Pituitary Tumor Support Group

I originally posted in April after being diagnosed with a non-functioning macroadenoma while living in India. I sent off my tests, doctor reports, and scans to Johns Hopkins to get a remote second opinion, and the doc there supported the diagnosis, accept he also said it appeared on my original scan that my tumor hemorrhaged. My docs in India didn't necessarily agree with this opinion, but did approve me for another MRI, which I had this past Friday.

I got my results from that scan yesterday. (In India, you keep your own medical records, so the MRI center handed me the results.) The new report "suggests (their words) a pituitary adenoma with necrosis and changes/apoplexy with changes."

This seems in line with what the JH doc has said. Has anyone dealt with tumor apoplexy before?

The JH doc's recommendation was that if the tumor appeared to be the same size or larger, I need to get it removed this summer. The tumor size appears to be the same, dimension-wise, but the MRI report indicates a subtle reduction in size. It is still a macro-size, though.

We return to the U.S. for home leave on June 21 and I was really hoping the tumor had shrunk so no surgery would be necessary. The headaches I had back in April are gone, my hormone levels are normal, and my vision test are fine. But, having a bleeding tumor in my head scares me a bit, and I DEFINITELY do not want to have the surgery in India.

If anyone in this group has dealt with pituitary tumor apoplexy before, I'd really like to hear from you. It's hard being in another country with no one around who has dealt with this before.

Thanks!

Hi Deannawt,

Glad you are doing well. I had a pituitary tumor apoplexy, which caused me to have the worst headache of my life and resulted in me going to the ER - that is where I first find out that I had a pituitary macroadenoma. I saw two different neurosurgeons and both confirmed the tumor had hemorrhaged and swollen, which caused my headache.

Both doctors recommended I have surgery since it may (they both said most-likely will) hemorrhage again, which may cause more issues (especially if it swells up more). So two weeks later, I had a pre-surgery MRI and it showed the tumor had shrunk by 50% (still macroadenoma) and the neurosurgeon still recommended I have it removed.

If you decide to have surgery, I recommend you find a neurosurgeon that has done the operation in the 1,000 range, skilled at minimally invasive techniques and works with a equally skilled ENT (Ear Nose Throat) surgeon. It was important to me to find a "team" that did pituitary ademona surgeries. Even if it is endoscopic, there are more invasive approaches such as removal of a nasal flap, so please make sure to get a second opinion when you are back in the USA and ask the surgeon to explain the procedure to you.

BIG HUGS to you. Thanks so much for the response. The headache you described sounds just like the one I had that initially sent me to the hospital. In retrospect, I am glad the doctors didn't diagnose the apoplexy initially as they would have pushed for immediate surgery here.

Thanks, too, for the information on the nasal flap. We have narrowed down hospitals to reach out to for surgery/review: Johns Hopkins, Emory, University of Virginia, Mass General (Boston), and St. John's in Santa Monica. I will be sure to ask the doctors about specifics with the surgery, as I didn't realize there was a difference in the way the endoscopic/endonasal surgeries can be performed.

We have a short time-span in the U.S., so I am really hoping I can meet with a doctor and get the surgery done as early in July as possible to allow for recovery time before we head back to India.

What was your recovery from surgery like?

Thanks again for the note!

-Deanna

Hi Deanna,

Glad I can help. Recovery was pretty easy in my opinion, this is probably due to the fact that I did not have to get splints in my nose nor did they have to take fat from my stomach to patch the entry point. Here is a summary of my recovery:

1st Night after Surgery: stayed in ICU, mild pain in the nasal area and was connected to a catheter and just felt weak (doctors did not want me to move too much), but ate a full dinner. Nose was very dry and had to breath through my mouth for most of the night. Also had DI (Diabetes Inspidius), which is common after this type of surgery. Also, was told not to tilt my head down.

2nd Day: Transferred to regular room, no more need for Tylenol for pain management. Felt much better, but still a little weak and DI was getting better. Nose was still dry, but saline spray helped.

3rd Day: Felt much better and all my blood work came back to normal/near normal level. Was able to leave the hospital. Took extra nasal spray to help moisturize nose.

1st Week After Surgery: No more DI, nose got better, but still could not tilt head down. Felt much better overall, but still did not do any work or lift anything heavier than 5lbs.

2nd Week After Surgery: Nose is pretty much normal, able to tilt head down and had to see the ENT for followup and to clean the nose. Started working again, but still no lifting.

1 Month After Surgery: Basically back to normal - just had to take it easy with lifting heavy things.

So basically, the first week after the surgery was the most uncomfortable. After that I just had to take care of my nose and not overexert myself. Just remember, even though the pituitary is not part of the brain - this is still brain surgery, so you will have to take it easy for a few weeks and slowly ramp up your physical activity.

Please let us know which hospital/doctor you ultimately decide.

I had this back in 2009, I was in the ICu for 4 days and then pit on steroind and cabergoline, my tumor did shrink and i felt better. i had to take vicoden for headaches for like 2 months

Thanks Cinthiabellp for this info! UCLAguy, I've sent you a PM regarding my surgery.