thanks,
abbygirl wrote:
i am a 17 year old female and i've got a long health history. I am wondering if anybody has the same diagnosis as i have. I have a large 2.7cm pineal cyst that is pressing on different parts of my brain and possibly causing a blockage of spinal fluid. I have a long list of heart problems- mitral valve prolaps, heart mumor, SVT, and a right bundle branch blockage. I have high blood pressure, postural orthostatic tackacardia, polycystic ovarian syndrome, diabeties, irritable bowel syndrome, acid reflux, and yesterday my thyroid shut down within a few days of it working normaly. Within the last few months i have had a lot of pain in my head and lower back. I can't walk because of extream weakness in my legs. i can't hold my head up. i now can only use a wheelchair in stores(if i can go out). I have been in the hospital and was treated very poorly, (my doctor was very disgusted with them). I wanted to know how large a pineal cyst has to become in order to have surgery. I think it would be too risky becasue of my heart problems. If any of you have had surgery, do you know who would be the best place to go? Thank you.
Hi I would like to talk to you about your surgery abbygirl, cheers David.
I didn't have this surgery. My 24 yr old son has a 1 cm pineal cyst and suffers with terrible headaches and other problems. But I do believe the best place is at the skull base institute in Los Angelas. Dr. Shahainian is suppose to be one of the best in the world. You mentioned heart problems. My son experienced something a few years ago. (very fast heartrate) They never did find the reason for this. Starting to think it is linked to this cyst/tumor. You sound like your not feeling well at all. Wishing you better days ahead. You should contact the skull base institute. I am going to be contacting them again. Just wish there was more research being done about these cysts. People are suffering and something needs to be done about it
Please everyone that has/had a pineal cyst go to the facebook page i made!! It is so much easier to message/chat back and forth about our symptoms and any luck we're having with out doctors!! Just type "Pineal cyst" in where you search for people on facebook and like the page! the picture is a mostly blue brain. it's a new page and i really want it to be successful!! we all need to help each other since no one else is helping us!! ~Lindsay
So far, the only diagnoses I've gotten are Hashimotos Thyroiditis and the meaningless Fibromyalgia.
They might say these cysts are incidental, but since it's on an important gland that plays a role in Endocrine function, one has to wonder if it really means nothing and has no effect as they're saying.
Some have suggested that Lyme and other tick borne diseases be looked at...as they cause these symptoms as well....AND long term Lyme can cause cysts in the brain. I need Dr. House....we all do.
I have had headaches before and nothing like this at all. It has caused me to have memory loss and blackouts, increase in emotions, extreme fatigue, and speech issues. I went to the emergency room last night and the doctor flipped out on me screaming and yelling and called me a liar. He acted as if I knew about this cyst from September and I didn't.
They refused to treat me because of his actions and they threw me out of the hospital. So I am in constant pain right now. I am getting another MRI done this Weds. to find out how big this pineal cyst has gotten. What is upsetting to me is finding out from a different family doctor that has never seen me before.
***this post is edited by
moderator *** *** private e-mails not allowed **
Please read our Terms of Use
Thanks