If a patient is presenting with headaches, balance issues, ringing in ears etc. symptoms and has no MRI findings other than a pineal gland cyst please at least communicate to the patient that they have the cyst. Many patients with reactive pineal gland cysts have either not be informed of their cysts or have been told that it is not the cause with out even an investigation. The neurological medical community really needs to improve how this is being handled. There are too many reports of patients suffering long term needlessly.
I had an mri of my right internal jugular vein being blocked and they didn't tell me about it. And they told me it's not on the MRI. And I'm like...so this image of the internal jugular vein that's twice the size of the other one and the color white - that doesn't exist? I'm not looking at it right? I feel like they must go to school for like two months for this :p
I totally agree with this. My neurologist didn't even tell me about the cyst, I read it on the MRI report later on and got pretty scared and confused. It had to be property communicated, and he knew I would take the MRI report with me
I absolutely agree with you 100%. I have a 1.6 cm pineal gland cystic lesion that is causing mass effect on my tectal plate and I am being told it is not the cause of my Numerous neurological symptoms, however they have ran every test under the sun on me and it has all came back normal. the ONLY thing that has been found to explain the symptoms is the pineal cyst but I am still being told it was an incidental finding and is not the cause of my symptoms and they cant find anything wrong with me other than the cyst but it cant be the cyst causing symptoms according to them so they treat me like I'm lying about my symptoms and dismiss me. I dont understand how they can believe that these do not cause symptoms. to me it is only common sense that if there is something growing in the brain or any part of the body for that matter that is not supposed to be there and is pressing on things it shouldnt press on then it will cause symptoms. It just blows my mind that most medical professionals will not acknowledge that these cause symptoms and keep dismissing them. I am living in complete hell with all the symptoms that I am having to deal with and I cant get anyone to help me.
@@Janice-wq3yb I'm in the same position omg sounds like my story. Nobody believes you not even family while u have headaches, eye pains and vision worsening faster than usual (I have astigmatism so it's difficult to prove whether my vision is getting bad because of the cyst or my astigmatism but couldn't my astigmatism caused by the cyst in the first place??) Nobody knows then u read data of patients who had it removed and almost all of them got rid of their symptoms. It can be done endoscopycally, it's pretty safe although it's a delicate area.
So you explain she has dehabilitating symptoms, the cyst is there presenting and your saying it’s not the cause?!! What is??!! I bet if you removed the cyst, her symptoms would disappear like countless others have had to fight to have done, and you would still deny it’s causing the problem. We see you have a broken arm, but this can’t be the cause of your pain. This just makes me sick same as all the other pineal gland region cyst sufferers that get told it’s incidental finding, well if she is having symptoms and no other cause - maybe it’s just that - the cause!!
After the operation to overcome a pineal cyst a video on TH-cam explained a process of GROUNDING which is proving very beneficial in reducing the symptoms of the operation
My wife has all the same symptoms, it’s completely debilitating & it’s been getting worse, she also has a pineal cyst The worst thing is we only just found this out & the MRI picked it up nearly 2 years ago & we were never told at the time
@@simonshakespeare82I was diagnosed with my cyst two years ago and my symptoms are getting so much worse. Im forgetting how to do surgeries I’ve done hundreds of times. I was told the same time “the chst isnt causing the symptoms” then how come a majority of patients with these cysts report the sane symptoms? I have my appointment with Mayo Clinic tomorrow with their neuro surgeon. I won’t stop until I find someone to take this thing out.
Interestingly low clival axial angle on this patient and retroflexed odontoid. Just as pineal cysts have their controversy in patients with unexplained symptoms, so does Craniocerivcal instability.
Thank you for this information that CXA potentially matters, it's very helpful! 🙏 I have a 1.2cm cyst found recently, however, prior to this find I pondered craniocervical instability (as i have a ton of neck issues from an old injury). I suspect the doc sent me for MRI as some symptoms mimic demyelination. Thankfully it's not MS, but now, I'm more confussed as my cervical issues highlighted from the CT scans are from C3-C7, and not higher where I suspected they were causing the neurological issues (head pressure/fullness, visual jumping, vertigo, ear fullness, neuropathy inc head parathessia, buzzing feet and legs, and hemifasial spasm). My MRI finding report mentions nothing about clival axial angle (CXA) which may, as you say, highlight craniocervical instability issues. I'm reluctant to rule this out yet as potentially the cause of some of my symptoms.
12 years of pain suffering loss of career having kids given a month to live in 2015 then discharge in 2018 with a guaranteed it would not grow anymore, by this point it was already 2.25cm. In 2020 things got a lot worse was rushed in for another MRI and was brushed off again even though it was now 3cm. The NHS in the UK are shocking and have honestly cost me so much of my life. I went private in June 2022 andnon the 2 August 2022 I had it extracted and I have 100% got my health back. So now I have a fight in me and I am now looking into suing them. Things have to change to many suffer unnecessarily
Angel Shannon similar experiences in my life made it difficult to function as a human being until I passed out while operating a school bus full of high school students. The process involved ten other cars and the Hospital the police took me to were unable to find anything wrong with me so a personal visit to a General Practitioner referred me to a neuro surgeon who rushed me in for an operation to open another channel in my brain for fluid to resume flowing.Hope your legal action is going well.
@@glenncooper4379 Have only just started the hunt for someone to fight my case and all I keep getting told is its to big for them to deal with as the NHS is huge and a conglomerate to fight. So not sure where to go from hear. I prey you have made a full recovery and your life is back on track. Thank you for your message in response 💜💙
It blows my mind that medical professionals still believe these cysts don't cause symptoms when so many of us have them and have nearly the same symptoms and when there have been those like yourself who have had surgery and are now symptom free. I just don't know how they can justify themselves or how they can sleep at night dismissing people who are so sick
These cysts are often symptomatic and there are thousands of people with unexplainable neurological symptoms and this type of cyst is consistently ignored in the medical field because y’all were taught to discount symptoms. Dr.Patel at MUSC studies these for a living and has proven throughout his studies that indeed they are symptomatic and size does not matter. He believes it’s the fluid in the cyst causing the symptoms. So how about instead of disregarding patients concerns and treating them like they are a joke or crazy.. we actually start caring what they are going through and believe them when they say they are having symptoms that match a repeatable pattern that is directly correlated with these type cysts/tumors. I’m one of those patients who have been jerked around by the medical community and my MRI report totally left out the cyst when I had 2 CT’s to confirm it was there since my neurologist and MRI radiologist failed to acknowledge it. Lets start using our brains. If a cyst is 5mm or bigger then it’s basically encapsulating the entire gland… now how can we tell someone that this is not putting pressure on surrounding structures beats me and then to think ohh these are fluid filled cysts (some are) and we really have bo clue if they are puss filled or saturated with toxins.. who knows what and yet we definitively say… they are not symptomatic unless they are basically 2 cm in size which by that point a patient is in severe agony let alone traumatized with how crap of a life they have and their doctors could give a squat about their well being all because in med school they were taught to ignore those patients. There needs to be updated research on this asap because there are thousands of people suffering tremendously and the medical establishment is failing us!!! 🤬 get a grip people this is legal torture.
I have a 8mm Benine Mass on MY PINEAL GLAND... I also have been diagnosed with ENCEPHALITUS and High Functioning Autism... I have been dealing with this daily hell for 6 years now and am just now seeing on MY own ( No help from any medical prifesional ) that this Cyst or Tumor may be Responsible for MY ENCEPHALITUS and there for hopefully all of MY internal Struglles...
I'm going through this now. They get mad b I research a lot on the internet. My cyst has grown in the last 2 months (comparing 2 mri reports with written measurements. Still the neurosurgeons tell me the cyst can't possible be causing my symptoms
@@pistoffpussycat5778 i dont have either really, I did pass out once a few months ago. I will say it is affecting my sleep and alertness quite a bit. I have an appointment with a hospital in Southampton UK for third MRI scan. They have not told me what it is yet. I hope we both are okay sending prayers
EVERYONE!!! I was diagnosed with a pineal cyst two years ago and constantly brushed off. I made an appointment with Mayo Clinic, they booked me an oncology appointment, a neurosurgery appointment and presented my case to the tumor board. Mayo clinic has taken me seriously every time I’ve been over there for my migraines and my pain. Please go see them and book an appointment with a SURGEON not a clinic doctor!!!
I am absolutely incapacitated for 1 year. Dizzy, blurry vision, balance problems, headaches, ringing in ears... etc.. my MRIs show pineal cyct, midline posterior arachnoid cyst, syringomila at C6, partially empty sella. The doctors tell me none of these things are causing any of my symptoms and they give me pills and send me away to suffer and die. Most of the doctors won't even view my MRIs for themselves. I'm desperate. Please help me
Mine was 16mm 5 years ago. Idk what it is now, no doctor will listen to me and I haven’t had another MRI to compare. I have a ton of debilitating, scary symptoms and my doctor told me, when I brought the MRI result to my appt, that the cyst is tiny and of no value.
Dr Patel in South Carolina is the top surgeon for pineal cysts. unfortunately Drs and radiologist don't know much about the side effects pineal cysts. They usually just gaslight patients and send them off with anxiety meds.
@@mcovarrubias7372 I had surgery with him in October! My headaches are greatly reduced in frequency. I had stroke after the surgery- which is a risk with this type of operation but his team took care of me and I’m happy with the surgery.
I’m having this cyst now. It’s affecting my vision, my ability to walk and causing other symptoms in my body. Hopefully I can get this treated soon. They found it in the MRI :/
You didn't mention what looks like a low CXA, indicative of possible craniocervical instability, which could definitely explain the patient's symptoms. I'm always a little bit amazed at how underemphasized biomechanical/muskuloskeletal issues are in radiological training compared to other lesions in causing neuropathology.
This is so true. I had my cyst removed with Dr. Patel @ MUSC. At my consultation he so diagnosed me with CCI- he said symptoms between CCI & cysts can be hard to separate. The cyst removal did relieve a significant amount of my headaches, but my neurological deficits still remain because of the CCI.
I’m sorry but this is not true. To say it’s been found “incidentally” says to me you were looking for something else causing her symptoms but ran across this growing cyst in the brain. You found it because she was getting a brain MRI for her symptoms so that’s not incidental. I also have these symptoms with a 1.2 cm cyst. How on earth has the medical field not learned that there is a lesion growing in the brain that is causing similar symptoms among many patients is beyond me. Too many have had it removed and got their life back. I will be one of them April 29th. This is misleading and will continue to be behind so many in the medical field misinformed which is causing unnecessary suffering in patients. This should be taken down so other radiologists and doctors won’t be misinformed.
On December 17, of 2015 I took an MRI because I had a lot of headaches. My primary Dr decided to ordered an MRI to see what caused my headaches. They found an 2.4 tumor like a Schwannoma or mengioma. They also found an 6mm pineal cyst. The tumor was removed on October 2016, after that a got a pv shunt. Sometimes I get dizzy, my ear is ringing all the time and it's so annoying 😢 I don't know if the noise is caused by the tumor, or the cyst... 😢
They have found 1 in my brain. I had an epileptic seizure and thats why I got an MRI. Dont know if anyone else has gotten seizures from it? Very scared it may be a tumor I will hear it in the next weeks. Im 23....
If a patient is presenting with headaches, balance issues, ringing in ears etc. symptoms and has no MRI findings other than a pineal gland cyst please at least communicate to the patient that they have the cyst. Many patients with reactive pineal gland cysts have either not be informed of their cysts or have been told that it is not the cause with out even an investigation. The neurological medical community really needs to improve how this is being handled. There are too many reports of patients suffering long term needlessly.
I had an mri of my right internal jugular vein being blocked and they didn't tell me about it. And they told me it's not on the MRI. And I'm like...so this image of the internal jugular vein that's twice the size of the other one and the color white - that doesn't exist? I'm not looking at it right? I feel like they must go to school for like two months for this :p
I totally agree with this. My neurologist didn't even tell me about the cyst, I read it on the MRI report later on and got pretty scared and confused. It had to be property communicated, and he knew I would take the MRI report with me
I had a doctor told me oh it's nothing you'll be fine, how? When I have headaches, stomach issues, vision problems, and mental issues!!!!!???? Smh
I absolutely agree with you 100%. I have a 1.6 cm pineal gland cystic lesion that is causing mass effect on my tectal plate and I am being told it is not the cause of my Numerous neurological symptoms, however they have ran every test under the sun on me and it has all came back normal. the ONLY thing that has been found to explain the symptoms is the pineal cyst but I am still being told it was an incidental finding and is not the cause of my symptoms and they cant find anything wrong with me other than the cyst but it cant be the cyst causing symptoms according to them so they treat me like I'm lying about my symptoms and dismiss me. I dont understand how they can believe that these do not cause symptoms. to me it is only common sense that if there is something growing in the brain or any part of the body for that matter that is not supposed to be there and is pressing on things it shouldnt press on then it will cause symptoms. It just blows my mind that most medical professionals will not acknowledge that these cause symptoms and keep dismissing them. I am living in complete hell with all the symptoms that I am having to deal with and I cant get anyone to help me.
@@Janice-wq3yb I'm in the same position omg sounds like my story. Nobody believes you not even family while u have headaches, eye pains and vision worsening faster than usual (I have astigmatism so it's difficult to prove whether my vision is getting bad because of the cyst or my astigmatism but couldn't my astigmatism caused by the cyst in the first place??) Nobody knows then u read data of patients who had it removed and almost all of them got rid of their symptoms. It can be done endoscopycally, it's pretty safe although it's a delicate area.
So you explain she has dehabilitating symptoms, the cyst is there presenting and your saying it’s not the cause?!! What is??!! I bet if you removed the cyst, her symptoms would disappear like countless others have had to fight to have done, and you would still deny it’s causing the problem. We see you have a broken arm, but this can’t be the cause of your pain. This just makes me sick same as all the other pineal gland region cyst sufferers that get told it’s incidental finding, well if she is having symptoms and no other cause - maybe it’s just that - the cause!!
After the operation to overcome a pineal cyst a video on TH-cam explained a process of GROUNDING which is proving very beneficial in reducing the symptoms of the operation
@@glenncooper4379 Sounds like some anti-science nutter conspiracy to me, considering your other comments are "do you use bluetooth?!".
My wife has all the same symptoms, it’s completely debilitating & it’s been getting worse, she also has a pineal cyst
The worst thing is we only just found this out & the MRI picked it up nearly 2 years ago & we were never told at the time
@@simonshakespeare82I was diagnosed with my cyst two years ago and my symptoms are getting so much worse. Im forgetting how to do surgeries I’ve done hundreds of times. I was told the same time “the chst isnt causing the symptoms” then how come a majority of patients with these cysts report the sane symptoms? I have my appointment with Mayo Clinic tomorrow with their neuro surgeon. I won’t stop until I find someone to take this thing out.
@@creepypastashinigamigood luck 🍀
Hello, I also have a pineal cyst 6mm. I have tremor of the hands, left hand more severe. Could this be the reason?
Interestingly low clival axial angle on this patient and retroflexed odontoid. Just as pineal cysts have their controversy in patients with unexplained symptoms, so does Craniocerivcal instability.
Thank you for this information that CXA potentially matters, it's very helpful! 🙏
I have a 1.2cm cyst found recently, however, prior to this find I pondered craniocervical instability (as i have a ton of neck issues from an old injury).
I suspect the doc sent me for MRI as some symptoms mimic demyelination. Thankfully it's not MS, but now, I'm more confussed as my cervical issues highlighted from the CT scans are from C3-C7, and not higher where I suspected they were causing the neurological issues (head pressure/fullness, visual jumping, vertigo, ear fullness, neuropathy inc head parathessia, buzzing feet and legs, and hemifasial spasm).
My MRI finding report mentions nothing about clival axial angle (CXA) which may, as you say, highlight craniocervical instability issues.
I'm reluctant to rule this out yet as potentially the cause of some of my symptoms.
Is 18 mm a big one?
Yes
Yes
Is a 4.6mm big?
@@seirrawinkler6915 over 1cm is considered large as this video describes in 0.54
@@pistoffpussycat5778is 10x 6mm big?
12 years of pain suffering loss of career having kids given a month to live in 2015 then discharge in 2018 with a guaranteed it would not grow anymore, by this point it was already 2.25cm. In 2020 things got a lot worse was rushed in for another MRI and was brushed off again even though it was now 3cm. The NHS in the UK are shocking and have honestly cost me so much of my life. I went private in June 2022 andnon the 2 August 2022 I had it extracted and I have 100% got my health back. So now I have a fight in me and I am now looking into
suing them.
Things have to change to many suffer unnecessarily
Angel Shannon similar experiences in my life made it difficult to function as a human being until I passed out while operating a school bus full of high school students. The process involved ten other cars and the Hospital the police took me to were unable to find anything wrong with me so a personal visit to a General Practitioner referred me to a neuro surgeon who rushed me in for an operation to open another channel in my brain for fluid to resume flowing.Hope your legal action is going well.
@@glenncooper4379 Have only just started the hunt for someone to fight my case and all I keep getting told is its to big for them to deal with as the NHS is huge and a conglomerate to fight. So not sure where to go from hear.
I prey you have made a full recovery and your life is back on track. Thank you for your message in response 💜💙
What kind of difficulties did it give you in life? And how was the extraction of it?
It blows my mind that medical professionals still believe these cysts don't cause symptoms when so many of us have them and have nearly the same symptoms and when there have been those like yourself who have had surgery and are now symptom free. I just don't know how they can justify themselves or how they can sleep at night dismissing people who are so sick
How u reduce the size of pineal gland
These cysts are often symptomatic and there are thousands of people with unexplainable neurological symptoms and this type of cyst is consistently ignored in the medical field because y’all were taught to discount symptoms. Dr.Patel at MUSC studies these for a living and has proven throughout his studies that indeed they are symptomatic and size does not matter. He believes it’s the fluid in the cyst causing the symptoms. So how about instead of disregarding patients concerns and treating them like they are a joke or crazy.. we actually start caring what they are going through and believe them when they say they are having symptoms that match a repeatable pattern that is directly correlated with these type cysts/tumors.
I’m one of those patients who have been jerked around by the medical community and my MRI report totally left out the cyst when I had 2 CT’s to confirm it was there since my neurologist and MRI radiologist failed to acknowledge it.
Lets start using our brains. If a cyst is 5mm or bigger then it’s basically encapsulating the entire gland… now how can we tell someone that this is not putting pressure on surrounding structures beats me and then to think ohh these are fluid filled cysts (some are) and we really have bo clue if they are puss filled or saturated with toxins.. who knows what and yet we definitively say… they are not symptomatic unless they are basically 2 cm in size which by that point a patient is in severe agony let alone traumatized with how crap of a life they have and their doctors could give a squat about their well being all because in med school they were taught to ignore those patients.
There needs to be updated research on this asap because there are thousands of people suffering tremendously and the medical establishment is failing us!!! 🤬 get a grip people this is legal torture.
I have a 8mm Benine Mass on MY PINEAL GLAND... I also have been diagnosed with ENCEPHALITUS and High Functioning Autism... I have been dealing with this daily hell for 6 years now and am just now seeing on MY own ( No help from any medical prifesional ) that this Cyst or Tumor may be Responsible for MY ENCEPHALITUS and there for hopefully all of MY internal Struglles...
I'm going through this now. They get mad b I research a lot on the internet. My cyst has grown in the last 2 months (comparing 2 mri reports with written measurements. Still the neurosurgeons tell me the cyst can't possible be causing my symptoms
I have a 22mm pineal mass
@@damonowens6947 Are they going to remove it? Does it make you dizzy and nauseous?
@@pistoffpussycat5778 i dont have either really, I did pass out once a few months ago. I will say it is affecting my sleep and alertness quite a bit. I have an appointment with a hospital in Southampton UK for third MRI scan. They have not told me what it is yet. I hope we both are okay sending prayers
EVERYONE!!! I was diagnosed with a pineal cyst two years ago and constantly brushed off. I made an appointment with Mayo Clinic, they booked me an oncology appointment, a neurosurgery appointment and presented my case to the tumor board. Mayo clinic has taken me seriously every time I’ve been over there for my migraines and my pain. Please go see them and book an appointment with a SURGEON not a clinic doctor!!!
I am absolutely incapacitated for 1 year. Dizzy, blurry vision, balance problems, headaches, ringing in ears... etc.. my MRIs show pineal cyct, midline posterior arachnoid cyst, syringomila at C6, partially empty sella. The doctors tell me none of these things are causing any of my symptoms and they give me pills and send me away to suffer and die. Most of the doctors won't even view my MRIs for themselves. I'm desperate. Please help me
I'm going through a similar thing. And they're so bloody condescending and arrogant about it.
I found a good doctor. They know it's causing my symptoms
Dr Sunil Patel in South Carolina.
I had one. Three years since surgery. Had some complications resulting in bacterial meningitis pulmonary embolism and cdiff. Surgeon was remarkable. 😊
You had one & I’ve got one now! Who (/where) did your surgery?
Mine was 16mm 5 years ago. Idk what it is now, no doctor will listen to me and I haven’t had another MRI to compare. I have a ton of debilitating, scary symptoms and my doctor told me, when I brought the MRI result to my appt, that the cyst is tiny and of no value.
All good now ?
Ditto.
Dr Patel in South Carolina is the top surgeon for pineal cysts. unfortunately Drs and radiologist don't know much about the side effects pineal cysts. They usually just gaslight patients and send them off with anxiety meds.
@@mcovarrubias7372 I had surgery with him in October! My headaches are greatly reduced in frequency. I had stroke after the surgery- which is a risk with this type of operation but his team took care of me and I’m happy with the surgery.
I have a incidental found 12mm cyst, is this considered big?
I’m having this cyst now. It’s affecting my vision, my ability to walk and causing other symptoms in my body. Hopefully I can get this treated soon. They found it in the MRI :/
Please go see Dr Patel, neurosurgeon at MUSC. He will take care of you.
Everything is good
Thank you for brightening up the image
You didn't mention what looks like a low CXA, indicative of possible craniocervical instability, which could definitely explain the patient's symptoms. I'm always a little bit amazed at how underemphasized biomechanical/muskuloskeletal issues are in radiological training compared to other lesions in causing neuropathology.
This is so true. I had my cyst removed with Dr. Patel @ MUSC. At my consultation he so diagnosed me with CCI- he said symptoms between CCI & cysts can be hard to separate. The cyst removal did relieve a significant amount of my headaches, but my neurological deficits still remain because of the CCI.
Mine was found at 1.8x1.6x1.4 cm.
Mine is the same exact size, asymptomic though.
I’m sorry but this is not true. To say it’s been found “incidentally” says to me you were looking for something else causing her symptoms but ran across this growing cyst in the brain. You found it because she was getting a brain MRI for her symptoms so that’s not incidental. I also have these symptoms with a 1.2 cm cyst. How on earth has the medical field not learned that there is a lesion growing in the brain that is causing similar symptoms among many patients is beyond me. Too many have had it removed and got their life back. I will be one of them April 29th. This is misleading and will continue to be behind so many in the medical field misinformed which is causing unnecessary suffering in patients. This should be taken down so other radiologists and doctors won’t be misinformed.
How are you doing now? How big was your cyst?
I hope your surgery went well and you have managed to get some normality back in your life.
You are saying anything bigger than 1.2 cm is to concerned ?
6 mm cyst was ignored by my doctor.
1.2cm = 12mm
On December 17, of 2015 I took an MRI because I had a lot of headaches. My primary Dr decided to ordered an MRI to see what caused my headaches. They found an 2.4 tumor like a Schwannoma or mengioma. They also found an 6mm pineal cyst. The tumor was removed on October 2016, after that a got a pv shunt. Sometimes I get dizzy, my ear is ringing all the time and it's so annoying 😢 I don't know if the noise is caused by the tumor, or the cyst... 😢
I have 1.0×0.8 cm pineal cyst can it cure by medicin or not
They have found 1 in my brain. I had an epileptic seizure and thats why I got an MRI. Dont know if anyone else has gotten seizures from it? Very scared it may be a tumor I will hear it in the next weeks. Im 23....
I have epileptic seizures all while still having this 12mm cyst on brain, I’m 21… any updates?
would flattening of superior and inferior colliculus be problematic?
Thank you
Mines 1.3cm.. so should be fine right 😅??
Mine is also 1.3cm? What did the doctors tell you, and do you have any symptoms? What was the reason for your MRI?
My wife 15.6 The Doctors only watch it , he can’t do nothing
@@shuaaghsreeb830 what are her symptoms?
Find a neurosurgeon that will help. There out there
Mine is 12.2mm the doctor said I need to watch it