I was just daignosed with a pineal cyst 9mm. I don't think that I have had it for more than a few years, or maybe a shorter amount of time. I have had some the symptoms previously described for years with more symptoms added periodically. I have been diagnosed with depression, migraines, and the latest is fibromyalgia. I am at the end of my rope with doctors. I don't necessarly want to have surgery, I just want someone to say we know what is causing your problems so that I can get some idea of what to do about it. I am on so much medication that I probably pay the pharmacist's salary!
Frustrated in Florida
Frustrated in Florida
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I suffered chronic occipital headaches and vision problems/squints etc as well as being off balance and insomnia for around 6 months . I was given an MRI and diagnosed with a pineal cyst 1.4cm. I then had another 3 months later and it measured 1.7cm. I was put on anti-depressants and had to up the dose monthly for the past 3 months , and now have all the previous symptoms & more and am being told to basically put up with it till my next 6 monthly review. i don't know about you but I'm finding it hard to function at the moment as my body doesn't seem to know when to sleep and I've constant extreme headache (pressure) and I am getting very irrational & agressive - probably due to lack of sleep. My whole family is suffering because of this. anyone in the same boat?
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I am 19 and I have been having headaches every day since December of '07, coming up on a year in about 3 months. For the first couple of months I didn't do anything about it then finally went to the doctor. Where there they would put me on one type of medicine, said if that didn't work then come back. I ended up coming back at least 4 or 5 times before they wanted me to see a neurologist. He got my results and left me a voicemail on my phone saying that he found a cyst on my pineal gland but he wasn't to worried about it. For the first 2 months, he put me on one kind of medicine. I was suppose to go back and when I did, I told him it wasn't working so he put me on a different kind of medicine. Two months later I was suppose to go back, it was the same thing over again. That med. wasn't working either. Next month I'm suppose to go back and it'll be the same thing with me telling him the medicine isn't working. I'm suppose to take another mri/mra and see what its done since I took my last one. I use to be a pretty upbeat person always laughing with everyone and now, I am not wanting to get up and more depressed all the time. I work full time and it is affected how I do my job. At my line of work I can't afford to not be able to pay attention. I can't focus, I start to get headaches when I'm outside in the sun, my memory is so bad that most of the time I can't remember what day it is. I'm tired of living like this all the time and don't want to deal with it. I don't want to think about surgery, that option just scares me. What can I do about this? Does anyone seem to know? Any ideas please let me know...email is ****
**edited by moderatoe**emails not allowed**
**edited by moderatoe**emails not allowed**
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I just found out today that my 15 year old niece has a pineal cyst. Does anyone have any idea what is involved in the removal of this? Or what the risks of such a procedure are? Any input would be very appreciated.
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I too have been trying to live with a pineal cystic/tumor. Major headaches, sleep disorder, directional disorders, vertigo, extreme sleepiness that they say is Narcolepsty, loss of concentration, I go from one thing to the other in a split second! The worst of all is the MEMORY LOSS. More like short term memory loss and it is getting so bad, I feel like I have dementia. I am 36 now, found the cyst four years ago with major headaches, migraines, and the meds they gave would not work. Going to the neurologist again today. I go every three months for the past three years. I need to know what my options are. I am tired of being tired and confused.
%-)
%-)
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I also have a pinneal cyst. I have been keeping a log of what has been going on with it. I will post it below. Mine is currently 13mm and I have been told by 2 neurologists and a neurosurgeon that it is incedental and not causing my problems. They say I have a migrane disorder, what ever that is. Can you help me? Have any of you found any releif?
OK, I know not everyone knows what is going on with me medically, so I figured I'd write this down and fill everyone in. From the beginning.
For those of you who have known me long enough you may remember when I was 12 my face blew up like a balloon. I had a cyst in my mouth that had to be surgically removed. It was originally caused by me slamming mouth first into the leg of my parents coffee table when I was 8.
Sometime mid last year the cyst came back. But instead of growing outward, it was growing inward. I did not realize how big it had gotten until my brother Mike pulled me aside when I was at his wedding reception and asked me why my teeth were so screwed up. The cyst had grown so large that it was pushing teeth out of alignment, I had a lump in the roof of my mouth, my face was visibly swollen (barely), and I was now snoring at night because it was growing into my sinus (I didn't know that at the time).
Now before I go any further, I do have to take a moment to thank Mike for pushing me to get this checked out. I also have to thank my mom and dad who also pushed me and footed the bill for this because I didn't have any medical insurance at the time. They spent ALOT of money and I know that they are financially hurting because of this.
A CAT scan was done to determine what exactly was going on. Now I don't know the exact size of this thing, but I was told that the cyst's final size was "bigger than a golf ball but smaller than a baseball". I was also told that if I didn't get this thing removed, it would eventually kill me. So it was kind of important to have this thing taken out. In addition to being very large, the cyst actually consumed quite a bit of bone from my upper jaw, thats what allowed my teeth to start moving. Aparantly if I had gotten hit in the face... ever see a glass shatter, thats what would have happened to my upper jaw.
Surgery was done on 2/10/09 in the hospital. During the surgery they found that three teeth were being consumed by the cyst so they had to be permantly removed. They also put in a bone graft to help with all the bone loss. Unfortunately my problems didn't stop there.
Now the cyst was sent to the pathology lab and it came back as benign, thankfully. But less than a week after the surgery, my face started swelling considerably more than post surgery swelling and I started getting low grade fevers. The surgeon opened the surgical site and found an infection. She put in a drain to allow fluid and puss to drain out (pleasant huh, be glad you didn't have to taste it constantly), and then started me on a heavy 10 day course of antibiotics.
That didn't work.
Two weeks post-op and the infection is still there. Now I am starting to have other symptoms. I start getting super tired out of nowhere. Now I'm not talking a slow gradual tired, this hits me like someone flipping a light switch. I also start getting vertigo. A short time later I start getting pressure in my head and killer headaches. After that I start having abdominal pains.
Now, I get my family doctor involved. The infection is still raging on even with various antibiotics in my system. My doctor is now worried I have contracted a MRSA infection. He checks everything the surgeon had done. Turns out the surgeon has me on a toxic dose of ibuprofen (3200 mg a day, 800 mg more than max dose). He is now worried that I have an infection in my colon because of all the antibiotics that I have been taking. Aparantly the good bacteria in your colon can be killed off by too many antibiotics, and then all the bad nasty bacteria can take over. Fun. He puts me on a stronger antibiotic designed to treat bone infections, starts me on pro-biotic supplements to help my colon, orders a wound culture to find out exactly what kind of bacteria is in my mouth, and of course has me back down on the ibprofen.
Four weeks post-op, the infection is finally gone along with the low grade fevers. My stomach feels a million times better. The bone graft is taking and healing well. All the stitches and drain are out of my mouth and everything is healing nicely. BUT, I still have the fatigue, vertigo, pressure and headaches. And they are getting worse to the point where the vertigo is nearly constant and the pressure isn't far behind in being constant. And now I am starting to have occasional problems with my vision (flashes, floaters, and blurriness)
I have had 2 more CAT scans, several x rays, countless blood tests and most recently an MRI.
This is the current findings.
They found a 12 mm cyst in my brain. Smack in the center.
Its called a Pineal Cyst, and aparantly, they are not uncommon. 50% of you reading this probably have one and never will never know it. They are a common finding on an MRI, but most that are found don't cause problems because they are 5mm or smaller. They don't know what causes them. They do know anything larger than 10 mm usually cause problems depending on shape and position.
The symptoms of a problematic pineal cyst are vertigo, headaches, pressure and visual distortions.
So the Pineal cyst explains all of my current symptoms to the T
This is theory A
The theory B is that I have an inner ear infection (explaining the vertigo and headaches). Plus I have neck strain (explaining the pressure). Plus I have some undiagnosed visual problem.
I got to tell you, theory B seems pretty unlikely to me.
So next step is to check out this cyst in my brain. I see a second neurologist on the 23rd of this month and a neurosurgeon on the 29th.
Well, thats everything so far. I will update you all as I have more. Please pray for me though, as I am sick and tired of being sick and tired. I just want to go back to work.
4/25/2009 - Ok I Saw the neurologist the other day. He is saying the pineal cyst is an incedental finindg and that the real cause of my problems is a "Migraine Syndrome". The syndrome was causeed by the inital surgery and the following infection and medications throwing my body chemistry out of whack. He put me on a medication that will help "reset" my brain, it will take a month for that to happen. I am still seeing the surgeon on the 29th just to be on the save side.
6/2/2009 - I really need to keep this thing up to date.
A few new developments since my last update. The neurosurgeon agrees that the pineal cyst is an incedental finding and not the cause of my problems.
The dizziness and pressure in my head have been steadily increasing. I am finding myself falling or loosing my balance unexpectedly with more frequency. Sometimes it feels like my eyes are playing tricks on me, making me feel like stairs are taller than they are when stepping down.
My headaches have gotten extremely bad. I get two types, the first is like a massive explosion goes off in my head. Extremely painful, but it usually only lasts for 60 to 90 seconds. Often triggered by a high pitched sound, but not always. I get no advance warning that there is a headache comming. Medication does not stop these headaches.
The second type is still painful, but extremely long lasting. Usually for 2-4 hours. I can feel these headaches starting small and building. My medication can usually reduce the pain or stop the headache completely. Drinking a nice strong cup of coffee can also help reduce the pain.
I have devloped a new symptom. I get uncontrollable tremors in my hands. Doesnt last long, 30 seconds or so, but very disturbing to loose control of ones hands.
I had a very frightening thing happen the other day. I lost 3 hours of time. My wife went into Barnes & Noble to sit in the cafe and get a cup of tea. I went across the street to AC Moore to get some art supplies for her very quickly. Just run in and out. I came back to Barnes & Noble and my wife yells at me asking me where i have been for the last 3 hours. I thought she was joking. She wasnt. I have no idea where I was or what I was doing. I did get her the things that I went there for, I just have no clue what I did with the remaining time. I dont know if this is another symptom or not since it only happened the once. Something to be careful of.
I have spent the better portion of last month trying to reach my neurologist with the above symptoms and let him know the medication he gave me to "balance" my brain chemistry has had little to no effect. I have been getting one of the listed side effects of the medication in great abundance. The medication causes tingling in the extredimidies similar to the "dead leg" effect you get if you sit on you foot the wrong way for too long. I was getting this tingling in my feet and my hands for hours on end. Aparantly, I find out, this is a bad thing.
My doctor finally calles me back earlier last week, and tells me to get off the medication ASAP. I have to come off slowly. My last dose is tomorow. The soonest appointment I can get to see him is the 23rd. So, once again, I wait.
Now I am just worried about finances. My temporary disability has to be renewed, but I cant get the doctor to fill out the paperwork until the 23rd. Plus it takes the state 2 weeks to process it once they recieve it. So, I really dont know I am going to pay the electric bill and rent this month.
9/2/2009 - Some more news
Ok. The neurologist has switched me to a new medication. Dont think it has done anything for me though. Pain and dizzyness has continued to worsen, but not as drastically as before. I happened to mention to my neurologist that my family doctor thinks that I have sleep apnea (I stop breathing at night while I sleep), but I never did anything about it. This now brings us to.......
Theory C
The surgery back in Feb was right near the major facial nerve. The nerver was damaged or irritated by the surgery which triggered a migrane syndrome. It could have gone away on its own but, because I dont sleep properly it stays. Not only does it stay, but aparantly the migrane syndrome makes sleeping harder, which makes the sleep apnea worse, which makes the migranes worse , which make sleeping harder, which makes the sleep apena worse, ... well you get my drift.
So the neurologist sends me for two series of tests (check out the photos) to check if I do indeed have sleep apnea. Turns out I have the worst type, obstructive sleep apnea. So, on Sept 17, I see the pulmonologist to get a C-PAP machine to help me sleep correctly.
The good news is my neurologist says that this may solve all my problems and if it is going to have any affect, we will see it within a week or two. Or not at all.
OK, some bad news. I had another MRI to check on the Pinneal cyst in my head. It has increased it size from 12mm to 13mm. This could be an indication of growth. But the neurologist doesnt want to do anthing with the cyst just yet. He wants to see if the CPAP machine has any affect on things. If there is no change, surgery may become an option.
Thats it for now. Keep you posted. I see my neurologist on Sept 22.
OK, I know not everyone knows what is going on with me medically, so I figured I'd write this down and fill everyone in. From the beginning.
For those of you who have known me long enough you may remember when I was 12 my face blew up like a balloon. I had a cyst in my mouth that had to be surgically removed. It was originally caused by me slamming mouth first into the leg of my parents coffee table when I was 8.
Sometime mid last year the cyst came back. But instead of growing outward, it was growing inward. I did not realize how big it had gotten until my brother Mike pulled me aside when I was at his wedding reception and asked me why my teeth were so screwed up. The cyst had grown so large that it was pushing teeth out of alignment, I had a lump in the roof of my mouth, my face was visibly swollen (barely), and I was now snoring at night because it was growing into my sinus (I didn't know that at the time).
Now before I go any further, I do have to take a moment to thank Mike for pushing me to get this checked out. I also have to thank my mom and dad who also pushed me and footed the bill for this because I didn't have any medical insurance at the time. They spent ALOT of money and I know that they are financially hurting because of this.
A CAT scan was done to determine what exactly was going on. Now I don't know the exact size of this thing, but I was told that the cyst's final size was "bigger than a golf ball but smaller than a baseball". I was also told that if I didn't get this thing removed, it would eventually kill me. So it was kind of important to have this thing taken out. In addition to being very large, the cyst actually consumed quite a bit of bone from my upper jaw, thats what allowed my teeth to start moving. Aparantly if I had gotten hit in the face... ever see a glass shatter, thats what would have happened to my upper jaw.
Surgery was done on 2/10/09 in the hospital. During the surgery they found that three teeth were being consumed by the cyst so they had to be permantly removed. They also put in a bone graft to help with all the bone loss. Unfortunately my problems didn't stop there.
Now the cyst was sent to the pathology lab and it came back as benign, thankfully. But less than a week after the surgery, my face started swelling considerably more than post surgery swelling and I started getting low grade fevers. The surgeon opened the surgical site and found an infection. She put in a drain to allow fluid and puss to drain out (pleasant huh, be glad you didn't have to taste it constantly), and then started me on a heavy 10 day course of antibiotics.
That didn't work.
Two weeks post-op and the infection is still there. Now I am starting to have other symptoms. I start getting super tired out of nowhere. Now I'm not talking a slow gradual tired, this hits me like someone flipping a light switch. I also start getting vertigo. A short time later I start getting pressure in my head and killer headaches. After that I start having abdominal pains.
Now, I get my family doctor involved. The infection is still raging on even with various antibiotics in my system. My doctor is now worried I have contracted a MRSA infection. He checks everything the surgeon had done. Turns out the surgeon has me on a toxic dose of ibuprofen (3200 mg a day, 800 mg more than max dose). He is now worried that I have an infection in my colon because of all the antibiotics that I have been taking. Aparantly the good bacteria in your colon can be killed off by too many antibiotics, and then all the bad nasty bacteria can take over. Fun. He puts me on a stronger antibiotic designed to treat bone infections, starts me on pro-biotic supplements to help my colon, orders a wound culture to find out exactly what kind of bacteria is in my mouth, and of course has me back down on the ibprofen.
Four weeks post-op, the infection is finally gone along with the low grade fevers. My stomach feels a million times better. The bone graft is taking and healing well. All the stitches and drain are out of my mouth and everything is healing nicely. BUT, I still have the fatigue, vertigo, pressure and headaches. And they are getting worse to the point where the vertigo is nearly constant and the pressure isn't far behind in being constant. And now I am starting to have occasional problems with my vision (flashes, floaters, and blurriness)
I have had 2 more CAT scans, several x rays, countless blood tests and most recently an MRI.
This is the current findings.
They found a 12 mm cyst in my brain. Smack in the center.
Its called a Pineal Cyst, and aparantly, they are not uncommon. 50% of you reading this probably have one and never will never know it. They are a common finding on an MRI, but most that are found don't cause problems because they are 5mm or smaller. They don't know what causes them. They do know anything larger than 10 mm usually cause problems depending on shape and position.
The symptoms of a problematic pineal cyst are vertigo, headaches, pressure and visual distortions.
So the Pineal cyst explains all of my current symptoms to the T
This is theory A
The theory B is that I have an inner ear infection (explaining the vertigo and headaches). Plus I have neck strain (explaining the pressure). Plus I have some undiagnosed visual problem.
I got to tell you, theory B seems pretty unlikely to me.
So next step is to check out this cyst in my brain. I see a second neurologist on the 23rd of this month and a neurosurgeon on the 29th.
Well, thats everything so far. I will update you all as I have more. Please pray for me though, as I am sick and tired of being sick and tired. I just want to go back to work.
4/25/2009 - Ok I Saw the neurologist the other day. He is saying the pineal cyst is an incedental finindg and that the real cause of my problems is a "Migraine Syndrome". The syndrome was causeed by the inital surgery and the following infection and medications throwing my body chemistry out of whack. He put me on a medication that will help "reset" my brain, it will take a month for that to happen. I am still seeing the surgeon on the 29th just to be on the save side.
6/2/2009 - I really need to keep this thing up to date.
A few new developments since my last update. The neurosurgeon agrees that the pineal cyst is an incedental finding and not the cause of my problems.
The dizziness and pressure in my head have been steadily increasing. I am finding myself falling or loosing my balance unexpectedly with more frequency. Sometimes it feels like my eyes are playing tricks on me, making me feel like stairs are taller than they are when stepping down.
My headaches have gotten extremely bad. I get two types, the first is like a massive explosion goes off in my head. Extremely painful, but it usually only lasts for 60 to 90 seconds. Often triggered by a high pitched sound, but not always. I get no advance warning that there is a headache comming. Medication does not stop these headaches.
The second type is still painful, but extremely long lasting. Usually for 2-4 hours. I can feel these headaches starting small and building. My medication can usually reduce the pain or stop the headache completely. Drinking a nice strong cup of coffee can also help reduce the pain.
I have devloped a new symptom. I get uncontrollable tremors in my hands. Doesnt last long, 30 seconds or so, but very disturbing to loose control of ones hands.
I had a very frightening thing happen the other day. I lost 3 hours of time. My wife went into Barnes & Noble to sit in the cafe and get a cup of tea. I went across the street to AC Moore to get some art supplies for her very quickly. Just run in and out. I came back to Barnes & Noble and my wife yells at me asking me where i have been for the last 3 hours. I thought she was joking. She wasnt. I have no idea where I was or what I was doing. I did get her the things that I went there for, I just have no clue what I did with the remaining time. I dont know if this is another symptom or not since it only happened the once. Something to be careful of.
I have spent the better portion of last month trying to reach my neurologist with the above symptoms and let him know the medication he gave me to "balance" my brain chemistry has had little to no effect. I have been getting one of the listed side effects of the medication in great abundance. The medication causes tingling in the extredimidies similar to the "dead leg" effect you get if you sit on you foot the wrong way for too long. I was getting this tingling in my feet and my hands for hours on end. Aparantly, I find out, this is a bad thing.
My doctor finally calles me back earlier last week, and tells me to get off the medication ASAP. I have to come off slowly. My last dose is tomorow. The soonest appointment I can get to see him is the 23rd. So, once again, I wait.
Now I am just worried about finances. My temporary disability has to be renewed, but I cant get the doctor to fill out the paperwork until the 23rd. Plus it takes the state 2 weeks to process it once they recieve it. So, I really dont know I am going to pay the electric bill and rent this month.
9/2/2009 - Some more news
Ok. The neurologist has switched me to a new medication. Dont think it has done anything for me though. Pain and dizzyness has continued to worsen, but not as drastically as before. I happened to mention to my neurologist that my family doctor thinks that I have sleep apnea (I stop breathing at night while I sleep), but I never did anything about it. This now brings us to.......
Theory C
The surgery back in Feb was right near the major facial nerve. The nerver was damaged or irritated by the surgery which triggered a migrane syndrome. It could have gone away on its own but, because I dont sleep properly it stays. Not only does it stay, but aparantly the migrane syndrome makes sleeping harder, which makes the sleep apnea worse, which makes the migranes worse , which make sleeping harder, which makes the sleep apena worse, ... well you get my drift.
So the neurologist sends me for two series of tests (check out the photos) to check if I do indeed have sleep apnea. Turns out I have the worst type, obstructive sleep apnea. So, on Sept 17, I see the pulmonologist to get a C-PAP machine to help me sleep correctly.
The good news is my neurologist says that this may solve all my problems and if it is going to have any affect, we will see it within a week or two. Or not at all.
OK, some bad news. I had another MRI to check on the Pinneal cyst in my head. It has increased it size from 12mm to 13mm. This could be an indication of growth. But the neurologist doesnt want to do anthing with the cyst just yet. He wants to see if the CPAP machine has any affect on things. If there is no change, surgery may become an option.
Thats it for now. Keep you posted. I see my neurologist on Sept 22.
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I have been having bad lightheadedness and dizzy spells for the past 6 months and also blacked out back in May. It has progressively gotten worse over the past month to where I have up to 5-10 dizzy spells in a day and will feel uneasy for up to a few hours after. I refuse to drive anywhere further than 10 miles by myself because of it. I kept putting off going into the dr bcs I figured it would go away but with two small children in the house I was getting scared. My husband is in the Army and is constantly gone. I finally went in and had a CT last week and just received my results today. It says that I have a large amount of chunky calcification in the region of the pineal gland and a lesion cannot be excluded. I also have a 7mm calcific structure in the midline frontal region along the falx which they are not yet ruling out a calcified tumor. I'm still not entirely sure what the falx is. More googling is in my immediate future I guess. I have been moody for as long as I can remember and have struggled with depression and horrible sleeping patterns for quite some time. My hair is also falling out more than it should. Just figured it was hormones from having kids (guess not). The pineal gland is responsible for secreting melatonin so it makes complete sense for the lesions, tumors or cysts to cause depression and also lack of sexuality. It's almost comforting knowing that someone else is/was experiencing the dizziness and good to know that how I'm feeling is real. That's been the hardest part for me is not feeling "grounded", if that makes sense. Has anyone had surgery in this area or has had any luck with other treatments? I have an MRI in 2 weeks so hopefully there will be a more diffinitive answer. I'm also going to see a neurologist but just waiting on my referral to go thru with the military.
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I am a 29 year old female with a penial cyst measuring 14 x 7 mm with constant dizzy spells, fatigue and vision disturbance. I have undergone several thousand blood test all resulting in normal. I've had a vision test both dilated and non which resulted in perfect vision. They are now telling me that I might have a virus that went to my heart but nobody really seems to have an answer. All can agree that the cyst doesn't connect to my symptoms however it's getting worse and I am frustrated to say the least. I have a tilt test slated for this month although I feel it will come with more questions instead of answers
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Dear Peter B. and all the rest of us who suffer from the "unknown":
I have never been a blogger or poster of sorts, but I am at my Wits-End with my chronic migraines. Short history (sort of): Have had headaches since I was 10. Developed gran mal seizures at 15, reason: unknown, abnormal brainwaives. When I was young, (now 43, female), I basically ignored my seizures, gran mals when sleep, meds, etc. (rebellion). I willed myself into what the Dr. called a hybernation period. From about 18 to 21 I did not take meds and as far as I know didn't have any seizures. Again, ignored anything to with the word epliepsy. Then a sudden change happened and the gran mals were back, to stay this time. So I have been on several medications. For 10 years or so I took Dilatin until my body became immuned. Anyway, fast forward to around 26 yrs. I started having my first real symptons of partial complex, speech arrest and petit mals during the day. In my 30's the daytime symptons were gradually getting worse. Age 35 I had what I thought was a gran mal at first, but I dragged my body into the bathroom while the right side of my body was dead and my face was melting like wax in the mirror. Yep, TIA, if I was having a gran mal, I couldn't have gotten up.
From the time of that TIA, my headaches started getting worse over the next couple of years and finally became migraines. We began with 2 a month, then 3 (lasting from 3 to 7 days each). My bio-dad died at 43 with a frontal brain tumor (I was 24) he went into seizure status, one right after another and then brain dead, just like that. I had to turn him off the life machines.
I promised my mother from then on to always have an MRI every year so the same would not happen to me. Well, with the cost of such yearly tests, I skipped a couple of years 2002 to 2004. At Dr. visit, my neuro looked at me sternley and said, "you cannot skip a year, your tumor has grown!" I looked behind me and around the room and asked him who are you talking too? He said you, you have a pineal cyst, very small, but it grew .2cm to .6cm in two years. He said that I was born with it. Well, I'm here to tell you that I have been having MRI's since I was 10, and not one of the 20 neuros that I have seen prior has ever, ever mentioned any cyst. He also says it is inoperable since it is exactly right in the middle of my brain and we would just monitor it and to never skip a year of an MRI again. Well, I don't want to freak out about it so I ignore it.
My migraines for the last 3 years have increased immensley. My neuro suggests a hysterectomy could possibly be the culprit of my migraines. So, without doing my home work I have a total hyster at age 39 and wake up from surgery in complete menopause. Come to find out that since I had a TIA, Dr.'s will not perscribe HRT for me so I am on my own. This in itself has a mess of problems that I will not go into. Outcome of the surgery DID NOT HELP with migraines. I am telling you people this so you can learn from what I went through and if your considering as well.
The next year 2007, a co-worker (I've been a paralegal for 22 yrs), put an article on my desk about migraines being associated with heart conditions and a clinical study was taking place. So, one day when the pain is too much to bear I email the study. They call me in and run some tests and sd we have some bad news and some good news. Bad news is that you have too many migraines for the study (free). But, I do have what they thinks is a whole in my heart (air/blood going in on one side of my upper quadrant, etc.) and they want to do exploritory surgery to see they are correct. Now, the whole basis of this is to eliminate migraines which they sd 80% of their patients who have had the surgery, did get relief. So excited!!!! Well, in the surgery the found a pocket collecting blood just waiting for the right movement and BOOM Stroke!!! So, the put an amplatzer in my heart (this is all through a vein by my groin), which is a tiny metal connector. The surgery is called PFO Closure. Again, this might help some of you and that is why I am telling you all of what I have gone through. So, I am saved from anymore dibitating strokes (probably the cause of the 2001 TIA), but alas it DID NOT HELP with migraines at all.
In 2008, I was on my 10th or 11th day of a migraine and I had already been through so much and I am a lost cause that I had an out of body experience and just wanted the pain to go away and took 150 phenobarb. Needless to say, I was found 9 hours later and taken to the hospital and was in ICU for 4 days. Luckily, it wasn't my time and I will never do that again. I have no thoughts about it and I am grateful for the second chance.
In 2009, I finally had to stop working which I made $70,000 a year and applied for disability and was immediately approved. Now, we are struggling on one income and my SDI and are behind a month on everything and very, worried about my house, etc. My credit is taking a beating which I have worked so hard the last 9 years to build a very clean slate from my divorce 12 years ago.
Just two months ago, I was waking up to screaming painful headaches, that were different than my usual, unbearable migraines. I went to the ER they gave me a touradal shot and sent me home. Two days later, awoke again screaming. This time my mother to me to my neuro and he sent me straight to the ER again, but had ordered a CT, etc. so when I got there I could go right in. Upon results of the CT, they found an infection in my sphenoid sinuses behind my eyes between the brain and your face. Puss was 3 to 5 inches. If not taken care of immediately, can cause brain abcess, meningitis and get into the spinal cord. Yeah for me!!!!! So again, off to surgery. The ENT Dr. told me that this would help with the "screaming headaches", but not to count on help on the migraines, I smiled and said of course it won't. I have no expectations of every getting help with them every again. While they did that surgery, they also took out my tonsils and adnoids which were all inflamed and did some bone work on my nose so I hopefully will never get that kind of sinus infection again. I did not know I even had it. Well, I am still recovering but so much better than 3 weeks ago.
Since I am scared of money, I started working at a little boutique during the week 6 hrs a day for $10.00. While I'm doing this I just recently had a migraine for 16 days. Shots don't work, Frova triptan (which usually works) is not working and I'm dying of pain, trying to go back to work.
So, my conclusion of all of this is what is in my brain and what is it doing, causing, secreting or pressing on to make me go insane? I am at my wits-end, LITERALLY.
No one can tell me a damn thing, but send me to surgery on other causes everytime I walk in the door.
I am so sorry this is so long, but if any of what I have been through can help anyone else out there it was worth the hour that I wrote this down.
Thanks for your time.
Sincerely,
Wits-End
I have never been a blogger or poster of sorts, but I am at my Wits-End with my chronic migraines. Short history (sort of): Have had headaches since I was 10. Developed gran mal seizures at 15, reason: unknown, abnormal brainwaives. When I was young, (now 43, female), I basically ignored my seizures, gran mals when sleep, meds, etc. (rebellion). I willed myself into what the Dr. called a hybernation period. From about 18 to 21 I did not take meds and as far as I know didn't have any seizures. Again, ignored anything to with the word epliepsy. Then a sudden change happened and the gran mals were back, to stay this time. So I have been on several medications. For 10 years or so I took Dilatin until my body became immuned. Anyway, fast forward to around 26 yrs. I started having my first real symptons of partial complex, speech arrest and petit mals during the day. In my 30's the daytime symptons were gradually getting worse. Age 35 I had what I thought was a gran mal at first, but I dragged my body into the bathroom while the right side of my body was dead and my face was melting like wax in the mirror. Yep, TIA, if I was having a gran mal, I couldn't have gotten up.
From the time of that TIA, my headaches started getting worse over the next couple of years and finally became migraines. We began with 2 a month, then 3 (lasting from 3 to 7 days each). My bio-dad died at 43 with a frontal brain tumor (I was 24) he went into seizure status, one right after another and then brain dead, just like that. I had to turn him off the life machines.
I promised my mother from then on to always have an MRI every year so the same would not happen to me. Well, with the cost of such yearly tests, I skipped a couple of years 2002 to 2004. At Dr. visit, my neuro looked at me sternley and said, "you cannot skip a year, your tumor has grown!" I looked behind me and around the room and asked him who are you talking too? He said you, you have a pineal cyst, very small, but it grew .2cm to .6cm in two years. He said that I was born with it. Well, I'm here to tell you that I have been having MRI's since I was 10, and not one of the 20 neuros that I have seen prior has ever, ever mentioned any cyst. He also says it is inoperable since it is exactly right in the middle of my brain and we would just monitor it and to never skip a year of an MRI again. Well, I don't want to freak out about it so I ignore it.
My migraines for the last 3 years have increased immensley. My neuro suggests a hysterectomy could possibly be the culprit of my migraines. So, without doing my home work I have a total hyster at age 39 and wake up from surgery in complete menopause. Come to find out that since I had a TIA, Dr.'s will not perscribe HRT for me so I am on my own. This in itself has a mess of problems that I will not go into. Outcome of the surgery DID NOT HELP with migraines. I am telling you people this so you can learn from what I went through and if your considering as well.
The next year 2007, a co-worker (I've been a paralegal for 22 yrs), put an article on my desk about migraines being associated with heart conditions and a clinical study was taking place. So, one day when the pain is too much to bear I email the study. They call me in and run some tests and sd we have some bad news and some good news. Bad news is that you have too many migraines for the study (free). But, I do have what they thinks is a whole in my heart (air/blood going in on one side of my upper quadrant, etc.) and they want to do exploritory surgery to see they are correct. Now, the whole basis of this is to eliminate migraines which they sd 80% of their patients who have had the surgery, did get relief. So excited!!!! Well, in the surgery the found a pocket collecting blood just waiting for the right movement and BOOM Stroke!!! So, the put an amplatzer in my heart (this is all through a vein by my groin), which is a tiny metal connector. The surgery is called PFO Closure. Again, this might help some of you and that is why I am telling you all of what I have gone through. So, I am saved from anymore dibitating strokes (probably the cause of the 2001 TIA), but alas it DID NOT HELP with migraines at all.
In 2008, I was on my 10th or 11th day of a migraine and I had already been through so much and I am a lost cause that I had an out of body experience and just wanted the pain to go away and took 150 phenobarb. Needless to say, I was found 9 hours later and taken to the hospital and was in ICU for 4 days. Luckily, it wasn't my time and I will never do that again. I have no thoughts about it and I am grateful for the second chance.
In 2009, I finally had to stop working which I made $70,000 a year and applied for disability and was immediately approved. Now, we are struggling on one income and my SDI and are behind a month on everything and very, worried about my house, etc. My credit is taking a beating which I have worked so hard the last 9 years to build a very clean slate from my divorce 12 years ago.
Just two months ago, I was waking up to screaming painful headaches, that were different than my usual, unbearable migraines. I went to the ER they gave me a touradal shot and sent me home. Two days later, awoke again screaming. This time my mother to me to my neuro and he sent me straight to the ER again, but had ordered a CT, etc. so when I got there I could go right in. Upon results of the CT, they found an infection in my sphenoid sinuses behind my eyes between the brain and your face. Puss was 3 to 5 inches. If not taken care of immediately, can cause brain abcess, meningitis and get into the spinal cord. Yeah for me!!!!! So again, off to surgery. The ENT Dr. told me that this would help with the "screaming headaches", but not to count on help on the migraines, I smiled and said of course it won't. I have no expectations of every getting help with them every again. While they did that surgery, they also took out my tonsils and adnoids which were all inflamed and did some bone work on my nose so I hopefully will never get that kind of sinus infection again. I did not know I even had it. Well, I am still recovering but so much better than 3 weeks ago.
Since I am scared of money, I started working at a little boutique during the week 6 hrs a day for $10.00. While I'm doing this I just recently had a migraine for 16 days. Shots don't work, Frova triptan (which usually works) is not working and I'm dying of pain, trying to go back to work.
So, my conclusion of all of this is what is in my brain and what is it doing, causing, secreting or pressing on to make me go insane? I am at my wits-end, LITERALLY.
No one can tell me a damn thing, but send me to surgery on other causes everytime I walk in the door.
I am so sorry this is so long, but if any of what I have been through can help anyone else out there it was worth the hour that I wrote this down.
Thanks for your time.
Sincerely,
Wits-End
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I am new at this I am a 56 year old female who suffers from bad left sided headaches on 1/29/10 went to hospital cause of pain in head was so bad Had RI which showed I had a small stroke in the corpus callosum. Mri also showed 2 pineal gland cyst one was 8mm in size but dr. never told me about pineal gland cyst. went home 2 weeks later and was still having headaches left sided and burning pain on top of head. could not hear good from left ear and vision kept getting worse was always sad and could not sleep well. On 3/22/10 went back to hospital had another MRI done which showed the 8mm pineal gland cyst grew to 9mm with new intracystic fluid fluid level compatible with interval hemorrhage. All these doctors say is that pineal cyst don't cause symtoms which I disagree with and I should not worry. But I am worried sick that this cyst will hemorrhage again and maybe cause me brain damage can someone please give me some in put. Should I go see a neuro surgeon or just let my neurologist follow me.
sincerely
very nervous
sincerely
very nervous
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I am 28 years old I was diagnosed with a2 cm pineal cyst in october,the 2 nuroligist and the nurosurgeon I have seen all say it's most likely been there sence birth and like most of you something else must be causing my symptoms.I have daily headaches major sleep problems Im always exausted I feel like a zombie I can't focus or concentate so Im having problems at work plus I get dizzy spells.I have a strang black spot in my left eye that never goes away.My doctor thinks it's depression she said even if they are syptoms of the cyst depression can make the symptoms worse.I was refered to see a sleep doctor and an opthimologist for my vision.I think I dwell on this and maybe overthink it but how can we not our doctors keep telling it's not the cyst Im not crazy and the symptoms are real.The pineal gland is appox.1 cm if my cyst is 2 cm it has to be engorging the gland and effecting it's functions but that dosent make sence to the doctors I guess.I've looked up alot of info on the pineal gland and from what I found it does have everthing to do with your sleeping patterns & energy even metabolism,although mine is benign and I am not suufering from hydrocypholus I still have symptoms and it's impacting my life,I just wish the doctors knew more about it.
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hi plz explain me about opeartion of penial cyst.my friend is having penial cyst of 2 cm and doctor is continously taking mri's after a period of 3 month but they are unable to make any decisions
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I have suffered with migraines since I was a child. My first headache was when I was 5 , in Kindergarten. I remember it vividly. Throughout my teenage years I suffered from terrible migraines. In my 20s I started to have nausea and vomiting with them. I started to take Imitrex in my late 20s because I was dating a physician who prescribed it for me. Since then, I have tried over a dozen medications. The only things that work for me are imitrex injections and zofran (antiemetic). I am now 42. I have been suffering with fatigue, PVCs, dizziness, and nausea every day for the past 8 months. I finally decided that my headaches are so severe and frequent that I need to do something about them, so I went in and had an MRI last month. It showed a 1.5 cm pineal gland cyst. I went to Barrow Neurological Institute in Phoenix, AZ and was informed by the neurosurgeon that they do not do surgery for pineal gland cysts unless they are causing hydrocephalus, which I think would be an emergency surgery with the patient in an on-conscious state or a semiconscious state. He informed me that the cyst is "not that large" and not considered a significant problem. If he had this thing in his head or his wife's head would his opinion change? This is debilitating to me. I cannot function. I have a 7 year old daughter and a 5 year old son, and I feel like I am slipping away from them with each day. My memory loss is scary, even my husband, who used to depend on me for everything, recognizes that he is loosing me. I feel like an Alzheimer's patient who has periods of alertness and knows that she is drifting further from life and others with the days of the week. Is there anyone out there who knows a neurosurgeon who will perform this surgery before it is life threatening? I feel like it is taking my life away now.
Thanks,
Vicki
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I had my first headache when I was 5, in Kindergarten. I remember it vividly. I suffered from severe headaches throughout my childhood and into my teenage years. In my 20s I began to have nausea and vomiting with my headaches as well as visual disturbances (blurriness and seeing the blind spot). In my late 20s I started to date a physician who prescribed imitrex for my migraines. They have become more severe and more frequent over the years. I am now 42, have been on over a dozen meds for migraines and the only thing that works for me is imitrex injections and zofran (an antiemetic). Over the past 8-9 months I have developed PVCs, dizziness, memory loss, increased intensity of migraines and more severe blurred vision. Since my issues had become so debilitating, I decided to finally do something about it all. So, I had an MRI. It showed a 1.5 cm pineal gland cyst. I went to Barrow Neurological Institute in Phoenix. I was informed by the neurosurgeon that my cyst is "not that big" and that they do not do surgery for pineal gland cysts unless the patient is suffering from hydrocephalus. I believe that would be an emergency surgery with the patient either on-conscious or in a semiconscious state! If this surgeon had a pineal gland cyst or his wife or one of his children did, would he still consider it a non surgical problem that simply needs monitoring? I currently have a 7 year old daughter and a 5 year old son. I feel like I am slipping away from them with each passing day. I am exhausted and my memory loss is disturbing. I feel like an Alzheimer's patient who has periods of alertness, knowing that my ability to function is decreasing every day. Even my husband, who used to depend on me for everything, is very worried about my continued decline. I am suppose to see a neurologist this Tuesday, May 24, 2011, but I don't know what more he can do for me. I cannot take beta blockers because my blood pressure is very low - 80-90s/30-40s. Are there any neurosurgeons who will perform this surgery without hydrocephalus present? Please let me know if someone knows a person out there who can help. I feel like I am slowly dying (mentally and physically), and I am not ready to leave my children. They still need me.
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Wow, I am doing research on pineal glands and am getting blown away. These stories are heartbreaking especially since it appears to be a result of fluoridation. Recent studies show fluoride accumulates in the pineal gland. Is your water fluoridated? The CDC recently recommended making sure that people with fluoridated water DO NOT use fluoride toothpastes, mouthwashes or fluoride product from your dentist.
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Remove fluoride from your life if you have pineal problems or better yet before you have pineal problems.
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