Pineal cyst

31 Comments

  1. Mario Salmon MD FACS says:

    Superb surgical and video edition technics.
    Congratulations!

  2. Martin says:

    Excelent!!!!

  3. Nice work, Professor Hernesniemi, congratulations!

  4. George Ibars MD FACS says:

    Big hello and regards from Miami.
    Great Video! Nice job Juha.

  5. David Pincus says:

    While the operation was well done technically, I see no indication for resection of a small benign pineal cyst in the absence of hydrocephalus even if there has been some interval growth. The patient is exposed to risk with no clear benefit for this common, anatomic variant.
    David Pincus, MD, PhD
    University of Florida

  6. Tariq Rashid Malik says:

    Agreed excellent technical demonstration but no clear indication except the interval growth.
    Tariq R Malik,MD

  7. Prfessor Hernieniemi:¿Can this unilateral approach be used safely in large pineal region tumours?. Thank you.

  8. Tayfun Hakan says:

    Prof Juha Hernesniemi is doing excellent operations in an ordinary manner. He is a gentleman, modest and more important ethical teacher. Thank you Prof Hernesniemi for sharing your experience.

  9. Manoel Baldoino Leal Filho says:

    Dr Hernesniemi and his group presented and excellent work according to in this case.
    Congratulations!
    Manoel Baldoino Leal-Filho (Neurosurgeon in Brazil, MD, MSc, PhD).

  10. Martín A. Burgos says:

    I am not yet Neurosurgeon; but this surgery is impeccable, magnifies the completeness of the procedure to surgical and quickly … Very impressive Prof Juha Hernesniemi. Many congratulations! A greeting from Argentina.

  11. Josias Inacio da Silva says:

    Prof. Hernesniemi good work
    Congratulations!
    Josias Inacio da Silva , M.D.(Neurosurgeon in Brazil.Maceio-Al)

  12. Jeffrey Oppenheim, MD says:

    Beautiful quality HD video. It would have been better if there were some clear indication for the operation other than some unknown degree of interval growth in what might otherwise be considered an incidental and asymptomatic radiographic finding in a 19 year old.

  13. Thank you all for your interest and comments,…
    Regarding the indication for surgery, The pineal cysts increased in size and the patient had increased episodes of headache…The cyst is seen in MRI touching the tectal plate…Should we wait for aquiductal compression and hydrocephalus?!
    The management is decided after calculating the risk/ benifit…
    In prof. Hernesniemi, this operation is safe and fast

  14. Mohamed Barakat says:

    excellent operation prof. Juha it is very impressive

    the indications of surgery sometimes are different from surgeon to another according to experience and confidence in skills the person has. So don’t let our fear affect our choices
    ( Mohamed Barakat Egypt)

  15. Joan Kozma says:

    Thank you Prof. Hernesniemi. It is so refreshing to see a neurosurgeon acknowledging the problems these cysts cause. I have a 11.2mm colloid cyst and a 9mm pineal cyst. I have suffered decades with head episodes, head pains, sleep problems, memory issues etc. (The list is a long one of increasing neurological problems). Here in England, I am just left. No diagnosis and no treatment year after year. I wish we had someone like yourself here.

  16. Thank you for posting Juha. I am 35 year old woman from Denmark suffering from a pineal cyst size 16 x 12 mm. The doctors wont do anything about it and they keep telling me that all my symptoms must come from something else. I have been checked for so many things, had so many blood tests etc. Nothing to find, everything is fine and they still keep claiming that my symptoms is not related to the cyst. I do not agree in any point. And I am so sorry that my lack of confidence in well educated doctors is now a reality. Doctors are supposed to be people you can trust and I sure hope that one day I will trust them again(I know not all doctors are not the same – I hope I dont insult anyone.

    The reason why I am leaving a post in here is to beg all the neurosurgeons from the buttom of my heart to believe in your patients when they keep telling you that their cyst is the reason why they can’t function and that their symptoms is caused by the cyst when no other reasons is to be found.

    I suffer from my cyst – I suffer more and more. I am starting to suffer so much, that I would rather die from surgery, than keep living my live in pain – pain that is so big that I can’t take proper care of my own children. You need to listen to what I am telling you and you need to do more research about all of us suffering, so that you will finally understand, that it is indeed possible to have a so called small cyst that causes havoc in the brain (even though it dosn’t cause hydrocephalus).

    I am sure that this woman who had surgey gained big benefits of this operation even though the cyst was “small” and even though it wasn’t life-threathning – but what is life worth if you are in constant pain? To me – nothing! I would take the risk being operated, problem is that surgeons in Denmark(and many many other countries) is ignorant and without knowledge of what the pineal gland cyst can cause of symptoms. I hope you will all some day in the nearest future experience that asymptomatic cysts is not always as asymptomatic as you think it is – try and ask and listen to the owner of the cyst. I beg you.

    It would be so so nice if those who gets these cysts removed could tell the world what a difference life became after surgery, both the good and the bad stories.

    I am working on my own website – please visit if you want to know more about me and see links to other peoples stories. The site is new, so there isn’t that much to read – yet.

    Juha – thank you from the bottum of my heart because you do these surgeries. You are safing lives out there. Thank you for educating future neurosurgeons to perform these operations – I hope you some day would come to Denmark and teach our neurosurgeons on Rigshospitalet(State hospital)that pineal gland cysts can cause havoc in the brain if not being removed even though it dosn’t look like it.

    The brain is still a mystery in many ways and there’s still a lot to be learned. How much do we really know about the pineal gland and its sorroundings? Who should we listen too? How do we become more clever? Listening is a good start(the thing is that I am getting problems with hearing and also with my vision – but still it is not my cyst doctors says, wonder what it is then, mayby I am just imagine my pain and symptoms, yyup it is probably just me being crazy with all the other cyst suffers).

    I really hope I did not insult anyone – if I did then I would like to apologize. It is not what I am here for and it is not my intension. I am a frustrated woman who cant get any help – even though it is out there, but lack of knowledge is the reason why the help is not comming.

    Last I want to ask if there is any statistic records of brainsurgeries performed with endoscope/micro surgey? I can’t find anything. I have only heard of succes stories but I am sure there must be bad stories too.

    I would also like to know how often people get a blood clot and/or strokes after brainsurgey. The same goes for infections?

    Kind regards, Eva

  17. FrustratedPatient says:

    I feel compelled to comment. The following sentiment is being expressed from the perspective of someone suffering not only with a “benign” pineal lesion but also struggling with why it’s so difficult to locate credible, educated doctors and surgeons who are willing to take these things seriously.

    After consutling with many different neurologists and neurosurgeons, it’s become pretty clear to me that most of you are TERRIBLE at the whole “thinking outside of the box” thing (or “thinking outside of the textbook”, if you prefer). Before I located Dr. Teo, Dr. Shahinian, and Dr. Dong Kim (all of whom have advised surgery for my “incidental pineal cyst”), I used to leave each office visit a little more defeated but also just fit to be tied. I’d laugh out loud at the sheep mentality that seems to infect almost the entire neurosurgical community: unless the specific illness is clear-cut and spelled out for you in your textbooks or lauded by someone you respect (who probably got to that position by taking risks, pushing the envelope, and challenging current schools of thought within your profession), you immediately dismiss any possibility of it being “credible” or true. Even in the face of your own patients pleading for you to consider otherwise. This is what I have found to be true in my jourbey to find the right help for the condition I suffer from, which is a symptomatic pineal lesion.

    I guess it must be a lot easier to just write us off as hypochondriacs or even as crazy people in need of psychiatric help.

    Didn’t you want to get into this field because the human brain is “the final frontier” of organs?!?! Remember before you became jaded and bound by the politics of your profession – when new ideas, theories and concepts actually EXCITED you? Remember that?? Remember in medical school, when you were willing to admit that you might not know everything there is to know, and that everyone, no matter how long they’ve been at this, has daily opportunities to learn and grow?

    If you don’t remember any of that, try harder. If you still don’t, then do us all a favor and retire. As Bob Dylan said:

    Come mothers and fathers
    Throughout the land
    And don’t criticize
    What you can’t understand
    Your sons and your daughters
    Are beyond your command
    Your old road is
    Rapidly agin’
    Please get out of the new one
    If you can’t lend your hand
    For the times they are a-changin’

  18. one of the many cyst sufferers says:

    we need more people like you in new zealand.
    we need help, people who will listen, people who will stop our pain and suffering so we can live a normal life.
    this is not living, this is simply existing..

  19. Darla Thompson says:

    I found out about my Pineal Cyst in 1999 after a 4 Month long Head Ache, MRI showed a 12mm x 9 x9 with narroowing at the anterior
    zone of the aqueduct and indents into the posterior corpus callosum. Not sure what it means just know I have major Head Aches and
    my Doctors say it’s not the cyst. I think their full of crap. California U.S.A.

  20. Jacob says:

    Only performing surgery when hydrocephalus is present is not only illogical it greatly reducing the quality of life for those suffering from neuropathic pain, unstable Diplopia, siezures and irretractable headaches. There is no evidence to support this approach either, surgery should be considered especially when symptoms are of sudden onset.

    No doctor should ever refuse to treat a patient where Diplopia cannot be corrected through prisms, a change of over 10 degrees in eye position or headache lasting over 3months.

    A contraversial subject indeed however the use of surgery has been proven to resolve symptoms.

  21. Jacob says:

    When a patient presents with symptoms of sudden onset headache, visual disturbances and a change from their normal self the protocol is to investigate these symptoms. There is usually no cause found because pineal cysts are perceived to be incidental findings. They are symptomatic in a patients presenting with these symptoms!

    Many will say they have seen hundreds of cysts through their career, whilst investigating patients for long term headaches and visual disturbances. Many patients will be prescribed gabapentin or referred for squint surgery which will be unsuccessful for the majority as pineal cysts cause unstable Diplopia unlike convergent or divergent squints.

    Pineal cysts are continually being mismanaged by medical professionals due to a lack of education or thorough investigation.

  22. Jacob says:

    Visual distortion occurs with the slightest pressure applied to the optic nerve, compression does not need to be visible on the MRI scan for an indication to act upon.

    This is very poor form from all doctors who say they would refuse surgery.

  23. Mary says:

    My 14 yr old son had what was measured as a stable mass 8mm pineal cyst for 6 years. It was successfully removed 8/20/14 by Dr Dong Kim at Memorial Hermann Medical Center in Houston, TX , it was determined to be a 1.5 cm mass upon removal. There were no indications of mass effect, hydrocephalus, or aquiductal compression. He had an unrelenting headache that responded minimally to medications starting 3/3/14. Over the course of 6 years he had severe weekly headaches, visual disturbances, numbness in his extremities, pulsatile tinnitus, fatigue, weakness, short term memory loss, gait fluctuation, differing pupillary response and night tremors. He was never diagnosed as anything but with migraines and psychosomatic.
    Upon opening his eyes in recovery all symptoms have disappeared and have not returned post-operative. Had my son’s “cyst” been taken seriously by anyone prior to Dr Kim he would not have suffered for so terribly long. He was not allowed proper diagnostic testing to determine if this mass was the cause, rather the opposite-all testing was done in the attempt to prove he must have anything other than this mass.
    Brain tumor diagnostic protocol should be employed as first response to these masses if symptomatic to definitively determine cause in order to succinctly diagnose rather than reduce the quality of life of these patients unnecessarily.

  24. Jenny says:

    Here here. I too am the UK. I have a pineal cyst, 2.2 x 1.8cm. I have long term headaches, visual disturbances, numbness, poor temperature control, extreme fatigue, memory loss, upset balance, ringing in the ears, weakness. It is all getting slowly worse.

    My Dr laughs at me. I have never even seen a neurologist, he refuses to refer me.

    What do I do now medical profession??

  25. pineal cyst new zealand says:

    17mm symptomatic p.cyst symptoms head pains visual disturbance balance issues. Numbness. And the list goes on. Let us be heard!! We know we are symptomatic without hydro

  26. Kimberley says:

    Agreed. 22 year old female here and I too suffer with a symptomatic cyst. Had an MRI because of headaches, visual disturbances and twitching. I’m told the cyst is not my problem yet they cannot tell me what is causing my problems and pain. I now get intermittent eye problems where I am unable to see out of one of my eyes due to complete blurriness. When this occurs, the pupil of the eye I’m unable to see out of is much larger than the other.
    Please, listen to us and trust your patients as much as they try to trust you. Maybe we won’t die from this, but our quality of life sucks.

  27. Isabelle says:

    Fellow UK cyster here, for over 10 years I have suffered with sleep problems, visual disturbances, balance and Co ordination issues, fatigue, never feeling 100% and then within the past 3 years I have began having migraines and seizures. Saw a neurologist (or rather the registra as I am ‘not worthy’ of seeing the doc himself, only the middle man) regarding all my symptoms and they are testing me for Epilepsy, blood work is all fine, and MRI showed usual crap of small incidental cyst. EEG showed no seizure activity, they can’t understand my symptoms, it’s just a shame that they can’t look further into realising the cyst is causing the majority, if not all of my symptoms! How can something the size of a grape growing in your brain NOT cause symptoms, symptoms which might I add cause you docs to give us the MRI which finds the cyst!!!

    If us cysters weren’t so tired and in pain, boy would we be fighting hard to be heard!

  28. Angie says:

    Jenny from the Uk , as a fellow sufferer of a 1.6 cm pineal cyst , I too am in the Uk , in Devon , please find yourself another doctor . For him to laugh at you when yours is over 2 cm is nothing short of scandalous . I had headaches for years and in Oct 2013 was taken to A &E very disorientated , unable to balance and very unwell . They arranged a brain scan fairly urgently and the cyst showed up like a light bulb , after blood tests they were fairly sure it is a cyst but I am on the Tumour surveillance program under the care of a Consultant neurosurgeon with brain scans every year to monitor size . I too have battles getting them to accept my symptoms are a result of the cyst which as we famously know they refer to only as , an incidental finding .
    Anyway , since the discovery my short -term memory is deteriorating , I’m constantly fatigued and can sleep endlessly , pressure headaches , you get the pic same as all the rest of us sufferers . I was referred to neuro psychology on the memory issues and. also a neurologist , the psychologist was scathing of the neurosurgeon and copied me in on her letter to him about her suspected link of the memory problems to the cyst . I’m due to see the Neurosurgeon again in March this year 2016 . I’m taking along the short video of the surgeon in Helsinki on the removal of a 1 cm pineal cyst , safely and fairly swiftly . I was told by the Neuro dept at the hospital where I’m treated the Uk are 20 yrs behind the USA in this field of surgery and it basically just does nt happen here . Shameful .

  29. Britt says:

    It’s very frustrating reading all the comments that second guess whether or not this doctor should have performed this surgery. It’s frustrating because I’ve sat in treatment rooms with neurologists who rolled their eyes at me and were unbelievably condescending when I sought out to learn more about my pineal cyst that was found on my MRI. My scans did not indicate hydrocephalus, and I was still able to gaze upward (although it was excruciatingly painful); doctors cast aside the possibility of a symptomatic pineal cyst when there’s no clear hydrocephalus. Well, I had lived for years with stabbing supra orbital pain, a constant headache 24/7, light/noise sensitivity (I had to wear sunglasses and noise canceling headphones in my home), and I didn’t sleep more than 3 hours throughout the whole night, every night (and no, those 3 hours were not back to back). I saw black floaters in my vision all the time, and I felt as if I was drugged on Benadryl all the time because I could never get enough sleep, even if I was able to take naps. I work in pediatrics and was unable to keep up at work.

    I decided to look for a specialist and found Dr. Dong Kim in Houston, TX (you might remember him from the news when he operated on AZ representative Gabbie Giffords). He was the first neurosurgeon (in fact, first healthcare professional) who took me seriously, listened to me as I spoke, and was genuinely interested in helping me. I had my pineal cyst removed on January 20th 2016, and let me tell you- all of my debilitating symptoms are gone. I’m sleeping, for once in years I have NO headache, I have energy, no visual disturbances, I can look up/down without stabbing eye pain, and light/noise don’t bother me anymore. Dr. Kim saved my life. I was miserable and hated life before my surgery, because my symptoms held me prisoner. I’m so glad I went with my gut and pursued care with Dr. Kim, instead of listening to the naysayers who told me “it’s not the cyst. You have migraines. Lots of people do. We will check you in two years.” Well, my cyst grew from about a quarter of an inch to over half an inch within the 10 months from my scan; I found this out after surgery.

    To those who are contemplating surgery, please make sure you have spoken with an experienced neurosurgeon who actually studies these lesions and knows what they are talking about. Also, Dr. Kim won’t recommend surgery if he does not think it’s appropriate. You are your best advocate.

    To the neurosurgeons that go out of their way to make patients feel that their concerns are unfounded, please listen more carefully. They aren’t there trying to tell you how to do your job, they are just desperate for a trusted health care professional to care about the pain they experience daily.

    I am forever grateful to Dr. Kim and his amazing staff at Mischer Neuroscience Associates for giving me my life back, and allowing me to be my old self again. I have had no post op problems and will be returning to my health care job this week.

  30. Steve says:

    Im steve ive got a 30mm pineal cyst ive suffered for years with double vision sometimes its so bad i can barely see,headaches,feeling faint and dizzy with a ringing in my ear,i was admitted to north tees hospital in the uk a few days ago,they examined me and found my left eye no longer responding to light,ive terrible dastigma i think its called when your eyes wobble,im wobbly on my feet,terrible memory and ive a significant left side weakness,they mri’d me and could clearly see the cyst so phoned the neurologist at james cook to see what they wanted to do,they answered nothing because they said it wasnt big enough so i was discharged and am now feeling much worse in alot more pain,i feel like killing myself………

  31. Lynn says:

    My son, age 28, was diagnosed with a “asymptomatic” pineal cyst in January this year, after suffering a blackout/seizure. It was assumed by the neurologist (who was a complete tosser, and didn’t even look at the MRI) that he had suddenly developed epilepsy, despite there being no incident that would have caused this (ie head trauma). He had been suffering headaches and fatigue for several months, but had just put this down to lack of sleep as he and his wife had an 18 month old daughter, who had been having some medical issues of her own. So, he was sent for all the epilepsy tests, which of course, were negative. So, he was just putting up with the headaches and then in March, had another blackout. So his doctor referred him to a different neurologist, who was slightly more interested than the first, but still insisted that pineal cysts don’t/can’t cause symptoms, but that his headaches and blackouts were caused by stress and depression (I should say here that my son is a very laid back, non-stress type of person, and apart from his frustration with the neurologists, didn’t exhibit any signs of stress and depression, so declined the offer of anti-depressants). He was unable to drive due to the blackouts, which complicated his life further, as he lives in a small country town with no public transport, and worked in a different town. So, onto the internet we ventured, only to find hundreds and hundreds of blogs, posts, articles etc written by other people who had also been suffering symptoms from an ‘asymptomatic pineal cyst’. Our research led us to Dr Charlie Teo (Neurosurgeon) in Sydney, and although his consultation fee was more expensive than the other neurologists, we decided that we may as well go straight to the top, so to speak, rather than waste more money seeing the other useless neurologists. Dr Teo was the only surgeon in Australia (as far as we could ascertain) that took the pineal cysts seriously, and would surgically remove them, and had done several studies and papers on the symptoms and surgical removal of pineal cysts. Dr Teo carefully examined the MRI’s (one normal, the other contrast) and was able to show my son exactly which parts of his brain were being affected by the cyst, and why removal would relieve the symptoms. Obviously, the thought of brain surgery is very scary, so my son decided to try everything else he could think of to relieve the headaches (chiropractic, acupuncture, etc), but to no avail. So, he has decided to g ahead with the surgery, and has an appointment with Dr Teo next month. I have a question for those that have had the surgery – how long was your recovery time? We are trying to organise work schedules etc to look after him after the surgery, but don’t really know how long recovery takes. Obviously, we will ask Dr Teo when we see him, but I thought it would be good to get an idea from those that have actually gone through it. Are we talking weeks, or months? Thank you for any replies.

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