Introduction: Pineal Region Tumor (26yr Old Male)

mibale · New User Joined: 27 Aug 2009 Posts: 3

Hi guys!

I’m very thankful a forum like this exists.

This is my first time posting. I would like to introduce my case to all of you and also get some opinions. I am 26 year old caucasian male living in the Bay Area, California.

On 7/29/09 I experienced painful headaches. A CT scan at the doctor’s revealed a tumor in the pineal region of my brain, and thus it was the reason for the mild hydrocephalus. An additional contrast MRI and Profusion MRI taken the same day showed a 2.5x2.5 pineal tumor that involved the quadrigeminal plate and extends into the thalami bilaterally. Three days after the headaches, all headache symptoms disappeared. It is now 8/27/09, and I still have not experienced any headaches or vision problems.

I have consulted with two Neurosurgeons thus far (Stanford and UCSF). Since I have been doing a lot of travelling in South East Asia for work the last few years, the Stanford Neurosurgeon thought there is a chance that the lesion is Cystercercosis, but a blood test for it came out negative. The next thing the Stanford doctor recommended was a third ventriculoscopy to take care of the supposed hydrocephalus and then a suboccipital craniotomy for a biopsy and potential resection.

I decided on moving on to UCSF for treatment since they have 5x more traffic for neurosurgery than any other hospital on the west coast and they are ranked #3 by USnews. The doctor at UCSF also recommended the same thing after reviewing the 7/29 MRI: third ventriculoscopy & suboccipital craniotomy. The third ventriculoscopy is now scheduled for 9/3/09 with an MRI on 9/2/09.

The really bizarre thing is that I am no longer experiencing symptoms that would relate to obstructive hydrocephalus and I am not taking any medication. It has been almost a month now! I feel completley normal. I would like to avoid doing the third ventriculoscopy and just move on to the craniotomy for biopsy and hopefully complete removal. Have you guys ever heard of hydrocephalus suddenly going away?

Should I ask the doctor to do one more MRI and space out the third ventriculoscopy surgery a few days later? If the new MRI shows no evidence of obstructive hydrocephalus and no enlarged ventricles, can the third ventriculostomy procedure be avoided?

In regards to pineal region tumors, are outcomes usually good?

Tumor notes: Blood tests for Alpha-fetoprotein and HCG shows to be within normal limits. Both doctors think this is some kind of germ cell tumor or pineocytoma, either benign or malignant.

Thanks!

Alexander

artaran

My son, who is now 26, was diagnosed with an anaplastic astrocytoma in January of 2006.
He was operated on by Dr. McDermott at UCSF and treated with radiation and temodar. His onocologist is Dr. Chang at UCSF. His is right now still in remission and in excellent health. We have been very satisfied with his treatment. Let me know if you'd like to talk with him or if you have any questions or snags with treatment or insurance. (We had issues with insurance.)

My thoughts are with you; please keep us informed on your treatment and progress.

Arleen
_________________
Arleen Tarantino

http://www.willpowerresearchfund.com

mibale · New User Joined: 27 Aug 2009 Posts: 3

Hi Arleen,

I will also be operated by Dr. McDermott. How did you like him? He seems personable and extremely knowledgeable.

I'm glad to hear your son is in remission! What is his quality of life like during remission? Is he working?

How big was his tumor when he was diagnosed?
Where was it located?
What type of biospy was done?

I just reviewed your website and was very impressed by it. When you say he is "in remission", does this mean there is no sign of the tumor in MRI's?

Thanks again.

artaran

We were very happy with Dr. McDermott. We felt he was honest, detailed, and precise. Will, my son, has no symptoms right now. The resection was consider "total". Meaning all visible tumor was removed. He had some temporary weakness on his left side for about a week. He also had severe headaches for about two weeks. Both of these symptoms were mostly due to swelling.

His tumor was the size of an avocado--located in parietal and frontal lobes. It was pushing the midbrain and seeping into one of his ventricles, but was considered very operable.

He had no symptoms before being diagnosed. The tumor was an incidental finding that occurred when he had a CT scan due to a minor concussion.

I'm going to send you his email privately, so you two can exchange information.

Arleen
_________________
Arleen Tarantino

http://www.willpowerresearchfund.com

artaran

We were very happy with Dr. McDermott. We felt he was honest, detailed, and precise. Will, my son, has no symptoms right now. The resection was consider "total". Meaning all visible tumor was removed. He had some temporary weakness on his left side for about a week. He also had severe headaches for about two weeks. Both of these symptoms were mostly due to swelling.

His tumor was the size of an avocado--located in parietal and frontal lobes. It was pushing the midbrain and seeping into one of his ventricles, but was considered very operable.

He had no symptoms before being diagnosed. The tumor was an incidental finding that occurred when he had a CT scan due to a minor concussion.

I'm going to send you his email privately, so you two can exchange information.

Arleen
_________________
Arleen Tarantino

http://www.willpowerresearchfund.com

mibale · New User Joined: 27 Aug 2009 Posts: 3

Thanks Arleen. I will reach out to him.

Is there any type of diet that Will is on?

artaran

He is on a diet, extracted from synthesizing information from Ben William's [i]Surviving Terminal Cancer[/i], written by a psychiatrist who was diagnosed with a GBM over 15 years ago and is still in remission, and a nutritionist who specifically focusses on diets for brain tumors, as well as his own cross-referenced research.

He can give you details as to where to find good information, so you can set up your own strategy.
_________________
Arleen Tarantino

http://www.willpowerresearchfund.com

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