WHAT IS WRONG WITH ME. The neurosurgeons think doctors just happened to stumble across this tumor during rigorous testing for something else and the tumor is not the real reason I cannot function and they DO. NOT. THINK. THIS. TUMOR. IS. CAUSING. THE. SYMPTOMS. WHICH. ARE. CURRENTLY. MAKING.ME. SICK.
This past month has been terrible. I am sick and getting sicker. Still no answers. And the idea of dealing with something "else"?
2 comments:
Hello! You don't know me, I'm one of those Internet people who happened to find your blog while searching for information on hamartomas. I was diagnosed this week with "likely" the same thing that you have. However, I am having a biopsy of mine done next week. I would like to say that I can relate to all that you mentioned - down to the date of your first brain scan. Mine was October of '07 when they first "saw" the tumor.
I wish you well in your journey and hope that you receive all the answers that you need and the doctors are able to figure out what is wrong and how to alleviate it.
motherlawyercrazywoman.blogspot.com; You saved my day again.
Post a Comment