Pineal gland cyst causing problems... Anyone else?

Hi, does anyone on here have or has had a pineal gland cyst? Mine was picked up on an mri a month ago and it's 15.9mm and causing me real problems. If I don't take 600mg of ibuprofen every 4 hours then I just can't function as the pain is like nothing I've felt before. It started at the end of February this year when if I sneezed, coughed, bent over it was really painful in the back of my head but now it's all the time regardless of what I'm doing. My vision has been getting progressively worse but my prescription hasn't changed and I have a really bad pain behind my left eye when I look up and it seems to distort my vision in that eye. I've got another mri booked for the 18th of this month and then a neurologist appointment in November and one in December. I have a feeling that the neurologists will want to do the whole watch and wait thing as that's all that seems to be done in the UK. Has anyone experienced symptoms with their cysts or better still had surgery? TIA xx

13 Replies

  • Hi Nicky. I'm shocked by the lack of understanding surrounding your health issue. I had to Google 'Pineal cyst' as It's not something I've any knowledge of, and I see that this problem of denial amongst health professionals is common.

    The gist is that most people with pineal cysts are told categorically that their symptoms are unconnected to the cyst and are referred for psychiatric assessment.

    Yet in other countries these cysts are removed routinely by endoscopic surgery.

    One lady said she accepted psychiatric intervention to deal with the disrespect and neglect she'd suffered from doctors, and that no one would actively seek brain surgery unless they were desperate for an end to the dreadful pains and eyesight problems.

    It seems the only people who manage to get the necessary surgery are those who can afford to access it abroad.

    I wish I could offer more than sympathy Nicky. The NHS is failing so many people owing to cost cuts and no fault of its own. I just wanted to say I'm sorry for your situation, and to wish you all the very best in finding the help you so deserve. Cat xx

  • Oh my Lord that is just awful, Cat. With something that impacts so much on quality of life that can potentially be treated, patients should surely be advised of the risks and benefits of treatment versus non treatment and be given an informed choice.The healthcare situation in this country is simply down the pan : (

  • Well I suppose if people are being told that the cyst can't and doesn't produce symptoms, then how can the sufferer challenge that ?

    It seems the medics are relying on the fact that the brain doesn't experience pain. But here's an excerpt from a typical challenge to that :-


    For those patients that are symptomatic, it can be debilitating and life altering," Dong H. Kim, M.D. director of Memorial Hermann and professor of neurosurgery at UT Health Medical School, told Ivanhoe.

    Dr. Kim says patients often suffer for years, because even if a doctor finds a pineal cyst, they don't believe it causes symptoms and won't perform the delicate surgery to remove it.

    "I know different because I have removed over 100 of these cysts and so many of my patients, you know the vast majority have had such complete symptom relief," said Dr. Kim.


  • Perhaps the brain itself is incapable of feeling pain but if you have an object taking up space within brain tissue and effectively squashing surrounding neuronal connections you are going to have trouble ! Look how much chaos simple inflammation ( swelling of brain tissue ) can cause. I just do not 'get' where medics are coming from with this mindset ! x

  • Hi Cat, thanks so much for your reply and kind words. It would seem as though most if not all doctors in this country don't believe that they show symptoms. I had a gp appointment yesterday and I took my most recent letter which says I have a 15.9mm pineal gland cyst and I showed my doctor and she said 'oh right, they didn't find anything then' to which I said about the cyst and she said 'oh it won't be that as they don't cause symptoms '! I have to admit I drove home and had a bit of a meltdown as I was sure that she'd be a 'believer'. So she said she'd write to the consultant and let him know about my recent symptoms and see if he'd move the December appointment forward but she was doubtful that he would. I'm even prepared to take out a loan to pay to go private but the problem is going to be finding someone who will operate

  • Hi Nicky, maybe you could print and shove this under GP's nose :*Pineal%20Gland&Field=fld.title&SortBy=srt.unspecified&SimpleSearch=True&Clipboard=False&BackToSearchResultsCount=0&

    I can't believe this 'no symptoms' myth is being perpetuated in the medical community after so much evidence to the contrary. Angela x

    Sorry, this link appears not to be working. Try this and click on the first result down headed Healthcare Database. x

  • Also :

    Your GP needs educating ! I hope your neuro appointment goes well, please keep us informed.

    Angela x

  • Would you consider going abroad for the op Nicky ?

    (Crazy that we have to consider such measures !) x

  • Most definitely yes. I read an article recently describing it as a debilitating condition and the lady who wrote it said that by the end she was contemplating suicide and I can totally see why. I think that I'm getting used to the ibuprofen now as the effects are wearing off after an hour an a half but the Dr says that there's nothing else I can take so I'm not sure where to go from here. When it gets to 3 1/2 hours after the tablets I feel like I can't cope, am unsteady on my feet and I stagger about like I've had too much to drink! xx

  • That's pretty much how brain injury affects most of us Nicky, so an interesting parallel already.

    If you have the energy for it, there might be some benefit for you, and others in your situation, in bringing your plight to the attention of your MP ??

    Good luck in whatever you decide to do in pursuing a better quality of life ; and please keep us updated on how you're getting along.

    All best wishes, Cat xx

  • Thanks so really does help to chat to people xx

  • ;-) x

  • I'm so sorry you're having to go through this and I find it totally shocking, particularly given the evidence. What I'd add is, the symptoms you describe are identical to mine following a serious accident, two rain haemorrhages and a badly fractured skull. I was given much stronger medication than ibrupofen but the symptoms were identical two to three hours after taking pain would begin to wear off far too quickly and I'd be in excruciating pain, unable tot think, unable to see properly, falling all over the place. I agree with you, with no medical training whatsoever, it really does seem as though something else inside your brain is being impacted by the loss of space caused by the cyst, particularly your vision. You're exhibiting symptoms of someone who's had a brain trauma, so I'm amazed that no one is paying attention to that. Good luck with your pursuit of appropriate help and treatment. Sending you a hug x

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