Pituitary Macroadenoma

[LadyMaigrey]

After 10 years of 4 day long catamenial migraines (7-8 pain level with nausea and vomiting, lousy weight loss program) I finally got an MRI. Mind you I have told my family and friends for years that brain tumors don't cause pain, so I don't have a tumor. Well I have a pituitary macroadenoma. The neurosurgeon has stated that it is a "bleeder" and I should have it removed. I do not have vision problems to date. I'm waiting patiently (not) for the HMO to give me permission to see an ophthalmologist and endocrinologist. I don't have the symptoms associated with prolactinomas. Should I wait to have surgery. I'm 45 years old. Not really looking forward to surgery and wondering if I should wait till more symptoms appear or should I do it now. The bleeder reference has me puzzled. Does that mean possible necrotic tissue in the tumor? I don't want to damage my pituitary gland any further if that is the case. I've probably read to much about this but I'm wondering if there are any other choices besides cutting into my brain, I like my hamster on the exercise wheel.

[clinicalguru3]

The neurosurgeon has stated that it is a "bleeder"

This is unclear...please upload the picture so I can take a look.

Have you had an endocrinology profile done...TSH, GH, FSH, LH, PRL, etc etc?
Have you had a computerized visual field test?

Thanks in advance

[LadyMaigrey]

I've got the film, I can scan it at work tomorrow. The tumor is right between the carotid arteries? I'm sure that's where they all end up. This past Friday I had the following tests run. ACTH, LH, 8 am Cortisol, Free T4, IGF-1, FSH, Glucose Plasma, Prolactin, TSH 3rd Generation.
Is there a specific view you'd like to see? I've got pictures of it from all angles. I only really know one angle that he (the neurosurgeon) marked on the MRI.
On top of it all I've got vestibular neuritis right now. Woohoo. My body hates me. Taking prednisone.

[LadyMaigrey]

Well if things don't just get worse. The company I'm working for is changing insurances. So can I live with this thing in my head for another year while I wait out the pre-existing condition clause, is it really that bad? I'm numb right now. I can't cry or get angry just numb. Here is a photo of the tumor and the carotid arteries. What ever advice you can give me is deeply appreciated.

tumor 1.jpg (239.46 KiB) Viewed 426 times

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I have not been to an endocrinologist nor an opthamologist. These were suggested by the neurosurgeon but no appointments have been set up. I must wait for the HMO to approve this and it usually takes about a month.
My insurance changes as of 8/1/08. None of them will be with my current Doctors, they are all considered out of network.
The out of network deductible is out of my budget. My only choice thus far is Kaiser Permanente which means traveling 2 hours away. At least they don't have a pre-existing condition clause. 3 people at work have to sign up for it to get it. Again I'm just numb.

[clinicalguru3]

Please let us know how the blood tests came out.

I would advise seeing a neurologist and getting a visual field test ASAP.

Let us know how it goes and good luck.

[LadyMaigrey]

I have appointments set up for an Endocrinologist, Ophthalmologist, Otolaryngologist and last but not least another appointment with the neurosurgeon. I have no idea yet how the blood tests came out but things are moving. I'm hoping to have the same Doctors when my insurance switches over on the first of August. I'll let you know what is going on as soon as I know. For the moment I'm trying to just go with the flow and not let it bother me that I may have to start all over again, at least I'll have all the tests done. Just don't want to end up at the hospital my Mother works at. She'll have me dead and buried. Not to mention driving my family nuts.

[LadyMaigrey]

Went to the endocrinologist and it seems that all the tests came back within "normal" range. He's ordered the same tests again to see if my "normal" is different??? All the Dr's have asked the same questions. Are you tired. Yes. Libido? No, give me a good book and you can keep George Clooney. Sorry George no offense. Leaking breasts only during my period. The migraine on Tuesday was a doosy. Two naratriptans later and I was okay. Now I'm wondering if these symptoms aren't symptoms and are just me. I'm lazy and uninterested in sex. Great if I was a nun. Next stop is surgery consultations with both the Otolaryngologist and the Neurosurgeon. If nothing is resolved after removing this thing I'm going to be really depressed.

[MG (Admin)]

Hard to know what the endocrinologist meant...do you have the test results with the normal ranges?

[LadyMaigrey]

Still waiting for results of second round of blood tests. Went to the eye doctor and everything is normal. No problems with my vision. I'm hoping to get my hands on the results from the first round of blood tests on Thursday or Friday. It's my blood but apparently top secret. I'm wondering after looking around at endocrine sites if I've ever suffered from apoplexy. My "migraines" have been bad. I only had one in my life that started in the daytime and that happened within 15 minutes. One stab to the right temple and I was on my knees. Slowly got back up and 5 minutes later another one knocked me to my knees. Slowly got back up, hunted down my husband in the aisles of the store looking like Quasimodo, my face scrunched up on the right side, found him, puked, grabbed car keys and made a beeline for the car. Once there I covered my head and begged "insert deity of choice here" for a quick death. My husband got me home and for four days I didn't leave the bedroom nor my puke pan. All other "migraines" have woken me in the middle of the night. Same scenario. I wake up my head is being stabbed and I puke. I've been to the ER once and that was a most unpleasant experience. Not to be repeated. I get "duh-phasia". I have a very difficult time with speaking, can't find the words. Nevermind numbers those evade me completely. The ER cashier asked for my social security number and I painstakingly told him my childhood phone number. I know my SS# and Driver's license number and every phone number of friends and family, but once I have a migraine it all goes away. My most recent GP took 3 years before he finally sent me to a neurologist. I called him every month for eight months straight until he would see me with a "migraine." After that he prescribed inderal which I had taken before and it made the headaches far worse. I told him this but of course what do I know. So I ended up with two of the "migraines" in one month. That's eight days that I missed work. So then he put me on verapamil and sent me off to the neurologist. I have high blood pressure normal systolic really high diastolic. So the verapamil seems to be working on the high blood pressure but I still get the "migraines" which I now have a prescription for naratriptan. I'm to take it as a prophylaxis each evening of my period but unfortunately my insurance won't cover anymore than four a month. Two will knock it back enough that I can get some sleep and not puke but I can't work. The phonophobia and photophobia are still pretty intense. So for two days I'm just blah, the other two days of these 4 day ventures into pain I'm back to begging "insert deity of choice here" for a swift end. As you can see I've had it. After 10 years I'm really done. I'm afraid that without symptoms the insurance will deny the operation. I want this thing out of my head so I can see if I still have migraines or not. I don't want any damage to my "master" gland or my optic nerve. Okay my rant is over. I'll go back to surviving what ever is thrown at me.

[MG (Admin)]

Attacks of migraines should not really occur due to a pituitary enlargement and it seems reasonable, if the story fits a migraine, to treat the headaches in any way possible...there are loads of meds that help prevent and treat attacks and I am sure your neurologist will try each in turn. In some cases there is a hormonal disturbance due to the pituitary secreting too much or too little of some hormone and this can trigger headaches or make them worse.

Going back to the pituitary...did you have a computerized visual field test?

When will you get the final opinion from the endocrinologist?

[LadyMaigrey]

All visual field tests came back normal. Thank goodness. The endocrine tests revealed that it's secreting growth hormone and ACTH. The surgery is being scheduled and I will be with the same surgeon and doctors. As far as calling it a "bleeder" he said it's fairly common for these types of tumors to bleed more than others. So at least I'm comforted by that. No apoplexy apparently.
As for the migraines if they continue after the surgery my neurologist is the kindest Doctor I've ever met. We have a plan that the insurance company doesn't agree with but I will fight them if need be. I take Amerge every night of my menstrual cycle as a prophylaxis. Currently the insurance company allows me 4 pills a month for $40.00, I need two more that I pay $31.65 a piece for out of pocket. $100.00 dollars to avoid the pain, vomiting and missing work. Gee that's a no brainer.
As for the tumor, I hope my pituitary functions normally afterward. I don't relish HRT for any length of time. I know that it sometimes takes a few months to kick back into gear. I wonder about recovery time. My surgery will be on a Monday. I'd like to get back to work the following Monday. Is that crazy? I sit in front of a computer all day. No lifting, just the occasional annoying client needing me to teach them something over the phone. My surgeon thinks that's a little optimistic but I really like my job and most important my paycheck. Going two weeks without pay will hurt. I wonder if I qualify for state disability for that short a time. I guess I'll find out. Thanks for listening to me rant.

[MG (Admin)]

Good luck and let us know how it goes.

[LadyMaigrey]

Well my new insurance company has denied my surgery. They will not cover the hospital. They cover all the doctors I have but the only hospital in the area that has the equipment to perform this surgery is not under contract. So I've filed a grievance with them and it takes 5 days to get an answer. I was to have my surgery on the 18th. If they won't cover it I have to travel two hours away to the only other hospital that has the equipment but I will have a whole new set of doctors.
Not to mention that my mother has just been committed to a county mental institution.
If anything else happens I'm going to flip out.
I'm trying very hard to keep a stiff upper lip but all of this at once is just a bit more than one human should have to deal with.
Sorry for whining but I really don't have to many outlets. Keeping up the cynical sarcastic humor is getting a little difficult.
I did point out to the poor schmuck at the insurance company that the "shareholders" would save money if they did not make me start all over again.
It did elicit a small laugh. Probably nervous.
Well that's my update. I hope no one else has to go through this. It truly sucks.

[MG (Admin)]

I am sorry to hear that....on what grounds are they denying you?

In my experience these things always work-out some how....hang in there!

All the best and be in touch

[LadyMaigrey]

I finally had my surgery and am now back to work. I went through a few bad things. One I ended up trying to drink to much water. I was really thirsty (Anti Diuretic Hormone went whack) a thirsty feeling like I've never had before. That went away. Two was salt wasting. Not exactly fun. After being released from the hospital 4 days after surgery, I went back a day and a half later. I was vomiting and felt confused, out of sorts. My sodium level was 110. After spending 5 more days getting sodium back into my body I got a bowel infection, not CDiff. Thank god. But that took another 3 weeks to get over. I'm currently on Levothyroxine. My labs are a little funny. Low TSH .296 and normal T4 and T3. Iatrogenic Sub Clinical Hyperthyroidism. So on Monday I guess they will adjust my meds or not. To all who have one of these in their head the surgery was a cake walk. My nose looks a little funny but hey I'm funny lookin' anyways. The aftermath not so much. Weird things can happen so pay attention to your body, and tell your doctor everything even if it seems trivial. Some of the symptoms are insidious. I'm glad to have my brain back and I haven't had a 4 day long headache in over a month. That in and of itself is a miracle. I'll take funny labs over 4 day long headaches and vomiting any day. Thanks for your support. I hope this helps someone in the same position.