Aa
Pineal Cyst
Im 19 years old, and since the age or 6-7 i have a history of fainting and over the last 2-3years ive started to suffer with headaches, although this doesn't happen often, there seams to be no pattern that would explain these faints. I have recently had neurological tests (EEG and MRI scans), I've also had an ECG, and full blood tests. Today i got my results for these tests and they have all come back within normal range. However I was told that i have a pineal cyst.
I am looking for answers to the cause of the faints/headaches, the consultant seems to think this cyst is not the cause of my symptoms and that the cyst is nothing to worry about.
However i still feel at a loss of what caused the cyst and what would happen if the cyst grows or bursts? Also, would it relate to my symptoms of faints/headaches?
Amy
I am looking for answers to the cause of the faints/headaches, the consultant seems to think this cyst is not the cause of my symptoms and that the cyst is nothing to worry about.
However i still feel at a loss of what caused the cyst and what would happen if the cyst grows or bursts? Also, would it relate to my symptoms of faints/headaches?
Amy
I don't know if anyone still reads these messages but I am hoping!
I have also been told I have a pineal cyst.
I found out by being copied into a letter from my neurologist to my GP that I have a cyst 10.8mm and that I will have another scan in 12 months time. No explanation as to what this is or whether 10.8mm is large.
It was found during an MRI scan after I had 2 severe fits, one the day before my son was born and the 2nd when I was alone with my son when he was 6 months old and I had to be taken to A&E. I had fits when I was about 14yrs old and the Dr said it was stress or hormones then I had nothing again until I was 23 but these were severe.
I was told I had epilepsy and given drugs before any tests were done.
When I had the MRI they found the cyst and never even bothered to explain what it was I had but as most of you will know you have an over whelming sense of terror when someone tells you something is in your brain, after all if it gets bigger there isn't much room for it to go before it presses on something and causes problems.
I discussed it with my GP who shared my concerns and referred me to the neurologist at my local hospital who was very annoyed to see me.
I was greeted with 'I don't know why you're here - the Dr says you want this thing explained but I don't see why' I wanted to shout that she should understand that with no knowledge of the condition it is terrifying to be copied in to letter like that and that I wanted to know if this was big, what it meant, how old it was, how fast it grows, could it be the cause the searing pains that shoot through my head, the constant headaches, vision troubles, speech troubles, loss of memory, fits, twitching in my arms and face, the swelling pain at the base of my skull and the spinal pain I've had physio for.
I was told that 10.8mm was tiny, they find them all the time and they cause no problems whatsoever. She even asked if the problems I was complaining of may be psychological or that I should drink less alcohol - I don't drink! She said she'll book a scan for 12 months and then they'll see if it has grown and work out the growth rate if that would make me feel better. It doesn’t make me feel better. A 12 month scan I have found out is normal for a small cyst but over 1 cm should not be considered small.
I left feeling absolutely furious. I was very rudely told that she was the specialist and therefore knew everything and I knew nothing. She would decide what information was worth me being informed of.
I got home and hit the internet to find an answer. I have spoken to other people with cysts all suffering from the same problems and all saying that they know that there is a link and as we meet more people with the same problems we are certain that it is all part and parcel of the condition but only a handful have found neurologists that say that they can cause these problems.
I was told that 10.8mm (1.08cm) was tiny. I have since found out that 0.5cm is small and anything over 1cm is large, rare and cause for concern as it can cause Hydrocephalus which will cause pressure headaches and will certainly cause fits and migraines. I was furious with what the neuro had told me but she is refusing to book another appointment to speak to me or do another MRI before June 2008.
I also have an epilepsy nurse who is wonderful and he has said that it is most certainly the cause of the unpredictable seizures. I do have a de-ja-vu type warning just before I have one and usually a sharp smell of ammonia at the back of my nose. After the seizure I have no memory at all, I am terrified, confused, unable to recognise myself -this can last minutes or months, often can't move and it causes me to be sick for several hours after, I have had to re-teach myself to write and can no longer read aloud or read music.
The last one I had I was alone breast feeding my son when I felt one coming on but didn't get time to lay my son and myself on the floor as a safety measure as usual. When I came round my son was screaming but I kept thinking 'what is that?' it took a few minutes to work out he was a baby but I couldn't remember I had one. I could almost hear part of my brain shouting at me that he was my son and I needed to get help as if there was part of my brain that was desperate to get control but the rest of my brain felt dead. I had to drag myself on my stomach up some stairs and across 2 rooms to get to a phone to get help and hope my son stayed where I left him - I didn't even know if I had hurt him so needed help for us both, luckily he was just scared..
My neurologist was unconcerned about this and just told me to take the drugs, shut up and that I was clear to drive after 12 months. My nurse was very concerned and also said that we wouldn't know if the drugs worked because my seizures were so random and I have been 7 years without drugs and no seizures so we would never know if the drugs were working or if I was not having seizures and said that I didn't have to take the drugs if I was unhappy as they had made me very ill, he was also worried I was told to apply for a driving permit. I had already decided I felt unsafe to drive and have never done so but I was told that I was legally safe to drive despite the fact the medication might not work.
My nurse thinks I should have another MRI ASAP as he thinks that I could have had a smaller cyst when I was younger that caused very mild seizures and that it may have burst and that is why I was clear for 7 years and that pregnancy can actually bring on cysts or make existing ones grow rapidly and that is a worry that in a year it could have grown 10.8mm where as my neuro passed it off as being their when I was born no investigation of this. I have asked for copies of MRIs from when I was a child but they are not giving them to me and won't say if a cyst was present.
I am trying to find a new neuro and would suggest to anyone that they should seek a 2nd opinion. I also suggest you join some bloggs were suffers can share their experiences and you can also share information like, which neurologist have been particularly unhelpful and should be avoided and ones which have done everything they can to put your mind at ease and offered you help and support.
I was told that as MRI scans get better they are finding more and more and that small ones are common and that some neuros are taking the standard line that they are common and harmless whatever size, others recognise the problems as they get larger and things can be done about them but there seems to be a great divide between big and small, in my case over 1cm is deemed small but I feel that due to the restricted space inside the head that this is rather large and although it may not cause problems around the area of the brain it is in it doesn't mean that as it pushes the rest of your brain against your skull problems can't pop up somewhere else, and many other people and doctors also share these thoughts but you do have to go and look for them.
Until sufferers get together and share their symptoms and people can show that we suffer these Sid effects then it will continue be dismissed. I certainly never connected the spinal pain with the cyst but it is something a lot of suffers say they have and from my experience, something too common to be a coincidence.
To anyone who suffers this all I can say is do a lot of research yourself. Read articles, medical reports and print them out to take to your neuro or doctor and discuss them, if they don't like it then go somewhere else. Research specialists in your area, nationwide and abroad. To start with I was reluctant to go very far for a 2nd opinion but now the pain is very bad and I am aware of the trouble they can cause and that my neuro would probably not even acknowledge it if I developed Hydrocephalus, I would travel anywhere to see someone that could help.
I have also been told I have a pineal cyst.
I found out by being copied into a letter from my neurologist to my GP that I have a cyst 10.8mm and that I will have another scan in 12 months time. No explanation as to what this is or whether 10.8mm is large.
It was found during an MRI scan after I had 2 severe fits, one the day before my son was born and the 2nd when I was alone with my son when he was 6 months old and I had to be taken to A&E. I had fits when I was about 14yrs old and the Dr said it was stress or hormones then I had nothing again until I was 23 but these were severe.
I was told I had epilepsy and given drugs before any tests were done.
When I had the MRI they found the cyst and never even bothered to explain what it was I had but as most of you will know you have an over whelming sense of terror when someone tells you something is in your brain, after all if it gets bigger there isn't much room for it to go before it presses on something and causes problems.
I discussed it with my GP who shared my concerns and referred me to the neurologist at my local hospital who was very annoyed to see me.
I was greeted with 'I don't know why you're here - the Dr says you want this thing explained but I don't see why' I wanted to shout that she should understand that with no knowledge of the condition it is terrifying to be copied in to letter like that and that I wanted to know if this was big, what it meant, how old it was, how fast it grows, could it be the cause the searing pains that shoot through my head, the constant headaches, vision troubles, speech troubles, loss of memory, fits, twitching in my arms and face, the swelling pain at the base of my skull and the spinal pain I've had physio for.
I was told that 10.8mm was tiny, they find them all the time and they cause no problems whatsoever. She even asked if the problems I was complaining of may be psychological or that I should drink less alcohol - I don't drink! She said she'll book a scan for 12 months and then they'll see if it has grown and work out the growth rate if that would make me feel better. It doesn’t make me feel better. A 12 month scan I have found out is normal for a small cyst but over 1 cm should not be considered small.
I left feeling absolutely furious. I was very rudely told that she was the specialist and therefore knew everything and I knew nothing. She would decide what information was worth me being informed of.
I got home and hit the internet to find an answer. I have spoken to other people with cysts all suffering from the same problems and all saying that they know that there is a link and as we meet more people with the same problems we are certain that it is all part and parcel of the condition but only a handful have found neurologists that say that they can cause these problems.
I was told that 10.8mm (1.08cm) was tiny. I have since found out that 0.5cm is small and anything over 1cm is large, rare and cause for concern as it can cause Hydrocephalus which will cause pressure headaches and will certainly cause fits and migraines. I was furious with what the neuro had told me but she is refusing to book another appointment to speak to me or do another MRI before June 2008.
I also have an epilepsy nurse who is wonderful and he has said that it is most certainly the cause of the unpredictable seizures. I do have a de-ja-vu type warning just before I have one and usually a sharp smell of ammonia at the back of my nose. After the seizure I have no memory at all, I am terrified, confused, unable to recognise myself -this can last minutes or months, often can't move and it causes me to be sick for several hours after, I have had to re-teach myself to write and can no longer read aloud or read music.
The last one I had I was alone breast feeding my son when I felt one coming on but didn't get time to lay my son and myself on the floor as a safety measure as usual. When I came round my son was screaming but I kept thinking 'what is that?' it took a few minutes to work out he was a baby but I couldn't remember I had one. I could almost hear part of my brain shouting at me that he was my son and I needed to get help as if there was part of my brain that was desperate to get control but the rest of my brain felt dead. I had to drag myself on my stomach up some stairs and across 2 rooms to get to a phone to get help and hope my son stayed where I left him - I didn't even know if I had hurt him so needed help for us both, luckily he was just scared..
My neurologist was unconcerned about this and just told me to take the drugs, shut up and that I was clear to drive after 12 months. My nurse was very concerned and also said that we wouldn't know if the drugs worked because my seizures were so random and I have been 7 years without drugs and no seizures so we would never know if the drugs were working or if I was not having seizures and said that I didn't have to take the drugs if I was unhappy as they had made me very ill, he was also worried I was told to apply for a driving permit. I had already decided I felt unsafe to drive and have never done so but I was told that I was legally safe to drive despite the fact the medication might not work.
My nurse thinks I should have another MRI ASAP as he thinks that I could have had a smaller cyst when I was younger that caused very mild seizures and that it may have burst and that is why I was clear for 7 years and that pregnancy can actually bring on cysts or make existing ones grow rapidly and that is a worry that in a year it could have grown 10.8mm where as my neuro passed it off as being their when I was born no investigation of this. I have asked for copies of MRIs from when I was a child but they are not giving them to me and won't say if a cyst was present.
I am trying to find a new neuro and would suggest to anyone that they should seek a 2nd opinion. I also suggest you join some bloggs were suffers can share their experiences and you can also share information like, which neurologist have been particularly unhelpful and should be avoided and ones which have done everything they can to put your mind at ease and offered you help and support.
I was told that as MRI scans get better they are finding more and more and that small ones are common and that some neuros are taking the standard line that they are common and harmless whatever size, others recognise the problems as they get larger and things can be done about them but there seems to be a great divide between big and small, in my case over 1cm is deemed small but I feel that due to the restricted space inside the head that this is rather large and although it may not cause problems around the area of the brain it is in it doesn't mean that as it pushes the rest of your brain against your skull problems can't pop up somewhere else, and many other people and doctors also share these thoughts but you do have to go and look for them.
Until sufferers get together and share their symptoms and people can show that we suffer these Sid effects then it will continue be dismissed. I certainly never connected the spinal pain with the cyst but it is something a lot of suffers say they have and from my experience, something too common to be a coincidence.
To anyone who suffers this all I can say is do a lot of research yourself. Read articles, medical reports and print them out to take to your neuro or doctor and discuss them, if they don't like it then go somewhere else. Research specialists in your area, nationwide and abroad. To start with I was reluctant to go very far for a 2nd opinion but now the pain is very bad and I am aware of the trouble they can cause and that my neuro would probably not even acknowledge it if I developed Hydrocephalus, I would travel anywhere to see someone that could help.
Amy
I share something with you... About 4 years ago i was told i had the same thing. I didn't start to do research untill this last year. I was never retested or anything after the Doctor told me i had nothing to worry about. But i don't belive that. I was reading a book tonight and something was brought to my attention.
I have been married for a year and a half, and we have desided to have childeren now. The thing that i read was that the pineal glad helps with that. Now i am worried, i have had the headakes once again, blurred vision, 'Black outs," and i am not sure what to do at this point. Any luck in what you were looking for, I have questions, hopefully you can help shed some light in on me.
Stephanie
I share something with you... About 4 years ago i was told i had the same thing. I didn't start to do research untill this last year. I was never retested or anything after the Doctor told me i had nothing to worry about. But i don't belive that. I was reading a book tonight and something was brought to my attention.
I have been married for a year and a half, and we have desided to have childeren now. The thing that i read was that the pineal glad helps with that. Now i am worried, i have had the headakes once again, blurred vision, 'Black outs," and i am not sure what to do at this point. Any luck in what you were looking for, I have questions, hopefully you can help shed some light in on me.
Stephanie
Hi everyone.
On November 10th 2006 I had my first seizure ever. I have for at least 10 years suffered from migraines and tingly sensations in my limbs and face. Usually 4 hours of sleep a night is all I get. I have been fine with that, just assuming that i was stresssed or whatever. Doctors have always said it is nothing to worry about. After my seizure I had another one in my sleep and was unaware until my partner woke me up to take me to the hospital. I had all the tests done, MRI CTscan and EEg. My neuro said I have a pineal cyst, but it is nothing to worry about. I think that it might be something to worry about. If I had been alone or with just my children I can't imagine what would have transpired. I was eating at the time and my boyfriend had to pull food out of my mouth. I have read that in worst case scenarios these cysts can cause seizures. Well................ I am so worried I can not concentrate and I really don't ever want to be alone. Does anyone have a suggestion?
Vanessa
Regina,SK Canada
On November 10th 2006 I had my first seizure ever. I have for at least 10 years suffered from migraines and tingly sensations in my limbs and face. Usually 4 hours of sleep a night is all I get. I have been fine with that, just assuming that i was stresssed or whatever. Doctors have always said it is nothing to worry about. After my seizure I had another one in my sleep and was unaware until my partner woke me up to take me to the hospital. I had all the tests done, MRI CTscan and EEg. My neuro said I have a pineal cyst, but it is nothing to worry about. I think that it might be something to worry about. If I had been alone or with just my children I can't imagine what would have transpired. I was eating at the time and my boyfriend had to pull food out of my mouth. I have read that in worst case scenarios these cysts can cause seizures. Well................ I am so worried I can not concentrate and I really don't ever want to be alone. Does anyone have a suggestion?
Vanessa
Regina,SK Canada
You should get a copy of all tests to start a hm-file. They
will give you them upon request. A pineal cyst is generally
found just by accident on an mri. They'll be there for yrs. w/o
any symptoms or you knowing. The key is to get copy & read the
sz. & if it mentions any specific place it's near to. I haven't heard of fainting being related but I don't know everything abt
these. I do know that I've heard that if they are over 1cm, slt
under 1/2", people have hdaches & most common have off/on dbl-
vision. Then Opthalmologist can ck visual fields to help check
cause of problems. If eyes OK then it's not cyst problem. When
I was a child, I had fainting spells for no reason. Maybe they
were 3-4x yr. a few yrs. Then just stopped. Later early teens
got light-headed off/on like I was going to faint but didn't.
Then went away. A few decades later, we discovered I was called
borderline hypoglycemic. Stress/playing caused me to burn insulin fast & I'd faint. Now I snack, handful of nuts abt 5x
day between meals & problem is fixed. May want to consider a
glucose tolerance test. It's different than basic lab test or
just think how you respond to stress events while hungry? Also
maybe consider a hm-cuff BP monitor & ck 2xday & record. Lo BP
or glycemia can cause hdaches. Get copies & see what it reads.
If it's a certain sz, ask Dr if fol-up mri in a yr would be
suggested. They aren't a problem unless they pattern signicant
growth change. Now you have a base to work with. Gd-luck.
will give you them upon request. A pineal cyst is generally
found just by accident on an mri. They'll be there for yrs. w/o
any symptoms or you knowing. The key is to get copy & read the
sz. & if it mentions any specific place it's near to. I haven't heard of fainting being related but I don't know everything abt
these. I do know that I've heard that if they are over 1cm, slt
under 1/2", people have hdaches & most common have off/on dbl-
vision. Then Opthalmologist can ck visual fields to help check
cause of problems. If eyes OK then it's not cyst problem. When
I was a child, I had fainting spells for no reason. Maybe they
were 3-4x yr. a few yrs. Then just stopped. Later early teens
got light-headed off/on like I was going to faint but didn't.
Then went away. A few decades later, we discovered I was called
borderline hypoglycemic. Stress/playing caused me to burn insulin fast & I'd faint. Now I snack, handful of nuts abt 5x
day between meals & problem is fixed. May want to consider a
glucose tolerance test. It's different than basic lab test or
just think how you respond to stress events while hungry? Also
maybe consider a hm-cuff BP monitor & ck 2xday & record. Lo BP
or glycemia can cause hdaches. Get copies & see what it reads.
If it's a certain sz, ask Dr if fol-up mri in a yr would be
suggested. They aren't a problem unless they pattern signicant
growth change. Now you have a base to work with. Gd-luck.
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