Pineal Cyst: What symptoms led to your diagnosis?

I know it has been a while since someone has commented, but can someone please give me the name of the doctor in Texas who deals with these cysts. I was just diagnosed with a 1.7 cm pineal region cyst and a Chiari malformation. I have about 16 symptoms and it is starting to affect my day to day life. I need to see someone who knows what they're doing.

Hi Everyone,

I wanted to share my story. I currently and diagnosed with a pineal cyst that is 16mm. I was written off by ever neurologist that I have seen that my symptoms and migraines couldn’t be from my cyst. After 26yrs of being in constant pain I was finally referred to Mayo. The neurologist I saw started to write off the cyst like everyone else. I pushed and they did a new MRI scan everything except my cyst is normal. My previous scan the cyst was 14mm so it has grown. I now have a consultation on Monday with a neurosurgeon at Mayo. I had to fight and advocate for myself and hoping this surgeon will agree to remove the cyst.

This comment is really old, but those symptoms from Patel match my son's. His cyst is 1 cm.

The latest info on Mayo site says Patel has since identified a constellation of symptoms — headaches, insomnia, episodic cognitive deficits and, rarely, numbness in limbs and problems with balance.
No mention of tinnitus. The pineal cyst was found. Incidentally on a scan. I had about seven years ago I think after a car accident my doctor told me they are usually not discovered, except in a deceased persons brain because theres no symtoms . I have gotten consistently worse tinnitus in the last few years to the point that I am isolating a lot and life is passing me by . lately consistently at least level 8. The surgeon Patel on the mayo say makes no mention of resolution of tinnitus after he dissects the gland, which is also known as the seat of the soul.

I am actually very interested in hearing more of the information you have on this myself. You seem very enlightened on the exact breakdown of when to test for what and how to get the best results. I am dealing with a very uneasy thought of possibly having some type of pituitary tumor just not sure exactly what kinds yet. However I am having several weird symptoms that caused me to be tested such as lactation while my youngest child is 6 and I've not breast fed since she was 2 months old. Vision trouble as I see double of most everything And can barely read anything with my contacts and glasses both on. I have majorly lost weight in the past year. Lost any and All motivation to even get out of bed. I hurt all the time and am very weak and fatigued a lot. And don't get me started on the headaches I get every other day. I'm tired of feeling this way all the time and just want to feel like myself again and not this negative Nancy who's calling apart at the seams anymore ya know.

google: Life Extension hormone panels female (or male). What you want is hormone tests especially for the ovaries, thyroid, and pituitary. If you want I can check with my husband for the pituitary hormones. Most doctors will balk at taking the pituitary hormones because they think they/doctors are the right hand of God and know everything. My husband goes to the pituitary clinic at Strong Hospital, Rochester NY. He see's an endocrinologist and neurologist on the same appointment and he likes them a lot. Make sure if you are female and still having a cycle that the female hormone tests are on day 17 - 21 of your cycle. This means day 1 starts as the first day of the menses. I live in Buffalo, NY. If you want I can give you a phone number to call me.

@moecavicchi, as a parent, it must be so hard to see your son suffer with headaches and other symptoms that affect his quality of life.

I'm tagging a few members who have experience with pineal cysts like @bucsfan22 @sungaltoo @jenndustin @golfguy2282 @elsk @susanaz, some of who also manage headaches and other symptoms.

What has the neurologist suggested might be the cause of the headaches?

Wondering if anyone on this thread has had any success with figuring all this out. My son is 40 and has a 1 cm pineal cyst and similar symptoms to what has been reported here. He had a craniotomy for an enlarging arachnoid cyst in his cerebellum 10 years ago. I assumed his current symptoms were residual damage from that surgery. Hee had high pressure headaches for over a year before the doctor finally ordered an mri and saw the cyst had grown and was blocking the flow of cerebral spinal fluid. They never mentioned the pineal cyst which was much smaller at 1 cm. The surgery for the arachnoid cyst changed the headaches from unrelenting pressure to feeling ok when lying down in a quiet environment. He can be up for an hour or so before his head starts to hurt and he has to lie down and it will slowly diminish. He has vertigo and cant drive and sound sensitivity. Compared to before this is better because he can get relief by lying down. He doesnt complain but has no life. I asked the neurologist if it could be the pineal cyst and he does not think so. I wonder if this surgery could be done endoscopically rather than a craniotomy? I dont think he would want to go through a craniotomy again. He lost a bit of blood and woke up with meningitis. He suffered with that for 7 days till they gave him prednisone. No easy answers I guess..