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Old 10-31-2007, 08:41 PM   #1
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what is your prognosis and treatment for pineal cyst

Like i said in my earlier post, they found 4 cm x3cm and so forth right on my pineal gland. The dr told me that they cannot remove it nor put a shunt in. He said it is in such a dangerous spot that surgery is definitely not a option.
and It is also growing larger. I am going in for mris every 6 weeks to check on the growth.
Basically he told me since Mine is so large that the outcome is pretty slim of being able to do anything,.
He does want me to see a neurologist to have a work up done regarding the black outs I have had, and headaches and dizziness.
But now what if they cant do anything I just sit and wait for that thing to burst open.
has any of you had any treatments or anything that you could recommend you have tried.
I just had my whole life taken away from me. I already had problems with pain cause of my back and i have had to do alot of life changes but now he tells me I cant drive. I am stuck in my home depending on others around me.
I am just 34 years old
thanks for listening
Julaine

 
Old 11-01-2007, 05:24 PM   #2
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Re: what is your prognosis and treatment for pineal cyst

See what a neurologist around you says, but...

most pineal cysts are benign, incidental findings. They do not usually cause the symptoms that you are describing. Often times someone will have something such as migraines, and then when a scan is done and a pineal cyst is found, it is erroneously blamed as the cause of the head pain.

Pineal cysts can sometimes look quite large, but again, they are usually benign.

Having said that, if it really is something that needs to be removed, there are ways of doing this. Conventional surgery is not easy, but it can be done. Also, there is "radiosurgery" such as gamma knife where radiation essentially "cuts out" the tumor.

 
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Old 11-08-2007, 10:24 PM   #3
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Re: what is your prognosis and treatment for pineal cyst

so blackouts and seizures I have been having doesnt sound like anything that anyone can relate to?

 
Old 11-28-2007, 05:23 PM   #4
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Re: what is your prognosis and treatment for pineal cyst

I have had this surgery and my cyst was the same size as your's. Let me know if you have any questions about it.
Brittany

 
Old 11-29-2007, 07:33 AM   #5
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Re: what is your prognosis and treatment for pineal cyst

Yes I would like any infor you have regarding this. My dr and a second opinion as well have both said there is no way they would operate on me.

Last edited by moderator2; 11-29-2007 at 01:16 PM.

 
Old 11-29-2007, 08:02 AM   #6
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Re: what is your prognosis and treatment for pineal cyst

I also had both blackout's & seizures along with other symptoms. I had a few doctors tell me that the cyst was not doing any harm & that the surgery was too dangerious. By the time my surgery was done the cyst had destroyed my pineal gland, attached to other parts of my brain, blocked spinal fluid & had done damage to my brain stem. The for me the risks of surgery paid off!!

 
Old 11-29-2007, 08:44 AM   #7
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Re: what is your prognosis and treatment for pineal cyst

see I have read on the net that many people have had the surgery. The drs tell me with my symtoms being as severe as they are that if it was not so large and on the pineal gland surgery would be an option. But they both have told me it is in such a dangerous spot that there is a very high risk of coma or death. So that left me there thinking well obviously no surgery. So I am at a loss at this point.

 
Old 11-29-2007, 10:21 AM   #8
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Re: what is your prognosis and treatment for pineal cyst

I understand being confused, there are so many different opinons out there on these cysts. But bottom line is that is can and should be removed , mine was the size of your's when it was found and I was told that the size WAS the reason it needed to come out.
Best advice....get as many different opinions as you can! The surgery is risky ( mine was traditional open brain surgery) and it has a long recovery time, but endoscopic surgery is also an option. A lady I know had her cyst removed by endoscopic surgery and the risks and recovery time were reduced and she is doing great.

 
Old 01-17-2008, 10:02 PM   #9
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Re: what is your prognosis and treatment for pineal cyst

hi!
i was just diagnosed with a pineal cyst after an mri. i have been having fainting spells, dizziness, fatigue and two weeks ago suffered scary visual disturbances which left me with a headache that has still not gone away. i feel like my head is exploding from the pressure sometimes. my general practitioner said there is no cause for concern. i am concerned, especially due to my symptoms. i feel horrible all the time and wonder if there is anything that can be done. i feel like my dr is not listening to me so i have decided to see a neurologist but i don't want to hear the very common answer of your fine eventhough u feel like crap. i live in ny, so if anyone knows any good neurologists that take these cysts seriously, please let me know! good luck to everybody!!!

 
Old 01-24-2008, 05:21 PM   #10
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Re: what is your prognosis and treatment for pineal cyst

Dr. Patrick Kelly is a neurosurgeon @ NYU in New York, New York. He would be a good person to contact for an opinion, he did my surgery last year to remove a pineal gland cyst.

 
Old 02-15-2008, 09:05 AM   #11
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Re: what is your prognosis and treatment for pineal cyst

Hi bahamalady,
I met with the neuro surgeon yesterday and I was hoping you are still checking this thread.
he talked with me about putting a shunt in, and said it is up to me but before the symptoms got worse I should really consider doing this. I wanted to know your experience.
thanks
J

 
Old 02-17-2008, 05:33 PM   #12
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Re: what is your prognosis and treatment for pineal cyst

julainem,
I'm glad to hear that you found a doctor that is wanting to do something about it, that's always a good start!
When my cyst was found a shunt was not an option for me because of the size and the damage it was doing. So I had traditional open brain surgery to remove the cyst & my pineal gland which had been destroyed by the cyst. It was a very risky surgery with a long recovery time, but it has alomst been a year since surgery and I have not had any of the symptoms that I had prior to surgery. Let me know if you have any other questions.

 
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