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  • Pineal Cyst ???/help Please!!!

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    Old 03-09-2005, 09:50 AM   #16
    lovemyrinny
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    Re: Pineal Cyst ???/help Please!!!

    Quote:
    Originally Posted by akmartin
    I do not know if anyone is still reading this thread, but I have a very similar story of the others, with one exception. The only way I knew I had a pineal cystic lesion was because I asked for a copy of my MRI report. I had only been told by my doctor that I had a sinus infection and nothing else. My MRI report also states, "An area of isointensity of CSF is present in the posterior aspect of the posterior fossa most compatible with a mega cisterna magna. The differential would include a retrocerebellar arachnoid cyst." I have similar symptoms: headaches, vision problems (for a patter lack of works floating dark and white spots of different size), sleep problems, tingling and buzzing in head an body, an attack that I thought might have been a stroke (but could be deemed a seizure), cannot concentrate, and trouble with simple spelling of words. I am at my wits end and would like more information of both the Pineal Cyst and the Mega Cisterna Magna. I want my head back to the way it was.
    I also have a small pineal cyst which was discovered during my MRIs for my pituitary tumor. I also have choroid plexus cysts (bilateral). I also read every radiology report and mine also states bimaxilary mucosal disease (sinus infection). I experience severe headaches, nausea, and pain behind my eyes now. Apparently the nausea is not common with a non-functioning pituitary tumor. I also have polycystic kidney disease. I'm going to Johns Hopkins for a second opinion next week. I am not aware of the definition of mega cisterna magna. It's funny, if the doc does not give you a name for the radiological term, it can be hard to find much info about it. For example, when my first MRI was taken in 11/04, it showed a "sellar vs. suprasellar mass", which they told me they thought was a brain aneurysm. It turned out to be the pituitary tumor. Did you converse with your doctor and ask specific questions about your radiological report?

    Hope to hear from you soon!

     
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    Old 03-12-2005, 08:39 AM   #17
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    Re: Pineal Cyst ???/help Please!!!

    My story is actually one of deceit. I only know about my cysts because something told me there was something other than migraines and a sinus infection that was wrong with me. You see this is only what my family doctor told me was wrong and not until 2/25/05, when I received a copy of my MRI report my world was turned upside down. I gave my doctor another chance to come clean when I called again with the non-stop headaches and the other symptoms associated with the two cysts. No, she just said to take the Imatrex for migraines and prescribe an anti-depressant.

    I did go to the new doctor and he is setting me up to see a neurologist/ neurosurgeon about my condition. This specialist was not even in the practice’s computer system. My new doctor (referred as Dr. New from here on) said if he needed to recommend a family member, this is the person. This does give me a certain amount of comfort.

    Dr. New seems is taking my MRI report more seriously as I have so many other symptoms that are a result of these conditions. He would not say anything bad about Dr. Old’s lack of interest, but I do believe had he been my original doctor, I would have already seen a specialist.

    It may be up to a month until I can get into see the specialist. In the mean time, Dr. New has given me a prescription call Topomax, which is supposed to get rid of some of the headache pain. I will be off work for some time until they can resolve these issues. I have another appointment with Dr. New in two weeks to determine if the medicine is helping my pain. I hope it does, and Dr. New knows and agrees that we are not just going to through medicine at the problem, but will try to reduce the symptoms until a more final approach is identified.

    Therefore, to answer your question, I have not been able to set down with anyone who can intelligently go over my MRI. I will update with any new information. I hope that you get the answers you are looking for.

     
    Old 03-14-2005, 11:06 AM   #18
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    Re: Pineal Cyst ???/help Please!!!

    So, did they ever do another MRI to determine the size of the cyst? Do you know how large it is? I read that the pineal gland produces melatonin, if I remember correctly. I have to do some more reading about the concerns with how a cyst can affect the melatonin. Have you heard anything about that?

     
    Old 03-22-2005, 11:08 AM   #19
    topi
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    Mega Cisterna Magna

    Hi Martin I read your message and I experienced some of your reactions from doctors. I am begining to understand that the neurology field is still divided on the issue of the cerebellum (the area affected by the mega cisterna magna) and the traditional believe is that that area is ONLY associated with balance and coordination. I have searched Dr. Schmahmann at Mass General in Boston which seems a pioneer in the field of the cerebellum and its true functions. I will see him in April and am so curious to see what he thinks of my MRI.

     
    Old 03-22-2005, 02:36 PM   #20
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    Re: Pineal Cyst ???/help Please!!!

    Hi Topi, I have two upcoming appointments, which will be my first with someone other than a PCP. On 4/15, I have an appointment with a Neurologist / Neurosurgeon in Columbus, OH and on 4/27 with a different Neurosurgeon at Henry Ford Hospital in Michigan (for a second opinion). I hope between the two, I will find the answer that I am looking for. I want the problem resolved and from all my research, that means surgery and not throwing pills at the issue.

    I am fine with the fact I will/ may require surgery (see information on http://www.nyp.org/masc/arachnoid.htm about Endoscopic Neurological Surgery. I will do whatever it takes to find a doctor to treat my symptoms for the condition they are a result of, not what the doctor wants to relate the symptoms to because they do not know enough about our condition.

    Remember, doctors work for you not the other way around. You pay them for a service and if you do not receive adequate service, then you must find somewhere else to receive care. I am determined to find the right care to get my life back. I refuse to continue to live with these symptoms when just today I turned 40 and feel as though I am 90 some days.

    Do not ever give up hope!

    God Bless!

     
    Old 03-22-2005, 06:08 PM   #21
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    Hi Martin I hear the argument of the 'doctors working for you'..... I do not know enough about your circumstances but I read a bit about this type of surgery and its post-surgery results and that makes me not want to have any surgery at all. I was told by a neurosurgeon in europe that my (congenital) arachnoid cyst is potentially as a result of the space that the undeveloped cerebellum has left which was then filled with CSF. In my case (and I hope to find out more) I am not sure that draining a fluid that is actually filling a 'void' will solve the case as a void cannot exist in your brain. I hope you are doing ok yourself. I mentioned that neurology has opened a new chapter with the new PET Scan in finding more about the brain functions that were unknown but it is all still being debated between schools of thoughts and I would hate to be someone's experiment unless I was really totally disabled. I am not sure if you feel you are incapacitated to the most without medications. Are your primary complaints in the vison field and headaches? Thanks for your reply.

    Last edited by topi; 03-22-2005 at 06:11 PM.

     
    Old 04-02-2005, 10:16 AM   #22
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    Re: Pineal Cyst ???/help Please!!!

    In the past 9 mo or so, I have had really bad migraines and headaches, as well as temp lobe seizures and have gained a lot of weight. On an MRI, they found an "incidental" 9mm pineal cyst. Like so many of you, I have serious concern that the headaches/migraines and seizures are more than coincidental with the cyst. (I wonder about the weight, but can't really point to much evidence that might link it with a pineal cyst.)

    I would like to find a neurologist/neurosurgeon or two who might at least be open to the possibility that the cyst is not just incidental to do an evaluation. If nothing else, it seems logical that the cyst would press on adjacent structures and/or fill up part of the venticle, squeezing the CSF and putting increased pressure on surrounding tissue.

    I would also like to know what options there may be for treatment. I know about the surgery and drainage possibilities if there is a blocking of the CSF and consequent hyrocephalus, but I wonder if people are aware of other options.

    From the research I have done, I wonder if part of why the docs so often consider the cysts incidental to these sx (as well as visual changes and nausea) is that the pineal gland is pretty deeply imbedded in the brain and is adjacent to structures critical to sight, movement, etc. If it is difficult to access the cysts without significant danger of permanent damage to these functions or death from the surgery to drain the cyst, there might be little opportunity to do the surgery and see if it relieves some of the sx.

    Many thanks for any thoughts folks may have and good wishes to the rest of you struggling with this!

     
    Old 04-07-2005, 09:25 AM   #23
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    Re: Pineal Cyst ???/help Please!!!

    Recently I have been diagnosed with a pineal cyst. The doctor wanted to put me on medication everyday, then do a follow up MRI in 6 months. If the cyst grows, they will remove it. Like some others, I have numbness on the left side of my face; a pain in my left temple area and headaches. The Nuro thinks part of the problem is Migraines, but he says the symptoms above do not reflect the cyst. I'm not one to take a pill everyday so I checked with my herbalist. I advised her of the MRI results and she put me on four herbs to shrink the cyst. I have felt an improvement with the headaches and the numbness in my face. A lot of doctors don't agree with the herbs, but I'm not sure if they realize that medications are usually made from herbs. I suggest that any of you that are tired of the same thing and don't mind trying something different to try the herbs. What can it hurt? In five months I'll let you all know what the status is of my pineal cyst. Good luck and I really do feel for all of you. I've been struggling with my symptoms for over a year now. Fate directed me to the herbalist and I'm thankful for that. Take Care!

     
    Old 05-03-2005, 06:58 AM   #24
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    Re: Pineal Cyst ???/help Please!!!

    Hi' I was wondering if you had learned anymore about pineal cyst or where you are from? I'm from south carolina and i can't find a doctor that will take me seriously. Please email me at [ please carefully review the posting rules - no emails ]

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    Old 05-03-2005, 07:10 AM   #25
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    Re: Pineal Cyst ???/help Please!!!

    Quote:
    Originally Posted by ~Pixiedust~
    Hi everyone,

    I just found this forum today and was so pleased to find it. I thought I'd introduce myself. I was diagnosed with having a pineal cyst in October '03 after having a 3 year battle with blinding headaches, facial pain and jaw pain. The neurologists weren't looking for tumors/cysts, they were trying to confirm their diagnosis of Trigeminal Neuralgia, when they saw the cyst. Needless to say, hearing them tell me that I had the cyst in my pineal gland was the scariest thing anyone had ever told me before. I thought it was my death sentence. I basically came home and just sat in shock for a couple days then decided to get on the net to find any information that I could locate, since I felt like the neurologists weren't very informing. They told me that I'd need a follow up MRI every 6 months to make sure it wasn't growing, and in the event of it increasing in size we'd have to consider other things to do.
    I was left confused and frankly, I still am confused today.
    I have all these things going on with my head and body, such as my hearing and my eyesight, loss of coordination, brain fog, fatigue and the list goes on...
    I've always been quite active but as of late, I'm just a totally different person that I used to be.
    This entire year, I've been trying to push the thoughts of this pineal cyst out of my head...I kind of thought, "Ok...if I don't talk about it or think about it, maybe it really doesn't exist" Lately, I can't help thinking of it because of all the changes I am seeing.
    Hi, Iknow it's been a while since you wrote this but I was wondering if you had any luck with treatment or finding a doctor that does'nt just brush this off like it's nothing? I can't find anyone to help me and it's a struggle now just to get through an average day. My doctor apparently thinks its just stress causing my almost daily headaches, memory loss, loss of concentration, dizziness, tingling/burning in my face, ect... But I don't see how. I was first diagnosed with an anerysm but now they say they were wrong about that?? Now they say I have this cyst thats not causing any of my problems. Do you have any advise? Please email me [ please carefully review the posting rules - no emails ]

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    Old 05-03-2005, 07:17 AM   #26
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    Re: Pineal Cyst ???/help Please!!!

    Quote:
    Originally Posted by akmartin
    I do not know if anyone is still reading this thread, but I have a very similar story of the others, with one exception. The only way I knew I had a pineal cystic lesion was because I asked for a copy of my MRI report. I had only been told by my doctor that I had a sinus infection and nothing else. My MRI report also states, "An area of isointensity of CSF is present in the posterior aspect of the posterior fossa most compatible with a mega cisterna magna. The differential would include a retrocerebellar arachnoid cyst." I have similar symptoms: headaches, vision problems (for a patter lack of works floating dark and white spots of different size), sleep problems, tingling and buzzing in head an body, an attack that I thought might have been a stroke (but could be deemed a seizure), cannot concentrate, and trouble with simple spelling of words. I am at my wits end and would like more information of both the Pineal Cyst and the Mega Cisterna Magna. I want my head back to the way it was.
    I know how you feel! I want my head back the way it was too! Just curious but what made you ask for a copy of the mri? I don't see how these so called doctors can get away with brushing this offf like it's nothing. Almost everyone that has a cyst has the same symptoms. I wish I knew more about it to tell you but unfortunately i think thats the whole problem, no one knows enough about it. If you learn something interesting or just wanna talk email me [ please carefully review the posting rules - no emails ]

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    Old 05-03-2005, 07:40 AM   #27
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    Question Re: Pineal Cyst ???/help Please!!!

    Hi, everyone! I am new on here so i'll introduce myself. I'm 26 from South Carolina, like everyone else i've been diagnosed with a pineal cyst "you know that's nothing to worry about!" I have pretty much the same symptoms daily headaches, dizziness, loss of concentration, memory loss (short term) tingling/burning in my face, hands and feet,ect... I can not seem to find a doctor that will listen to me. They blame it on stress. I don't feel like i'm anymore stressed than before or than anyone else. I don't know what to do or where to turn. It's a struggle for me to get through an average day now. I used to love life, being with my friends and family, and ofcourse I still enjoy being with them but it's hard to fully enjoy anything when you have a terrible headache or feel like an idiot b/c you can't remember things. I am currently attending college and sometimes I sit down to take a test that i'm sure i'll pass and it looks like it's the first time i've ever seen that info. I don't understand why these Doctors won't just tell us the truth. Even if it's b/c surgery is too dangerous. It would be better to hear that than for them to act like it's nothing. If any of you have any info that may be interesting or useful please [ please carefully review the posting rules - no emails ]. Apparently we're gonna have to do our own research. I need all the help and support I can get. I try not to talk to my family about how bad i really feel b/c it makes them worry. Good luck to everyone!




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    Old 05-07-2005, 10:20 AM   #28
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    Re: Mega Cisterna Magna

    Quote:
    Originally Posted by topi
    Hi Martin I read your message and I experienced some of your reactions from doctors. I am begining to understand that the neurology field is still divided on the issue of the cerebellum (the area affected by the mega cisterna magna) and the traditional believe is that that area is ONLY associated with balance and coordination. I have searched Dr. Schmahmann at Mass General in Boston which seems a pioneer in the field of the cerebellum and its true functions. I will see him in April and am so curious to see what he thinks of my MRI.
    So, what did he say? I have a Pineal Cyst I can't get anyone to treat and am looking for a professional with some real knowledge. Thanks in advance!

     
    Old 06-03-2005, 04:19 AM   #29
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    Unhappy Re: Pineal Cyst ???/help Please!!!

    I hope someone can give some guidance. My 26 year old daughter has had migrines and seizures since age of 15. Over the years the seizures have gotten worse. Now up to 40 per month. The doctors found a pineal cyst about 3 years ago and said it was nothing. yada, yada, yada. Last year they did another MRI and it has grown to 1.8 cm. She has nausea, headaches, insomnia( which is a problem with her seizures also.)She is having no luck with doctors (so far). One neurologists even told her that she was IMAGINING her gran mal seizures because he did not capture them on EEG while in the hospital on all her meds under monitoring. Her current doctor finally did capture 7 seizures in 2 hours on a home monitoring devise. She is running out of hope. She cannot sleep, misses work every week from the seizures. Went to the hospital every week in an ambulance, where they did nothing but watch her have seizures. They even refused to give adavan to try to stop them. Her neurologist is now worried about brain damage happening because she is having so many seizures and they are getting harder to come out of. Has anyone else had this kind of seizure because of a pineal cyst? Does any one know a neuro-surgeon in the Dallas-Ft Worth Texas area who has a knowlege of pineal cyst and will help her?

     
    Old 01-01-2006, 09:26 AM   #30
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    Re: Pineal Cyst ???/help Please!!!

    can you diagnose it with a cat-scan with contrast??
    thank you! brid

     
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