Pineal cyst and various symptoms

Suguest you join the Pineal Cyst Facebook group run by 

Lindsay McGuiggan Bernard you will get lots of help there :)

I am responding to the post above the one that says "Hi. My daughter is the same age, has a 7.5 mm pineal cyst and an abnormal pituitary gland....." if your doctors are still prescribing Darvocet for pain relief then you have a law suit because they took Darvocet off of the market due to the fact that it was causing cardiac arrythmias and other cardia issues. With everything going on with the symptoms of the pineal cyst you definitely don't need anything gong on with your daughter's heart! I am a nurse as well as I have worked as a pharmacy technician and I remembered when they pulled it from the shelf! Please do not use this medication for pain if you have it at home, get a second opinion from another physician about the use of pain medication by the name of Darvocet or Darvon! PLEASE! Or do your research on it atleast on the the internet about the removal of Darvocet/Darvon and why. It is dangerous and even before they took it off of the shelf it didn't do any more good as regular Tylenol. I hope that this has helped! I am going through attempting to get help for my soon to be 15 year old daughter who was diagnosed with a pineal cyst 2 days ago and I am scared to death about the road that we may have to face soon! God Bless You All! Ms. Shanon

My 13 year old daughter has a Pineal cyst. She started having headaches 2 years ago. The first one lasted for almost 2 weeks. After that, she would have 2 or 3 of them per week. Now she presents with a headache that has lasted 2 1/2 months..non-stop, 24 hours a day. She is dizzy and sometimes has ear and jaw pain. She was in the hospital for a week because they thought she had a migraine. After trying everything, they finally sent her home. They just discovered the Pineal cyst yesterday! Why they didn't do an MRI earlier I will never know. Problem is..the doctors here say that Pineal tumors/cysts do not cause headaches. Even if I find a Neurosurgeon willing to do the surgery, my daughters father doesn't think "HER" headache is debilitating enough to warrant surgery and we should wait a year to see if the pain gets worse.  HELP!!

 

My daughter was diagnosed with a pineal cyst. Dont freak out! Chances are it was just an incidental thing on the MRI and probably wont ever cause any problems. I was terrrified when they told me she had a cyst AN INCH IN DIAMETER!! But 6 months later she had a follow-up MRI and it hasnt grown a bit. I have a feeling most of the people on this site are dizzy/sick/etc from something else because my daughters cyst is biggger than any ive seen on here and shes fine! ...prayers work :)

I was diagnosed with a pineal cyst in Jan 2010 after experiencing vertigo for several months. The doctor said these cysts are harmless and never have symptoms. I have continued to have severe balance issues, tremors and vision problems and the neurologist diagnosed me with Progressive Supranuclear Palsy, a Parkinsonism. I have been on Azilect and carbidopa-levadopa since Sept of 2010 but it has not helped any of my symptoms. I have now lost most of my hearing and vision. I found the name of a doctor in Thousand Oakc CA, Dr. Shahinian, who would take my case and my surgery is scheduled after the first of the year. He tells me that I will only be in the hospital for 48 hours and able to fly home in a week. Hopefully I will have a normal life following surgery.

I have a pineal cyst too and recognise your symptoms - for brilliant support and help there is a group on Face Book I can introduce you to. My name on face book is Lilla Croysdale - look me up and message me and I will introduce you to the group. We have also started up a Pineal Cyst Foundation and there are members there getting cured because we have found surgeons who remove these cysts safely! Good luck.

Lindsay McQuiggan Bernard. need to send me a friend request. or else search Pineal cyst on facebook and its the page with the blue brain picture if you "like" that pineal cyst page i will send you a friend request from my real name (Lindsay) and then i will be able to add you to the private one (you cannot find this one by searching, we have it private so no one like friends/family on facebook can read our daily posts)

Earl..Good for you!! I am very excited you are having it removed. PLEASE post a note on here as soon as you feel better! I too would like to take my daughter there and would love to talk to people who have gone to see Dr. Shahinian, and more importantly- had their tumor removed by him. I cannot wait to here how it went.
I truly wish you the best of luck. God Bless YOU!

Those doctors are wrong! Although the majority of people with pineal cysts do not have problems/symptoms- many DO! PLZ check out the Skull Base Institute in LA. That is where I am taking my daughter. She is actually excited about the surgery because she knows she will be back to her old self. I have talked to many of his former patients via email and phone calls. They all said their symptons were gone less that 2 days after surgery.
Best of luck to you and keep us posted.

first off, your ulcer may be due to all of the NSAID's you've used to maintain your pain. They are aweful on the stomach. Using Omeprozole will make it easy for your stomach to tolerate the pain meds.

second, join the Pineal Cyst facebook group. great info from people such as you suffering with this pain. Pineal cysts CAN be symptomatic. Now your challenge is to the a neurologist who is educated enough on this topic to agree. There are two groups for this on facebook, both set up by the same person. One is the Pineal Cyst "group", the other is the Pineal Cyst Research "group". the "research" group posts documentation of these cysts, while the other simply discusses there symptoms, pain and frustration. They will easily become your second family. I'm on the groups and they have provided me with more information that I thought possible.

This facebook group names their doctors. But the majority of patients go see Dr. Shahinian at the Skull Base Institute.

God Bless

Hi Vanessa, My daughter was diagnosed about 3 years ago when she was 12. Her cyst was 0.8mm. Your post is the first one that I have seen to mention the pain in your knees and the stomach pain. My daughter was in cheer and tumbling for several years and had to stop last year because she kept complaining about how much her knees hurt. It never crossed my mind that it could have to do with the cyst. She has suffered from headaches for 2 years but they have gotten worse and now she constantly complains that she feels sick and her stomach and sides hurt. The only thing that I have noticed consistent with all of her symptoms is that they seem to get much worse during the winter months. Her headaches and joint pain are much more frequent and worse and her monthly cycle is also very irregular. Have you found anything to help you? Please let me know anything you can. It looks like you posted this a few years ago so I hope you still read these and can possibly help pave the way with some of your insight and what has helped you. Thank you so much!!!

Hi! I have one too,painful to touch the back of my head had a scan nearley 12mths ago due to have another i put all the pain in my head down to that i can feel it when i touch the back of my head Drs don't seem to know anything!!
Pat

I have been diagnosed with a pineal cyst 2.5cm x 2.5cm. My walking but my walking has depreciated but I hardly get a headache. The doctor wants to drain it but I am scared I am nearly 82.

I to have a pineal cyst pressing on my brain 2.5cmx2.5cm and the doctor wants to drain it but I am 82 and I am scared.

Or over production in some cases. My daughter has a pineal cyst and cannot sleep enough. She is constantly tired and sometimes can hardly function.