pineal cyst

Find more information which can really help for these pineal cysts on Facebook page Pineal Cysts - find me on Face Book to add you to the site where there are lots of us doing something about it and getting help,  my name is: Lilla Croysdale - I have a cyst too! x

I am so thankful that my daughter was diagnosed here, with the pineal gland cyst, because she has had such wonderful care at the Texas Brain and Spine Institute. The doctor said that the cyst wasnt the problem, but where it was sitting, it was blocking the flow of spinal fluid in the brain, causing migraine headaches, hydrocephalus, dizziness, etc. He removed the cyst, and she has not had a headache since. She had three major surgeries to get there, but the result is wonderful! My prayers go out to all of you who are suffering. While the doctor may feel the cyst is not a problem, ask about the flow of spinal fluid, and blockage.

Find me on Facebook, my name is Lilla Croysdale - I have a pineal cyst too and there is a wonderful site on Facebook that I can add you to which will give you help, information and support on where to find a solution, please come!

My daughter too has a pineal cyst. She is 15. I have it watched at Cleveland Clinic. They also have no solutions. MRI shows growth in the last year. Please any help BESIDES the Skull Based institute?

Absolutely, join the FB Pineal Cyst group on there people have had these cysts removed in several good places in America and also abroad etc. It is a brilliant place to get information on surgery etc. and there are other mothers on there with children your daughter's age with advice and support! Find me on Facebook - Lilla Croysdale and I will add you to the group!

I had a MRI in 10/2012 they found a 3 mm lesion on my left temporal lobe. I went to the ER 12/12 for severe head pain,convulsions, seizure and face numbing and tingling, electrical pulses all over my head. I could not feel my face! The ER did another MRI 12/12 and found a 9mm cyst. I have had left eye pain and wiggling, severe migraines, unsteady gait, sleep issues, nausea, dizziness, lack of concentration, severe exhasution, inability to tolerate sound and light, convulsions, and seizures. I was in the hospital for another issue for 4 days 11-12. I had three terrible seizures and woke up from a dead sleep with the feeling of a HOT BURST to the back of my head like a bullet went in my base of my head and had seizures each time. Teeth chattering stiffness in neck, arms and legs, but not full epileptic seizures. I am aware, and they last about 5 minutes or so. I had a heart moniter on and it went crazy. My low blood pressure went for 59 to 106 in seconds. I am 46 and had no previous head, heart related issues ever! Not really even a headache. I have seen Neurologist sine 10/12 and he says the Pineal gland is useless??? They don't really know why it's there and that my cyst would not be casuing my problems. Yet he has me on anti seizure medication! This all started for me about 6 months ago, small subtle changes and then it became very apparent that I have something going wrong in my brain. Dr. first put me on Keppra- BAD idea, made me crazy and sick!!!! He now has me on Dilantin 300 mg and Verapamil for the Mirgraines. I keep telling him it feels like and AX is sticking out of the back of my head, but he says the cyst is not the problem it is the lesion on my left temoral lobe. He honestly doesn't know. He first thought I was exhasuted, then he thought I had sleep apnea, and then diagnosed me with epilepsy after the EEG and MRI in OCT. I have never had any problems ever in my brain. I have asked to be referred to a neurosurgeon to look futher at the possibilty this could be the culprit of my issues. I have been in relativly good health, active, I worked full time, cleaned my home and did all the yard work on 1/2 acre property and everything in between. I haven't been able to work for 3 months. Any other sugestions would be greatly appreciated. thanks, still looking!

i went to the dentist and have never been the same since. The drilling was not with a dental drill. I now have lesions in my brain. The pineal gland was activated. What do i do now. My whole life has changed and my body as well. Bow do i get back to my normal self. This was a sadist act. Felt it happening. My nose felt like it was broken and a sharp pain above my right eye in the forehead. Please help me.

see:

 

***Post is edited by moderator *** Web addresses not allowed***Please read our Terms of Use

 

especially this comment:

ycompanys                        

Oct 22, 2009                     

To: dana663   

Neurologists may be very quick to tell you that you are fine with a pineal cyst and that it is not causing your symptoms.  But beware:  1) Doctors in general don't really undestand what the pineal gland does; and 2) Some don't seem to understand the difference between symptomatic and asymptomatic pineal glands and tell their patients not to worry about pineal cysts.Some things to keep in mind, according to the medical literature: 1) The most common symptom is headaches, followed by vision problems and dizziness, and in some cases insomnia, nausea and cognitive deficits, particularly if cognitive deficits are involved.  2) Pineal cysts can be symptomatic if they are larger than 0.5 cm.  Problems occur when the cysts cause compression in the brain, or when they are associated with apoplexy or hydrocephalus. 3) Radiologists cannot easily distinguish between cysts and benign tumors, often leading to misdiagnosis.  NOTE:  A benign tumor is not metastatic, not malignant.  4) If you are in the 18-34 age group, your cyst can grow, so you should get MRIs every 3-6 months.  If your doctor does not want to, get a new doctor. 5) If you have to get surgery, get the following one but only if you have compression or hydrocephalus and your symptoms are incapacitating:  Suboccipital craniotomt with infratentorial-supracerebellar approach and microsurgical resection of pineal cyst.  Contrary to what is stated above, this is NOT brain surgery.  They access your pineal region from beneath the brain, so they do not affect your brain at all.  It sounds like a scary procedure but is actually straightforward for a good brain neurosurgeon.  The surgeon essentially inserts a microscopic endoscope that magnifies the area by 50x and uses a navigation system to get him there.  It is minimally invasive.  The medical literature says that most patients whose pineal cysts are not too large (e.g., < 4.5 cm) become completely asymptomatic after surgery.  The surgery entails a 6-8 week recovery, and a small incision in the head and removal of skull bone, which grows back after surgery.The most important thing is to get a doctor who takes your pineal cyst seriously.  It is a rare disorder, and few doctors understand it well.  So you will need to be persistent.   

 

Hey everyone, 

        For some strange reason every time I lay down to go to sleep I can feea pressure  within my eyes. I have had plenty medical issues since three months ago including numbness, my throat closing up, tingling sensation and an electric current traveling through my body. I have seen five doctors thus far and I have had an MRI, bloodworm and an electric nerve testing exam. I was originally diagnosed with low b12 which was strange because I eat meat every day just to find out that's not the issue. My ENT stated that I had carpel tunnel in my left hand but that's it. My MRI only revealed a 9mm cyst I was told not to worry about but that was it. I want to known do you this is  affecting my eyes?

Hi, I have been off work now for two months. I have been having drop attacks, palpitations, chest pain, horrendous pressure in my head. I'm either in a wheelchair or use a frame to walk as my legs become extremely fatigued and difficult to move, my right eye feels that it is being twisted at times, I have intermittent blurred vision, slurred speech, intermittent memory loss and unable to find words . When I enter shops, in my kitchen, doctors, hospital etc the head pressure grows and my legs start slowing and I develop speech problems - slurred speech. It seems to be the lighting that affects me - I'm fine when I get outside. I've had my heart cleared and saw a neurologist on Christmas Eve. She told me that it was all anxiety but I just don't buy it! She also told me that an MRI scan in 2010 showed a pineal cyst but that it's nothing of concern as many people have them and don't know. Now reading what people are saying about their symptoms and having a pineal cyst, I'm wondering if mine has grown and causing these symptoms. I originally had the MRI as I developed a tremor in my right hand, which they said would go away and hasn't! I'm angry now that the neurologist in December signed me off with anxiety and told me to do a mindfulness course without another MRI to check that it hasn't grown. I will be pressing on with trying to have another MRI but it's disheartening to see that so many patients seem to be being fobbed off :-( Can anyone recommend a neurologist in Oxfordshire or elsewhere in the UK who might take this seriously? I've just been told that my pay is going to be halved as I've been off sick for months - I will start becoming anxious when I can't pay my bills!! :-(. Thank you all for sharing your symptoms and experiences.

Hi, I have been off work now for two months. I have been having drop attacks, palpitations, chest pain, horrendous pressure in my head. I'm either in a wheelchair or use a frame to walk as my legs become extremely fatigued and difficult to move, my right eye feels that it is being twisted at times, I have intermittent blurred vision, slurred speech, intermittent memory loss and unable to find words . When I enter shops, in my kitchen, doctors, hospital etc the head pressure grows and my legs start slowing and I develop speech problems - slurred speech. It seems to be the lighting that affects me - I'm fine when I get outside. I've had my heart cleared and saw a neurologist on Christmas Eve. She told me that it was all anxiety but I just don't buy it! She also told me that an MRI scan in 2010 showed a pineal cyst but that it's nothing of concern as many people have them and don't know. Now reading what people are saying about their symptoms and having a pineal cyst, I'm wondering if mine has grown and causing these symptoms. I originally had the MRI as I developed a tremor in my right hand, which they said would go away and hasn't! I'm angry now that the neurologist in December signed me off with anxiety and told me to do a mindfulness course without another MRI to check that it hasn't grown. I will be pressing on with trying to have another MRI but it's disheartening to see that so many patients seem to be being fobbed off :-( Can anyone recommend a neurologist in Oxfordshire or elsewhere in the UK who might take this seriously? I've just been told that my pay is going to be halved as I've been off sick for months - I will start becoming anxious when I can't pay my bills!! :-(. Thank you all for sharing your symptoms and experiences.

sorry to hear of everyones probs im fed up also dont know what to do i haeve a pineal cyst 15 mm or about 1.5 cm no one sems to think thats what is causin my severe headachs or sudden memory prob im 39 yr

I am a 43 year old woman with a pineal cysts...It first showed up on a Cervical MRI 7 MONTHS ago and at that point it was 7mm. Last week I woke up one morning and about 20 minutes later I had what felt like the weight of a bowling ball pull my head down and then I lost my balance and nearly hit a wall but blocked it with my hands. A few minutes later I had that same heavy bowling ball weight feeling in my head and my head dropped down and I almost went through a glass wall unit. I must be crazy because I was dizzy and still drove to work. When I entered the building I was not only dizzy but I had pressure in the left temple area and pressure to the crown of my head like I had worn a tight hat too long and a slight headache like the feeling I get when I first go outside and it is a VERY SUNNY DAY...I also had tunnnel vision and blurred vision. I have also been getting very confused and my memory is terrible...thank God for Post-Its. I went to the nurse in my building and she took my pressure and it was 160 over 100...my blood pressure usually runs low to normal and this was an hour and a half after I nearly fell over. She told me I had no choice but to leave work so I went to the hospital. The hospital did a Cat Scan and told me that my 7mm pineal cysts from 7 months ago had grown to 18mm...nearly tripple it's original size. Pineal Cysts take years to grow and mine grew way too rapidly. The Doctor said I needed to see a Neurologist and have an MRI of the brain with contrast. The next day I had the MRI and it showed up as 15mm by 15mm...so it still more than doubled in size in 7 months. The following day I went to a Neurologist and he was terrible...he didn't even know where to locate it when looking at the MRI. He told me to see a NeuroSurgeon and I am going to one this Friday. Besides that my personality has also changed in the past few years...I was such an easy going person...I had fun in my life...I knew how to have fun...Now I have a hard time finding joy in life and suffer from Major Depression, Anxiety, Insomnia, Pannic Attacks,  have hand tremors and I feel the world is out to get me and I have been irritable and Very Emotional. The Pineal Cysts is leaning to the right and my vision in my right eye at this point even with glasses is terrible. I feel like colors look different in one eye compared to the other and I even did a vision screening at work WHILE WEARING MY EYEGLASSES and my vision was still terrible things appeared blurred with some shadowing and if I look out of my right eye only I can't even see the computer screen...it is a complete blurr...my left eye is perfectly clear. Btw I forgot to mention I have never wore glasses for close up...only for distance. I still have tight pressure around the crown of my head like I wore a tight hat too long. I have heard that the Pineal Gland is also known as the third eye and the heart of the brain. I have also heard that since it is in the center of the brain Neurosurgeons don't like to do this sort of surgery because it is considered the most risky surgery. I have gotten so much information off the internet so I don't know how much is accurate. If any of you can relate to my situation with that heavy feeling in the head or even the fuzzy, blurred vision of an eye please send me a message. Any information would be greatly appreciated. Thanks and good luck to all of you.

Hi, how do I find you on facebook?

I am a48 year old, who has been battling a myriad of strange symptoms: fatigue, nauseasness, fatigue, dizzy spells, temporary complete vision loss, as well as multiple temporary episodes of partial vision loss, blurry vision, various types of headaches, rotating tingling -pins and needles throughout all my extremities, daily burning tongue sensation, distorted sense of smell and taste, weird eye ticks whre my right eye completetly shut off uncontrollably.  My familiy doctor in 2007 thought I may have MS, so I had an MRI.  That is when we discovered my pineal cyst.  Mine was 6x8x5 and grew to 7x8x5 in one year.  Dr has not reuested further evals because they say it has remain "stable" in their view and this is as many of you have heard "an incidental finding".  Very frustrated and scared when I have had vision loss.  Not sure what I should do.

I read somewhere about surgerry to have cyst reduced/removed and came across videos on Youtube of patients after cyst removal, some are not pleasant after surgery effects.  

Good luck to you all