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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


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).]





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