Pineal cyst and various symptoms

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I too have a pineal cyst its 1.7cm and had 2 opinions. I'm scared to pieces and my nerves are getting worse. I have been diagnosied 1 month ago by having a MRI. I go again in a month for another MRI and was told they are just watching it to see if it is growing and just gonna continue to watch for growth. Its very little they will tell me about them. I'm having bad headaches and visual problems one of my doctors put me on meds,thank goodness and also on anti-depressions (without them I couldn't function) Sad

It just seems like its not getting any better. Each doctor is telling me they don't believe the visual problems that I am having and headaches are not related... are ya'll having the same things fed to you about you symptoms not being related to the cysts???? If you have any information to share with me plz do, I would love to read up more on this and to have friends in the same situation as I am. I'm making so many mistakes in my work which I am a book keeper for my husband that he now has to go behind me and we've come to the conclusion to hire someone else to help me out. Its really bringing me down. I wish each of you the best of luck and God Bless each of you. Prayers be with you.

kelkaurine · Newbie Joined: 02 Oct 2007 Posts: 7

This is from the OHSU site this may help everyone suffering feel a little better and maybe you can enlighten your Drs about pineal gland cysts.

pineal region tumors
Many different tumors can arise near the pineal gland, a gland that helps control sleep and wake cycles. Gliomas are common in this region, as are pineal blastomas. In addition, germ cell tumors, another form of malignant tumor, can be found in this area. Tumors in this region are more common in children than adults, and make up 3 to 8 percent of pediatric brain tumors. Benign pineal gland cysts are also seen in this location, which makes the diagnosis difficult between what is malignant and what is benign. Biopsy or removal of the tumor is frequently necessary to tell the different types of tumors apart. Persons with tumors in this region frequently experience headaches or symptoms of increased intracranial pressure. Treatment depends on the tumor type and size.

kelkaurine · Newbie Joined: 02 Oct 2007 Posts: 7

One place that I found helpful was the website savemissy.com she had a "pineal gland cyst" I hope that Drs are reading these and keeping tabs on how many people have these cysts and how many people have the SAME symptoms and put two and two together....Good luck all....also look into the skull base institute in LA or go to research hospital sites and search for pineal gland cysts to find more info on them.

diamonds01 · Newbie Joined: 18 Jan 2008 Posts: 1

hi,
i just had an mri of the brain. two weeks ago, i suffered some vision problems and since then i have a horrible headache that will not go away. the past few months i have suffered from fainting spells. the mri showed a pineal cyst, i'm not sure of the size. the dr told me its nothing to worry about, but i can't believe that. i also suffer from joint, muscle pain and severe fatigue. i was diagnosed with fibromyalgia, but i am wondering if it can be from the cyst. having any type of cyst on any part of your brain is scary. it seems that drs. don't know alot about it. i live in new york. if anyone knows a good dr that can provide real answers, please let me know. good luck to everybode

kelkaurine · Newbie Joined: 02 Oct 2007 Posts: 7

Hi all!

So I went to the Skull Base Institute and had the pineal cyctic tumor removed 14 days ago. All went well and I am recovering well. I met Kelly tonight and it was so neat to meet someone who has been through the same things as you surgery and all it was so empowering. I hope everyone is doing ok and I am really going to try and educate doctors and radiologists about these cysts and tumors and their symptoms considering I know what they are I had one. If anyone here needs help or has questions please visit my website at kelsy.pledgepage.org or email me at **** I am here to help! Kelsy

**edited by moderator**

uglykoch · Newbie Joined: 26 Jan 2008 Posts: 1

Hi! I am new here and wanting to find out about your symptoms? I have been diagnosed with a benign appearing pineal cyst with septation. I was told this had nothing to do with my symptoms, and will recheck again to see if there is any change. My symptoms are headaches, less sensation to entire right side of body, have had weird visions,dizziness. Also have alot of muscle twitching and cramping and pain, mostly on right side. also my right hand and foot are colder than left.
Have had brain MRI and lumbar puncture, the only thing that has shown is the pineal cyst. Right now I'm also going through gallbladder attacks. Waiting for test to come back for that.
I'm wondering if anyone else has had these symptoms with a pineal cyst?? I am going to check out Kelsy's website. Please reply anyone..
thank you
Tammy

Guest · Guest

Hello everyone- I too was diagnosed with a 8mm pineal cyst about 2 years ago, and my doctor told me that it was nothing to worry about at the time. But I too have had similar symptoms with severe fatigue, headaches, muscle and joint pain with left side weakness. I always want to sleep and can't get enough energy to exercise or just be my self. I have trouble concentrating and a horrible memory! All this and I am only 25yrs. I have also had cervical cancer, endometreosis, and newly diagnosed interstital cystitis. ugh! so i feel your pain. does anyone know a good doctor in the louisville area of Kentucky?

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I have been told that i have a pineal cust it is somewhat large about 2.4cm i cant sleep and have been told i have fibromyalgia and im 17 year old male i have no idea how that could be, although it does run in my family, but i have had a constate headache for almost 6 months and i cant fell my legs at all, the docs have even put needles in them and moved them around i feel nothing. After reading what is on this web site that i should push for the surgery.

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I waited until surgery was complete to make a post here. I hope I can share some useful information with anyone that is seeking it. I had no idea what was going on with me, but in september 07, I noticed a vision problem at my yearly eye appointment. It just seemed that I could not focus well. Within a month, I was starting to get pressure in my head. It would happen after sitting for a while and would get up to walk down the hall at work. The pressure would just come on and work its way through my head. I thought it might just be stress, as I had a lot going on at that time. I could stop and let the pressure pass, and then all would be fine. At te time I was concerned about blood pressure causing the symtem. In Jan of 08 I had an incident after working out at the gym. I felt extremely sick to my stomach, I set in the car a let it pass and then headed home. As I pulled out of the gym everything went bright white and I immeadiatly pulled over and rested until it passed. That was what made me decide a trip to the doctor was needed.

Some blood work was done and they sent me in for a CT scan and followed up with an MRI due to the discovery of a Pineal Cyst in the CT scan. The cyst was 1.8 x 2.1 x 1.8cm, so it was pretty good sized. The doctor in Cheyenne, WY, where we live refered me to A Dr. in Denver, who in turn refered me to a pedeatrics neurologist from childrens hospital. The reason being as this doctor had much more experience with Pineal Cyst. It took sometime, but I had surgery on friday to have the cyst drained and an extra drain hole added for the spinal fluid cavities. The cyst was big enough to block the flow of the spinal fluid, and the spinal fluid is what was causing the pressure in the brain.

After surgery I could already feel a difference of the state of my brain. I am at home now and still in recovery. The Doctors could tell a big difference from the after sugery MRI. They acted a little surprised at how much pressure they thought was there.

I know this is a little rough, keep in mind I am recovering from a form of brain surgery. The only real side effect so far is a little vision issue from blood pools in my vision. I can tell that is clearing and it has been worth it. Hopefully, if anyone has questions, I can help. Please feel free to ask and I will try to get back to you.

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HOW BAD WAS THE SURGERY AND DID THEY GO FROM THE BACK TO GET AT THE CYST? DOES ANYONE NOW WHAT THE SUCESS REATE OF THIS SURGERY IS? AND HOW DO YOU FIND OUT WHO THE BEST IN THEIR FIELD FOR THIS PARTICULAR SURGERY?

Pineal cyst and various symptoms

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