Within the last few months I’ve notice that my peripheral vision was not as good as I remembered it being. Cars would come out of nowhere, and I started bumping into things. Since I have scaring in the back of my left eye I just thought that was the problem, but since I needed new glasses I went to my eye doctor to see what was up. I got bounced around to two other doctors before finding out that there’s nothing wrong with my eyes.
The last doctor sent me for an MRI. As I have big shoulders I could not take being stuck in the MRI so I had to have an open MRI. A couple of days later my doctor calls me and says he’s already sent my information to Johns Hopkins. He tells me I have a growth on my pituitary gland and that’s pressing on my optic nerves creating my Bitemporal hemianopsia.
For the next few days I get about 5-6 different doctors calling me wanting to make appointments with them. Since at the time I didn’t know what the hell was wrong with me I didn’t know who to make the appointments with. Finally they get me to see a pituitary specialist and a neurosurgeon. Great, I think, not only can I not see well, now I need my head operated on.
Tuesday I saw both specialists. The pituitary doctor says that I have Prolactinoma, which is a benign tumor that secretes prolactin. He tells me that medication works in 80% of patients so an operation might not be needed.
Later that day I saw the neurosurgeon, he takes quite a while to look at my MRI results and when he pulls me in he tells me the same basic thing, except that my tumor is quite large, over 20mm and has a cyst in the middle of it. I then learn that I may need surgery since it’s so big, but they will try the medication first and watch what happens.
So I have taken my medication, and the first dose is making me nauseous. I also have another MRI in a few weeks to see if it’s gotten any better. If not I’ll be getting my head operated on, through my nose.
I’m just glad that there’s a reason for my vision loss and that it should come back. Though I have noticed a loss of my libido, it didn’t bother me as I don’t have anyone around anyway. If I do have the operation I’ll be off work for 2-4 weeks.
I think the best news though is that I’m not producing breast milk.
Dang, that’s scary!!! Hope you don’t need the surgery, but if you do, Hopkins is probably a pretty good place to have it done. Good thoughts headed your way…
Seriously tho, I’m glad you got a diagnosis and have a treatment plan laid out. Here’s hoping you respond well to the medication and if surgery is needed, I hope you have a speedy recovery.
There seems to be a larger than normal percentage of Iraq vets that are getting pituitary tumors. I know several. So when I started to get frequent headaches and other possible symptoms I went straight to the doctor and got an MRI about 3 weeks ago. Luckily for me everything came back normal. Most likely my eyes going bad on me. Before those vets and now you I never even heard of it happening to someone.
Before I get to the inevitable snide comments, good luck and good thoughts.
Now, is it lost on anyone that a pituitary tumor in some calling themselves Edward the Head is probably the ultimate in real life irony?
For once your ailment is physical AND all in your head.
If the prolactinoma makes your moobs grow, you might not ever leave the house.
All of the above with big helpings of and
A cousin of mine developed a pituitary tumor and acromegaly while serving as a missionary in Africa. It was a real PITA for him until he could get back to the US and have surgery. Once more, thoughts and prayers with you.
You do know, you have to name the tumor Edward, right? (I’m assuming your real name isn’t Edward… if it is, then you need to talk about “Little Edward” with a wink and a leer).
Well, that’s got to be scary! Hopkins is damn good at neurosurgery, though. My good friend recently had an astrocytoma tumor removed there, and she’s doing great. If you want any more info, feel free to PM me anytime.
Meanwhile, take it easy. I’ll keep my fingers crossed for you that the meds will be enough. If they’re making you extremely nauseous, there are other meds you can take to help with that, so be sure to ask your doctor about it if you’re having trouble keeping food (and the drugs) down.
I hope that’s the reason. Sorry you have to deal with this, but I hope the medication works and the inconvenience and procedures are kept to a minimum.
I hope the meds work and you don’t need surgery. But producing breast milk is not all bad. It burns about 20 calories per ounce. I shed a great deal of my pregnancy weight prettily easily just from nursing. When you’re producing upwards of 25 ounces a day or so it really helps you lose weight fairly effortlessly.
Seconding the opinion on Hopkins - never known anyone there for neurosurgery, but a colleague just had heart surgery there and I’ve gone there for another neurological issue.
Nausea: Look into whether you can tweak the dosage - either break it up into multiple smaller ones, or change the daily timing, or work up from a smaller to higher dose over a week or two; any of these might help the nausea. You can also try varying whether you take it with food or on an empty stomach (if the doctor permits - obviously that can impact absorption). I take a medication that causes nausea (Requip) and it’s a dance trying to remember to take it at the right time of the evening. Too early and I’m feeling queasy and flu-ish, too late and it doesn’t kick in in time for bed. If I get the timing right, it stops me from twitching and I get to sleep before the nausea comes on too strong.
There are also antinausea meds as Antigen says; Reglan (though that can have nasty side effects if used long term), Compazine, Phenergan are all well-known. All of those are dopamine antagonists and that might be an issue with your drugs - which I gather are probably dopamine agonists. I’m on a dopamine agonist myself (Requip) for Restless Legs Syndrome and the one dose I took of Reglan (doc pushed it), it basically wiped out the effect of the Requip - as I’d known it would, but I tried it to shut the doctor up. I pointed out to her that it was as if, say, I’d taken an antacid and washed it down with a swig of vinegar.
Zofran is another antinausea med that us RLSers ask for if needed - that supposedly has less effect on the dopamine system. I think I had a dose of it when I had surgery a couple years back (before I came around so I’m not sure).
Well I’m on my second time of taking the meds, and so far it’s much better. I even took the full dose this time, and while I did feel a bit nauseous, it’s not as bad. I think I might even be gaining a bit more energy. I haven’t sat around all day today, I’ve been painting. I wonder if things can turn around that fast.
I’m not so sure painting doors is very creative, but I feel good enough to actually do it. I was also good enough to listen to music and play air guitar.
I love pituitary adenomas. They have such a neat presentation. I can say that without being such a heartless bastard as the outlook is pretty good and management is with medication such as cabergoline.
My sister has one of those. Last I heard she was considering the surgery this fall, in part because the medication is hideously expensive, and their insurance stinks.
Good thoughts headed your way…
