× Tell us about your journey

My husband just had surgery for Pituitary Macroadenoma (non functioning)

  • max_wife
  • max_wife's Avatar Topic Author
  • Offline
  • User is blocked
  • User is blocked
  • Posts 4
  • Thank you received: 0

My husband just had surgery for Pituitary Macroadenoma (non functioning) was created by max_wife

Hi. My husband and I are fromIndia and this is our story
Writing it all down here so that hopefully ithelps another fellow traveller

About a year ago, my husband (Max) startedgetting stomach pains (lower abdomen). It wasn't a bad pain but it was there
every single day...and more intense early in the morning. Slowly he started
developing body and joint pains and stiffness. We thought it was a viral
infection lingering after a bout of gastroenteritis that he had a month
earlier.  None of the pains were too intense, he was able to go to work
but he got very tired by the end of the day.  He was also lying down a lot
and seemed to be in a general malaise state. Then a few weeks later, he started
to get a bit of anxiety and break into sweats (almost like hot flashes that
menopausal women get). Our GP dismissed this symptom completely (saying men
dont get hot flashes)' and asked us to get a total health check up done since
he was nearing 50 years of age (which included a complete blood work, a basic
cardiac check and abdominal and pelvic ultrasound). Everything came back
NORMAL. For some reason, Max also insisted on getting his Testosterone levels
checked (cause he felt he was losing his body hair). The Testosterone test came
back extremely low (around 50). Our GP sent us to a urologist who put us onto
Testosterone replacement injections. That boosted the T-levels marginally.
Meantime, any questions on why the T-levels were so abysmally low were not
being answered by the doctor. Max's stomach pains were still bad so we went to
a gastroenterologist. Since his abdominal ultrasound and stool tests were
clear, he said that Max may be suffering from IBS and put him onto some
medication. That gave a bit of relief. But none of the main symptoms were going
away completely. We were fearing that he may have some cancer of the GI tract.
He also started to lose a lot of weight (8kilos down). Finally after 5 months
of trying all of this, we were quite fed up. Asked the urologist who said he
shouldnt take any more Testosterone supplements (cause they weren't making any
significant difference in his T-levels) and asked us to go home and learn to
live with this. That's when I got really angry. I insisted that we probe into
what is causing the Testosterone levels to be so low in the first place. I
wanted an answer. We insisted on meeting another doctor. Finally the hospital
put us onto an endocrinologist. She was the only one who sat and listened to
all our concerns. She immediately asked us to get a hormonal panel done. Max's
cortisol levels were almost non existent and T4 was low too. So she asked us to
get and MRI of the pituitary done and immediately put Max onto hormonal
supplements, which gave him immediate relief from all his pains.  She kind
of told us that she was expecting to see a pituitary adenoma in the MRI, so she
prepared us in that sense for the MRI result. Sure enough, a 2cm Macroadenoma
of the pituitary gland showed up in the MRI. 

Instead of being stressed out, Max and I weresoooooooooo relieved to see this. Cause FINALLY there was an explanation for
what he was suffering from for almost a year. He had NO HEADACHES and NO VISION
LOSS (the general symptom of a pituitary adenoma). Maybe we had caught it in
time... Maybe if we had not pushed for more diagnostic tests, those symptoms
would have showed up after a few months.

Anyway we had to go in for a transphenoidalsurgery. No option since it was not a prolactinoma. The surgeon seemed to be
happy with the results of the surgery (since he managed to remove all of the
tumour). We are yet to do a whole hormonal check but as of now, Max is off the
cortisol and the testosterone supplement. Fingers crossed, that he can stay off
supplements. The surgeon said that they cannot guarantee how much the pituitary
would regain function post the surgery, so we have to wait and see. 

Regarding the surgery...it's a 4-5 hour surgeryunder general anesthesia. They did a lumbar puncture as well to control the CSF
leak possibilities. He has no leak during the surgery. At times, they may take
a fat deposit from the thigh to pack the hole made in the bone behind the
nose...but Max didnt require that as the medical sealant seemed to be
sufficient. Post surgery he was in hospital for 5 days. The main after care
required is to check on urine input and output and sodium levels. Also douching
the nose with a saline spray. He has also been asked to not carry any heavy
weight or bend down for a couple of months. Other than that there is general
tiredness which goes away within a couple of weeks. Sneezing needs to be
avoided as well, so he is on Cetrizine (anti-allergens). The tumour is sent for
a biopsy (standard protocol). But these adenomas are 99percent benign so there
are no worries of it being cancerous. However, the tumours can recur, and that
was explained to us. 

So...current status..it's been a month sincesurgery. We will be doing a hormonal profile very soon and an MRI after 3
months. Fingers crossed. 

Just wanted to wish good luck to anyone who isgoing through this. And I hope to be able to provide any patient experience
knowledge or support.

Love and luck
1 year 2 months ago #10646

Please Log in or Create an account to join the conversation.

Moderators: [email protected]