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I can't believe I am actually thinking about having brain surgery for my headaches. I have a 2cm in diameter pineal gland cyst and I went to the neurosurgeon yesterday for a check up. Although my cyst hasn't grown in the last 3 months since my last check up, my neurosurgeon said that surgery could help me. He said that there is a chance my headaches are from a higher than normal intercranial pressure. My head hurts all the time, but sometimes worse than others. I also have dizziness, nausea and vomiting. I am losing some vision in my right eye. Also it hurts more when I cough, sneeze or go to the bathroom. The first time I saw the surgeon, he suggested that the cyst be removed, but I got 2 other opinions and neither of those doctors seemed to think that I should have surgery. I went back to the one who did suggest it because he spent the most amount of time with me, and actually was the only one who put my MRI's up next to eachother. So I am wondering if anyone else has had experience with this kind of surgery. My parents think I am crazy to have "elective" brain surgery and aren't very supportive. Does anyone else think I am crazy for considering this? What is the recovery like? Can I do it without the support of my family? I just don't think I can live with this pain for the rest of my life.

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I wouldn't call a surgery elective if it will solve the issues you are experiencing. After all, you are the one who is hurting and you are the one who ultimately will make the decision.

Because most cysts are benign and asymptomatic, most patients with an MRI which is completely consistent with a benign cyst will be recommended to do nothing at first. The cyst may be followed with occasional MRI scans to determine if it is enlarging. In cases where there is any doubt as to the actual diagnosis and in patients who are symptomatic a surgical procedure may be recommended. A biopsy to obtain a small piece of tumor for pathology or a full surgical resection to remove as much of the mass as possible are options. In patients who a pineal cyst is confirmed, often no further treatment is necessary since these lesions do not tend to recur or grow significantly.

However, every patient is different and cysts can be confused with other masses that can occur in the pineal region. Therefore, each case should be discussed with the patient's own personal treating physician.
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Have you had the surgery already?
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I too have a pineal cyst measuring 2.5 cm x 2.1 cm x 1.7 cm,, so it is the largest that I have come across by those still living. I too have migraines, they are not headaches. It seems the medical community has some catching up and reasearch to do in this field. I would not recommend surgery, I think it is way to drastic and the risk is too high.
I hear about people sleeping and I have times where that is all I want to do, I can't seem to get enough of it day after day, usually however I have the opposite problem.
I can not sleep, I stay up till I am so tired I feel like crying. when I do manage to fall asleep it only last about an hour- 1.5 hours. My migraines will stay with me for days. If not treated I will have a migraine 20 out of 30 days in a month. This is unbearable to me, and as a single mom I am worthless to my daughter. There is hope though!
I currently take Topomax every day, they have now increased it to 200 mg a day. In addition to this I take Lunesta for sleeping. I have tried many of the other sleeping/relax pills, but I have found Lunesta to work the best for me. I just wish they had a generic form because I can not afford my medication every month which is why I am writing on here at 3:30 am and have to be up at 7:00 for work.
So, to sum it up: don't go straight to surgery. Try to control your symptoms, the chances of it turning benign are very slim. It may take you and your neurologist a while to find the best solution for you. You may have to avoid things like peanut butter that can trigger the headaches. I am confident though that you can increase your quality of life without surgery. ;-)
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This would be for Lindseyj - I know that your orinigal post was almost a year ago. I would be curious if you decided to have the surgery or not and if how did it work for you. Or if you decided not too, have you started any new medications that have seemed to help? My husband has been dealing with a pineal cyst now for years. He's had surgery on it once, but it's come back and his headaches are getting more advanced. Any information you could provide would be greatly appreciated.
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Dear Guest - I am 32 and I too have a pineal cyst at 1.76cm. I have been living with this for almost 5 years now and have been on every medication you could think of some ( topamax, lyric, endep, morphine, epilim and lots more) the morphine worked well until it shut my stomache down and now I cant take it, I too have pain and pressure in my head every day, am exhausted all the time could sleep for up to 15 hours a day. I have been to sydney to see Charles Teo the neurosurgeon and he said that surgery was very dangerous but if I wanted it he would consider it. I have also been to neurosurgeons in Brisbane and they give me the run around and say they are not sure if the pain is coming from the cyst. I have had enough Iam a single mother and have two young children to look after. My pain specialist is not sure what to do next, although he has sugested botox in the head but my research on botox makes me worry about the stuff so im hesitant to do that. Im seeing another neurosurgeon on the 8/6/10. I was just wondering how the surgery for you went, what side affects you may have had from surgery and if you have had any other help or could suggest anything to me that may help that you have experienced. Thanking you :!:
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new2010 wrote:

Anonymous wrote:

This would be for Lindseyj - I know that your orinigal post was almost a year ago. I would be curious if you decided to have the surgery or not and if how did it work for you. Or if you decided not too, have you started any new medications that have seemed to help? My husband has been dealing with a pineal cyst now for years. He's had surgery on it once, but it's come back and his headaches are getting more advanced. Any information you could provide would be greatly appreciated.



Dear Guest - I am 32 and I too have a pineal cyst at 1.76cm. I have been living with this for almost 5 years now and have been on every medication you could think of some ( topamax, lyric, endep, morphine, epilim and lots more) the morphine worked well until it shut my stomache down and now I cant take it, I too have pain and pressure in my head every day, am exhausted all the time could sleep for up to 15 hours a day. I have been to sydney to see Charles Teo the neurosurgeon and he said that surgery was very dangerous but if I wanted it he would consider it. I have also been to neurosurgeons in Brisbane and they give me the run around and say they are not sure if the pain is coming from the cyst. I have had enough Iam a single mother and have two young children to look after. My pain specialist is not sure what to do next, although he has sugested botox in the head but my research on botox makes me worry about the stuff so im hesitant to do that. Im seeing another neurosurgeon on the 8/6/10. I was just wondering how the surgery for you went, what side affects you may have had from surgery and if you have had any other help or could suggest anything to me that may help that you have experienced. Thanking you :!:




Dear Guests, I am 44 yrs old now and had a pineal cyst diagnosed when I was 30 yrs old. For 6 months I had been getting Headaches, the feeling of blocked ears like they were full of water, Dizzy spells as if I was going to faint, and generally feeling unwell. I went to my GP who did a cat scan which showed a pineal cyst causing severe hydrocephalus. Off to the neurosurgeon I went and he advised me to have surgery to get it removed otherwise I would have a shunt in for the rest of my life. I was given high doses of Dextamethasone and then had the brain surgery to remove the cyst. They said they got most of it apart from a bit stuck on the vein of Galen. I did have a couple of months of work but here I am with no cyst and working back as a dentist.
I do get migraines now, one a month, but otherwise 14 years on and I can do most things but because there is a piece of bone missing from the back of my skull it is not very pleasant when a wave breaks on the back of my head in the sea!!! I didn't have any major complications from the surgery. Hope this is helpful. I would be happy to answer any questions.
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Has anyone had aspiration of their cyst or gamma/cyber knife radiation surgery?
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I had my first surgery for my pineal gland cyst just over a year ago. I am headed in for my annual MRI tomorrow. I say first because the only other person I have met with this had 7 surgeries over a 12 year period. My head pain has gotten worse over the past few months, not quite what it was at the time of my surgery. I have been able to work, care for my son, and maintain honors status at my college. Even if I do have to have more surgery I don't regret having done it. I also take Topamax twice daily, and meds to get me up in the morning and meds to help me sleep at night- all of which I hate! I hate the pharmaceutical companies, but they keep me going day to day. Just as surgeries will keep me going relatively pain free for however long each lasts. My neurosurgeon was very forward about the fact that if I had one I would probably need another, it was just a matter of time. They also were unable to remove my cyst, so that makes things a little more complicated I suppose. It just stays there, I call it 'My Pet Ed'.
As for recovery time, I was up and moving about 2 weeks after my surgery. About a week or so inpatient, and a week or so trying to lay low at home. It took longer to get back into my classes, about a month-6weeks before I felt I could test and retain information again. I definitely don't think you're crazy LindseyJ, I know it's been a year and you've surely made a decision by now, but I couldn't have lived with my pain. Of course I had complications that probably would have caused me to have a seizure or drive off the side of the road, so I guess I wouldn't have had a choice anyway. (I hope no one takes offense I make light of my situation quite often).
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Hi, I came across this posting and was hoping someone can help me....

I started having headaches about 4 months ago...Along with confusion and see spots out of my left eye. I have seen a neurologist and have had an MRI & CT scan. They show that I have a 12MM cyst on my Pineal Gland, it also says...Intracystic acute hemorrahagic product versus mineralization. Not sure exactly what that means, but the Neuro mentioned that I had some bleeding around the cyst.

My next DR appt isnt for another week...I called over a week ago to try and get some explanation for what these results mean, but nobody has called me back.

I am getting very frustrated and depressed about this....

Any input would be appreciated!
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My sister was diagnosed with a pineal tumor in Feb 2007 and had surgery to remove it in October 2010. She had seen over 25 different doctors in over 12 different hospitals (including places like Cleveland Clinic, Johns Hopkins and National Institute of Health). All of the doctors told her surgery wasn't going to help-- until she found Dr. Shahinian at the Skull Base Institute. He performed minimally invasive surgery- she was hope 5 days after surgery (amazingly) and is recovering. She is not 100% yet, but is sooo much better than she was pre-surgery. Please check out for info on Dr. Shahinian. We never met anyone like him and would fly to the end of the earth for him again.

Best of luck!!

***edited by moderator*** web addresses not allowed
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I to seen Dr.Shahanian for surgery. My surgery was in November of 2010 to remove a cystic tumor from my pineal gland. He is the best doctor ever and also a very nice person. Iam gald I found him he saved my life. Now iam able to watch my 8 month old son grow up. I tryed the Cleveland clinic also but could get no help.
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COULD YOU PLS GIVE ME THE ADDRESS OF DR SHAHANIAN







THANK YOU

Edna Gomes
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i have a pineal tumor as well. I have a few questions: I was wondering what surgical procedure was used? and how much did it cost?
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I too have a pineal tumor and am looking for a surgeon willing to operate. Can you please tell the name of the surgeon willing to operate and the name of the hospital where s/he works? Thanks.
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