I was just diagonsed with a pituitary tumor they have classified as a macroadenoma. The MRI shows that the pituitary bulges upwards and extends very close to the optic chias. The endrocrologist refered me to a neuro surgeon. He is the chair of nuero surgery at the Univeristy of Utah and specializes in pituitary disorders.
It looks like surgery will be the second week of June. The headache and vision change are making me crazy. I am exhausted and dizzy most of the time. While I am waiting for surgery.
Do any of you have any suggestions on how to handle the headache pain. I have had the same headache now for 24 days. I wake up with it, go to sleep with it and it never goes away. I have tried over the counter drugs and then they gave me tramadol and then loratab. Nothing has helped.
I am stressed out about the surgery and my condition, but if I could get a handle on the pain I think life would be better.
Have they done any hormonal tests to determine the type of tumor it is? Just knowing the size is one thing, but er, some can be treated with medication first to reduce the size and the pain.
Has this surgeon done more than 500 in a lifetime and 50 in a year? Has he a LOT of experience with macroadenomas? In the case of a tumor that you know that has invaded the optic chasm, I would suggest to anyone that I know to get the most experienced surgeon they can get and travel if need be. The prospect of blindness and stroke is very real in this case and your surgeon needs to know what they are doing. Experience tells. You also need a neuro-endo that knows how to handle your hormones afterward. It rather makes me wonder that you cannot tell me what type of tumor that you have as there are many kinds and they are all treated differently, and some are more difficult than others.
Rather than rush into surgery, I would do some research. But that is just me. I can understand the stress. I had two different types of pituitary tumors and the hormones drive you nuts anyway.
Thanks so much for responding. I had the blood work done and am going Monday to ask for a copy. My vision is making me crazy! My left eye is blurred on the outer primerater and there is usally a white dot in the middle that blurrs out.
I am always so tired. I slept 15 hours total yesterday and feel that I still am tired. Is that the hormones? I am so new at this.
The surgeon is listed on the Pituitary Network Association. I noticed there are 19 hospitals listed in the United States - and luckily the University of Utah was on the list - with Dr. Couldwell listed. With only 117 doctors listed I was happy he was there as well. (Thanks to you I found this site from another posting you made).
I was diagnosised in 1981 (I was 17) with III B e Hodgkins Disease. I had three months of radiation and six months of chemotherapy. The radiation was "total nodal", so the base of my skull was radiated. I have had a lot of lingering problems from this treatment, I went into ovarian failure (menopause) at 25, had to have a bladder repair, constant internal pain due to adhesions from all the surgery. So when a new thing like a headache that never goes away and my vision changing, I just ignored it until I couldn't take it any more and headed to the doctors.
Sorry for the epistle! I have done all of the testing, etc. meet with the neuro's nurse, etc. and have my appointment on Wednesday with the Dr. himself. Can you suggest what is most important to ask him?
Thanks for your response - I feel like maybe I am not so alone!
Being tired is hormones. Have you seen a neuro-endo yet? Have you seen a neuro-opthomologist for visual fields?
You could be starting hormones now for relief - sure, the doses would have to change after the surgery, but at least you would be safer as well, some hormones are vital for life and leaving you like this can be somewhat dangerous.
Just because a doctor is listed there is not a sterling guarantee - it is a start, but not a guarantee. My first doctor was listed there, and he assured me that I was not sick at all however, I see several specialists now that are not listed and got treatment, learned a lot, and finally got treatment. Too late as now I am disabled. There are good doctors listed, but well, the list is not a guarantee.
I would ask how many surgeries has has done, specifically how many macroadenomas, how many of this type of macroadenomas - and listen to his response to see if he is specific or if he dances around and gives you bunk about how any pituitary tumor is the same (different hormones actually do have different consistencies and some are more difficult to remove). Know if he does endoscopic, if he uses packing, what about leaks, how long in the hospital, diabetes insipides, etc.
A friend of mine had a macro removed a few years ago and they took fatty tissue from her stomach or butt or something and put it in her head to fill the spot the tumor was. i saw Rumpled posted about packing and thought I'd comment to that effect. :-P
I was diagnosed with a prolactin producing micro tumor in August. I have been having headaches daily now for 3-4 weeks, lactate when not on medication and perephial vision is less. No surgery scheduled as of now. Being tested for Cushings too.
Sorry had to take my cats to the vet.
Yes, I had a fat graft taken from my belly and put in my head (I made a lot of fat head jokes after surgery, but no one or under stood it... *sigh*) and the doctor will not, despite all begging, do a tummy tuck. Many try.
Get baseline testing by a neuro-endo before hand, then get good testing afterward. You will need a lot of attention afterward. You need to know what to expect afterward as far as restrictions (some allow saline spray, some do not), a cool humidifier really helps, some want you to sleep at a 35 or 45 degree angle, some allow you to go flat (normal) after surgery (usually you will have packing in the form of balloons or gauze after surgery). Some use stents, some do not. Get meds you need ahead of time if you need them after surgery - especially meds that are vital for life like thyroid and cortisol. Watch your electrolytes.
It kind of concerns me that you are working with a PCP and not a proper endo (not a normal endo but a neuro-endo) as post-op pituitary can be pretty complex with salt and thyroid and other issues.
The endo would not schedule me an appointment. My pcp sent all my reports to him and he referred me to the neuro surgeon. I have many questions! My formal appointment with the surgeon is on Wednesday. The nurse answered many questions, but I will be glad to finally get more questions answered.
I got the lab results and my prolactin level is 466.4. I am really finding out this is a bigger deal than I originally thought. I just wanted my headache to go away and eyesight to come back to normal.
Does the fat graft make it so that
A few questions - does your pituitary remain intact - or do you lose it? I am so new at all
You need to find another endo. It depends on the skill of the surgeon and the position of the tumor (not only up and down but it can be inside as well) as to whether or not you lose your pituitary. Few experienced surgeons will remove the pituitary - and none that I know of will remove it on the first surgery as losing all your hormones are catastrophic.
Ok, you have high prolactin.
There is a medicine (actually 2) for that. You can be started on that to reduce the size of the tumor and make the surgery easier, if not necessary! Why are they not doing that. That is standard. You can also have more hormones (I had two tumors up there) so I hope they ran other tests as well.
Your fat graft question was cut off... The fat is incorporated into the healing bone and goes away.
This is a big deal. It cannot be just handled by just anyone.
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