Pit tumor and headaches

[cbrn07]

I am 36 yof with my second prolactinoma I also have pseudo Timor
Cerebri w a VP shunt I have daily headaches and take pain meds daily and about every two wka end up
On the er bc i can't control them at home I am
A RN but can not wrk I have no
Periphial vision pass out and at times
Have spinal fld leak thru my nose. I have been
Told many times that pit tumors so
Not cause ha. Bull$$$$   Any suggestions on what to do. I have the body pain and sob that I
Read on here about but did not associate w the tumor. Is there ever going back to
Normal. I just want to feel better but thnk it is hopeless

[rumpled]

Psudo tumor is not a tumor, and I know at least one other person that had both but her tumor was Cushing's and her tumor was all over the place as well. It is seen so that is strange.

If it is wrapped around what you say - if there are not any operable parts then they are going to send you straight to radiation... so none of the prolactinoma meds are working to reduce the size at all? Or are the side effects too much?

Some of us get fifth nerve damage from the surgery - and that pain ***** wildly too... it adds to the pain you may already have. Have you tried nerve pain drugs?

[cbrn07]

I went to Ohio state in Jan. And have spot on may fifth w ha specialist saw a surgeon and am going to see him again and ask for another transphenoidal  neuro eye says he can't do anything bc of Timor on the optic chiasm. I don't loose enuf spinal fluid to cause a spinal headache. Just constant pressure all over and behind the eyes w daily pain waiting of 4/5. When it gets to what I consider 8 it's to the Ed for flds dilaudid and zofran. N which sum dr ***** about. Bc it's chronic. Umm yeah I have two brain tumors that's pretty chronic. I take lortab and stadol nasal spray at home. MRI shows 8mm tumor imp on carotid artery and wrapping around optic chasm. It is a prolactinoma but no one has ever seen a pt w both this and pseudo tumor cerebri. I am not ext overwt I live in the oh Bally where wv ky and oh meet thnx for the response

[rumpled]

Who the heck told you that pituitary tumors do not cause headaches? That is so old school... so you need to find a new pituitary endo first so you can at least get proper pituitary treatment. Are you at a pituitary center with a neuro-endo?

With the vision issues, have you found a good neuro-opthomolagist? What types of treatment are they doing since they are letting the tumor invade the optic chasm? That should not be happening.

It is not hopeless - but you need a better set of doctors. The leak can be controlled but it may have to wait until after the tumor is taken care of. Do you feel better laying flat, drinking caffeine?

I had both Cushing's and a prolactinoma - I had a lot of pain with mine. Have they tested you comprehensively? With a tumor so large, it may be impacting other hormones and adding more complexity. When was your last dynamic MRI?