Well, the doctor that ordered the MRI where they found the tumor said something that small couldn't possibly be causing my headaches (don't live there anymore). I believe I had an endo I was referred to there in CA say the same thing- was not cause of any of my headaches- too small.
The neuroendocrinologist I wound up with at Vanderbilt I don't think believes my tumor is causing any of my problems & doesn't believe surgery is necessary unless the vision is affected with pituitary tumors. She feels my tumor is non-functional, I believe. Since the radiologist, the neuro-endo & I think my tumor might be shrinking due to the latest 1.5 T MRI, I tried to get her to recommend a two year MRI f/up. She put 1-2 years on her recommendation. So, then I thought maybe I'd split the difference and ask for one in 18 months. Now with this 3 T scanner available (which it sounds like the hospital that has it says they pull the patient out normally to give the dye and then put back in... I asked if they could do it with pulling me out and they said if I wanted), well I guess I'll likely try to wait the 18 months, but it is a tempation.
Thing is, I don't know that I could have surgery because it sounds like it requires cortisone and I may be allergic in addition to making life a stressful nightmare from the way you guys talk about life after surgery. But I am on disability partly for migraine headaches, and it may be useful info to show a doc that there may be a connection with the tumor as a possible trigger (one of many) to some of the migraine headaches I suffer.
Surgi-
It is a known fact that Pituitary adenomas can cause headaches.Now whether your tumor is causing your headaches, who knows. But it certainly could be. What would be a reason to not believe this? Are you pushing for surgery because of your headaches and your doctor is not in agreement? The sucky part is that surgeries can make it worse (or better) depending on the surgeon and your situation.
Google "Pituitary tumors and headaches" TONS comes up. You can pull up a lot that you can show your doctor to prove this point. But then if the doc is so stuck on this belief, then I would want to change doctors. You should not have to be proving things that are known facts like that. It may be that the doc is simply not in favor of surgery and is just using this as an excuse.
Some docs just get so pissy when we use the internet to learn, but heck they can use it too to become better doctors. They can also read their medical journals and go to conferences too.
xx
Horselip
I too have been told that my tumor couldn't be causing any of my headaches. Wish I had something solid to see and show doctors, written by a medical professional they might respect that says they can cause headache, even if they aren't macroadenomas.
That made me laugh out loud.
Run, run away...
Alas, yes, they think of the size (which he admits he has not a clue, not a single freaking clue) but not the effect...
Thanks for the reply. I suspected he doesn't know what he's doing because I asked him what the size of the pituitary was and he showed me his little finger tip. I clarified it by asking is it 10mm or 1cm or what and he couldn't answer me. He changed the subject and asked if I had seen my tumor on the computer so he showed it to me and from what I could see it was somewhere between 1/4 to 1/3 the size of the pituitary. So...if you had a tumor on your lung that was the size of golf ball you wouldn't worry about it as long as it wasn't cancer? Sorry I'm being sarcastic....Sorry to vent on you...
I'm going to run away from him...fast
I just needed some reassurance that my gut was right....thank you, thank you
Non-functioning tumors are generally macro-adenomas.
It is a well-known fact that those tiny little monsters cause headaches - he should read more.
He should do blood work. Even though the name of the dang tumor is non-functioning - it has hormonal issues. But I guess he does not know that. What it is is a tumor large enough to press on the pituitary on so many places that it causes many hormones to NOT function so you would have abnormalities and in addition, you would have eye and headache issues. Again, he should pick up a medical book.
From a website:
"Non-Functioning Tumors (Endocrine-Inactive Tumors):
Pituitary Disorders
Non-Functioning Tumors (Endocrine-Inactive Tumors)
Categories:
"As their name indicates, these relatively common pituitary adenomas do not result in excess hormone production. Instead they typically cause symptoms because of increasing size and pressure effect on the normal pituitary gland and on structures near the pituitary such as the optic nerves and chiasm. The major symptoms of patients with endocrine-inactive tumors are those of pituitary failure (hypopituitarism), visual loss and headache."
"Symptoms of hypopituitarism may include:
* Nausea and vomiting
* Loss of appetite
* Weight loss
* Fatigue, decreased energy
* Decreased mental function
* Dizziness
* Joint pains
* Women: infertility, irregular or nonexistent menses
* Men: infertility, impotence in men, loss of body and facial hair
* Loss of sexual drive
Symptoms of pressure or "mass" effect
* Headache
* Loss of vision - loss of peripheral vision or decreased acuity in one or both eyes
* Double vision"
"DIAGNOSIS
Hormonal Evaluation
In patients with symptoms suggestive of pituitary failure (hypopituitarism), a complete endocrinological evaluation should be performed. These blood tests should include:
* TSH (Thyroid Stimulating Hormone), Free Thyroxine
* A.m. cortisol and ATCH (Adrenocorticotropic hormone)
* LH (Luteinizing Hormone), FSH (Follicle Stimulating Hormone)
* Estradiol (in women) or testosterone (in men)
* Prolactin
* GH (Growth Hormone)
* IGF-1 (Insulin-like growth factor 1). This is also called somatomedin-C.
Based on the results of these tests, additional hormonal studies may be ordered."
If you can get his comments in writing, I would turn him in to the medical boards for incompetence.