Couldn't find what you looking for?

TRY OUR SEARCH!

nessa*15 wrote:

HI MY NAME IS VANESSA AND IM 15 AND IVE JUST BEEN DIAGNOSED THAT I HAVE A PINEAL GLAND CYST AND IVE BEEN EXPERIENCING SYMPTOMS LIKE(DIZZINESS,SEVERE THROBBING HEADACHE,SHARP STOMACHE PAIN,NAUSEA,BLURRY AQND DOUBLE VISION,SWEATS,AND CHILLS,MUSCLE AND JPOINT PAIN,AND MY KNEES GIVE OUT ON ME IN JUST A LITTLE TIME AND I CANNOT SLEEP AT ALL AND IVE BEEN OUT OF SCHOOL FOR 5 MONTHS AND I HAVE HAIRLOSS AND IM WONDERING IF ANY1 HAS THE SAME PROBLEMS? PLZ HELP? :-(


Hello, my son is 24 and has a 1 cm pineal cyst/Tumor. He suffers daily with headaches, nausea, some vomiting, sleep problems. Neck Jaw and ear pain. When he first wakes up he is very stiff, moves like someone quite elderly. And yes. Hairloss which started when he first starting get sick which is about 3 1/2 years ago. I to have wondered if the hair loss could be related to this. We live in Canada and there have been some Canadians going to the skull base institute to have these removed. Would be interested in speaking with you. You can email me. Very curious about the hair loss
Reply

Loading...

Hi - where abouts in Canada do you live? Were is this skull base institute? I'm in Calgary and desperately seeking more information/help.
thanks,
Reply

Loading...

pinealcystinCanada wrote:

Hi - where abouts in Canada do you live? Were is this skull base institute? I'm in Calgary and desperately seeking more information/help.
thanks,


We live in Thunder Bay, ON. Canada. The Skull Base Institute is in Los Angeles Califorina. Do you have a pineal cyst. Would be interested in talking to you. There have been some Canadians going to the skull Base Institute. I spoke with a Mom who's son had the surgery done there, just last year. My son suffers terribly from this. What symptoms do you have. Can you get back to me
Reply

Loading...

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.
Reply

Loading...

davidzumba wrote:

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
Reply

Loading...

fys wrote:

Hi,
I've been following the posts for a couple of months now. I have a pineal cyst like most of you, with a lot of the same symptoms (fatigue, vision problems, trouble sleeping, pressure headaches, problems with my short term memory, irritability).
I first went to my GP about a year ago, complaining of extreme fatigue and double vision. She ordered a lot of blood work and an X-ray of my chest. Not surprisingly it all came back clear. I also went to have my eyes checked...a normal eye exam according to the doctor (apart from double vision, no depth perception, problems with my visual field and paretic eye muscles!!) I guess I wont be seeing that doctor again...

In June this year I finally convinced my GP to refer me to a neurologist, she ordered an MRI...and there was the pineal cyst. I was then referred to a neurosurgeon. He told me that he didnt believe the cyst was the cause of my symptoms...but the only way to find out was to surgically remove it. Which he won't do, because there are too many complications involved with the surgery. Im going to have an MRI follow-up in a year, and was told to look for signs of increased pressure in the brain... Thanks doc!!

Im only working part time now, because I dont have the energy to work a full day.
One of the worst things for me is that I feel like a hypochondriac. The people around me cant physically see my symptoms...and they dont understand the fatigue, its overpowering sometimes.

The only treatment I've had so far is with a specialised optician.
I've been training for about 8 months now. The motility of my eyes have improved and I can control my double vision better...but there is still a long way to go, and there is no guarantee that it can cure my vision problems. But it's a start...


Hey I dont know if you were able to get it removed? I had mne removed 15 months ago.....still have all the problems and worse the hole that he put removing it is stll yet to heal....it has been the worse 15 months of my life....and has left me disable....do to the the lack of being able to excerise and move ...I have put on alot of weight....have more nerve damage and well lets just say..DO NOT HAVE IT REMOVED.....it will not help but can make matters worse.....I was told 2 days out of work 3 week healing time....THEY SOOOOO LIED!!! Almost has destroyed my life.
Reply

Loading...

Think first wrote:

fys wrote:

Hi,
I've been following the posts for a couple of months now. I have a pineal cyst like most of you, with a lot of the same symptoms (fatigue, vision problems, trouble sleeping, pressure headaches, problems with my short term memory, irritability).
I first went to my GP about a year ago, complaining of extreme fatigue and double vision. She ordered a lot of blood work and an X-ray of my chest. Not surprisingly it all came back clear. I also went to have my eyes checked...a normal eye exam according to the doctor (apart from double vision, no depth perception, problems with my visual field and paretic eye muscles!!) I guess I wont be seeing that doctor again...

In June this year I finally convinced my GP to refer me to a neurologist, she ordered an MRI...and there was the pineal cyst. I was then referred to a neurosurgeon. He told me that he didnt believe the cyst was the cause of my symptoms...but the only way to find out was to surgically remove it. Which he won't do, because there are too many complications involved with the surgery. Im going to have an MRI follow-up in a year, and was told to look for signs of increased pressure in the brain... Thanks doc!!

Im only working part time now, because I dont have the energy to work a full day.
One of the worst things for me is that I feel like a hypochondriac. The people around me cant physically see my symptoms...and they dont understand the fatigue, its overpowering sometimes.

The only treatment I've had so far is with a specialised optician.
I've been training for about 8 months now. The motility of my eyes have improved and I can control my double vision better...but there is still a long way to go, and there is no guarantee that it can cure my vision problems. But it's a start...


Hey I dont know if you were able to get it removed? I had mne removed 15 months ago.....still have all the problems and worse the hole that he put removing it is stll yet to heal....it has been the worse 15 months of my life....and has left me disable....do to the the lack of being able to excerise and move ...I have put on alot of weight....have more nerve damage and well lets just say..DO NOT HAVE IT REMOVED.....it will not help but can make matters worse.....I was told 2 days out of work 3 week healing time....THEY SOOOOO LIED!!! Almost has destroyed my life.


Where did you have your surgery? That's really to bad that the surgery didn't help you. I am so worried about my son. he has no quality of life, lives with these terrible headaches daily that escalate in severity. He is depressed, has problems sleeping, pressure feeling in his head and other symptoms. My sons cyst/tumor is 1 cm and doc's say they don't know if his problems are from this cyst. They just seem to brush it aside. We live in Canada, where our health system is suppose to be on the high end of the scale for care. If this is so why am I thinking of going to the U.S. to get help for my son. There has to be more done for people who are suffering. But how big was your cyst and why did the doctors agree to remove it.
Reply

Loading...

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

Reply

Loading...

Guest wrote:

Hi Everyone!!! ( Abbygirl)
I was diagnosed with a pineal cyst in Feb of this year. After dealing with many of the same symptoms, and the doctors telling me that this was not the problem and just to come back for check up's. I found that NYU hospital has one of the best nuerosurgens in the world, and come to find out I had one of the largest cysts ever removed.. Yes , the other doctors were wrong it had to come out!! After a long surgery (march 15th) and even longer road to recovery , I'm doing MUCH better! If anyone has any questions about the surgery just ask for my e-mail and I'll answer any questions that I can...........


Hi abbygirl,I need more information about the Doctor and Hospital in NYU,thank you very much.
Reply

Loading...

me too, what was his name please!
Reply

Loading...

go to mayo clinic in rochester mn..they do pineal cyst surgery
Reply

Loading...

I have all the symptoms everyone has mentioned plus some extras.  Yes, the "incidental pineal cyst", headache for 3 years straight, tremors, unbelievable pain (joint, muscle, spine, neck, knees, everywhere) that seems to move from place to place, dizziness, wobbliness, fatigue, nausea, gastro issues, can't think right, anxiety!......
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.
Reply

Loading...

Thank you for sharing and I want to say that yesterday (6-12-2012) I just found out about this which was never disclosed to me by the hospital who did the test and by my family doctor. This past January I started experiencing pressure and severe stabbing and sharp pain that shoots from the back of my head along the left side of my brain into my forehead. The doctors have repeatedly told me, "Oh it's just a headache!"

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.
Reply

Loading...

please message me, my daughter has just been diagnosed as having a pineal cyst and i dont know anything about it, she is 13yrs old.

***this post is edited by moderator *** *** private e-mails not allowed **
Please read our Terms of Use


Reply

Loading...

Sean1983 wrote:

Thank you for sharing and I want to say that yesterday (6-12-2012) I just found out about this which was never disclosed to me by the hospital who did the test and by my family doctor. This past January I started experiencing pressure and severe stabbing and sharp pain that shoots from the back of my head along the left side of my brain into my forehead. The doctors have repeatedly told me, "Oh it's just a headache!"

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.


Hi Sean, Im experiencing exacly the same issues which you described. Do you have facebook? Or can I have your email address?

Thanks
Reply

Loading...