Pineal Cyst Recap & Advice

Thanks for your story! I just got diagnosed with a pineal cysts so I am dealing this. I really appreciate how honest you are with your story. Thank you!

Thank you so much for sharing your story! Very eye opening on the post op care and making sure someone is with you. I have an apt with Dr Patel end of October as I have a cyst with terrible symptoms. I’m mostly bedridden and if I can get out of bed, I’m in a wheelchair. Thank you again for being so brave and sharing your story. Sending good vibes and positive thoughts your way that you get back to your old self soon. Hugs!

I got diagnosed with a 15mm pineal gland cyst and am waiting to see a neurologist soon. Upon researching on other people and their experiences with neurosurgeons and pineal cysts, I'm starting to get really worried that my symptoms are going to get dismissed as not caused by the cyst. Symptoms include brain fog/forgetfulness, depression, anxiety, pain behind eyes, vision disturbances and throbbing in left eye, migraine like headaches that last several days in a row, light sensitivity, difficulty falling asleep, difficulty waking up. So scary to know that the medical community is very dismissive about pineal cysts when they CAN be symptomatic :(

Thank you so much, I'm going through this now

Thank you for sharing your story. Hope you get well soon. Be strong.

Hi Evan, I cannot thank you enough for sharing this. I just found your YouTube channel through a comment you left on another video about pineal cyst surgery and I am SO glad that I did. I completely relate to how you felt with the pineal cyst before surgery, and I cannot believe the trauma you endured afterwards. I am 22 and was diagnosed with a 1.8 cm pineal cyst last month. I then saw a neurosurgeon who completely dismissed my symptoms and did not seem empathetic. Most days, the pressure headaches I have are severe enough that it’s hard to get out of bed. I am finishing up my last prereqs before grad school, but with the current state I’m in there’s no way I could go to school again full-time. It has been difficult taking only 5 credits with the pain, brain fog/cognitive issues, and other symptoms. The way doctors have responded so far has been discouraging to say the least. I also am considering Dr. Kim, but would prefer to have the less invasive approach done. I made an appointment with Dr. Patel, and as of now, I cannot get in until the end of March. I would really like to message you more about your experience and any additional advice you might have. My Instagram is jessicakmarie if it’s easier to talk on there. Thanks again and I truly hope you’re doing well!

I'm 20 and just found out about mine, never heard anyone explain exactly how I feel because its so hard so put it into words so THANK YOU!

Holy shit, I’m so sorry! I hope things are better now. I highly recommend the amen clinic! I had a tbi & they helped me tremendously. I know what it’s like to not feel normal. Good luck to you!!

I’m so happy I came across your videos. I’ve seen the comment before by someone else under your videos but seriously I have heard nobody speak exactly what I’m feeling like and really understand like how you explained you could relate to…and it’s awesome that you decided to share your cell phone car videos to YouTube because there’s not enough out there and too many of us struggling in silence begging for help and people treating us like we’re crazy or that we’re fine and it’s no big deal yada yada yada….but forced to carry on even if it’s the hardest thing we’ve ever had to do, and consecutively do at that, maybe for years, or decades actually (like my case) but I’d really like to talk with you more if you’re willing?

Thanks, Evan for sharing your story. God has still a purpose in your life that is why you are still alive up to this time. My 13-year-old son Sean was diagnosed of having a Pineal gland tumor (2.5 cm) last December 2021. Although a brain operation was performed on him called ETV(Endoscopic Third Ventriculostomy) which diverted the passage of water being blocked by the tumor, he still passed away last April 2, 2022, or barely 4 months after the first manifestation of the symptoms like vomiting, nausea, headache, double vision, loss of balance and coordination, etc. In our place here in the Philippines, we still don't have that kind of surgery that will remove the Pineal gland tumor. We learned that it was an aggressive type of tumor. I'm still grieving over my son's death but I'm comforted on the other hand knowing that he is now in heaven with Jesus, his Lord, and Savior.

My sister had the same surgery about 1 year and 8 months ago, she is still struggling to feel "normal." Thank you for sharing your experience and motivation - I can sense your resilience. I am hoping for your continued recovery...I just keep telling myself to be patient because everyone heals differently. We are on the constant search to try new healing modalities...difficult during COVID if it involves human practitioners

Hi Evan! Thanks for sharing 💗 Ive been dealing with a lot of anxiety about this… it helps to hear stories. Yes of course I am seeking all videos and advice about it before i make a choice at the moment. I had a TIA and have been having heart stuff… not sure if it’s related or not but deal with severe cycles that leave me in bed for days and lots of emotional overwhelm and bouts of depression on and off… definitely been doing research and finding a lot of the mood and cycle stuff could be related to the cyst… I go for an MRI Saturday to see how large and such. I have been hesitant at the idea of surgery… because I mean that’s my psychic connection and I don’t want to hurt that… but at the same time I am curious if I was to remove the cyst only if possible, which on a UT Health video he said was… that it may increase those abilities. But I do worry about side effects like you are talking about and not being better and being worse after… I’m really sorry that you are feeling that way. I hope that you find some relief. 💗 What kind of hallucinations do you have?

Hello Evan thank you for sharing your story I just got diagnosed with 8 x 10 mm pineal cyst three weeks ago I did see a neurologist doctor today actuallyactually and he prescribed me an anti-depressant pills. He also told me if I sleep well all the symptoms will go away 😌

Hi brother I’m having pain in my head like is someone pulling my hair wired pain and after mri scan they says I have pineal syst and is like 0,5 and doctor says it’s not from it but my question does that pain get worse when you upset or angry please if you can answer me my god bless you

I got diagnosed with a pineal cyst in 2016 but also pseudo tumor cerebri.. I had to have a shunt placed for excess fluid but they never did anything about the cyst and idk if it’s gone

I have a 12x15mm cyst, but don't get headaches, I just have a light pressure and have trouble sleeping as I don't feel tired at night just exhausted and feel only slightly better when I wake up. I also get brain fog all the time but this can be offset with exercise and vitamins.

I have been having a strange headache for the past 8 months it really only hurts when I jolt my head but it's been constant non stop for 8 months not a days break. so I had an MRI today and they found a 0.6cm penal gland cyst. My doctor says nothing to worry about. I'm confused tho, he says it's not a tumor that a cyst is different. Is this correct? And can they grow in size?

I found out I have one about 6 months ago. I have symptoms that comes and goes, the vertigo is the worst part for me. And the severe anxiety.

I, like many others I’m sure, have been researching pineal cysts. 2 weeks ago I ended up at the ER because my headaches have just gotten worse and worse. I feel like my vision is slowly getting worse. Generally just blurred the longer I try to focus. Needless to say, I left with a diagnosis of a sinus infection and an oh, btw you have a 12 mm pineal cyst. You should follow up and probably have an MRI. I have my follow up tomorrow with my primary physician and I just don’t even know where to start. I feel like this will all be downplayed from what I have heard and read. Any advice for my appointment?

Mine is 11mm currently. I have an appointment with Dr. Patel on May 6th. Hopefully the surgery goes down this year.