Surgery Necessary?

[pacificgrrl]

Hi all, im so glad that i stumbled upon this forum.  I was diagnosed @ 18 with a prolactinoma that was seemingly symptomless until as of late.  I have had a recent ( last appx 3 months) sudden onset of symptoms, including severe migranes with vomitting, extreme fatigue, dizziness, hairloss, numbness below my left eye and pain on eye socket/ cheek bone.  Due to lack of insurance the last mri i had was @ age 22, untill now, when i finally was able to get into a PCP and was ordered an mri with the following results.  Perhaps someone that has been through this can make sense of what the rad. is saying.  From what i gather and what im reading in the forum, surgery is possible.  I meet w/ a neurosurgeon on monday, but im so anxious im just craving any knowledge possible.

pit adenoma located ant. and to the Lft of mid.  9.4mm x 1.3cmx1.1cm.  cystic change along ant margin.  medially on lft adenoma extends partially into the cavernous sinus region, marginating the left cavernous carotid.  the adenoma bulges tword the suprasellar region w/ no impression on optic chiasm.  

so thats my rad report, but my PCP states the above symtoms are not in any way related to the tumor and is treating me with preventative migrane meds, which just make my heart race.  Any suggestions, or words of wisdom would be greatly appreciated!

[rumpled]

There are often programs where you can continue getting medications, especially in cases like this. I hope your doctor finds you the help you need.

[pacificgrrl]

Thank you so much for you response.  Its encouraging to know that there are others out there going through the same things, or have already gone through them and can give me tips!  Ive taken both dostinex and parlodel in the past, but like i mentioned above, i lost my medical coverage through my parents, and i was unable to continue taking it.  I remember not tolerating the dostinex very well but the parlodel was ok from what i can recall.  Im not sure the type of surgeon im seeing monday.  But i will most definitely check his creditantials.  I just want so much to resume my life again.  As crazy as it sounds it feels like this has just moved in and taken over so to speak.  Just tuesday i went out on fmla and most likely short term disability to follow with my employer as im unable to safely drive without having a dizzy spell, and cant make it through the day without a dibilitating headache.  Now yesterday i began retaining water in my feet and hands.  Im just very scared, and not to sure what to do next, of course aside from meeting with the surgeon and hurry up and wait!  Again thank you for your kind words.  Best of luck in your endevors. :)

[rumpled]

Unfortunately, your PCP does not know pituitary tumors. You need to find a neuro-endocrinologist who does know them, as well as a surgeon that specializes in pituitary tumors, not just any surgeon will do.

I had a couple, including a prolactinoma.

Your tumor has grown down, and it is now grown around your carotid (most people know them as the large arteries in your neck). The cavernous sinus is a place where there are a lot of nerves and other blood vessels and it cannot be operated on - you will need to take medications or have radiation to reduce the size of the tumor there.

That being said, a prolactinoma generally is reduced in size by medication. There are two medications in use in the US - dostinex and parlodel so they are the best start even though yes, they both have side effects.

After you try meds, then you have to see if you have changes to the size of the tumor.

You can check with other pit people, but I assure you, your symptoms and probably many others can be attributed to your tumor.