bluerose
06-18-2001, 02:10 PM
Hello, I'm new here, wanted to say hello.A recent MRI this month found I have a pineal cyst, also with white matter brain lesions (first they thought it was MS, though!). I have had so many symptoms for some time now, including terrible headaches (every day, constant), loss of balance, blurred vision, memory problems/cognitive problems, fatigue (though I don't know if it's connected),"feeling sick," and other neuro problems.Also seizures.It's been hard to find a good doctor who knows about pineal cysts, though, that's been the frustrating part. I am wondering what causes pineal cysts. Also, does any one know any web sites about it?
Would appreciate knowing where to find information about this.Thanks.
bluerose
Would appreciate knowing where to find information about this.Thanks.
bluerose
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mariananegronvargas
06-19-2001, 09:03 PM
I hope this helps. I'm going to keep it brief because I already told my story in rather extreme detail in response to another related posting. I just want to refer you to Massachusetts General Hospital, in Boston, Mass., where I was treated. First, I saw a neuroradiologist who read my MRI and saw that my pineal cyst was rather large, and the same day I saw a neurosurgeon, Dr. William Butler. The following wk I had surgery. When I was first diagnosed with the cyst, I was told it was not the cause of my symptoms -- blinding headaches and fatigue. Please let me know if this helps, or if you have any questions, I'll be keeping an eye out for you. Good luck!
Dodger8
06-25-2001, 11:44 AM
Hi,
I hope this helps. I looked up info at cpmcnet.columbia.edu. It's the web site for Columbia-Presbyterian Medical Center in New York City. It gives you info you can understand.
Also we are going to see Dr. Peter Black at Brigham Women's Hospital in Boston, MA. I heard he is one of the best brain surgeons in the country. He also specializes in the pineal region. Dr. Black's phone # is 617-732-6810. My daughter's appt. is June 29. I'll let you know how we make out.
My daughter is 11. She has ALL of the same symptoms you have and more. Her heart and blood pressure are irregular, etc. She has been unable to go to school for over 1 1/2 years.
I also found a doctor who is checking my daughter's melatonin level. That way if the pineal gland is not producing melatonin she will be able to take a supplement, which may get rid of some of the symptoms.
I do not know what causes pineal cysts. I never found any info on that. I know a lot of people have them and can not find any help.
Good luck. I hope you find the help you need. Hopefully we can help each other. You are in my prayers. Please let me know how you make out.
Cheryl
[This message has been edited by Dodger8 (edited 06-25-2001).]
I hope this helps. I looked up info at cpmcnet.columbia.edu. It's the web site for Columbia-Presbyterian Medical Center in New York City. It gives you info you can understand.
Also we are going to see Dr. Peter Black at Brigham Women's Hospital in Boston, MA. I heard he is one of the best brain surgeons in the country. He also specializes in the pineal region. Dr. Black's phone # is 617-732-6810. My daughter's appt. is June 29. I'll let you know how we make out.
My daughter is 11. She has ALL of the same symptoms you have and more. Her heart and blood pressure are irregular, etc. She has been unable to go to school for over 1 1/2 years.
I also found a doctor who is checking my daughter's melatonin level. That way if the pineal gland is not producing melatonin she will be able to take a supplement, which may get rid of some of the symptoms.
I do not know what causes pineal cysts. I never found any info on that. I know a lot of people have them and can not find any help.
Good luck. I hope you find the help you need. Hopefully we can help each other. You are in my prayers. Please let me know how you make out.
Cheryl
[This message has been edited by Dodger8 (edited 06-25-2001).]
Dodger8
07-05-2001, 11:25 PM
Hi,
I just wanted to let you know I took my daughter to see Dr. Peter Black for her pineal cyst. We drove 9 1/2 hours to get there and waited 3 1/2 hours in the waiting room. It was a total waist of time. He spent 3 to 5 minutes with us. His exam included shining a light into my daughter's eyes and tapping his finger tip across her forehead. That was it. He walked out of the room. I had questions written down to ask and he never gave me time. I didn't want anyone else to waste their time or money to go to see him. He showed no concern or compassion.
Maybe if we make this public we would get help. We could try to get this on TV or in the newspapers. People should be aware of the kind of care we are receiving. People are suffering and the doctors don't care!! We need help!!! If we stick together we could get help, because if this became public someone would see it that could help! There has to be a doctor out there that is capable of helping. Someone has to have enough knowledge to help!! If doctors know pineal tumors cause these same symptoms why won't they believe pineal cysts cause symptoms too?
My email is KICKSTART74@YAHOO.COM
Cheryl
[This message has been edited by Dodger8 (edited 07-05-2001).]
I just wanted to let you know I took my daughter to see Dr. Peter Black for her pineal cyst. We drove 9 1/2 hours to get there and waited 3 1/2 hours in the waiting room. It was a total waist of time. He spent 3 to 5 minutes with us. His exam included shining a light into my daughter's eyes and tapping his finger tip across her forehead. That was it. He walked out of the room. I had questions written down to ask and he never gave me time. I didn't want anyone else to waste their time or money to go to see him. He showed no concern or compassion.
Maybe if we make this public we would get help. We could try to get this on TV or in the newspapers. People should be aware of the kind of care we are receiving. People are suffering and the doctors don't care!! We need help!!! If we stick together we could get help, because if this became public someone would see it that could help! There has to be a doctor out there that is capable of helping. Someone has to have enough knowledge to help!! If doctors know pineal tumors cause these same symptoms why won't they believe pineal cysts cause symptoms too?
My email is KICKSTART74@YAHOO.COM
Cheryl
[This message has been edited by Dodger8 (edited 07-05-2001).]
Dodger8
08-06-2001, 08:56 AM
I just wanted to thank you for posting info about Dr. William Butler. I have been searching for 3 years to help my daughter. I tried so many doctors and no one seems to have knowledge on the pineal gland. I was already in Boston, MA. to see Dr. Black. I heard he was the best. We received no help. He gave us 3 to 5 minutes of his time.
I now am going to call Dr. Butler. My daughter is continually growing worse. It seems to be causing more problems as time goes on. She is so very sick. I will let you know how I make out with Dr. Butler.
My daughter's MRI films are in New York now with another Dr. When I get the MRI films back I will call him to see if he wants to look at her films.
Thanks again for your help.
Cheryl
I now am going to call Dr. Butler. My daughter is continually growing worse. It seems to be causing more problems as time goes on. She is so very sick. I will let you know how I make out with Dr. Butler.
My daughter's MRI films are in New York now with another Dr. When I get the MRI films back I will call him to see if he wants to look at her films.
Thanks again for your help.
Cheryl