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Pineal Cyst Inquiry

On Health & Drugs & Medications » Neurological Conditions

9,399 words with 8 Comments; publish: Mon, 17 Dec 2007 20:46:00 GMT; (90078.13, « »)

I have recently received the results of a MRI that indicates an "of interest" pineal cyst - almost 2 cm in lenth and almost 1.5 cm diameter. I have been suffering from migraines (ice pick clusers for half of my life which i have learned to manage), but now they have not only been increasing in frequency and pain level, but lately they have been combined with another form of migraine - which is, as best as I can describe, as wearing a helmet many sizes too small. I am also experiencing intermittent sleep disorder and vision issues. That said, I am looking for guidance - where do I go? Who do I see? I understand that this is a rather unique afflication from what I can find (yes, I know pineal cysts are quite common, but most don't grow in general).

If you know of anyone I can talk to about this or consult with, I would be most grateful. I have an appt. with a general neurologist, but would really like to find someone or some institution with expertise in the area of pineal cysts. I live in New Jersey, but would be willing to where I need to in order to obtain the proper diagnosis and treatment plan.

Thank you for your help...

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    • About 11 years ago my sister had a cyst in the pineal gland in her brain with similar symptoms you describe; she had surgery - which was rare - Dr. Fred Epstein performed the surgery. Epstein has passed away since but I believe the surgery was performed at NYU medical center.

      she was told it was inoperable by a number of doctors, but my cousin referrred her to him. internet research shows Epstein worked at the Hyman-Newman Institute for Neurology and Neurosurgery at Beth Israel. You may want to try to go there. Also, might want to check out columbia - they have a whole web page about this.


      today my sister is healthy and happy with a 2 yr old. I will see if she can post to your message and give more detail about her experience. good luck.

      #1; Mon, 17 Dec 2007 23:35:00 GMT
    • Hi,

      I am the sister from the entry below. I did have headaches exactly as you describe. At times it felt like someone was hitting me in the head with a bat too. While Dr. Fred Epstein has passed, Dr. Jeffrey Wisoff was also my surgeon and is an excellent neurosurgeon. I was operated on at NYU Medical and do not know if Dr. Wisoff is still there. There were other surgeons involved and if you need I can find my past medical bills for you.

      The surgery was 8 hours, it does involve opening the skull. The recovery is painful, for up to 2 years you will feel not like yourself and infact the headaches that happen after the surgery are even worse but they only last 2 months. After a full year of recovery I never had a headache like that again. The steriods they gave me after the surgery were difficult, swelling and nausea but again that went away in 3 months.

      Years after the surgery the only headaches I had were tension headaches from stress once in awhile but never the kind I had before I had the cyst removed.

      If I can provide more information, let me know. I would recommend the surgery. Best wishes.

      #2; Mon, 17 Dec 2007 23:36:00 GMT
    • I have had alot of your problems. Head "pressure", fatigue, headaches in general. I have been to 15 doctors. I've tried numerous amounts of medicine. Nothing has seem'd to help. The only thing that i have noticed to help my headaches was massaging my shoulder/neck. That seem'd to ease the pain. I hope you feel better. I know what your going threw. They said i don't have a tumor or cyst...but by golly it feels like i do. It feels like somethings growing up in my head :(. Just stay strong. I'd see and endocronologsit, and neurologist. And take it from there. I hope i helped some.
      #3; Mon, 17 Dec 2007 23:37:00 GMT
    • Two months ago a MRI of the brain showed I have a pineal cyst that is 5 mm. Since then I have seen 2 neurologist and I feel like nobody can really explain the reason I am having these symptoms. I have severe headaches (i feel like I am wearing a too small footaball helmet- good explanation), I also feel like I cannot remember anything and normally I am extremely organized, extremely fatigued, numbness and tingling in my extremeties and I have fallen due to my leg giving out. I just seen the 2nd neurologist and he gave me migraine meds along with topomax to take daily. In 2 weeks I have to do a sleep study because they are trying to rule out sleep deprivation and sleep apnea- can this really be the reason for my symptoms? I understand the cyst is small and they say that they want to watch it but it is not the cause of my symptoms. I feel that they just keep ordering tests in hope to find out why all these symptoms. In the meantime I have a 4 month old who is extremely fussy and I am unable to help my husband take care of him somedays! I need help!

      Does anyone know of a neurosurgeon and neurologist in Houston, Texas that has dealt with the pineal cyst?

      #4; Mon, 17 Dec 2007 23:38:00 GMT
    • Do you feel surgery would be an option with a newborn? I am just concerned about the recovery process. You said its worth it?
      #5; Mon, 17 Dec 2007 23:39:00 GMT
    • I can't thank all of you enough for joining in on this discussion - it does help to know that there are others that have and are in similar situations (and I wish we did not have to have these discussions). I have seen the neurologist (who was so nice and understanding and knowledgeable), but he wanted me to get a second opinion from a neurooncologist. I understand why a neurooncologist as they tend to the be ones that treat these cysts (they treat it as if it was a tumor), but then I hit a medical wall. My neurologist got me an appt. with a renowned doc at the University of Pennsylvania, but two days before the appt. they (renowned doc's office) called & said "oh no, it's on the pineal gland...we don't do that area", cancelled my appointment and referred me to neurosurgeons - but without actually helping me get an appt. I am now stuck leaving messages on answering machines and nobody is calling me back. Is this normal? I thought the medical field operated more professionally, quite frankly. We're talking about a rather large growth in my brain, for heavens sake.

      I finally got through to an actual person at my original neurologist office and she said she would get back to me after she talks to the doctor. We shall see. I guess I am left to hunt down doctors on my own for a second, and at this point, i think a third opinion.

      I thought I was on a path to figure out what I should do. Now I realize that the path is not paved by medical assistance, but by sheer brute force of those of us that want to be well. Simply disheartening and maddening at the same time - something none of us who need medical attention and advice need in such a time of uncertaintly and fear.

      I hope we will all continue to share in our experiences, successes and knowledge.

      #6; Mon, 17 Dec 2007 23:40:00 GMT
    • This is jacklynn back with an update - a good one. My wonderful neurologist was just as concerned about the size of the cyst as he was with my mental concern about the situation and his staff finally garnered me an appoinment with a seriously credentialed naurooncologist (typically the field that treats such cysts). The first referral cancelled my appt two days before the long-awaited time - causing yet more stress and angst, but my neurologist found me another expert (I was persistent, I must add - never stop demanding direction from your doctor). Additionally, I was lucky - I found a MRI from 12 years ago in my basement (the first time my migraines were so horrible) and lo and behold, there was the cyst that nobody spotted before. It was there then, and it is still there.

      Long story short, I have migraines, but can learn to treat them with the help of my neurologist and the latest medication. I have a cyst in my brain which is bigger than most (most of us have them, some are just larger than others), and will keep monitoring it to ensure that it does not grow or become malignant. I feel soooo much more at ease and my life is back. By the way, I now call it "spot" and brag that mine is bigger than others.

      Basically, I don't want you to be scared and mentally paralyzed like I was. In the words of the specialist I saw "Enjoy life."

      #7; Mon, 17 Dec 2007 23:41:00 GMT
    • Hi all, I have just been diagnosed with a pineal cyst that is 2cm. I have been having headaches, dizziness,nausea,problems concentrating,can't remember things,and sometimes blurred vision. I am seeing a nerosurgeon in Denver, Co that is very good and did not just dismiss my problems. I am having to go to an ear, nose and throat spec. to rule out anyother problems. I am not sure if any of you are having the same problems. Sometimes I can't even walk around without feeling like I am going to fall over . I have not been able to work latley for I can't be up for long periods at a time. I have trouble riding in a car without getting very nauseous. I saw one ear,nose and throat doc. and he told me that is was not from my cyst, put that I had positional vertigo. I have read up on this and I don't have those symptoms. Can anyone relate to these problems ? I have to go back and see the neurosurgeon on Nov. 30th to do another MRI and see if there is any growth change and I will see the doc. again too. I will do another post at that time. Thanks for all these posts its' nice to know I'm not alone. :dizzy:
      #8; Mon, 17 Dec 2007 23:43:00 GMT