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Brain & Nervous System Disorders Message Board

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Re: Pineal cyst
Jun 9, 2003
My now 15 month old daughter was diagnosed with a pineal cyst by CT scan which was done for other reasons a few months ago. Pineal cysts are VERY common - up to 40 % of people have them on routine autopsies, and a substantial percentage of people have them found on CT or MRI studies done for other reasons. It is very RARE for them to be associated with any symptoms. No physician in their right mind would recommend having something done about a small cyst in the brain because you would have to have some form of BRAIN SURGERY to do this! There are always significant risks with any surgical procedure, especially with such important and sensitive areas. There are less than 100 people in the world who have had significant symptoms related to pineal gland cysts. If the physicians don't believe that the cyst is related to the headaches and other symptoms, they're probably right. Obviously having something in your brain can be terrifying - and I see brain tumors in children all the time - but if the appropriate studies are being done, and follow-up is happening with your physician, you will probably not have any further problems related to these cysts. If the cyst is truly the cause of the problems, there will almost always be other findings on the imaging studies.

[This message has been edited by dlhowell998 (edited 06-13-2003).]
Re: Pineal cyst
Jun 13, 2003
This is definitely NOT true! My daughter suffered for 4 1/2 years with a pineal cyst. She had many, many severe symptoms and no doctor would help her!!!! She finally had surgery and her symptoms are gone!!

She had severe pressure pain in her head. She had endocrine problems, cardiac problems, etc. She had numbness, tingling, nausea, vomiting, visual symptoms, etc. Many, many people are suffering with these and being denied medical help!

Just because no doctor helps these people does not make their pain and suffering any less real.

My daughter could not eat anything except baked potatoes or she would vomit. She could not lay down to sleep for months. She had to sit up straight to sleep or she would have excruciating throbbing headaches due to partial spinal fluid blockage. She was left to suffer for years with no medical help! These pineal cysts DO cause severe problems for many people, although no one is willing to help them! Her face was always swollen and her headaches became severe and constant! It was a nightmare! No one cared or attempted to help in any way except by offering pain medication.

When someone in the medical profession got involved they immediately did surgery!! Someone got involved (a distant relative) who knew all the symptoms this lesion would cause (he did research in neurology). He knew her symptoms before I told him. This area of the brain controls so much of the body. There is no extra room in this area and there is definitely no room for a brain lesion to be growing.

When you move these lesions most likely move and hit other areas and cause different symptoms. These lesions are only connected at the top. My daughter had presyncope. She would black out when changing positions at times. She always got dizzy and felt like passing out when changing positions. Her blood pressure would drop and her heart would beat really fast from this. Still she was left to suffer with no help.

Her 2.1 cm cyst was against the tectum for years and no one would help. This caused her double vision, crossed eyes, etc. No doctor would still help! She was very sensitive to light. She had trouble focusing her eyes to read. She had severe pain behind her eyes. She had an abnormal VEP (visual evoked potential) which proved she had nerve damage behind her eyes from the cyst. No one would still acknowledge the problem. She had an abnormal EEG. No one would still help!!

It seems to me that doctors are just allowing people to suffer with no help!!! How cruel and uncaring this seems to be! There are many children suffering also. Just because doctors may have only done surgery on 100 or so people with pineal cysts - this does not mean there aren't many others suffering and being denied help!! For some reason they are allowing people to suffer without medical help. This is happening to so many people! I never thought this would be possible in the United States.

The risks of this surgery were really not very high. We were told that my daughter had a 96% chance of surgery being successful with no complications. Most all of her pain and symptoms are gone!!!

I hope this is helpful. I know 3 others who have had
a pineal cyst removed too. They are all fine and their symptoms are mostly gone too. My daughter woke up immediately after surgery with all her pressure pain in her head gone. The pain down her spine and throughout her body was immediately gone!! Her vomiting was gone within a week.

This area of the brain controls much of the body therefore it causes severe problems when there is a lesion in the pineal area.

There is much medical proof of this. There are many medical journal articles proving this. Walter Reed Army Medical Center (our government) did research and found that they caused severe problems and felt they should be removed. They did surgery on pineal cysts as small as 5 mm. Other countries like Japan, Germany, and Italy are doing surgery for these brain lesions. Also, NYU (Dr.Wisoff and Dr. Epstein) did research and stated they sometimes need to be removed and they do cause partial spinal fluid blockage, which eventually leads to complete blockage. There is a lot of medical information available.

If left untreated they could cause death. They will eventually cause spinal fluid blockage. Also, there are 3 primary types of pineal brain tumors that are completely cystic! These could be cancerous. There is no way to know without biopsy or surgery.

Honestly I don't understand why doctors refuse to help all those suffering. Just because doctors tell us the cyst is not the problem, this does not make it so. They are telling hundreds of people this. They all have the same type of pineal lesion and the same symptoms. These symptoms are the same symptoms associated with pineal tumors. Just because the lesion is cystic does not make their symptoms any less severe or real. Just because their lesion is cystic should they be denied medical help and left to suffer?

This is cruel!

[This message has been edited by Dodger8 (edited 06-14-2003).]
Re: Pineal cyst
Jun 23, 2003
I was not trying to get anyone upset.

I am very sorry that your daughter had such severe symptoms. Most physicians today would agree that people with larger cysts (such as hers at 2.1 cm) that occur with symptoms (which can be vague or much more severe as hers) may benefit from surgery. Most of the newer surgical approaches are less invasive but their efficacy has not yet been proven.

Those who have had the operations have had symptoms. The majority of those who have had symptoms have had other findings on their MRIs, such as hydrocephalus or aqueductal stenosis. Hydrocephalus would definitely push someone towards operating sooner than later. The hydrocephalus can be intermittent - the pineal cyst can act as a ball valve, trapping fluid intermittently, or can stay fixed, leading to progressive hydrocephalus.

No surgery is without risk. I see children almost every day that have had surgery for brain tumors (not just cysts), and the effects can be devastating.

It is true that there are tumors that can be present in the pineal gland. Certain types of cystic tumors are more common in certain age ranges than others. Children are less commonly diagnosed with pineal cysts, but also tend to have some of the cystic tumors present. Usually there are characteristics seen on MRI which would make someone more suspicious that there is a true tumor present and not just a cyst, but this is not a perfect system. That is why follow-up MRI studies are recommended, to check for growth and change of the cyst. If the cyst grows, then the removal would be more necessary to prove that it is in fact a benign cyst.

I am personally very concerned about my own daughter, and have done quite a bit of reading in this area and spoken with several specialists. All agree that severe symptoms that are "typical" as your daughter's were or cysts that grow or change or look suspicious on MRI should be more closely examined and/or removed. However, for those that are found "incidentally" or without symptomatology that fits the lesion should merely be monitored.

It is very unusual for a 1 year old to have a pineal cyst diagnosed. My daughter will be closely monitored, and unfortunately risk having sedation fairly frequently for the MRIs to be done. If she does develop a pineoblastoma or pineocytoma or germ cell tumor, I will be devastated. A pineal cyst is the best I can hope for at this time.

She is in good company with the other 5-40% of the population that has a pineal cyst.
Re: Pineal cyst
Jul 9, 2003
I was wondering if anyone could perhaps be of any help.
I am 38 years old and have been having headaches about 1 year ago and the Dr. I was seeing at the time ordered an MRI that came out normal. The doctor wrote it off saying, I was just a migraine suffer.
Now almost a little over a year later, the headaches have gotten worse. I have changed doctors, and with that, the new Dr. ordered a new MRI. This MRI shows I have pineal cyst 1.9 cm. The Neuro surgeon Iíve seen said he feels I need surgery do to the symptoms Iíve had and the size and the fact that itís grown to the size it is in such a short time, however he said he doesnít have much experience with this type of problem and is looking into finding someone who has had experience in this field. As I understand having a pineal cyst at my age is rare and mostly found in younger children.
Does anyone know anymore about this and might direct me to someone with some experience in this?

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