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

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Replied by carolk on topic My husband just had surgery for Pituitary Macroadenoma (non functioning)

It really is amazing. It seems that many doctors treat symptoms and go with the most common disorder that causes them. They don't always look for the actual cause. Now that your husband is recovering, he may feel worse before he feels better. Hopefully your doctor gave you instructions on what to look for, in case his cortisol levels go too low.We also have a closed Facebook support group if you are interested in connecting with other patients on a wider scale. Search for Pituitary Network Support Group and request to join. There is also a family and caregiver one Pituitary Spouses and Family Support Group. Once you are approved to join, only members of the groups will see your posts.  Sending positive thoughts. We are here if you have questions or concerns.! :) 
1 week 5 days ago #10652

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Replied by max_wife on topic My husband just had surgery for Pituitary Macroadenoma (non functioning)

Thank you for your warm response. I completely agree with you. I was shocked that even the urologist did not connect the extremely  low Testosterone levels to a possible pituitary problem. I just wish we were asked to do the MRI immediately instead of being prescribed Testosterone injections for 5 months. Anyways praying now that he regains some kind of pituitary function and hoping for improved hormonal levels in the near future. 
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Replied by max_wife on topic My husband just had surgery for Pituitary Macroadenoma (non functioning)

Thank you so much for your reply. I completely agree with you. I was shocked that even the urologist did not seem to link the low Testosterone levels to a possible pituitary problem. Instead of treating him with T injections for a few months, I wish we were prescribed the MRI immediately. Now praying that his pituitary gland regains some kind of function and hoping for improved hormonal levels in the near future. 
1 week 5 days ago #10650

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Replied by carolk on topic My husband just had surgery for Pituitary Macroadenoma (non functioning)

Thank you for telling your husbands story. He is so fortunate to have you in his corner. Had you not insisted on finding the answer to his symptoms, things could have ended up very different. He was also very lucky to have been referred to an endocrinologist who was experienced with pituitary medicine. So many patients have a delayed diagnosis because they are seen by physicians who don't understand pituitary disease and don't know what to look for. Best wishes for his continued recovery!
1 week 6 days ago #10647

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

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

About a year ago, my husband (Max) started getting 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 were soooooooooo 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 transphenoidal surgery. 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 surgery under 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 since surgery. 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 is going through this. And I hope to be able to provide any patient experience knowledge or support.

Love and luck
2 weeks 2 days ago #10645

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