Aa
Can it really be considered incidental findings?
In reading all that I can about arachnoid cysts, the only thing that all doctors seem to agree on is that the cysts are always found by "accident". How is it that in approximately 80%-90% of these cases where arachnoid cysts of all sizes are considered incidental findings that doctors are seaching for the answers to similar problems ie. headaches/migranes, vision imparement, seizures, loss of feeling, neurological complications, memory impairment, balance issues, or a combination of all or some of the listed symptoms? It would seem to me with a pattern this wide-spread and the rate of improvement on surgical intervention with the arachnoid cyst that maybe doctors would start to reconsider their "incidental findings" theory and start looking at these as the cause rather than an unrelated, non-symptomatic finding???
A common complaint that I have seen with arachnoid cyst sufferers regardless of the location is memory loss. It is difficult for most of these people to report on symptoms when they are not experiencing themthe time they are speaking about them. Doctors say to record symptoms in a type of diary... I find a few problems with this: Who can write down a detailed description of anything when your vision goes blurry and your are considering taking a gun to your head just to stop the pain? If you try to go back at a later time when the pain goes away (sometimes days later) and you suffer from memory loss it is almost impossible to get an accurate account of everything you were feeling. From this stand point wouldn't it be logical that many symptoms can be related and overlooked?
Speaking of overlooked symptoms, if an arachnoid cyst really is congenial how many syptoms can be ignored simply because you've had them your entire life and don't know any different? How many syptoms are not considered because you've found a way to exist with them? If you've always been a clutz who falls over everything and has no depth perception, a person who has spent their entire life not being able to recognize solid colors, or if you spend every moment in some type of pain does it then become "normal"?
Why is it that a person with migranes even if there is no logical reason for these headaches are considered simply "migrane sufferers", but a person diagnosed with an arachnoid cysts who complains of mind blowing headaches, dizzyness, memory loss, confusion, balance problems, vision imparement, etc. are all eventually told that they are suffering from depression?
"Smaller cysts are often asymptomatic" What size exactly is considered large enough to be symptomatic? The size of a grape, golfball, baseball?
Is there really enough known about the human brain to say without a doubt that any type of blockage inside the brain is non-symptomatic?
Why is it that all types of brain tumors are expected to cause symptoms where a non-solid mass cannot?
What I'd really like is for a doctor with some type of clinical research (one who is not going to go back to their text books to find the answer) to tell me where these theories came from and what evidence there is to support it.
A common complaint that I have seen with arachnoid cyst sufferers regardless of the location is memory loss. It is difficult for most of these people to report on symptoms when they are not experiencing themthe time they are speaking about them. Doctors say to record symptoms in a type of diary... I find a few problems with this: Who can write down a detailed description of anything when your vision goes blurry and your are considering taking a gun to your head just to stop the pain? If you try to go back at a later time when the pain goes away (sometimes days later) and you suffer from memory loss it is almost impossible to get an accurate account of everything you were feeling. From this stand point wouldn't it be logical that many symptoms can be related and overlooked?
Speaking of overlooked symptoms, if an arachnoid cyst really is congenial how many syptoms can be ignored simply because you've had them your entire life and don't know any different? How many syptoms are not considered because you've found a way to exist with them? If you've always been a clutz who falls over everything and has no depth perception, a person who has spent their entire life not being able to recognize solid colors, or if you spend every moment in some type of pain does it then become "normal"?
Why is it that a person with migranes even if there is no logical reason for these headaches are considered simply "migrane sufferers", but a person diagnosed with an arachnoid cysts who complains of mind blowing headaches, dizzyness, memory loss, confusion, balance problems, vision imparement, etc. are all eventually told that they are suffering from depression?
"Smaller cysts are often asymptomatic" What size exactly is considered large enough to be symptomatic? The size of a grape, golfball, baseball?
Is there really enough known about the human brain to say without a doubt that any type of blockage inside the brain is non-symptomatic?
Why is it that all types of brain tumors are expected to cause symptoms where a non-solid mass cannot?
What I'd really like is for a doctor with some type of clinical research (one who is not going to go back to their text books to find the answer) to tell me where these theories came from and what evidence there is to support it.
I'm posting again cause there was one thing I forgot to ask.
Why is it that arachnoiditis (located in the same area as arachnoid cysts are known to cause severe and constant pain, but a cyst cannot?
Just another thought I don't understand.
Why is it that arachnoiditis (located in the same area as arachnoid cysts are known to cause severe and constant pain, but a cyst cannot?
Just another thought I don't understand.
Selma,
I have stopped going to the doctor. Long story short, about a year ago my insurance cancelled me with some stupid excuse about my son being disabled and I can't afford a few hundred dollars every time some idiot dr wants to tell me either I'm crazy, that I need to see a different type of dr or they just don't know. The neurologists keep telling me that I need surgery, but I can't find a surgeon that will do it. I also can't afford the 4 or 5 prescriptions they had me on that don't help at all. I'm hoping someday that there will be more information on these type of cysts that make dr's realize that there is a whole group of people suffering and can't get help for it. Maybe one day the general opinion will change and help will be available.
Julia,
Rant completely understood! I can't seem to understand the logic behind these things. The brain controls everything the body does.... Speaking without a medical degree, none of it fits into any type of logical theory. There is so little information on the brain I don't understand how doctors of any kind can say without a doubt that a cyst can't be causing problems. Cysts in almost all other areas of the body are removed and are proven to cause problems. A cyst on the ovaries causes irregular bleeding stomach pain and a lot of times in the uterus are cause for a hysterectomy.? But in the brain they aren't considered a problem?!?!
I have excrutiating headaches (that I have been told is migranes, cluster headaches, sinus headaches, tension headaches and probably every other type of headache that the medical field has thought up). I am constantly falling down and getting so dizzy I look drunk. I'm seriously anemic and need to take iron pills 3 weeks out of every month and the pills make me so ill the toilet becomes my best friend. Everything takes an appearance of television snow, I have numbness in the right side of my body, I'm 30 years old and am suffering from signs of dementia. And a whole slew of other weird and scary symptoms. My husband is afraid to let me go anywhere by myself (and frankly there are times that I too am afraid). My kids are missing out on a mommy cause I feel like hell all the time, and I'm getting answers like see a shrink and take yoga. Though I wonder if I could sue if I took the advice of that opionated joke of medical degree and joined a yoga class then fell on my head.?
I asked one of my doctors why she didn't think that the cyst was the cause of the problem and she actually told me that it follows the natural path of the brain! Well, I have a couple of problems with this statement. 1. It's in the arachnoid membrane which is the outer layer of the brain 2. The part in my brain that controls vision is shifted completely to the left where upon a quick examination of the MRI it looks like that part of my brain is missing! It isn't, it's just shoved into another part of my brain. That is a natural pathway????
If one of these so called medical proffessionals could give me an answer that made any sense at all I could accept that the cyst isn't causing some if not all of my symptoms.
I truly believe there is no thinking nor research required in the medical field yet. If there was, a lot more doctors would realize that these types of cysts are causing similar problems in all the people who have them. They could see the connection if they took their heads out of the text books. I've read studies from NIH that proves just that.
It looks like I went off on a rant too, I'm frustrated, angy, sick, and I just haven't a clue as to what can be done about any of it which I guess is the most frustrating part.
I just keep hoping that all of us will someday get the help and treatment we need. In the meantime if you all need someone to rant at feel free to message me.
Karen
I have stopped going to the doctor. Long story short, about a year ago my insurance cancelled me with some stupid excuse about my son being disabled and I can't afford a few hundred dollars every time some idiot dr wants to tell me either I'm crazy, that I need to see a different type of dr or they just don't know. The neurologists keep telling me that I need surgery, but I can't find a surgeon that will do it. I also can't afford the 4 or 5 prescriptions they had me on that don't help at all. I'm hoping someday that there will be more information on these type of cysts that make dr's realize that there is a whole group of people suffering and can't get help for it. Maybe one day the general opinion will change and help will be available.
Julia,
Rant completely understood! I can't seem to understand the logic behind these things. The brain controls everything the body does.... Speaking without a medical degree, none of it fits into any type of logical theory. There is so little information on the brain I don't understand how doctors of any kind can say without a doubt that a cyst can't be causing problems. Cysts in almost all other areas of the body are removed and are proven to cause problems. A cyst on the ovaries causes irregular bleeding stomach pain and a lot of times in the uterus are cause for a hysterectomy.? But in the brain they aren't considered a problem?!?!
I have excrutiating headaches (that I have been told is migranes, cluster headaches, sinus headaches, tension headaches and probably every other type of headache that the medical field has thought up). I am constantly falling down and getting so dizzy I look drunk. I'm seriously anemic and need to take iron pills 3 weeks out of every month and the pills make me so ill the toilet becomes my best friend. Everything takes an appearance of television snow, I have numbness in the right side of my body, I'm 30 years old and am suffering from signs of dementia. And a whole slew of other weird and scary symptoms. My husband is afraid to let me go anywhere by myself (and frankly there are times that I too am afraid). My kids are missing out on a mommy cause I feel like hell all the time, and I'm getting answers like see a shrink and take yoga. Though I wonder if I could sue if I took the advice of that opionated joke of medical degree and joined a yoga class then fell on my head.?
I asked one of my doctors why she didn't think that the cyst was the cause of the problem and she actually told me that it follows the natural path of the brain! Well, I have a couple of problems with this statement. 1. It's in the arachnoid membrane which is the outer layer of the brain 2. The part in my brain that controls vision is shifted completely to the left where upon a quick examination of the MRI it looks like that part of my brain is missing! It isn't, it's just shoved into another part of my brain. That is a natural pathway????
If one of these so called medical proffessionals could give me an answer that made any sense at all I could accept that the cyst isn't causing some if not all of my symptoms.
I truly believe there is no thinking nor research required in the medical field yet. If there was, a lot more doctors would realize that these types of cysts are causing similar problems in all the people who have them. They could see the connection if they took their heads out of the text books. I've read studies from NIH that proves just that.
It looks like I went off on a rant too, I'm frustrated, angy, sick, and I just haven't a clue as to what can be done about any of it which I guess is the most frustrating part.
I just keep hoping that all of us will someday get the help and treatment we need. In the meantime if you all need someone to rant at feel free to message me.
Karen
Your first paragraph summarized perfectly what I've been trying to convey to doctors (gently!) for the past year. I don't have an arachnoid cyst; I have a pineal cyst, but I hear the same exact story from every single doctor--they're always ridiculously quick to say, "Pineal cyst? Oh, that's incidental. Next symptom?" It's very disheartening, especially when I keep reading stories and getting messages from people across the world with pineal cysts who have the SAME symptoms I do!
I really think part of the reason doctors are trained to look upon findings such as these as incidental is because of the location of the cysts, as well as the lack of knowledge about them, in general. If they were to admit that the cyst in your head is causing so many serious issues, what's the next step? Brain surgery, essentially. This should never be taken lightly as these cysts tend to be in dangerous spots in within our heads, and they don't want to frighten most "average" patients, who are probably already scared to death about the tumor in their head. Also, they don't necessarily know how to think very creatively (diagnosticians can, but not most average specialists, I've found--this is just my personal opinion, though, and I am willing to admit I could be wrong), so if they can look at your MRI images and say, "Ah, yes, the cyst IS leading up against this area and putting pressure on it, causing this symptom..." then they feel comfortable and they don't have to worry about sending a patient for a life-threatening surgical procedure who might not need it, as well as not worry about insurance coming after them if they're wrong about the cyst causing those problems, since the MRI is as close to proof as they'll get without cutting into your head. Since most of our MRIs don't indicate that the cyst is causing any mass effect, hydrocephalus, or other very obvious problems, they almost don't want to consider the problem in a creative fashion, because it's risky for them, and ultimately, you.
I'd rather they take the risk, honestly. I'd like for a doctor to actually tell me that the cyst could be causing problems just by being there, and that they don't know what material the cyst is filled with just by looking at an MRI or CT image. No matter how many times they've told me "it's incidental", I cannot get past the fact that I complained of pressure in my head, terrible headaches, dizziness, double-vision at night, blurry vision, and memory loss for several months before I knew I had a pineal cyst. Just because the MRI was done for a different reason--looking at my pituitary gland to see if it was abnormal since my thyroid was out of whack--than my headaches et al., doesn't mean that it was merely a coincidence they found it while searching for a pituitary problem. I also cannot get past the fact that the pineal gland upon which my cyst is usurping (you can't even see my pineal gland) is part of the neuroendocrine system, which is connected to my thyroid, pituitary, hypothalamus, and adrenals.......I don't think it's coincidence I'm seeing problems in those systems and also happen to have a pineal cyst. Haven't they ever heard of Occam's Razor? One reason explaining my symptoms is simpler than two reasons explaining my symptoms.
I'm sorry, that turned into a little rant. I'm just very frustrated with doctors regarding this and I'm worried that the cyst is causing permanent damage (decreased sensation and muscle weakness on my left side) while they continue to tell me I'm wrong. I guess you could say that I really understand where you're coming from, and can sympathize with both you and Selma. =) Good luck with your quest to find answers and treatment, and keep me posted!
-Julia
I really think part of the reason doctors are trained to look upon findings such as these as incidental is because of the location of the cysts, as well as the lack of knowledge about them, in general. If they were to admit that the cyst in your head is causing so many serious issues, what's the next step? Brain surgery, essentially. This should never be taken lightly as these cysts tend to be in dangerous spots in within our heads, and they don't want to frighten most "average" patients, who are probably already scared to death about the tumor in their head. Also, they don't necessarily know how to think very creatively (diagnosticians can, but not most average specialists, I've found--this is just my personal opinion, though, and I am willing to admit I could be wrong), so if they can look at your MRI images and say, "Ah, yes, the cyst IS leading up against this area and putting pressure on it, causing this symptom..." then they feel comfortable and they don't have to worry about sending a patient for a life-threatening surgical procedure who might not need it, as well as not worry about insurance coming after them if they're wrong about the cyst causing those problems, since the MRI is as close to proof as they'll get without cutting into your head. Since most of our MRIs don't indicate that the cyst is causing any mass effect, hydrocephalus, or other very obvious problems, they almost don't want to consider the problem in a creative fashion, because it's risky for them, and ultimately, you.
I'd rather they take the risk, honestly. I'd like for a doctor to actually tell me that the cyst could be causing problems just by being there, and that they don't know what material the cyst is filled with just by looking at an MRI or CT image. No matter how many times they've told me "it's incidental", I cannot get past the fact that I complained of pressure in my head, terrible headaches, dizziness, double-vision at night, blurry vision, and memory loss for several months before I knew I had a pineal cyst. Just because the MRI was done for a different reason--looking at my pituitary gland to see if it was abnormal since my thyroid was out of whack--than my headaches et al., doesn't mean that it was merely a coincidence they found it while searching for a pituitary problem. I also cannot get past the fact that the pineal gland upon which my cyst is usurping (you can't even see my pineal gland) is part of the neuroendocrine system, which is connected to my thyroid, pituitary, hypothalamus, and adrenals.......I don't think it's coincidence I'm seeing problems in those systems and also happen to have a pineal cyst. Haven't they ever heard of Occam's Razor? One reason explaining my symptoms is simpler than two reasons explaining my symptoms.
I'm sorry, that turned into a little rant. I'm just very frustrated with doctors regarding this and I'm worried that the cyst is causing permanent damage (decreased sensation and muscle weakness on my left side) while they continue to tell me I'm wrong. I guess you could say that I really understand where you're coming from, and can sympathize with both you and Selma. =) Good luck with your quest to find answers and treatment, and keep me posted!
-Julia
Hi and welcome to the club....my condition is treated the same way by medical professional that have not made it their specialty.They go by info that was thrown at them in med school and since they do not deal with it everyday have not bothered to check to see what new veiws there r now on the condition.
I can sympathize and can only offer u this...search for a dr that is focusing on ur condition....u may need to travel, but I would rather travel then settle.
I pray u find the right dr for u and can get some treatment that works.
Godspeed
"selma"
I can sympathize and can only offer u this...search for a dr that is focusing on ur condition....u may need to travel, but I would rather travel then settle.
I pray u find the right dr for u and can get some treatment that works.
Godspeed
"selma"
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