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Please Help!!! - Just diagnosed with pineal cyst or could it be a tumou...
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Please Help!!! - Just diagnosed with pineal cyst or could it be a tumour (?)

Hi there,

Last week I went and had a CT scan in realtion to dizzy spells that I had been having for the previous 3 weeks (since going off OCP), about one a week. My doctor told me that this was only precautionary and that he expected that it would all come back clear.

On the scan they found a 21 x 22x 12mm (which is moderate according to my GP but seems to be HUGE in my books) pineal cyst or more correctly what they believe is 'likley a simple pineal cyst' They then went on to say that a it may also be a epidermoid cyst though due to its positioning this is less likley. They then recommended I undergo a MRI. The cyst iself was 'slightly hyperdence to the CSF" and did not light up at all when I was given the contrast agent (iodine by iv)

My GP told me that this meant that they were 'almost certain' that it is a pineal cyst, 'no' it is not a tumour and 'no they did not order the MRI beacause they want to make sure it isnt a tumour, they just want to get a better look at it"

So I guess my question is should I be worried that it may actually be a tumour? If my CT results say it is likely a cyst does that mean they are not sure or that it is a cyst but to cover themselves legally I need to have a MRI?

My GP was very sure (again he used the term almost certain) that it is a cyst and that it is nothing to worry about (apart from the dizzy spells which he believes are unrelated and due to Panic attacks) I have no symptoms.

I am absoloutly terrified (very emotional and very panicy) that it is a tumour and/or that if it is a cyst I will need brain surgery. Am I overreacting to just a cyst or should I be going into the MRI thinking that there is a distinct possibility it is cancer because the CT wouldn't be able to tell the difference between the two. How often will a CT show somthing to be a cyst (would they call it this if they were not 100% sure) that and then a subsequen MRI will show to be a tumour?

Thanks for you time and in advance for your reply.... as you may be able to tell Im an emotional wreck at the moment!

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Avatar_n_tn
HI Jodi, I am sorry for you..  i am a patient here and not a DR. I cannot give you medical advice. I had a spell last July which has changed my life forever. I was never ill except for Mitral Valve Prolapse, am young,,a nd i got this horrific head pressure that wouldnt  cease and got so bad that my legs and rt arm  were weak too , i had been ona  strict diet and lost alot of weight , i was not realy heavy to start w so .. anyway... the dr's thought i was weak from that , turn s out after the neuro i went to ordered a precautionary MRI of my brain that they found two 1.2 and 1.4 cm lesions on both sied of my brain.. and then one w contrast  gadelenium. Neuro sounded concerened and they didn;t know if it was a brain tumor or not. Too make matters worse i had to go 5 months w out insurance after a sep from my husband and  a break in my insurance,.a dn i had to sit tight and wait for everything...to evolve. I was frantic scared out of my mind.. finallya fter one more MRI w out contrast 5 months later , they said the two spots were less prominent and they  could rule out a brain tumor. I was having stroke like symptoms like feeling like i couldn'; t talk, andweakness and tingling. I t has not been as bad for months.. i would stay close to my neurologist i assume you have one and keep a good outlook .. he did say its not too serious from what i got from your post. But iw ould get  second opinions  w it all too. You must be scared. I was . MY dr. couldnt; tell em if mine was a tumor and i know the dr;'s have to protect themselves . MRIs  aren;t painful and they givea  good picture of what s going on too. When do you see your DR again .. Don;t let them put you off. K
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Avatar_f_tn
I would not panic over this.  An MRI is a far better diagnostic test than a CT scan.  They probably just want to be sure.  A pineal cyst is on the pineal gland so that's why they are "almost certain".  Pineal cysts are benign.  I was found to have a meningioma by MRI.  I'm not at all worried about it.  I'm far more worried about my numbness and tingling that is unrelated to this and as of yet undiagnosed.
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Avatar_n_tn
Hi everyone. I'm new to this site, but am more seeking answers than anything. I have been having severe, debilitating migraines for years, had an MRI of brain, which showed nothing, but the fact that I have bad sinuses and very bad ears (I had 5 mastoidectomies, one with tumor). With that being said, I recently underwent a level 2 cervical discetomy with fusion and it seemed my migraines were getting far worse. My Neurosurgeon (male) referred me to a neurologist (female) and she ordered an MRI of my brain. She said that I had a pineal gland cyst about 1" 1/2 and that I had several white lesions all over my brain which show the severity of my migraine and that too many could actually cause brain damage. I went back to neuro for follow up of my fusion and he just like wrote me off as if it was nothing and didn't cause headaches or symptoms, etc. Then I went back to her (she has me on 14 different meds to cease the migraines to to take when I get a migraine) and told her how I was scared and how he wrote me off. She wants to send me to Yale, but my neuro is one of the head neurosurgeons at Yale. Now, I went back to him last week for x-rays of my neck and spine, and the only thing he spoke of was this "tumor" on my pineal gland. The word "cyst" was never used and he spoke of surgery. He also spoke of all the white lesions and I told him what she said and he said it may or may not be that that's from the severity of the migraines. He wants me to have another MRI.  I go back to her in a few weeks and if she doesn't order another one, he will.  Now I'm completely scared and don't know what to do or to think about this...I know I've had so much dizziness, I've had to pull over while driving.  My arm and hand shake uncontrollably, I'm still getting debilitating migraines even with the meds, my head shakes and I'm pretty sure I've had seizures while vomiting (not sure though), and this was all happening  before I saw her.  I know I've had numbness and tingling in my right arm, but that was because of the trapped nerve before my spinal surgery, which now, my arm is fine, but I still have no feeling in my index and middle finger, but I can live with that.
How are you all doing and have you done anything else? Any answers would be greatly appreciated.  Thank you and God Bless, Kim...
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Avatar_m_tn
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 understand 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, dizziness, and balance problems, and in some cases insomnia, nausea and cognitive deficits.  In fact, a study that showed an almost perfect correlation between migraines and pineal cysts.  More rare are emotional lability, fatigue, ringing of the ears, and numbness / tingling.  In extreme cases, pineal cysts can result in loss of consciousness, suicide, or seizure disorder.  So please take this seriously, particularly if the cyst is causing intracranial pressure such as hydrocephalus.
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.  It is extremely, extremely rare to get a malignant, metastatic tumor in the pineal gland, so please do not worry about this unless your radiologist/doctor has told you otherwise.
4) It is common that patients are told that the pineal cyst cannot be affecting them after a neurological test.  But note that some patients present no neurological symptoms in these tests, while still having the symptoms in 1) above.
5) 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 biggest risk associated with surgery is infection, as with any other surgery.
6) Women are much more likely to have pineal cysts and be symptomatic than men.  One theory is that pregnancy may induce the growth of pineal cysts and/or make patients symptomatic.

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.

Good luck.
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Avatar_n_tn
Find a medical institute equipped with Cyberknife and show your pineal cyst MRI scans and literature to the doctor in charge of Cyberknife operation.

CyberKnife may be the best way for pineal cyst treatment.
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Avatar_n_tn
Just wanted to update my post several years ago. All the lesions on my brain ended up being MS. I've since had another surgery on my c-spine, so the whole cervical area is done. They also believe I've had MS for so long that I'm now SPPMS and have been doing chemotherapy for the past 2 1/2 years. So many other problems, I actually applied myself for SSD and got approved my first time trying. Now at 47, I'm almost blind, have more herniations and just found out I have scoliosis. It will never end.
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