My 11 year old daughter has a 1.9cm pineal cyst. She has been suffering for almost 3 years! No one will help her. All the doctors try to tell us it is not from the cyst. She now has changes to her brain and her heart is enlarged. We are receiving no help. She is having problems with irregular heart rate, blood pressure, breathing, severe headaches, stomach pain, nausea, ear pain, pain in her spine, dizziness, loss of balance, blurred vision, pain throughout her body, etc. Her cyst is growing! Does anyone know of a good doctor? She is now seeing a doctor at Johns Hopkins Hospital. I also am going to try Dr. Peter Black in Boston, MA. If you have any suggestions please let me know. If you have any knowledge about the pineal gland or the name of any good doctors I would appreciate your help! Email me at KICKSTART74@YAHOO.COM. Thanks,
Cheryl

[This message has been edited by Dodger8 (edited 06-10-2001).]

HELLO!!! YOU KNOW WHAT I HAVE BEEN HAVING THE SAME SYMPTOMS WITH MY CYST TOO, IN FACT LAST WEEK I THOUGHT I WAS HAVING A HEART ATTACK, CAUSE OF MY CHEST PAINS, THEY TOLD ME I HAVE AN IRREGULAR HEART BEAT, IT FEELS LIKE MY HEART IS GOING TO JUMP OUT OF MY CHEST! I HAVE NAUSEA, STILL HAVE MIGRAINS, WHICH THEY HAVE ME ON A BETA BLOCKER FOR, THEY ARE HELPING ME AT LEAST! THANK GOODNESS!
I HOPE THESE DOCTORS CAN COME UP WITH SOMETHNG ABOUT THIS CYST,M ITS CAUSING A RIFT IN MY LIFE! I AM GOING TO BETHESDA, MD AND HOPEFULLY THEY WILL GIVE ME SOME ANSWERS, BUT I'M NOT GOING UNTIL THE 13TH OF JULY, THERE REAL WORRIED HUH? I WILL LET YOU KNOW ANYTHING THAT WILL HELP YOU OUT TOO!
GOD BESS YOU!
TRACI
TRACIDEAR@YAHOO.COM

Hi Traci,
My daughter was on beta blockers. Her symptoms got worse on the medicine. She got really weak and couldn't function. Now her heart is enlarged. The cardiologist at Hershey Medical Center never told us. The neurosurgeon she saw told us after reviewing her records. Her appt. at Johns Hopkins Hospital turned out to be no help. Dr. Anthony Avellino, a neurosurgeon seemed so concerned at the first appt. He was going to take her 2 MRIs to a meeting with a lot of other doctors and come up with a plan of what to do next to help her. Dr. Avellino said if it wasn't growing he wouldn't touch it, but he would help us find another doctor. He said he really wanted to help her. He was going to call and let me know the results of the MRI and the meeting. I waited 2 1/2 weeks for his call. Finally a physician's assistant called and said the cyst has not changed. I told her my copy of the MRI said it grew 3 mm. She was quiet. Next she said if Jessica gets any symptoms call and let them know. I told her I already gave Dr. Anthony Avellino 3 pages of symptoms. She didn't say anything at all. Finally I said thanks for calling and I hung up.
I really don't understand this! Where are we to get help? So many people are suffering from this and there seems to be no help out there!
I am taking my daughter to see a doctor who practices in natural medicine this Friday. If she helps her I will let you know. Lord willing she will be able to help.
Good luck at the doctor appt you have in July. Please let me know how you make out. I will be praying for you.
Take care,
Cheryl

Hello,
This is so frustrating! My daughter is continually growing worse and no doctor is concerned. JHH was not concerned even though her pineal cyst is growing. It is now 1.9 cm. I drove 9 1/2 hours to Boston, MA to see Dr. Peter Black because I heard he was so good. He spent 3 to 5 minutes with us! He was not concerned at all. He was very rushed! He did not sit and answer my questions. He shined a light in my daughter's eyes and tapped his finger on her forehead. That was it! He said, you already had 3 opinions. I see you were at JHH. I was hoping he was going to answer our questions! My daughter is probably having seizures. She has to have an EEG. Dr. Black said seizures are not caused by the pineal cyst. I do not understand the way doctors show no compassion or concern.
Does anyone out there know of a good doctor?
Take care and good luck.