After seeking treatment for over eight months at a Military hospital for headaches and a host of symptoms that indicate a major hormone imbalance, they have now found a Pituitary Macroadenoma at about 1.4cm. Their diagnoses of this tumor is based soley upon one MRI without contrast. The results came back showing the tumor, and on March 30 they called me and told me to schedule a follow up MRI with contrast. Government healthcare being what it is, I was not able to get the follow up MRI appointment until day before yesterday. I have many questions but I will start with this: Can they accurately diagnose this as a non-functioning Macroadenoma with nothing more than an MRI without contrast? Furthermore, the initial hormone bloodwork they did all came back normal. But from what I have read, it may be that I needed an overnight fast for those tests, especiall the HGH test, and they specifically told me I did not have to fast.
I am waiting to see the Endocrinologist, but again, cannot get appointment until June. Meanwhile, I am suffering from a host of symptoms from headaches, to personality changes via the hormone imbalance (rage, crying, etc). I also cannot sleep more than 5 hours at a time, am having multiple menstrual cycles (3 periods in 5 weeks), memory problems, concentration, and maybe its nothing, but I can't communicate my thoughts when I am in conversation as well as I used to. Other symptoms too, but I am truly trying to keep this short.
My Neurologist has dismissed this tumor as insignificant, and states that it may be even treatable with drugs. He also states none of my symptoms are related to this tumor - not even the headaches. My research shows that every symptom I have can indeed be attributed to this tumor, and that the greatest threat from this tumor is that it may invade my optic chiasim or cavernous sinus. With the tumor at roughly 1.4cm I do not feel this is something to be ignored. My research also indicates my neurologist is wrong: Non-functioning tumors have demonstrated they do NOT respond to drug therapy. I have also learned that the distance from my Pituitary Gland to my Optic Chiasm is 8-14mm. With a tumor at 1.4cm, I do not feel I have a milimeter to spare while waiting for him to decide this matters.
Finally this is the same military base that sent my mother home crying with headaches for two years over thirty years ago. They told her it was menopause. In the end when her vision began blacking out, they diagnosed a giant brain tumor and she went blind from the surgery, died 10 years later of Lymphoma. Her mother, my grandmother, commited suiced in 1938 due to untreatable ovarian or uterine cancer. Her mother, my great-grandmother, had to have an eye removed because of a tumor. They are doing the same thing to me that they did to my mother 35 years ago: Dismissing her symptoms as menopause/anxietty and sending me home with a brain tumor.
Apologies for this long post. If anyone can please answer my questions about the diagnoses aspect of this tumor, I would be very greatful.
Another major concern I have is that this tumor did not appear at all on an MRI that was done this past fall in October. That MRI stated sella region was clear. Can it be this aggressive, or was it missed?
I think that your doctors are not experts in pituitary tumors.
Your symptoms can be attributed to the tumor, including the headaches. No they cannot determine the type of tumor by the MRI, that takes lab work, and it must be fasting. It must also be done at a particular time to be accurate.
A tumor that size, however, should be treated due to its size, as it may start to impinge on either the optic nerve or grow into the cavernous sella where it will become inoperable and require radiation.
Rumpled, these results are based upon tests werein I was told I did not have to fast, merely be there early in the morning (due to cortisol levels I believe). So I did not fast, and was there when the lab opened for my "early morning" blood test.
As for my headaches that they are dismissing as non-related:
I am not a doctor, but a picture of basic anatomy makes this pretty clear. My headaches started last summer as sharp shooting pains in my temples. Over the last several months, they have progressed to deeper pain in my temples, forhead, behind my nose and beneath my eyes. Mainly, in my temple area between my ears and my eyes. I look at a picture of anatomy, and it shows a side view of this area and indicates my sphenoid bone is located right where I am having these headaches.
I found out this morning that the reason the Endo scheduled me for June is because he reviewed my record - with the bloodtest results you are looking at. What is more, my record has no mention of my hormonal symptoms ( I was told to take black cohosh, and that was the end of that. No mention of any of my symptoms in the record except the headaches). The record also states that I have had a hysterectomy, both my parents are alive and well, and there is no history of cancer. Please see my family history above to realize how insane this is. I'm not sure how I could bleed for three weeks at a time if I had a hysterectomy. And I am the fourth woman in my direct maternal line to face cancer/tumors, my father is currently in remission with Colon Cancer.
I am dumbfounded and at a total loss. They have blown me off and refused to listen to me for 8 months. They drive you nuts, and then marvel that you become outraged and start demanding answers. Yelling? Yes, I am yelling. I have spoken softly for 8 months and it landed me right here where I am at, with a 1.4cm undiagnosed brain tumor on the verge of becoming inoperable, if it is not already.
Finally, I hope to get some answers this afternoon from the Neurosurgeon I am meeting for the first time today. He is a civilian, and off base. He did not recieve my totally flawed record, only my referral, and immediately had his office contact me to schedule this appoinment.
Also, the MRI with Contrast was done Friday morning, and will hopefully tell me more. I'm sure it will.
If you can make any sense of these blood results, I'd again be greatful.
Hi- so sorry to hear about your pituitary junk! But it is great that you are now yelling and taking charge. I would be so pissed if my medical records were screwed up
I first wanted to let you know that a 1.4mm adenoma is most likely operable if it is not wrapped around an optic nerve or carotid artery. I hope that your last MRI and this next neurosurgeon gives you more info about this. It may be that the last MRI did miss it? Sometimes adenomas burst, FYI.
I also suffer from headaches so I know that drill, ick.And yes they CAN be related to a pituitary adenoma!!! So don't let them brush you off on that one.
I wanted to let you know that you should also be working with a neuroendocrinologist re the hormones. One to help with your diagnosis and two to do a full pituitary workup. For example: to test for Growth hormone they look at another lab test which is called the IGF. But then something called a stimulation test has to be done to really know if you are low/high. It's info that a lot of internists or even regular endos don't know or think about.
Hard to tell from your labs because you did not put down the ranges. But I see that Thyroid and your sex hormones (LH/FSH) have not been done yet. These are important.
Well, there is news. And I am not sure what to make of it. I took a copy of Friday's MRI to the Neurosurgeon on CD. He said there was no tumor. He said I had empty sella syndrome and my headaches were due to my cervical spine. He also said that the miltary base did not do a complete xray on my cervical spine last fall. They only xrayed C6 and C7 - they did not do C1-C5.
Then I get home and look up empty sella and it says the headaches are caused by spinal fluid build up and pressure. It also says this condition can be related to obesity. Last year, I had a rapid weight gain of thirty pounds. I have lost twenty pounds since Febuary this year. What I read also says the cause can be a ruptured cyst. I have no idea what is happening to me, and I don't know if this is my spine, or a ruptured tumor, or a ruptured cyst, or what it is. My head is killing me, and I am done for today. Day after tomorrow I have to return to the base to get my Nuerologists opinion on the same MRI. A month ago they said I had a 1.4cm tumor. Now they say I have an empty sella. And I am beginning to have vision problems. Its like my left eye gets stuck, and I had a very brief split second moment of double vision today.
Horse, thanks for your input. I did not realize I needed to post the ranges. I thought they were standard for everyone. I have no idea how to read these bloodtest reports. I don't know what to do. I suspect when I report Wednesday its going to be another nightmare of no one listening and everyone telling me its going to be fine. Thats just not working anymore. I'm not fine. I am exhausted and in pain, and going to bed. I don't understand this, and the more I know the more insane it becomes.
Goodnight folks, please forgive this rambling. I"m done for today. I can't make sense of any of this, and I have had all I can handle for one day.
Just a quick clarify before I go to bed. There are two MRI'S. The one a month ago showed the tumor. The one from three days ago showed an empty sella. If anyone has any info or insight on this I would be very greatful. I can't trust what they say at the base, and when I go for my appointment Wednesday I really need to have my ducks in a row so I can discuss this with the Doctor.
Okay, now I'm truly off to bed. Thank you all for listening. Goodnight.
Horse may be right - you may have had pituitary apoplexy, which means the cyst or tumor ruptured, and why they cannot figure that out is beyond me.
Empty sella means the sella is filled with CSF - and they cannot see what is in there, something could be in there, squished, but the fact that you have two MRIs and two very different results means that you need help, and need it fast.
Before I say anything else, I want to say thanks to Rumpled and Horse - BIG thank you!
For now I will simply say that I just told my Neurologist he has lost his mind. My left eye is dragging slightly and not in sinc by a fraction or two with my right eye - especially when I look down - it moves just a tiny bit slower than my right eye, and I briefly see double for a second or two. It only happens when I move my eyes left/right, or up down. Not when looking straight ahead. I am having facial numbess in my left cheek also. He tried to tell me that now the MRI is "normal". And I told him it was not - unless you consider Empty Sella Syndrome to be "normal".
I told him I would not argue with him about it, and he asked me what I wanted him to do. I told him I wanted him to schedule an IMMEDIATE referral to an opthomologist, and to call the Endo he reffered me to as "routine" a month ago, and tell him I need to be seen NOW. He told me could do neither one, and there was nothing more he could do for me. He refused to give me a copy of last Friday's MRI report. Because of all of the above, we had a huge blow out argument. To make a long story short, in the end I looked him right in the eye in the hallway as I was leaving and loudly told him he had lost his mind. I hope the whole **** office heard me.
What he does not know is that the hospital commander is watching this all go down from behind the scenes. I filed a complaint last week.
I don't know what is going to happen now, but what I do know, is that this charade is now OVER.
Regards to all, and thank you - sincerely. I don't know what to do, but hopefully I will find out soon, and even though it looks like I may not have a tumor, I hope its still okay to post here.
Finally, if anyone has any insight, by all means, I'm listening.
I think the eye drag may be a form of Nystagmus, but I am not sure - I do know that with some pituitary tumors, the muscles in the eyes do get weak. So there are actually some docs that specialize in that testing, but I only know of one.
But yeah, he has lost his mind, however, it is debatable as to if he ever had one in the first place.
I hope you can get to a place where at least you can get to the testing where you can at least get to an understanding of what is going on...
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