Doc said it was a tumor...but - Hormone Problems Message Board

Laura2008 · 06-14-2008, 02:10 PM

Hello.
My daughter (age 25) has had recent surgery for a tumor on her pituitary gland...however, when the surgeon got inside to remove it, he said it did not show the consistency of a tumor. So he did a biopsy of what he removed and the tests show it is tissue from the pituitary itself. Has this happened to anyone else? The growth was about the size of a dime. Before the surgery my daughters hormone levels were all good, the only thing that she was having trouble with was her lymp nodes being swollen, and she had gained some excessive weight really quickly. I will add that she also has been diagnosed with Chrohn's disease since she was 9 years old and she is now on Remicade for the treatment. Can the Remicade possiby cause the piuitary gland to swell? And now that the doc has removed tissue that is now known to be part of her pituitary gland, will the pituitary gland still function as well as it was? I am so confused and worried, could this have been an unneeded surgery? Please help with any info you can....Thanks so much

Bengie · 06-16-2008, 12:42 PM

it was a growth on the pit gland. only way to see what kind of a growth it is is to do surgery. it is very weird fo rhte pit to grow extra parts to it. the pit shouldn't grow at all. So it is only unnecessary now that it is known to have not been a tumor. but that couldn't be determined before surgery and the biopse

yes surgery on the pit can damage it.

rumpled · 06-16-2008, 02:06 PM

How experienced was the surgeon? Was he over 500 surgeries at least? That makes a HUGE difference. Also, different tumors have different consistencies as was told to me by several surgeons that I interviewed - so that is pretty normal. I had Cushing's and know that the tumor I had was going to be hard to remove as they are soft, squishy and gelatinous. I am not sure exactly how the other tumors are but all the surgeons said Cushing's tumors are different.

Also, normal path does happen. They are doing a lot of suctioning up there - and the material can go out in the suction. So, you can lose the abnormal material.

If she had comprehensive testing beforehand, the type of tumor she had should have been known. I had Cushing's and a prolactinoma... the doctors all said that could not happen but I know it happened to me and to a friend of mine.

I have swollen lymph glands too.. no idea why.

Surgery can do damage - but in the hands of a skilled surgeon, damage should be minimized. In a not-so-skilled surgeon, she may lose a lot of hormones. The fact that he does not know about negative pathology kinda gives me a clue that he is not one who does a whole lot of pit surgeries as he would know the implications are neutral and not to blame the patient. Pituitaries just do not enlarge on their own. Was the surgery endoscopic? Did he have a good view?

Laura2008 · 06-16-2008, 11:39 PM

Thanks for the replies. The surgeon that did my daughters procedure has done around 2,500 of these types of surgeries so far, so he is very experienced. And there were lots of tests before hand to determine hormone levels and such, so I feel certain he did all that he could do to find out about the condition. Going inside just was something that had to be done to know for sure, I quess. I am feeling better now that it has been a week later, and my daughter is feeling better, she went for her one week check-up today and she had normal temperature which I am so happy about, means no infection....YAH! She had blood work done, to test for the cortisol and sodium level. We will know about that in a few days. I will post updates as we go along and let you all know how it goes...keep posting any info or comments you have, I appreciate it.

Laura2008 · 06-16-2008, 11:54 PM

oh, and the way the surgery was done was up through the upper gum area, under the upper lip. Some of the more modern surgeons now do it up through the nose and do not cut into the gum or upper lip. But this surgeon said he did all of his pituitary surgeries through an incision in the gum. From the upper gum he went through the sinus areas and broke through the bone into the skull and went to the pituitary. I was very surprised that there was very little swelling, but she did bleed alot when the packing was removed. Blood just gushed out so much! But she is not bleeding much at all now, just still draining from the sinuses. She was told to use a sinus rinse every day to loosen the gunk, but she is still mostly stopped up. The rinse will not hardly go through. But it has only been one week, by this time next week I am sure she will be much better. If anyone has any other questions please send them along, it helps to know there are people reading these posts and that can help out with their ideas and suggestions...