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CSF leak caused by tumour shrinking

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Old 11-22-2010, 04:18 PM   #1
Join Date: Feb 2009
Posts: 8
Alex1989 HB User
CSF leak caused by tumour shrinking

Hi all,

I was diagnosed with a pituitary tumor in March of this year, a macroprolactinoma.

Long story short it was a shock but a relief to find out i had a condition as i had been complaining to doctors and the like for several years about vision problems, until i could barely even see (was so gradual loss of sight that i just accepted it due to being given the all clear so many times).

My tumor was discovered when i had an MRI scan. All hell broke loose at that point because of the sheer size of it (tennis ball, i was told) and i was transferred to hospital and had a biopsy to determine what the tumor was exactly.

When the tests came back and the doctors knew what it was, supposedly the surgeon yelled "YESS!!" and did a little leap for joy when he found out he didnt have to perform surgery (the tumor had wrapped itself around the main nerve to my brain and various optic nerves, hence my severe eyesight loss, and it would have been very difficult to operate on), as it could be treated with medication (parents said he yelled haha).

During the last 6-7 months, i have seen a huge increase in my eyesight and particularly my peripheral vision, as it was non-exsistent prior to starting medication. I am so happy about this, although i still dont have a left field of vision yet as my left eye was alot worse than my right in terms of visual problems. My prolactin levels when i first entered hospital were 742,000, and my testosterone levels were untraceable. 2 months ago my prolactin had dropped to 64,000 when i had a blood test.

Now on throxine to try and get my thyroid hormone levels back up, and soon to start testosterone treatment as they are still quite low. Endocrine is positive the prolactin level will drop to normal levels eventually.

However, for a month or two i detected some dripping from my nose and a kind of metallic taste in my mouth often. I went to my GP who gave me a tube to try and catch some and take it to the hospital.

I did this, and the results showed tau protein positive and that it was indeed a CSF leak.

Saw the ENT in September, who advised surgery to seal the leak.

Tommorow i am having transphenoidal surgery (through the nose) to seal the leak. I am very nervous, alot more than i was when i had basically the same thing months ago for some reason

The main reason i am making this post is just to see what other people's experiences have been with this tumor and how they have coped. Did you have a CSF leak ? How did it go after surgery?

Thanks for reading, went on a bit there

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Old 12-28-2010, 08:51 PM   #2
Join Date: Dec 2010
Location: new york
Posts: 4
vegachka HB User
Re: CSF leak caused by tumour shrinking

Congrats on finding the tumor and getting it removed successfully. I had transsphenoidal surgery a month ago to remove a pituitary tumor. Took about two weeks to get my strength back and was in the hospital for five days due to developing transient DI, which resolved itself after four days, but otherwise doing okay. I also have a very very slow drip from my nose ever since the surgery and am concerned it might be a CSF leak. The ENT and neuro are attributing it to my wacky sinuses, which I've had issues with before and are monitoring me.

How did your surgery go? How are you feeling? Was the leak sealed?

Old 03-30-2011, 06:48 PM   #3
Join Date: Mar 2011
Location: Rockford Mi, United States
Posts: 3
pursable HB User
Re: CSF leak caused by tumour shrinking

How are thing going with you I have read your post and have been in the same boat as you with the pituitary tumor and the size. I was also losing my site and it wraped around my main nerve to my brain. What is this CSF leak you mentioned I have never heard of this.

The doctors have me on meds and have shrunk my tumor about 75% in about three years time, although still working on low T and the massive weight gain I feel Im getting back to normal. Prolactin levels are back to where they should be. Hope all is going good.

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