A doctor told me that pituitary function might be affected if I have further surgery "but that's OK, because we can give you supplements to replace what you no longer produce". Fine for them to say that, I thought, they don't have to put up with the after-effects and all the trial and error of hormone replacement! I would imagine that in the event of pituitary removal, you'd have hormone replacement for the bits you no longer replaced. On that basis, you'd have the "poetry-making" hormones provided by prescription. As long as you don't end up writing poetry like a Norvartis chemist :-)

John

I met someone they was on their own with me and asked Im not sure what he said but theres something wrong.I looked at him and smiled .On the outside I can fake this conditon but to some I cannot fake what its done inside this conditon takes many things he could see.I have not had my gland removed the tumour started to rob me of my love for words and poetry.

Hello John
Thank you for writing!
My situation is so messy right now. I saw a surgeon in Denver who wanted to operate right away. He has only done 40 to 50 pituitary surgeries. I live in Colorado Springs, saw a different neuro surgeon he says it's O.K. to wait a couple of weeks he has done at least 400 pituitary surgeries, he is older.
Who would you go with?

Experience is definitely the thing to go for -- assuming the surgeon with experience of 400 has had good results. Sounds a bit to me like the one who wants to operate now wants to get some more experience under his belt.

I was told that things change in the pituitary very slowly, so for my money, a few weeks shouldn't be a problem. After I got to see the endocrinologist at my hospital, I went through several months of various tests etc before I was taken in to see the surgeon.

What is your gut instinct?

John

Hi John!
I wrote you a long email and clicked " send" I guess that was wrong. How can I get this email to you?????????????

Agree with John : experience of the surgeon is the most important. Urgency is only if your are getting blind (doen't seem as you write e-mails) or have severe headaches. Otherwise, few weeks won't change anything. The urgency might be for the surgeon who needs your money for his vacation in Hawai on August :))
Another thing is to talk about it with an Endo. A surgeon always wants to cut. An Endo can talk about a medication option. Many try injections for 6 months in order to shrink the adenoma before surgery.
Every case is different. What we all learned here is to take an active part in the medical decisions.

Hi!
The endo can't do anything at this point. The tumor is too large only surgery, I was hoping other options or the Cyper Knife. The tumor is filling the whole sella turcica plus some into optic chiasm that is why my vision is badand I can't turn my eyes anymore, for one. My adrenal glands have shot down and all hormones are off the wall, I am 65 and the numbers of the LH and FSH look like I am very fertile right now, best time to conceive.Tyroid tests are abnormal too. I am concerned about the surgery because off the vision loss possibility. Also the tumor borders on both side the cor.. artery.
I am so very upset about this because the tumor was already there in 67 very small. an larger in 04 double size since 04. The previous MRIs were done different it showed it adjecent to the pineal. The newest, last Month the MRI was ordered of the pituitary. I have struggled with this for many years, saw many doctors, carried my shoes to appointments, no help until I saw a new internist last month. She sent me for the pituitary MRI same day, she said she knew what I had as soon as she saw me.

mistake there 1997 not 67 sorry guys

Hi Ulrike, Im so sorry and annoyed, especially as you have had this so long, my daughters tumour is also wrapped around both carrotted arteries, it was also pressing on optic chiasm, it was successfully debulked from the optic chiasm, but is still on both cartiods. she had another surgery endoscopic, but they couldnt get anymore out, she has large remnant left, her eyesight is much better since the surgery, she has also had external beam radiotherapy, her tumour grew very quickly, the 2 surgeries went without any problems,at the moment she is not on any hormones. wish you all the best,

thank you for writing. My tumor seems to be the same with the car...arteries and optic ch.....decribed by the doctor. Did you ever hear about the Scull Base Institue in LA? They seem to have the best and newest methods. I am calling there tomorrow.
U

It sounds like you have a large tumour and one that is likely to cause many problems for you if not operated on.

Without wanting to sound dramatic, it is you who will have to live with the after-effects of the surgeon's (in)experience, so go with the best you can get.

My tumour was a mere 8mm, no problems with vision, no problems with the carotid artery (except to say that I had an unusually narrow pituitary fossa which make it harder work for the surgeon to get to it as he didn't want to hit the carotid!). I was fortunate as the surgeon at my regional centre (Oxford, UK) typically did several pituitary adenectomies a week, and had racked up around 400 in total. Even so, it looks like the surgeon may not have got all the tumour... so it's probably even more important for you, with a large tumour, to make sure you have the right experienced surgeon.

From what I have read, debulking of large tumours that cannot be removed completely is almost always beneficial. The residual tumour can then be treated otherwise (medicine, radiotherapy)

John

Thank you John!
I am going back to the neuro surgeon Tuesday to set date. Now I saw on the internet about the "Skull Base Institute" in Los Angeles. Did you ever hear anything about it?
U

Hi Ulrike, I hope you get some good answers let us know.

Hi Ulrike Ct, I went to the Skull Base Institute in LA a couple of years ago. At that time I went because I was mis-diagnosed with Trigeminal Neuralgia, so I decided to see Dr. Shahinian there. My experience was just OK. I take it you are in the LA area, why don't you try UCLA. That is where I currently get treated. Anyways, good luck to you, wish you and everyone all the best!

hi!
Thank you for writing. I live in Colorado. I have a macro Pituitary tumor needs to go. The Skull base institute has better, less risk involved surgery for these tumors. The Problem is they don't take medicare and my supplement. I have to pay all upfront. Now I have to go for more testing of the thyroid, tests so far point to thyroid cancer, now that on top of the pituitary tumor.