It's Just in Your Head

Here's a recap from a previous post on what some of my symptoms were before my brain (pituitary) tumor was discovered and the difficulty I had getting a doctor to look for root cause of my problem(s):

"...I began having severe headaches shortly after we moved from California to Texas in 1999. I had no history of headaches, so a CT scan was ordered by my general physician. It came back 'normal.' At this point, my doctor assumed, and so did we, that the headaches were allergy related because this all started after our move (the area is awful for allergies). I never vigorously pursued another answer for the headaches after that, although I mentioned it whenever I went to the doctor. I frequently took naproxen sodium whenever I had a headache, which helped me relax and drift off to sleep.

In addition to my other symptoms, I developed chronic (left) ear pain. For almost two years, I visited several doctors, including two ENTs and a TMJ physician, to find the cause. The TMJ physician said I didn't have TMJ (took x-rays, etc. to rule it out), but the ENT (who referred me to the TMJ doc) insisted I had the problem. I asked if he could order an x-ray or something to look deeper in my ear, but he felt there was no justification because I had a "classic case" of TMJ. He didn't think it was necessary to look any further until I went back to the TMJ doctor for more testing. Finally, I decided to get yet another opinion from a third ENT..."

What I didn't expound upon in this earlier blog post is what transpired with the second ENT, Dr. B, before getting a third opinion. After being told by Dr. B that there was "no justification" for an x-ray or MRI, he told me not to go to another doctor because he would only tell me what I wanted to hear. Dr. B knew I had gone to several doctors before him, and I had been diagnosed with all sorts of things, including an arthritic jaw, ear travelers syndrome, otitis media, and TMJ. It was becoming obvious I was annoying the doctor with my ongoing concerns and acting a little crazy because I had seen so many doctors. He mentioned his TMJ patients were his most difficult because they never think their problem is what he tells them. He insisted I go back to the TMJ doctor and have him take another look before anything else would be done. What was frustrating was I went to the TMJ doctor on the top of the list Dr. B gave me because his opinion was held in high regard. When the TMJ doctor said I didn't have TMJ, Dr. B insisted I return for the diagnosis. There was no other possible explanation for my symptoms.

I was discouraged and embarrassed by the ENT's remarks so I waited about seven months before I dared to make another appointment with the doctor. The headaches and ear pain persisted, so I made the return appointment with the TMJ doctor. Fortunate for me, the day I had my appointment, the doctor had a stroke. I was walking out the door to the doctor's office when the phone rang, and his receptionist told me my appointment was canceled until further notice. At this point, if I were to return to Dr. B, it would mean I had to seek another TMJ's opinion before returning. Reluctantly, I decided to get a third ENT opinion instead. He differed in thought about the TMJ diagnosis because the specialist had ruled it out. He didn't see my need to go back for a second work-up. His conclusion was we had to think worst a case scenario - that I might have a tumor causing the symptoms. He ordered the MRI that revealed a 2.5cm tumor under my brain, wrapped around my pituitary and growing into the left cavernous sinus.

The doctor called me less than 24 hours after the MRI was done and told me about the brain tumor. After our discussion, I instant messaged my husband at work with the news. He was joking with me at first because he had been teasing me that it was all in my head. How could so many doctors not know the cause of my problem? Our conversation went something like this:

Me: Just got off the phone with the doctor about my MRI

Dave: Oh, what did he say? You have a brain tumor? LOL

Me: Yes...

Dave: LOL

Me (crying while typing): I have a brain tumor.

Dave: No, seriously - what did he say?

Me: I'm not kidding...he says I have a brain tumor.

Dave: ??

At this point Dave picked up the phone and called me. His boss was very understanding and sent him home to be with me the rest of the day.

Dr. B's remark about my numerous doctor visits, "...they'll just tell you what you want to hear," was not valid. I wasn't given definitive reasons for the persistent headaches and ear pain - just theories. For example, I was told by the first ENT that "chewing gum causes headaches." He diagnosed me with an arthritic jaw and then handed me a powerful prescription (I never filled) for pain medicine (later taken off the shelf by the FDA) to cope. If it worked, we knew that was the problem. Explanations like this made me pause and think about getting different opinions. I'm sure there are hypochondriacs doctors encounter, but my common symptoms were related to an uncommon disease. I happened to be that freak rare statistic patient that no one expected. Seriously, I would've preferred a better explanation for my symptoms, but everything made sense the day I learned about the tumor. I felt vindicated because it was revealed I wasn't crazy after all.

Endo Update

The drive was easy, the weather was pleasant, and I visited with some friendly folks while I was at M.D. Anderson Cancer Center. It is a nice hospital, and the staff is helpful and accommodating. It was, however, rather somber because it was evident that people were fighting for their lives everywhere I looked. Other patients I met traveled from out of state to see a doctor about their problems. I didn't feel like I belonged there and kept thinking I was not that sick. Even still, I had a good experience, and I am glad I moved my follow-up care there.

First, here's some pictures from my trip to Houston:

It was icing over in Dallas when I left...

but it looked like spring in South Texas!

Here were some of my questions for the endocrinologist and the answers I received:

Q. Is there any sign of pituitary failure or hypothyroidism? No, my thyroid is functioning well - all the labs came back normal.

Q. I was not able to nurse my daughter beyond 7 months postpartum because my milk production was so low. Why did this happen? He really didn't know - there is no evidence that suggests an existing pituitary condition caused this. Sometimes it just happens.

One of the reasons I went to M.D. Anderson looking for a new doctor is because my endocrinologist in Dallas said that a normal IGF-1 means there is no tumor. Therefore a patient doesn't need to have the Growth Hormone Stimulation Test. He believes a normal IGF-1 is sufficient to determine whether a patient is in remission from acromegaly. While I understood what he was saying it was a red flag to me because I had a normal IGF-1 with an abnormal GH test before surgery. My new endo says I have residual tumor, and he spent a lot of time explaining what he thought was going on. When I saw him last month, I didn't have my past MRI scans or records. I mailed them after my appointment and have been waiting for his response to my other questions:

Q. During my appointment it was mentioned that you think I have residual tumor. Now that you have reviewed my medical history and MRI scans do you still have this opinion? The doctor suspects there is residual tumor in the left cavernous sinus and that it is non-functioning or making GH to such a small degree that it's clinically irrelevant.

Q. Is a nonfunctioning/functioning tumor "better" than a full blown GH or prolactin tumor? Is it less agressive because it is only partly functioning? Nonfunctioning tumors can be aggressive in terms of growth (hard to predict) but my tumor is not clearly overproducing GH to warrant medical therapy. The plan will be to carefully monitor the residual tumor's growth, and if that happens, we can consider radiation.

The doctor believes there is evidence of residual on the MRI scan even though it is not seen in the blood work. I am over the shock of hearing that I have tumor, so I was not upset when he told me this. He says my tumor is partially functioning, which means it was not consistently producing excess GH or prolactin presurgery. He believes there is evidence of this in the tumor pathology and that I had a normal IGF-1 lab before the macroadenoma was removed. He thinks the residual left is not functioning right now, which is why my blood work is normal. The tumor could start functioning again, but right now it isn't. It's unusual for a person to have a partially functioning tumor. Most people have one or the other. What he said makes sense, and it explains why my IGF-1 levels were mild (barely elevated). He mentioned residual tumors could cause insulin resistance, but there's no evidence in the blood work to support this. Diet is the only way to control the episodes - eat small meals throughout the day and watch my carbs intake.

Since the remaining tumor in the left cavernous sinus is inoperable, the only options are to treat it with medicine or proceed with radiation. There is no excess GH or prolactin hormone to suppress, and radiation treatment could damage my pituitary gland so the doctor recommends we watch it. There is no need to do anything right now. As crazy as it seems that I can safely live with tumor on my carotid artery, he assured me it is okay. It's growing slowly, and he does not think it will erode the artery or invade my brain. At this time, it looks like I'll be going to Houston for any future check-ups. I'll return to M.D. Anderson in 6 months for a repeat MRI and bloodwork.