I was diagnosed w / this about 5 or6 yrs ago thru MRI. Went to my ent dr because of recurrent sinus infections and persistent dizziness. He put me thru many different tests, and attributed dizziness to hx of cervical spine injuries, jaw trauma, tmj, w/ incidental finding of pineal gland benign tumor. Each yr I have MRI to evaluate size of tumor. Most drs say only if it increases in size and causes hydrocephalus do I have to worry. However, I am exhausted al the time, my slep patterns are non existent, I can never know when I will have to go to sleep, and have nights where I cannot go to sleep at all, keep trying and end up getting up over and over, other times I go to sleep for 12 to 20hrs at a time. I have chronic pain and am on a fentanyl patch, which I had no idea was an addictive substance, but I still have disturbed sleep. The pain that began as spine injury has developed into what feels like a fibromyalgia. I can not function well anymore and am applying for disability, as I can not work normal hrs, and cannot predict from day to day when I will sleep, can not commit to certain hrs, and can not concentrate. I have a highIQ, and have always been proud of my performance. My employers always spoke of how valuable I was to them. But in these recent years, I am unhappy and embarrassed
And have been let go from jobs. This is so depressing, and need to hear from others who have been diagnosed with this condition
And have been let go from jobs. This is so depressing, and need to hear from others who have been diagnosed with this condition
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abbygirl; how large was your cyst; my is the last time I checked and I'm due for another one is 9.7 mm x7.6mm x 7.1 and it seems to be growing every 6 to 7 months;
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my cyst is 9.7mm x 7.6mm x 7.1 mm; I suffer headaches, eye pain balance problems neck pain and it grew in the last time I went 7 months ago it grew and I'm 46 years old and the research says it should of stopped growing my now; I'm going to massachusetts in july and go to try to meet with neurologist at nyu hospital and see what they say; I always feel fatigued and tired; and it is no fun.
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doctors dont want to operate because it is dangerous and they dont want to be sued. keep searching for a dcotor who operates. thats my simple advice.
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I spend some time to collect pineal cyst information and put them together in my blog. My headache is still there everyday with balance problem. I wish the info I collected can help those who suffer for the same problem. Please visit kennyjou2003 dot pixnet dot net/blog
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I was diagnosed with pineal gland cyst about a month ago. My doctor and neurospecialist insist that the cyst isn't big enough to be causing symptoms. Yet I have experienced many similar symptoms as what other have posted on here and have experienced these for the last 15 yrs. or so (I'm 25). I've complained ever since I was little kid about my head feeling funny and all kinds of strange symptoms that didn't seem to be at all related until I was diagnosed with the cyst. Now to me it all makes sense. But the doctors keep telling me the cyst is not an issue. It's too much of a coincidence that we all complain of similar symptoms. Too many doctors are not taking this seriously enough. We as cyst victims need to band together and get these doctors to open their eyes. They have yet to fully understand cysts and how and why they develope, so why do they think they are the last authority on it? My doctor told me "the patient is best person to make a diagnoses because the patient knows their own body". So why then will she not listen to me? They want to wait and do another MRI in a yr. She says it will be a waste of time and money to pursue this any further. So am I just supposed to keep living this way? Day after day?
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Hi Sean. My son has a pineal cyst/tumor . Experiences deadly headaches. The way that hospital doctor treated you is absolutely dispicable. My son was treated similarly. I lodged a complaint. You are not alone, there are people suffering with this and not getting help. It is inhumaine and should not be allowed. The doctors should be ashamed of themselves. I don't think anyone would make these horrible symptoms up. Stay strong and never give up.
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What type of speech issues and how big is your cyst? How long have you known about it?
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I am so happy for u that u found a wonderful doctor n ur doing so well. I too was just diagnosed with a pineal cyst n would really appreciate it if u could share with me the neurologist who did ur surgery at Nyu. Thank u wishing u happiness n good health Estelle
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Hi
My name is Belinda from Norway. I am 45 years and I have a pineal cyst size 2,7 cm X 1.7 cm, and I have been feeling a lot more dizzy lately. I am going to have a MR-scan in September.
Can you tell me about your operation, do you have any symptoms/side-effects after the op? How dangerous is it?
Can you please tell me the name of your doctor who performed the operation. I dont get much information from my doctors here in Norway and I am willing to travel so I know that I get the right treatment.
All the best to you and I am awaiting your answer.
Belinda Midtskog
Fredrikstad, Norway
My name is Belinda from Norway. I am 45 years and I have a pineal cyst size 2,7 cm X 1.7 cm, and I have been feeling a lot more dizzy lately. I am going to have a MR-scan in September.
Can you tell me about your operation, do you have any symptoms/side-effects after the op? How dangerous is it?
Can you please tell me the name of your doctor who performed the operation. I dont get much information from my doctors here in Norway and I am willing to travel so I know that I get the right treatment.
All the best to you and I am awaiting your answer.
Belinda Midtskog
Fredrikstad, Norway
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I was just diagnosed with a pineal cyst and would love to know the name of your dr at NYU and recommendations of other doctors (endocrinologist?) who may have a view on how else to treat. It seems like low melatonin production by the pineal gland is related.
Thanks so much.
Thanks so much.
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The innovation technology - Cyberknife (more advanced gamma ray) may be a good method to treat pineal cyst. I convinced a doctor to use Cyberknife to treat my cyst. It should be the safest way for brain tumor surgery.
Find Cyberknife doctors near you and convince the doctor.
Find Cyberknife doctors near you and convince the doctor.
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Hi . My daughter is the same age , has a 7.5mm pineal cyst and an abnormal pituitary gland was picked up on her MRI scan. I would like to keep in touch and share information with you. I feel so helpless. I am in Australia and getting nowhere so far......her symptoms are constant throbbing headache on movement, constant rubber and round the head type pain and frequent (4-5times a day) intense head pain in various spots.
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Hi! I'm posting in regarding to my boyfriend, Colton. I've read him this post and many others similar to this and it's the first time I've heard him agree to what I'm reading with "I have that, that, that, and that. But I also have this." He's been dealing with a constant head ache that never leaves for the past 2 and a half years. He wakes up with one and goes to sleep with one and often times is found crying because it hurts so bad. He's been diagnosed with a pineal cyst and he says that he has vertigo.. However, the neurologist said that the cyst is likely not causing the problem. I tend to believe otherwise because he's tried everything from sleeping patterns, diets, heart doctors, everything. I'm not even kidding.. I'm almost positive it's the cyst that's causing them and I was wondering if I could catch your email to discuss more of it? What would the surgery be like for him and is it worth it? (well... I think obviously so..) He's afraid to be put on medication and doesn't want to do surgery but.. if it helps, it helps and even if the last option we want I'd still like to know what this option would be like for him.
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