Pineal Gland Cyst and brain surgery for headaches

Guest over a year ago

Barb,
Was your surgery a craniotomy or less invasive? My daughter is looking for a surgeon who does it less invasively.

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Guest over a year ago

I had a very large pineal cyst that measured 2.6 cm x 1.8 cm x 2.4 cm. I was 51 at the time of my surgery. I did have the crainectomy to remove the large pineal cyst. My symptoms were pressure headaches that bothered me while trying to sleep. Had severe dizziness, blurred vision and trouble looking upward. It has been almost 3 years since my surgery and I never get headaches! I do have some trouble with my head feeling heavy and my neck being very weak. I cannot run or jump very much or i get dizzy, probably because i had a piece of my skull removed and not replaced. My surgeon highly suggested I have this large cyst removed because of the risk that this may interfere with the flow of the brain fluid that could be life threatening. I have had dizzy spells all my life but never dealt with headaches until about a month or two before I had my first MRI to diagnosis this pineal cyst.

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Guest over a year ago

Hello - my mom (she's 65) has a pineal cyst , so I'm doing the research for her to figure out all the options. Her doctor wants to wait and see what happens. She's had some of the symptoms for a looong time (I mean years and years, such as periodic headaches, blurred vision, deterioration in her vision), but the cyst was diagnosed only recently. If you could please respond to this post or email me at _[removed]_, it would be greatly appreciated. Could you please share the details of your surgery, i.e. what kind you had/ specific technique, as well as the doctor/ location?

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Guest over a year ago

My son just found out that he has a pineal cyst and it is a12.He stays so sick ,dizzy,headaches,vision trouble.he says he is so miserable and cant live like this.He is thinking also on the surgery.I am just so worried about brain surgery.

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Guest over a year ago

Hi Are you able to tell me where in the UK you were operated on?

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Guest over a year ago

I don't think your crazy. I'm 15 and I have a 14mm pineal cyst. I have tons of pain everyday and can't deal with it. Dr. Kim down in TX is removing my cyst on February 4, 2015. My friends think that I'm crazy. And yes I'm very scared, but as you said I can't live with this anymore, I've felt this way for two years but the pain is getting aggressively worse.

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Guest over a year ago

My nephew has a cyst which is growing. He has frequent seizures. one seizure left him speechless for a few minutes and his feet and legs wouldn't work for the same time.

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lunareclipse over a year ago

I'm having an endoscopic "occopital suboccipital craniotomy" to remove my 17mm pineal cyst in 2 weeks. Dr. Deshmukh will do the surgery at St. Vincent in Portland.

The road to get here has been so long, with my headaches and vision problems worsening over the past year and blamed by various doctors on migraines, infections, a possible tooth abcess (teeth are fine), "dehydration", and so on.

I have no life anymore, I just care for my son and sleep and deal with the pain and nausea and bizarre vision problems. Thank goodness I have a wonderful job and they're holding my position for me until I'm ready to return...with luck I will 2 months from now!

Good luck to everyone facing a similar problem.

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Guest over a year ago

Hi, I have pineal cyst surgery scheduled for September 2015 with Dr. Kim. Would love to hear more of your experience.

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Guest over a year ago

What was your down time from the surgery? And would you recommend it to a newly diagnosed patient? My son is 20 yo and has had symptoms only about 8 weeks. He feels the pressure sensation in the head, and lightheaded (as if he stood up too fast) and occasionally like it is difficult to focus (no double vision; just like it takes work to focus). He is a fireman, newly hired, and concerned about his hireability and performance as a fireman IF indeed the symptoms are related to the cyst. The MRI showed 1.4 cm "incidental" pineal cyst NOT effacing other structures. No hydrocephalus. He has no headaches. It is so difficult to tell if his symptoms are caused by the cyst or not, and if he should proceed or just monitor it. Thanks for your input. He's also a surfer, so the waves breaking on the back of the head is a regular occurrence!

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Guest over a year ago

Can you please tell me who your doctor in Ireland is for pineal cyst treatment. I need help urgently,

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Guest over a year ago

Do you have medical literature links that you can share. My 18 year has 1.3 cm pineal cyst and the Neurosurgeon says it is not what is causing her headaches and blurred vision.

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Guest over a year ago

How are you now? My daughter 17 also has a 14mm pineal cyst we are awaiting an appointment with Dr. Kim. Thanks for any help or information

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Guest over a year ago

My daughter had surgery with Dr Kim on 2/2/16. Please let me know know how you are doing. Daughter is not doing well and we are not sure of next steps.

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Guest over a year ago

Hi what happened with you? Mine is 2cm so im pretty large too? Did you ever have treatment?

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