Pineal Gland Cyst and brain surgery for headaches

I had a pineal cyst measuring 1.0x1.2x1.7. I had it removed October 2010 by Dr 's Bristol and Nakaji of Barrow Neurosurgical Associates at St Josephs Hospital in Phoenix, Az. I have had only one migraine post surgery - no migraines in the past 11 months. No vertigo. No ear pain. I do have some other issues now- possible surgery induced fibromyalgia, but stopping the daily migraines, vertigo, nausea, photophobia, jaw/ear pain was well worth it. Mine was indeed a cyst, not a tumor. Just thought I'd share.

Barb

thank u so much for sharing. You just made my day. You know how it's hard to think and if u try too hard, there is a lot of pressure that went away after your surgery right? They tell me the surgery is not worth it because there is a 15% chance that it makes my symptoms worse and up to now my only solution was to see Dr. Shanahan at the SKull Base Institue which cost like a million dollars. How much was your surgery?

anton

well, I have to say I have excellent health insurance = I work for the state of Arizona so I only paid the copays. My neurosurg visits were $30 each and the surgery itself I can't be really sure but I'm guessing around $15K because I paid $1500. Yes, alot of feeling of pressure that went away after the surgery, my head is more clear. They kept saying it wasn't causing hydrocephalus just 'mild mass effect on the tectum', that it wasn't causing the migraines (tho I'd never had a migraine in my life prior to that year).
Like I said, now I have other body issues, but nothing compared to what I went through with the cyst. I knew the risks, and I knew there was a chance of creating more problems - seizures, paralysis, etc but I also knew I'd gotten to the point where living in my bedroom and not being able to live/work was no way to live.
Good luck to you - I know most doctors do not want to believe there is a correlation but I know that Barrow Neuro has some published studies on the correlation between pineal cyst/tumors and migraines and there are more on pubmed.com medical journals. too
Take care
Barb

My 14 year old has been having headaches for almost a year and has been sent to 4 different drs.  They finally did an MRI and discovered a large Pineal Cyst.  The first 4 drs dont think that this has anything to do with his head aches but yet nothing they have tried is working.  He is finally being refered to a nerosurgeon at Duke.  I'm scared and I do believe that the cyst is causing the problems.  Has anyone had the surgery and how long is recovery?

 

I am 25-years-old and was told they found a pineal cyst around August of 2011. I have been getting migraines since 2007, but never had an MRI done until 2011. My neuro says that the cyst is not the cause of my migraines, but along with the migraines I have memory loss, dizzy spells, trouble sleeping, fatigue, and pressure in my head. If everything else has been ruled out...how could the cyst not be the cause of my migraines and other symptoms? If you have had the surgery before....is it worth it? I am a single mother of a 1-year-old and want to be able to give her my best...not be worthless with migraines.

They are trying to say that my sons 1.5 cm cyst may not be the problem
. They have tried him on 8 different meds that have not worked.

I too have a pineal cyst about an inch and a half. My neurosurgeon says it doesn't cause migraine. I've had debilitating migraine since I was a teenager and am now 45. I also see a neurologist that found it, along with Multiple Sclerosis. A lot of the symptoms of this thing go hand in hand with MS. I've tried topamax, and probably every medication under the sun and the migraines are every day. I've also had my whole cervical spine fused and double disc replacement. I also have vasculaitis of the brain. I want this out. My neurosurgeon says it's too risky. I don't care anymore. I live in pain every day of my life because of my back/neck and MS. I also have uncontrolable high blood pressure and I only weigh 92 lbs. I've had seizures, a stroke, mini strokes. I do find now that the sumavel injection works, but the risks of that medication are highly dangerous and I'm paralyzed for about 15 minutes after the injection. I am on SSD, and have children that are sick of hearing me complain that I have migraine every day and they actually imitate me vomit. I would also love the number of this Dr. Shahanian because I just want it out. I'm at the point where I've been miserable since I've been a teenager, live in pain every day of my life and I don't even care what the risks are. If I was a dog, they would have put me down years ago! Any info would be so appreciated. God Bless all who live with this and screw these docs who say that it doesn't cause migraine. Let them be in our shoes for one day!

no i dont think your crazy, ive been getting head aches for yrs and a month ago i had a really bad siezure and have had a further 4 minor ones,i had an mri it showed a 9mm pineal cyst, since the first seizure i have had worstening symptoms such as numbness and weakness in my right arm, general confusion, memory loss, instability and blurred vision. Drs have just put it down to epilepsy at 29, im looking for a second opinion and am also considering surgery, i hope all goes well for you

Hello,

I have a cyst myself. It was almost 2cm the last time I had a MRI. I have headaches all the time , feel really sick also. I have been to the ER several times with these dibilitating headaches. I kinda get seizures . I am like you, can't take it anymore. My family is the opposite, they think it should be removed because they have seen what I have gone thru. My Neuro Dr. just says to keep an eye o it. I just don't know what to do and if thats the cause of my headaches. I am sick and tired of not feeling good. Take care . Vee from Florida

I also have the same as everybody on here. mine ia 2.9 cm and my surgeon also says do nothing about it and its not causing my headaches. I WANT IT REMOVED!! I live in AZ and if ANYBODY can please give me any info on somebody that will take this out I will love them forever! please help.

google pineal cyst and you will find Dr. Shahininia. I live in Canada and will probably take my daughter to California to be operated on by him.

 

Mine isn't as large, but is causing multiple symptoms that are being written off as other things, the Dr/s won't even LOOK at all the symptoms I have, automatically dismissing the cyst as having anything to do with it.

I, too, live in AZ and would appreciate sharing information if you find anything helpful/useful. I went to Mayo, that was a joke. I had a consult with Shahanian, he wrote it off as labrynthitis after 5 mins on the phone and me only getting out 2 of my symptoms. I'm beginning to become dicouraged, and am seraching for someone to take this seriously instead of just treating the marble in the center of my brain as "nothing to be concerned about"....easy not to be as concerned when it's not in their brains causing these issues. :/

danseuse0923 is where I'm AT the Y...

Theresa wrote:

KieLin wrote:

I also have the same as everybody on here. mine ia 2.9 cm and my surgeon also says do nothing about it and its not causing my headaches. I WANT IT REMOVED!! I live in AZ and if ANYBODY can please give me any info on somebody that will take this out I will love them forever! please help.

Mine isn't as large, but is causing multiple symptoms that are being written off as other things, the Dr/s won't even LOOK at all the symptoms I have, automatically dismissing the cyst as having anything to do with it.
I, too, live in AZ and would appreciate sharing information if you find anything helpful/useful. I went to Mayo, that was a joke. I had a consult with Shahanian, he wrote it off as labrynthitis after 5 mins on the phone and me only getting out 2 of my symptoms. I'm beginning to become dicouraged, and am seraching for someone to take this seriously instead of just treating the marble in the center of my brain as "nothing to be concerned about"....easy not to be as concerned when it's not in their brains causing these issues. :/
danseuse0923 is where I'm AT the Y...

Check out Barrows Neurosurgical - Dr. Nakaji.
Remind him that they have a published medical report on how successful this surgery has been, that the patients who have had it done report complete resolution of symptoms. Its a quality of life issue. I had my cyst removed by him and Dr. Bristol who is no longer with the practice, at St Josephs hospital October 2010. successful surgery, my only issue now is fibromyalgia. Of course that is not caused by the brain surgery (tho studies suggest fibro is triggered by accident or injury, some sort of trauma, usually to the spinal cord or brain if not physical or sexual abuse or mental illness, neither of which I suffer from). anyhooo....doctors pretty much stink at looking at the whole picture and I went in and basically said - I have this thing in my brain that I want out. Its my brain, my health insurance, my quality of life. I have been to specialists, taken these meds (listed out) unsuccessfully, I have these issues, here it is written out by me. I work for Social security disability - I read medical records for a living, have a college degree and am tired of being treated like I dont know what my pain feels like. I know the risks and I want it out. They did it. I'd recommend seeing them. Nothing a neurologist will do but prescribe you meds and tell you the cyst is not causing the issues. Only a neuroSURGEON can take the thing out of your head. My migraines are gone now and topomax, which did nothing for me presurgery, now controls any headaches I might get. I have no more migraines, no vertigo, no daily flu like symptoms. I will tell you that again, I now have fibromyalgia, which I never even believed in before this happened and still fight with the rheumatologist about (the diagnosis), but I have multiple knots/muscle spasms/ropey muscles that will simply not release despite narcotics, opiotes, muscle relaxants, chiro, accupuncture, massage - like charlie horses - in my arms, shoulder, back, hips, knees, legs, feet, ankles- well...everywhere. I again work for social security - we dont' believe in fibro lol, but apparently I have it.

   The pineal gland controls melatonin production - melatonin controls sleep. You don't sleep you get fibro. So either way those of us with pineal cysts, whether removed or not, are likely to end up with fibro. Bet they didn't tell you that either. Because they don't know. yet. In 20 years our stories will help others. Right now we are the guinea pigs.

 

 

I realize you gave a very detailed reply to this, but you did not go into how the surgery was performed, your recovery time, etc. Would you be able to PM me on this? I've been looking for answers for 3 years, and the area in the mid-west where I live does not have an abundance of good neuro-surgery departments. I've been given the "wait and see" approach even though my cyst is growing. Any other information you could provide would be greatly appreciated.

Thank you.

I am heading now to the doctor because I have a 1 cm pineal cyst and another cyst in my brain and am constantly in pain with headaches. Another large cyst in my sinus cavity also. Unless a person feels that "pressure" you are talking about, they would not understand why you would go to such extremes. I do. I know when the barametric pressure is changing because there is no space for the change in pressure in my head. I looked at the MRI and it took up all the space in the center of my brain.