When I went to Duke in 2003, my 22 y/o daughter went with me. I had this plan that I’d just go there by myself but she nixed that My youngest was 16 at the time. I don’t know that either of them worried about it excessively, maybe because I didn’t. My daughter still tells me I was cracking jokes while they wheeled me into the OR. I don’t really remember.

I had a much more invasive surgery and I was still out of the hospital in 4 days and back home (in another state) in a week. The only issue I really had with my surgery was the back of my head was numb. Some of my scalp nerves got damaged apparently. Even now there’s a bit of that but mostly it’s better. The shunt surgery was worse for me, I was really sick (nauseous and vomiting) for days afterwards. They had no idea why, they said maybe my brain was not adjusted to a new, normal pressure. That part I hope I never go through again.

I’m so glad you found help and I hope you’ll keep me updated on how things go.
Best of luck!

Anita

A cyst could be just as debilitating as a tumor, it’s still taking up space meant for more important things. It could be your symptoms are from hydrocephalus. I don’t know how big your cyst is but they can diagnose that with a ct scan. I’m not sure why they’d have to insert a wire in your brain to figure it out unless they did a ct scan and there wasn’t enough pressure to be obvious.

As for the Skull Base Institute, I know nothing about them. I do know there are places doing less invasive procedures than what I had done. But holy moly, that costs over $100,000 more than my surgery did!

A cyst is not the same thing as a tumor.

Cyst. A cyst is a sac that may be filled with air, fluid or other material. A cyst can form in any part of the body, including bones, organs and soft tissues. Most cysts are noncancerous (benign). Some common examples of cysts include sebaceous cysts, small bumps that form just beneath the skin, and ovarian cysts. It’s important to note, however, that nearly all cancers are capable of producing cysts.
Tumor. A tumor is an abnormal mass of tissue. Like a cyst, a tumor can form in any part of the body. A tumor can be benign or cancerous (malignant).
From: http://www.mayoclinic.com/health/tumor/AN00463

I don’t know that any of the previous commenters read here regularly or if they would have any advice. I know it’s still hard to find information and help (although it’s a lot better than it was when mine was found), my only suggestion would be to get a second opinion, and a third and fourth if you need to.

I do wish you the best of luck and I hope you find an answer somewhere.

Anita

Firstly so comforting to see real people with the same problems and hearing positive things about what is a nightmare at times to live! So thank you Shiloh for making this blog and for sharing your story.
I became ill “over night” in January 2010 and only recently realised that infact it has been down to a pineal cyst. I was diagnosed with the cyst in January 2011 after I had a strange episode where I had two weeks of migraines followed by a big sudden onset migraine one day with speaking problems, being extremely dizzy and confused. When diagnosed I was told that it was not causing my symptoms and not to worry about it, but because it was large they would do another mri in 6 months time. In those 6 months I had a few problems with my eyes while on a computer or reading and general dizziness (which I thought was my thyroid). However I started getting headaches in June and went to my doctor after it had lasted for 2 weeks – he sent me for another mri and this time they told me they had noticed narrowing of my cerebral aqueduct due to the size of the cyst and gave me three options: have a craniotomy to pop the cyst (which they didn’t advise), have a pressure test in hospital (a wire inserted into the top of my brain to measure pressure) or do nothing and have mri scans every 6 months to monitor it. I still thought that my symptoms were not due to the cyst (I haven’t listed all of them because there are too many!) so opted to do nothing. Since June my eyes have become extremely painful and find it impossible to use computer of read most days, I get very bad vertigo which makes me sick, I have tremors which have been with me for 2 years (i thought they were something to do with my thryroid!) I get head pains daily with a dull constant headache. I am becoming very depressed because I can not do anything I used to, and I am feeling desperate to get rid of my symptoms. I have two children who are young and my priority is being around for them which makes a decision on what to do next very difficult. I have searched the internet for answers on the best way to proceed and feel that is it probably an endoscopic procedure which although I have found at the Skull Base Institute in America for $148,000 – I have found nothing as appealing here in England! I wondered if anyone knew of any such surgery on offer in England with someone who has performed this procedure a few times at least? I am very desperate and really can’t go on feeling the way I do everyday because I’m not able to really live my life, I just concentrate on getting through the day without becoming too depressed.
Secondly I notice that no-one is referring to a “cyst” – is it the same thing as a tumor – should I be asking questions about it being anything else???
I would really love to hear from anyone who is able to help!
Lilla
lillacroysdale@live.co.uk

It’s great you are setting up a group. I had one to go too back when I was dealing with my tumor. That’s where I got steered to Duke.There was a lot of excellent info shared among members. I thought it was a shame when it died out.

I agree they should be studying these more. The thing that surprises me are the common complaints we all have and the doctors blow it off as unrelated. Some of it I think might be unrelated (migraines) but who knows? I still have migraines but I also still have tumor remaining.

I doubt if I have much to offer but I’m interested in joining, no doubt I’ll learn something.

Keeping you and your husband in my prayers,
Anita

We are seeing drs. at Johns Hopkins, Harrisburg, and hershey. No one has any good answers, we just experiment with different meds, with very little help. His sleep has gotten so bad that he is awake most of the night,with only brief periods of sleep, even after increasing his melatonin and adding some sleeping meds and antidepressants. As a nurse, I believe some of this is due to the fact that without a pineal gland, the sleep pattern/circadian rhythm can be seriously disrupted. I also believe his parkinson;s like symptoms are from a disruption in dopamine. He is taking seronin inhibitors and has tried a few of them to see if any help.

I am working on starting a yahoo group (I know there are 2 others, both are inactive), along with gathering information, both personal, and professional, like actual research, studies, case studies, etc.

If anyone is interested in being involved, has information to share, ideas, ways to help, things that have worked (both traditional medicine and alternative), i would love to hear from you.

please respond with “PINEAL GLAND” in the message title,so I don’t accidentally delete it. Send your information to Cavanaugh3@yahoo.com.

I am in the middle of a nursing graduate program and a large portion deals with research, studies, and learning more about funding, grants, and furthering research. I know more can and should be done, such as studies as to the the possible link between gulf war veterans and these tumors (my husband’s is not even able to be identified as either cancer or benign)….the hereditary issue,fluoride and calcification, etc. These are all issues I’d like to explore,write about, and help with furthering research.

Thanks! And thanks for this site! And for being here for all of us going through a rare and life-alterating tumor and surgery!

Barb Cavanaugh
Cavanaugh3@yahoo.com

I think brain tumors are on the increase here in the U.S. too, with lots of discussion about cell phones. I don’t even own a cell phone :p

I was told the same when they found my tumor and knowing some people that have other kinds, I have to agree. I’m hoping he will be fine from here on out and thank you for keeping us updated.

There is so much unknown about this type (and other types) of brain tumour and in the UK brain tumour research is very underfunded and yet brain tumours are on the increase. I have my son back after some uncertain months and I am so grateful to all the staff at the hospital who looked after him. I will continue to update on this forum, because for anyone else facing the prospect of this type of tumour, I hope it will give hope and encouragement. We were told at the beginning of the treatment that “as brain tumours go, this is one of the best types to have”.