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vascular pituitary tumor (non-secreting)

Posted by @jackiep in Brain & Nervous System, Aug 20, 2011

My husband was diagnosed with a pituitary tumor in Feb 2011, had transsphenoidal surgery to remove it and started having headaches 6 weeks later. To make a long story short, the tumor is back and it's larger than the original one and it's only been 5 months since the surgery. We've had a few Dr.s say it is too vascular to remove. It is affecting his vision, (he has to wear a patch because he has double vision) the tumor is around the carotid artery also. So we have been told that radiation is what we need. In the mean time we hope it doesn't rupture.
Does anyone have any experience with a pituitary tumor that would be willing to share how it was treated and how successful your procedure was?
Thanks in advance.

Tags: Other, pituitary, tumor


Posted by @modernhera, Aug 23, 2011

Have you been to mayo yet? I too had recently discovered a very large pituitary macroadenoma secreting an exremely high amount of gh and was diagnosed with acromegaly. The tumor was pushing on my optic chiasm as well as wrapped around one of my caratiod arteries. At mayo they werent sure they got it all either but at least did the transsephenoidal surgery and said in 3 months after another mri may need to do their radiation therapy done in one setting. My vision was immediately better post surgery last week fyi!! I hope this helps in some way as i found the doctors at mayo to truly be putting me in the best hands.

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Posted by @jackiep, Sep 10, 2011

We were able to meet with a couple of great physicians at Mayo. They would not recommend surgery either so my husband just had his first week of radiation. That will not bring any immediate relief to him and we are praying it works. We are also using an essential oil called Frankincense.
I'm glad you were able to get your vision back! Hope your still doing well


Posted by @susan64, Sep 9, 2011

Not sure this is much help...I had a tumor producing large amounts of prolactin. I had the transphenoidal surgery as well. This was 26 years ago and I have suffered SEVERE migraines from the time I awoke in ICU until now. I have had MRI after MRI and have been told they tumor isn't back,maybe it is, no it isn't.... though my surgeon (military) packed the the place they removed the tumor with fat (I don't know what they thought back then) so I just don't know. While my vision is not affected...when the migraines hit, it is always behind my left eye and feels like if I ripped that eyeball out, all would be fine. I am on a drug regiment that involves daily meds, triptans for when I get a headache and morphine. I personally am not sure what to do next.

I wish you and your husband all the best. I just wonder from 26 years ago to much is known. I would rate my surgery/treatment as halfway successful.


Posted by @jackiep, Sep 10, 2011

So sorry to hear that you haven't been able to get help after 26 years! We have only been dealing with this for about 8 months and it's been exhausting. We can't find a dr. that will do surgery again so my husband just finished his first week of radiation. He is also appling Frankincense twice a day to his forehead. We've heard great things about using this oil and at this point we are will to try about anything.
Good luck to you!


Posted by @believe90, May 2, 2015

I see this post is from a little while ago, but I have been diagnosed with Acromagegaly. I went through with the surgery, however they were unable to remove all of the tumor due to its high risk location. I began monthly injections that worked for about a year. Now my tumor is growing despite being on the injections. I too was told about frankincense. I'm wondering if you had positive results with this? And was he only applying to his forehead?


Posted by @karensantafe, Feb 26, 2012

What is the purpose of using frankinsence oil and how is it used? I had an undiagnosed pituitary adenoma that produced symptoms for about 15 years. When discovered in 2008 I had surgery but it was so big they couldn't get it all out. It grew back "very knarly" and twisted round the pituitary and pituitary stalk. In October 2011 a second surgery removed the rest of it (including the base). Since then I have near-constant headaches, mostly across my forehead and aroung tne temples. I'm wonderingif this oil might help. Advice, anyone?


Posted by @mrcross, Mar 4, 2012

after getting a mri the dr. told me i have a small tumor on my pituitary gland and he gave me some medication to try to shrink it.

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