Pituitary Tumor Support Group

I was diagnosed with a pituitary tumor just over a year ago. My gyn did a full blood panel and found that my prolactin level was high. I was sent for an MRI and was found to have a 16 mm tumor. My neuro surgeon said that I needed surgery as I was beyond the time that the meds would help. The tumor was pressing on the pit stem and they were hoping that it would allow the pit gland to be able to function normally again. At the 6 mnth check up it appeared that the tumor was growing again. By the 9 mnth follow up it had become apparent that the surgery was not a great success as the tumor was regrowing and none of the symptoms were relieved. I am now scheduled to have another surgery on the 10th. I am scared as they have said that this time they will have to be much more aggressive on removing the tumor. The only problem is that the tumor is pressing on the optic nerve and am very afraid of the losing my eyesight. I don't know what to do or how to handle this. When I originally saw the surgeon he assured me that normally speaking after having the surgery many never have to have it again and if they do it is years down the road yet here I am less than a year later going back in for the same procedure. I am sorry for all the rambling and am not incredibly sure that this is cohesive or makes any sense... I just need someone that understands and maybe able to offer some advice?

Post edited by: confuzzles, at: 11/05/2009 10:21 AM

Sorry to hear you have to go through the surgery again, soooo soon.

My tumor had stretched my optic nerve sooo much, the surgeon couldnt see it on the MRI.

My optic nerve is damaged.. but because of the stretching, not from the surgery.

And, no need to apologize for the rambling, we are a very supportive, and understanding group.

Brenda

I don't really know what they mean. I go to St. Josephs hospital in Tucson Az. I did have a lot of confidence in my neuro team before this last surgery but am now not so sure. My tumor had completely regrown and from what the surgeon said my body had healed off the tumor to the point that there was no evidence that I had had a prior surgery. The day that I was sent home he said that the next step will be gamma knife. I am 24 years old and have always kind of just done what the drs said was necessary but now I am not so sure. I have lost faith in my drs and their teams. I just don't know where to go or what to do. No one that I find that has had this kind of tumor has had the issues that I have had so therefore are not really able to give much advice. I just don't know what to do when the surgeon said he would be more aggressive I have no idea what he meant. The last time I had the surgery he was very helpful and informative, this time he has been short and makes me feel like an inconvenience. Sorry I wish I had more info to give you but this is all just a huge nightmare for me and I don't know what to do...

Wow...

I don't know what to say. Everyone that I've spoken to has said the same thing, we need to have confidence in our neurosurgeons. I'm sad to read that yours is treating you like you are an inconvenience.

Out of curiosity, have you thought about perhaps making a drive/flight to Los Angeles? I consulted with neurosurgeons at UCLA and Cedars Sinai and they are both GOOD. If you would like their contact information I can PM you. They also said that recurrent tumors can come back 10-20% of the time IF the first tumror was not completely removed.

I'm sorry, the above isn't advice. I'll keep you in prayer and as cliche as this will sound, you will get through this.

My neurosurgeon keeps telling me that it is not possible to get all of the tumor. I want to get a second opinion but am not really sure how to make that happen? I have an appointment with my pcp on the 24th and plan to talk to him and get his opinions regarding a 2nd opinion. I am going to see the neurosurgeons pa tomorrow due to the extra pain and congestion this go round, but he has always been rather impossible to talk to as well. Thanks for the info and I may need to get info on the drs that u suggested but unfortunately I am also financially strapped due to all the health issues as well. I just don't know where to go from here...

I just had my second pituitary tumor resection done on March 3, 09...I asked them to take the whole thing out...as if cushings isn't aweful enough..to go in and have those terrible thing stuck up your nose again!

When was your 1st surgery? How are you feeling after the 2nd surgery?

hello...first surgery was 4 years ago...i went through that much easier than this last one.My doc says its because they removed the whole gland. I'm having a hard time still just feeling crappy, the weight is falling off again like it did in 04. I hope this is it. I do however have thyroid disease also. I have alot of joint pain and nausea, memory loss..flu like symptoms. They say it can last up to a year. I just push through it..

I know what you mean...a nightmare to go through it again. I told them to take the whole thing out!I don't want to go through this again. I'm here if you want to chat about it..