OT: Anyone have a pituitary tumor?????

Discussion in 'Fibromyalgia Main Forum' started by kjfms, Jan 12, 2006.

  1. kjfms

    kjfms Member

    I have just learned that I have a pituitary tumor.

    If anyone has PT can you tell me what all you had to go through? How it affected you health and anything else you want to share.

    Thanks,

    Karen
    [This Message was Edited on 04/17/2006]
  2. darude

    darude New Member

    They did an MRI last march and found Pituitary tumour and 40 other hypertensities! First they said it was a pituitary microadenoma 7mm and then said was a proteinceous cyst. I am waiting for the third MRI for a more detailed look at it. Neuro said other lesions normal course of aging. Can cause all sorts of problems so I am anxious fo find out. What is yours and what are they doing about it. I will ost some info I have on it for you. there are other on here that have them.
  3. darude

    darude New Member

    Like Wake all my symptoms started with the pituitary tumour too!!!!
  4. kjfms

    kjfms Member

    for replying. My headaches have changed over the past few months. I had an MRI 2 years ago and there was no evidence of the tumor. This was spoted on a CT scan and I am scheduled for an MRI on the 01/16/06 so that the physician can get a better look at it.

    This all started because of lactation (I had a hysterectomy) I had a Mammogram which was fine then the CT scan to check for any abnormalites of the pituitary.

    I really do not know enough of what is going on with mine yet. I only learned this yesterday.

    Thanks for the input,

    Karen
  5. darude

    darude New Member

    Keep uss updated. Very interested in this!!!!!!!!!!!!!
  6. kjfms

    kjfms Member

    I will update.

    Thanks,

    Karen
  7. ibisgirldc

    ibisgirldc New Member

    Yep.

    After the lactation, no sex drive, no period, and then the MRI, I was diagnosed in 2000 with a 4-5mm producing microadenoma. The prolactin never got higher than 44. Sick on dostinex so I took permax instead. That reduced it to 2-3mm and the periods, etc went back to normal, so they took me off of it. (I developed a whole bunch of ailments since starting treatment for the tumor... but the docs say that they're unrelated. Hard to believe some days...) I've been off of the meds for two years and started producing milk again, my chronic migraines have gotten worse... and since it was time for another MRI anyway, i got one last month. It's grown to 5-6mm, but the prolactin is only at 16. I'm gathering my info for a surgery consult and starting my appts with various doctors to decide what to do next.

    A few things to note:

    1)no one's been on any of the three meds that you can take for a lifetime so while meds is usually the first thing to try, don't be alarmed if they take you off of them at some point, e.g., if the tumor shrinks. Various docs told me that it's slow-growing enough that you can go off for months or years and it may or may not grow again. (Mine obviously has.)

    2)get a second and maybe a third opinion after your first doc tells you what your options are. You want to be certain that your mri was read correctly, that the suggestions about gamma knife versus skull-base versus drugs are the right ones for you. (And whether radiation therapy will be needed post-surgery if you do it)

    3)depending on the mri, they might have you get an optic screening. If the size or location is in the wrong place, you'll have or get vision problems. And that diagnosis changes the treatment advised.

    4) on gamma knife, I've heard different things. Yes, it's simpler to do, but then yes, if they screw up, it's easier to destroy the whole pituitary. And yes, it's outpatient and you can be back at work the same day, but as one radiologist said to me (the head of radiology for a famous NYC hospital - friend of a friend), the method is so new, no one knows for sure the effects of using even the targeted radiation in your brain. I'm still debating which I'd do if I do surgery.

    I'll post more if I think of it...

    Good luck!
  8. kjfms

    kjfms Member

    Thank you so much for the information.

    Karen
  9. TXFMmom

    TXFMmom New Member

    I became lethargic, started gaining weight, etc. and my doctors ignored it. They told me I was trying to be Super Woman. This was in 1986.

    I developed more and more fatigue and even had some milk. they then said it was just "female."

    Then, in 1988, I had an early melanoma and they did scans of everything. The neuroradiolgist who read my brain scan, and whom I knew from giving anesthesia to his cases, looked at me and said didn't you tell me you had been tired, listless, trouble sleeping, fatigue when you had been very energetic? I said, okay, has it spread to my brain?

    He said, no, but you had a pituitary tumor, probably an adenoma, and it appears to have infarcted and from the looks of it, it took part of your pituitary with it. The pituitary lies in this little area called the cella tursica and my, by tha time, small pituitary had been shoved to one side, indicating that I had experienced a space-occupying lesion.

    All tumors require more blood flow than does normal tissue, and this one had outgrown its' blood supply and had infarcted, like a heart attack, and died. The problem was that it had infiltrated my anterior pituitary and when it died, so did part of my pituitary.

    They tested me and put me on thyroid. BIG WHOOPY.

    The pituitary controls EVERYTHING, and mine now has ALZHEIMER'S.

    I think that is at the root of why I developed FM. My HGH level was so low, that when my Rheumy sent it to Dr. Bennett, in Oregon, he grafted it and said I would have to be 104 to have one that low. I FEEL THAT OLD.

    I can't take HGH because of the melanoma history. If I could, many endocrinologists and my Rheumy predict that I would start to sleep, loose TONS OF WEIGHT, feel MUCH better, and maybe go into remission. NO ONE WILL GIVE ME HGH, HOWEVER, EVEN WITH THIS DOCUMENTED, EXTREME ADULT DEFICIENCY BECAUSE RESEARCH HAS CONNECTED IT WITH STIMULATION OF TUMORS.

    Melanoma's are very squirrely and aggressive, so it could stimulate a metastasis or the development of a new one. My Aunt died with melanoma of the colon, which is very, very rare, and we have been able to trace it to several others in the family, so NO ONE IS GOING TO CHANCE IT WITH ME.

    Now, I have the choice of feeling absolutely awful every day of my life, or possibly getting the melanoma and cutting it very short.

    Frankly, I am beginning to feel that two years of feeling good might outweigh the death part. My mother, however, would be crushed, so I have decided not to try it until she passes.
  10. darude

    darude New Member

    This has been mentioned to me. I will take it if I can get it but heard is very expensive. Is tha right!!!!!!!!!!!!!!!
  11. kjfms

    kjfms Member

    ...what is HGH? Is it one of the medications used to shrink the Pituitary Tumor? I hope I can take this, I would love to feel better. I guess I won't know anything until Tuesday...sigh...

    The reason my PA even looked for a PT was due to lactation and change in HA's. I want to thank you all for the answers and support.

    Thanks,

    Karen
  12. darude

    darude New Member

    Just posted info on HGH
  13. darude

    darude New Member

    Whats HAs ????????????????
  14. kjfms

    kjfms Member

    ...when typing I have a tendency to revert to my medical coding experience. HA is headache. I had to think on the HGH and naturally it came to me after I posted..ha, ha.

    I was in medical coding for over 2 years at a 3 facility hospital. I am trying to study in order to become certified-but it is rather hard with everything going on. For anyone who doesn't know what a medical coder does, it is basically asigning numerical codes to the diagnoses (Dx) and procedures that physicians document in patient's charts. I really enjoy it. The codes are on hospital and physician's insurance forms.

    The code for Fibromyalgia is 729.1 Myalgia and myositis, unspecified. Just a litte side bar...

    I saw the post on HGH, thank you.

    Karen
  15. kjfms

    kjfms Member

    ...were you headaches real bad and did you nose get stuffy or run a lot?-mine does.

    Karen
  16. darude

    darude New Member

    Headaches were horrible like brain exploding could only pace up and down. Daily didn't go away for months pure agony. Also yes I had stuffed nose and ears and nose ran and bled sometimes. A nightmare it was.
  17. darude

    darude New Member

    I would definately take a shorter lifespan than living with this. THis is NOT living!
  18. ibisgirldc

    ibisgirldc New Member

    Look, pituitary tumors are, in the general scheme of things, not a big deal. They are for some people, especially if they become out-of-control macroadenomas... if they press on the optic nerve... if, as in the case noted above, there are rarer complications combined with other major medical issues... etc. But more people have them and will NEVER know about it b/c they cause no symptoms than will have to undergo surgery because they're forced into removal. (Check www.pituitary.org for more info.) And they're generally slow-growing so you have plenty of time to think about your options and to seek additional medical opinions. It's something to worry about and to get checked and taken care of... but not to fret about like we have cancer or other ailments. In a way, we're lucky; there are a million other worse tumors that we wouldn't want to have.

    (BTW, I'm pretty sure that every pit tumor shows up on an MRI as pushing the brain stem to one side. That's how they know that you have one. They'll do the MRI with contrast, and then using the computer, it will measure the size of the tumor and give the doctor - your endocrin/neuro - a better view of the exact location.)

    That said, it's freaky to know that something is growing in your brain. And the medicines don't work well for everyone (as dostinex did not for me). And if you have to do surgery, regardless of which type you choose, it could involves radiation and anesthesia which both carry risks. And yeah, the hormones thing does screw with your body. So it's not a good thing to have and personally, i wish I never got one,... but again, we should be thankful that of all the brain tumors that one could have, we have this one.

    So the thing said above about if you produce milk then they'll have to take it out: That's ridiculous - at least stated alone. If they're saying simply that lactation means surgery, then get another doctor. You can take parlodel, dostinex or permax to shrink or control a prolactin-producing PT. Now if those don't work or you can't takle them for some reason or if there are other reasons that you need the tumor out, that's a different story... but again, lactation is not in itself a need for removal.

    My advice is to do some online research. You can check pituitary.or, any of the brain tumor associations, search google/yahoo for hospitals (like UCLA, mayo, hopkins, mt sinai in NYC, UVA) that specialize in pit tumors and skull or cranial-base surgery. You might also look for neurosurgery programs that offer gamma knife. Each of those latter two will offer you information about the tumors, the risks, why you'd do surgery, etc. If you can consume the more medical terminology, try looking at medline for some of the related studies.

    (JMO, but i steer everyone away from UVA. Mary Lee Vance and Edward Laws may be experts in the field, but based on my experience, they were so protective of their research conclusions that they refused to accept that anyone (namely, me) could demonstrate symptoms that were deemed rare by their studies. And they told me that if I had to have surgery, then I'd never have kids (bogus according to everyone I've since seen). And never mentioned gamma knife as an option. As the head of another pituitary clinic put it when I told him this story, "it's not surprising knowing their egos." I'm sure that other people have had great experiences with them, but that's mine.)

    Oh, last thing: headaches... some of that depends on how big, pressing where, etc. But yeah, since mine got bigger again, I've had non-stop migraines for months now. Thing is, it's not the tumor per se. We're screwed up with FM (at least on this site, FM or CFS), with hormonal stuff b/c of the tumor, with stress from the tumor and the rest of life, sleeping problems b/c of FM/CFS, lack of exercise b/c we're sick all the time, probably bad eating habits in many cases (that's me), and so on... so it's a bad cycle that's just made worse by the tumor - especially if you were already a chronic migraine sufferer before your tumor showed up. (BTW, b/c these can take years to grow, you probably had this for years before the symptoms started to effect you. So again, it's not the tumor itself, but other stuff.) Point is, it's usually hard to say chicken or egg with this sort of tumor.

    That's my best advice: do more research, thank God or Bob or whatever that your brain tumor was this sort and not another, and seek out a few opinions before deciding how to proceed.
    [This Message was Edited on 01/13/2006]
  19. ibisgirldc

    ibisgirldc New Member

    Oh, and getting it taken out is no guarantee that symptoms, etc go away. In fact, many grow back after a few years. It's a solution, but not necessarily a perfect one.
  20. kjfms

    kjfms Member



    ....observation, naturally I have done my research, but I was looking for personal experiences-which are not in medical publications.

    I am aware that PT's are for the most part benign and that surgery is all dependent on size and location. The pituitary is located at the base of the brain, not actually in the brain, but still connected, just a little side bar. :)

    I aware that this is an FMS/CFS site (I have FMS) and it was not my intention to take away from that, however, I didn't see any harm in asking for personal experiences. I should have posted OT on my subject line. :)

    Naturally I am very thankful it is not a more serious tumor.

    Have a nice day,

    Karen