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pineal cyst

I found out last year that I have had pineal cyst the size of 4mm for over 5 years, it showed up on all my mri’s and not one doctor told me about it. so I started seeing a neurosurgeon. He repeated the mri, in november of 2016, well I recently started having some very bad pains in my head, along with nausea, unstable gate, a lot pressure to my ears and the back of my head, I have never suffered from any kind of headaches. I went to the er, the doc said I had migraines. I explained to her I never had them, so I went to the my family physician after 8 straight days of the pain, and all the other things going on, he did another mri, my cyst has trippled its size in just 4 months, and I have fluid build up on the left side of my brain. they say lay in a dark room with no noise, and put ice packs on your head, and take the medicine they gave me. well the medicine made it ten times worse. I have to have the lights on, I can not lay down, it makes it worse, I cant look down, I have to sit straight up and stare at the wall, and i also have clear fluid just run out my nose. I do not have any sinus infection at all. I have nothing to take that makes them better. I have constant pressure in my head. I have tried everything to stop them. I know when they are coming too, most of the time, other times they just pop up, either in my sleep, or if I cough, or even if I’m talking. they never start when I’m stressed. my life has been pure hell for the last month in a half, with no relief. my neurosurgeon told me, that it’s unlikely to get any bigger, but if it does he will remove it, and that is a little scary, beings how they do it. it stops the crippling pain it does to me, I will be glad. trust me there are major symptoms you get with this. I hope this doctor can do something. I cant live like this.

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  • adnerio
    2 years ago

    I am having the same issue with a 7.5 mm by 7.5 mm by 6 mm my symptoms started December and it worse than everything you can think of constant pressure headaches constant ringing and buzzing in the head constant nausea I get confused my personality has not changed it’s difficult for me to work I get frustrated and angry easily my hands will shake for no reason there are so so many more symptoms and they keep building oh and the worst one is I have ideal blood pressure 90 over 60 to 110 over 70 and since this started in December it runs 138 over 96 but it jumps to 158 / 138 or 165 / 128 randomly throughout the day so they did stress test with injection hardest perfect I have the heart of a thirty-year-old I am at wit’s end I have seen every specialist possible my neuro-ophthalmologist found the papilledema spinal fluid behind my eyes resulting in too much spinal fluid on the brain did the MRI and that’s when the cyst or pineocytomas found I went to see the neurosurgeon and he immediately looks and says oh it’s a cyst this cannot be causing your problems and I know it’s very difficult to tell if it is a cyst or a tumor by looking at it either way I’m only concerned with relieving my symptoms I had a spinal tap done by my other doctor C spine specialist which the neurosurgeon said may help and I did get immediate relief for about 2 weeks the neurosurgeon said it would come back and it did he said at that time he could do another one but he could install a lumbar shunt I was ecstatic but he said he would not remove the cyst or tumor however now that my symptoms are coming back when I call to try to get an appointment they have put me off and now have told me he is not available until mid August at the earliest they know my situation so I found another great neurologist on my insurance plan talk to them today emailed my primary care for a referral I hope to have it there to the new neurosurgeon office by next week and an appointment by end of next week or the week after this doctor’s office told me once they receive it they will work me in and not to worry they will take care of me so please wish me luck and I wish all of you luck as well I’m glad to see I’m not the only one sometimes you feel like you’re crazy but I’m sorry that we all go through this much love Anita I am using Speech-to-Text because my eyesight the double vision blurriness and white streaks have gotten terrible so please excuse any punctuation spelling or grammar errors

  • DonnaFA moderator
    2 years ago

    Hi Adnerio! Thanks so much for sharing your story. It’s so incredibly frustrating when our doctor’s don’t take the time to really listen to and try to disseminate our symptoms. I’m happy to hear that you were able to connect with another neurologist, and I’m wishing you well for your consult – it’s awesome that they are going to work you in, it sounds like a good sign! Please stay in touch and let us know how things work out. -Warmly, Donna ( team)

  • DonnaFA moderator
    2 years ago

    Hi pwchild7, I’m so sorry to hear that you are facing so many challenges. Please know that you’re not alone. We’re here to share support and share this walk with you.

    There are a couple of articles you may be interested in reading which speak to pineal cysts. I also wanted to extend an invitation to join the conversation on our Facebook page, if you haven’t already visited.

    Thanks for being part of the community and sharing your story. Please stay in touch and let us know how you are. -All Best, Donna ( team)

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