Pineal Gland Cyst and brain surgery for headaches

We are going through this with our 9 year old. No one has offered to do surgery. Brain surgery is scary no matter what. If you feel it's best to get done do it. I cant say what it feels like to have such pain. But seeing my child suffer on a daily basis I know its not easy. You can do anything that you put your mind to it. I say if it helps relieve your headaches and you have talked it over with your doc and he thinks its best. Then do it. I mean recovery will be hard but think of long term effects. Your family may say yhour crazy or they wont be there. In reality they will be there for you. Brain surgery is major they are probably just as scared for you as you are yourself. If we are given the option for surgery fo rour son we are doing it. He wants its done and hes 9. Big decision. Just weigh the pros and cons and think hard make sure this is what you want.

I have had mine aspirated twice. Got about a year out of the first aspiration and then I was really sick again so I had to get it done again and got about 2 1/2 years relief from that. I was diagnosed 10 years ago and have had 4 operations since. One to have a shunt inserted, 2 aspirations of the cyst and one craniotomy to have the cyst removed. The last op was 4 years ago last month and now ive been told that I have to have another craniotomy to have it removed again because it has grown back at a really alarming rate 1.2 cm in 2 years. The reason I have had to have so many surgeries is because it is dangerously close to my optic nerve and is now really close to my brain stem also. My doctor in Ireland says that these type of cysts are really dangerous if not treated properly. I have never been on medication for it I have just had surgery to relive the symptoms. I am also not sure if my cyst is unusual in the sense that removal is really my only option now and that is coming from 3 doctors as I have had second and third opinions from other doctors during the last 10 years incl doctors in London and Spain. If any of you have any questions about surgery recovery times etc pm me and ill try help you out.

duveduve wrote:

Barb Silvestro wrote:

I had a pineal cyst measuring 1.0x1.2x1.7. I had it removed October 2010 by Dr 's Bristol and Nakaji of Barrow Neurosurgical Associates at St Josephs Hospital in Phoenix, Az. I have had only one migraine post surgery - no migraines in the past 11 months. No vertigo. No ear pain. I do have some other issues now- possible surgery induced fibromyalgia, but stopping the daily migraines, vertigo, nausea, photophobia, jaw/ear pain was well worth it. Mine was indeed a cyst, not a tumor. Just thought I'd share.

Barb

I realize you gave a very detailed reply to this, but you did not go into how the surgery was performed, your recovery time, etc. Would you be able to PM me on this? I've been looking for answers for 3 years, and the area in the mid-west where I live does not have an abundance of good neuro-surgery departments. I've been given the "wait and see" approach even though my cyst is growing. Any other information you could provide would be greatly appreciated.
Thank you.

I have had a pineal cyst removed 4 years ago by a crainiotomy. I was told I would be in hospital for about 2 - 3 weeks but was out after 3 days. Took about 3 - 4 weeks to heal at home and then I was pretty much back to normal to be honest. except a very nasty scar at the back of my head. I just found out yesterday that I have to have this op done agin in a few months as the cyst has grown back really really fast and is heading straight for my optic nerve. I was told if it is not removed soon I will go blind. I hope this helps you if you have any questions just pm me :)

the surgery was endoscopic craniotomy. I was in the seated position and they went in from a small burr hole from the base of the skull. I can't get a pm from this site, but you can email me at _[removed]_ and I'd be glad to talk. I was out of work five weeks, should have been six but I ran out of annual/sick leave so I went back to work and was fine really. Just was having trouble coming off hte pain killers honestly.
THey don't want to do the surgery. I don't blame them. For me I did a lot of research, I went in with published medical journals showing that the surgery is effective and saying it is a quality of life issue. I could no longer life this way. I was missing time with my family and work and I wanted it out.

I had my pineal gland cyst surgically removed at UPMC Presby Hospital in Pittsburgh, PA by a neursurgeon: Dr. Robert Friedlander. He was excellent. My cyst was 2.7 cm and was also causing a lot of intercranial pressure, dizziness and sleeping problems. But my surgery was not elective....my cyst was almost completely stopping the flow of the fluid in my brain from flowing and when that happens, you are done. The recovery was not that terrible, however I was off work for 6 weeks. I had the surgery back in December 2011, had my last MRI in March 2012 and everything was great. I am starting to experience a little dizziness and heaviness in the back of my head and I am heading back to the surgeon for another MRI and appointment this Friday just to see what is going on. Good Luck to you whatever you decide.

Thank you for your information. My daughters pain is increasing. Please keep us updated.

Sheri~Dayton Oh

YOU ARE NOT CRAZY!! Good for you -takin gyour health into your own hands. I would love to know where you live. I cannot find a surgeon here who thinks they should ever be removed. My 13 year old daughter has been suffering for 4 months. She can now hardly function. She has terrible headaches, nausea, vertigo, right eye pain, right ear pain, and right jaw pain. Not to mention she always as the "downward gaze". You wouldn't notice it about yourself, but others around you will. They will think you are "spaced out" for a couple of minutes or look as though you are deep in thought. My daughter has no idea she is doing it, but her sister and I have noticed.
You is your surgeon? I hope it is Dr. Shahinian. I keep hearing that he is the best. Plus he using the least invasive method developed today. PLEASE have someone post a note on her after your surgery. We ALL need to prove to our loved ones that this surgery is important to our health and well being.

still alive ? i HAVE A DAUGHTER WITH SAME PROBLEM

Hi, i just want to add my experience on this. Let me start at the beginning. July 1998 when i was living in Sydney i started to get headaches. I went to see a doctor here who said it was just tension or stress. I would lie down and the headache woul;d using subside. I went traveling in NZ beginning 1999 and i had 1 headache in all that time. So i put it down to the dusty working environment i was working in. After returning to the UK Feb 99 and starting work. I once again started to experience severe headaches. I went to doctors, Chinese docs, chiropractors and finally casualty one day. Where i insisted that someone refer me. I was then sent to an expert who also said it was down to tension etc. I had to insist that he send me for an MRI. Finally On the day of MRI they found a  cyst. I was then kept in and was operated on a week later. That was 99. I wasn't allowed to work for a couple of months. But to be honest i felt great after the op and had had no problems since. However recently i went for a scan on my nose for a polyp. They then discovered the cyst again. Originally they just cut it and drained it and burnt it back. So it looks like its grown back and is about 10mm. So I'll probably need an other op. But i haven't had headaches.

Hello Joy, wondering if you'd had any luck finding a neurosurgeon in Canada that takes this serious?

ycompanys   Oct 22, 2009

Neurologists may be very quick to tell you that you are fine with a pineal cyst and that it is not causing your symptoms.  But beware:  1) Doctors in general don't really understand what the pineal gland does; and 2) Some don't seem to understand the difference between symptomatic and asymptomatic pineal glands and tell their patients not to worry about pineal cysts. Some things to keep in mind, according to the medical literature: 1) The most common symptom is headaches, followed by vision problems, dizziness, and balance problems, and in some cases insomnia, nausea and cognitive deficits.  In fact, a study that showed an almost perfect correlation between migraines and pineal cysts.  More rare are emotional lability, fatigue, ringing of the ears, and numbness / tingling.  In extreme cases, pineal cysts can result in loss of consciousness and seizure disorder.  So please take this seriously, particularly if the cyst is causing intracranial pressure such as hydrocephalus. 2) Pineal cysts can be symptomatic if they are larger than 0.5 cm.  Problems occur when the cysts cause compression in the brain, or when they are associated with apoplexy or hydrocephalus. 3) Radiologists cannot easily distinguish between cysts and benign tumors, often leading to misdiagnosis. NOTE:  A benign tumor is not metastatic, not malignant.  It is extremely, extremely rare to get a malignant, metastatic tumor in the pineal gland, so please do not worry about this unless your radiologist/doctor has told you otherwise. 4) It is common that patients are told that the pineal cyst cannot be affecting them after a neurological test.  But note that some patients present no neurological symptoms in these tests, while still having the symptoms in 1) above. 5) If you are in the 18-34 age group, your cyst can grow, so you should get MRIs every 3-6 months.  If your doctor does not want to, get a new doctor. 5) If you have to get surgery, get the following one but only if you have compression or hydrocephalus and your symptoms are incapacitating:  Suboccipital craniotomt with infratentorial-supracerebellar approach and microsurgical resection of pineal cyst.  Contrary to what is stated above, this is NOT brain surgery.  They access your pineal region from beneath the brain, so they do not affect your brain at all.  It sounds like a scary procedure but is actually straightforward for a good brain neurosurgeon.  The surgeon essentially inserts a microscopic endoscope that magnifies the area by 50x and uses a navigation system to get him there.  It is minimally invasive.  The medical literature says that most patients whose pineal cysts are not too large (e.g., < 4.5 cm) become completely asymptomatic after surgery.  The surgery entails a 6-8 week recovery, and a small incision in the head and removal of skull bone, which grows back after surgery.  The biggest risk associated with surgery is infection, as with any other surgery. The most important thing is to get a doctor who takes your pineal cyst seriously.  It is a rare disorder, and few doctors understand it well.  So you will need to be persistent. Good luck.

I just want to say it's important to be a little leery of suggested surgeons and REALLY do your homework before thinking "said surgeon" will be a savior.  It's very easy to be swayed especially if you are going through hell and looking for solutions. But keep in mind, anyone can get on here and SAY they had surgery from a particular surgeon and that it was a terrific experience with a great outcome.  Even the doctor himself or a well paid PR team could have authored those posts. Remember surgeons make money by performing surgeries so it is in their personal best interests to recommend surgery.  I'm not saying this surgery isn't something that should be done, just approach all surgeons with a dose of skepticism and really check them out to make sure you are not dealing with someone who is unethical or whose primary motivation is to make money.  I had a good friend operated on by such a surgeon (different type of surgery) but it left my friend practically incapacitated for life--the surgeon later joked my friend's surgery helped pay for the sports car sitting outside his office.  One of the surgeons mentioned on this forum has his own clinic and a very professional looking website with only himself listed as the surgeon.  Having worked in the medical field this raises a little red flag for me.  I am by no means saying this surgeon is not a good surgeon or is unethical.  But just be aware that it is extremely expensive to run your own practice these days, so it tells me this person HAS to make a LOT of money and attract a lot of surgical patients.  My advice is to pay very little attention to glowing recommendations off the internet or on a physician's web site.   Check a surgeon's board certification and facility accreditation with the state (not through their site).   Check to see if they are a member of Fellow of the American College of Surgeons (ACS).  There are also some great tips recommended in a Reader's Digest article,  "50 Secrets your Surgeon Won't Tell You."  I'm not a big fan of the magazine and the title of the article is sensationalist, but having worked in the field, there are some excellent tips within the article.  For example, always find out when your surgeon is going on vacation AND which days of the week are his or her days off, then schedule your surgery 5 days prior to this, first thing in the morning.  You don't want to be one of the last people of the day on their surgery schedule and you don't want to have a post-surgery complication only to find your surgeon is off for two days.  Surgeons or people too, don't ever forget that.  Hope this is helpful.

I have one that is 1cm and want it removed as well i also suffer from headaches and they just kill me. If you think its what's best than do it.

I think you are doing the right thing. I personally have a pineal gland cyst on my brain and it is causing my vision to go black and I have headaches more that normal. I feel like I need to get it checked again. symptoms are seeming to get much worse over time. did you have the surgery? And how did it go? I am only 22 and am trying to figure out what steps I need to take in order to get these symptoms under control. I was just recently diagnosed with fibromyalgia I deal with pain every single day. I don't live the normal 22 year old life. I am pretty much a home body. I love the relaxing and being very low key. Its the way that I cope with having so much pain. any suggestions for me would absolutely help!!! im looking for answers...

My daughter is looking to have this done. Could you share more info privately?