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long recovery from surgery
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long recovery from surgery

I'm still having headaches over a year after my second surgery to remove a 4.5cm pituitary adenoma (non-functioning). After reading several helpful posts here, I've made an appointment with my ENT this afternoon to check for CSF leaks.

My nose does leak a bit every time I eat, but I was never able to collect enough for the doctor to analyze. Yesterday I started sensing a metallic taste, and after reading some things here decided I'd better get it checked for real.

I've had severe headaches every single day since the first surgery in 2011. Finding a possible cause makes me both excited and uneasy. I do hope the doctor can find a solution.

Thanks to everyone who posts here.
8 Comments Post a Comment
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5001319_tn?1362155591
well, nevermind lol. Doc says it's definitely not a csf leak after looking at the surgical site -- nobody can figure out why I still have headaches yet. Going in for extensive allergy testing on March 20.
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657231_tn?1390151580
Um... I may only be a patient but the surgical site can only be seen if you are knocked out and they use special tools. I know my ENT would use the scope and go way up but no way he could reach the sphenoid sinus in the office. So I am not going to accept that he looked at the site, but hopefully he looked at the discharge.

Also keep in mind some docs, not all, think a leak is personal affront and that is cannot happen... it may not be a matter of surgical skill but sometimes a matter of anatomy and an existing psuedo-tumor (among other reasons) so in the past I have had other friends have an issue getting attention for leaks.

Do go to the ENT and make sure nothing is going on and the ENT can also do a bit of cleaning out. I can sadly tell you that it is not fun to get a clean out post-op (take a driver, and pain meds before it happens) and take it easy. If you still have a persistent leak, try to get in to the ENT sooner or be persistent with the surgeon about what is coming out. Check out tricks I have posted before like caffeine, laying flat or checking the fluid for sugar or how it acts on a coffee filter.

Do also remember that you have had major surgery and even though you don't have a bandage, take it easy. Plus your hormones are likely adjusting. When is your endo visit?
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657231_tn?1390151580
Oh and DANG that is a BIG tumor...
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5001319_tn?1362155591
Thanks rumpled. It was the ENT that said it's not a leak -- he stuck a scope way up there and said he could see the site -- I suppose maybe he saw the nasal end of it. He said that the patch looked good, and he had me bear down to see if there were any leaks at the patch -- which he said he didn't see.

I will try the sugar test, or maybe coffee filter first (I did read your previous comments about those techniques).

The thing that made me call them again was the fact that usually my head doesn't ache much, if at all, when first waking in the morning, but after being up and about for only 10 - 20 minutes the headache starts in. That and a recent metallic taste, though that seems to have subsided now -- my wife pointed out that I've mentioned it in the past -- I don't remember, but I don't remember a lot of things anymore.

It's been over a year since my last surgery, and I understand that things take time to heal up -- it just seems like a long time to have a headache that hasn't improved much in that time.
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657231_tn?1390151580
Maybe your ENT has a different scope or your anatomy is different but I know mine could not...

A year would be too long to heal - surgical healing takes about a month or so. I know in some it can take longer - I know I took longer as my tumor impacted me healing before surgery so it impacted my healing overall - but since your tumor was a non-functioning one (I personally think that name so belies the impact it has!!!) I don't know what hormonal impact you had before and the symptoms you had and if immune issues was one.

Hormonal healing though can take a long long time - so do you have a neuro endo who follows you and makes sure your hormones are ok?

BTW from what I know, which is not a great deal, leaks can be... sporadic - in that they can vary in intensity so one day you can be a lot worse. It would also be odd, that after a year, that your patch would still be there. My surgeon told me that my patch would be absorbed in a short period and bone would form over. They only make a little hole.  I have a pic of my surgical site in my pics.
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5001319_tn?1362155591
I do have an endocrinologist. The only thing that's a little out of whack now is low-T. I tried shots for a while, but found that it's not really worth the hassle (it's only slightly low).

My plan for now is to get the allergy screen done and follow-up from there.
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596605_tn?1369950227
ve battled CSF leaks. Taking a "look" won't really tell u much if u have a slow leak. Unfortunately the definitive test is a lumbar puncture to test ur CSF pressure. They kinda suck, but if u really want that ruled out then its a test that needs to be done. I had a leak still two years after my pituitary surgery but it was slow and not obvious aside from postural headaches.
good luck
Horselip
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657231_tn?1390151580
For a slightly low T - why not a compounded gel or one of the gels that are available from the big pharma companies?

I do find it odd that you don't have low growth hormone or low thyroid - post op those are usually the first to go. My TSH is super low. That is pretty standard post op pituitary.
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rumpled
Northern, NJ