Looking for others with Pituitary Adenoma

Posted by dmedina71 @dmedina71, May 3, 2016

I like to now if their is anyone who has been diagnosed with Pituitary Adenoma

Liked by sandysdoves

@lisalucier

@ladydove417 – that would definitely be hard with your family just hearing that you don't have a tumor and not quite understanding your situation. With all the pieces to pull together of this puzzle, as your endocrinologist said, it's understandable you'd feel lost.

@dmedina71 makes an important point that seeking a second opinion if you are feeling uncertain could be useful.

I'd like you to meet @gemttaz @remsen @sandysdoves and @hopeful33250, who may have some input as you are going through this process and wondering about the possible 4mm microadenoma.

When will you be doing the hormone check, saliva test and sleep test?

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@lisalucier I still have to schedule my sleep study but I did my siliva test last night. Thank you for responding.

Liked by Lisa Lucier

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Ok just to give everyone and update. I recieved my lab results from my initial visit with my Encronologist and Neurologist. Ironically, my prolactin levels were normal (24) and all the other lab results were also normal however I still have breast discharge. My Encronologist said it may be idiopathic discharge. My prolactin levels have been checked monthly since August and each month they have been mildly elevated until this month. My Encronologist also stated I may have a tiny tumor but the MRI was unconvincing and my level would be in the 200's if my elevated prolactin levels were related to a pituitary adenoma that produced excessive prolactin. My Encronologist is doing a siliva test for possible Cushing's disease but highly doubts if that is an issue. I completed siliva test last night, so I'll wait to see what happens. I've been told not worry or I'm not sure what you have but if you do have a pituitary tumor, it's tiny and nothing to worry about. I just believe every situation is unique and shouldn't be dismissed because they don't fix the typical textbook explanations. Just my thoughts from a confused patient.

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@ladydove417

Ok just to give everyone and update. I recieved my lab results from my initial visit with my Encronologist and Neurologist. Ironically, my prolactin levels were normal (24) and all the other lab results were also normal however I still have breast discharge. My Encronologist said it may be idiopathic discharge. My prolactin levels have been checked monthly since August and each month they have been mildly elevated until this month. My Encronologist also stated I may have a tiny tumor but the MRI was unconvincing and my level would be in the 200's if my elevated prolactin levels were related to a pituitary adenoma that produced excessive prolactin. My Encronologist is doing a siliva test for possible Cushing's disease but highly doubts if that is an issue. I completed siliva test last night, so I'll wait to see what happens. I've been told not worry or I'm not sure what you have but if you do have a pituitary tumor, it's tiny and nothing to worry about. I just believe every situation is unique and shouldn't be dismissed because they don't fix the typical textbook explanations. Just my thoughts from a confused patient.

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Good to "hear" your update, @ladydove417. That's rough that you are feeling confused in the midst of the testing process. Very understandable.

I'd also like to introduce you to @parrotqueen @astaingegerdm @koryn @elmay @downeylynn, who also have talked about pituitary tumors.

When will you get the results and interpretation of the saliva test you were given, @ladydove417? Do you believe your doctor was saying that the breast discharge was likely unrelated?

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Hey Ladydove. If you find you do have a pituitary adenoma, I'll be happy to talk with you about it. I have so many hormonal deficiencies! I have to take Armour thyroid, cortisol for adrenals, and Human Growth Hormone. I feel SO much better now. Try your best not to stress because that will only make hormonal imbalances worse and lead to more illness. Breathe – deep breaths from the lower belly – in through your nose, out through your mouth. That is what saves me. The recovery from surgery is very quick. I scrolled back and tried to find your original post – but could not locate it.

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@lisalucier

Good to "hear" your update, @ladydove417. That's rough that you are feeling confused in the midst of the testing process. Very understandable.

I'd also like to introduce you to @parrotqueen @astaingegerdm @koryn @elmay @downeylynn, who also have talked about pituitary tumors.

When will you get the results and interpretation of the saliva test you were given, @ladydove417? Do you believe your doctor was saying that the breast discharge was likely unrelated?

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@lisalucier I was told it would be a few weeks before I got my silvia results. In his notes he's just doing this test to rule out Cushing's disease because he doesn't believe that's what I have. From what I understand they are uncertain about the cause of my issues.

Liked by Lisa Lucier

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@parrotqueen

Hey Ladydove. If you find you do have a pituitary adenoma, I'll be happy to talk with you about it. I have so many hormonal deficiencies! I have to take Armour thyroid, cortisol for adrenals, and Human Growth Hormone. I feel SO much better now. Try your best not to stress because that will only make hormonal imbalances worse and lead to more illness. Breathe – deep breaths from the lower belly – in through your nose, out through your mouth. That is what saves me. The recovery from surgery is very quick. I scrolled back and tried to find your original post – but could not locate it.

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@parrotqueen thank you and I'm glad you're feeling better. I will definitely reach out to you if they ever figure out my issues.

Liked by Lisa Lucier

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@ladydove417

@parrotqueen thank you and I'm glad you're feeling better. I will definitely reach out to you if they ever figure out my issues.

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@ladydove417 – just wanted to touch base and see if perhaps you've heard back on your saliva test?

@parrotqueen – you mentioned that your surgical recovery was very quick. Will you share a bit more about what your recovery was like (e.g., did you have a lot of pain? physical restrictions? need a lot of help from others right after the surgery?)?

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Is anyone in this group who had a pituitary tumor partially removed and had Gama knife radiation 3 months later?

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Welcome to Connect @beckymattair.
I moved your message to this discussion (Looking for others with Pituitary Adenoma) where we have several members talking about this, and I thought it would be beneficial for you to be introduced them. Simply click VIEW & REPLY in your email notification to find your post.

I’m tagging several Connect members who have talked about their experience with pituitary tumors, and/or acromegaly–please meet @cherriann @nancye3 @robinlynn @dmedina71 @lindalongberry @sandysdoves @upartist @remsen and @ladydove417

What questions or concerns do you have, @beckymattair? How long did it take to recover from the surgery?

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@lisalucier

@ladydove417 – just wanted to touch base and see if perhaps you've heard back on your saliva test?

@parrotqueen – you mentioned that your surgical recovery was very quick. Will you share a bit more about what your recovery was like (e.g., did you have a lot of pain? physical restrictions? need a lot of help from others right after the surgery?)?

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I've had two surgeries to remove my pituitary tumor or adenoma. I had it again two years ago exactly this week! They did transphenoidal surgery – going through my nose – so no shaved head. I woke up with a horrible headache which they keep medicated right after surgery. Once you stabilize you go to your room. My pain was well controlled. I went home on the second day following surgery; however, the first time they did the surgery, I was hospitalized for a week. The first time they did the surgery, I had a balloon inside my head holding something in place to be sure there was no bleeding – but this has changed in the last ten years. They did take a bit of fat from my belly to rebuild the area where they went through for the surgery. That hurt more than anything else! I just resumed all my usual activities – I was out working in the garden within a couple days. It is an easy recovery. I felt a little spacy for a few days – but it wasn't so bad I couldn't do all the things I usually do. The following month I had back surgery and the month after that, I had a hip replacement – it was a busy year. I suppose it was more frightening the first time – they have really streamlined the surgery now. It made a huge improvement in my life. I was not doing well in life prior to the surgery – mostly because of thyroid, adrenal, and Human Growth Hormone insufficiencies. There is a very good book out that talks about the psychological aspects of these adenomas – called "The Hormone Factor in Mental Health: Bridging The Mind-Body Gap," edited by Linda M. Rio. I highly recommend this book. I had no idea all the ways these pituitary adenomas affect the way we are. The surgeon told me they got more of the tumor on the second try. They do not think it will grow back, and I get an MRI with and without contrast every other year. I live alone with some parrots and I did not require any help from anyone after surgery. I took excellent care of my birds and myself and nobody helped me.

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@beckymattair

Is anyone in this group who had a pituitary tumor partially removed and had Gama knife radiation 3 months later?

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My daughter in-law has had two surgeries at Mayo in Rochester the last two years for pituitary tumor/acromegaly. Both surgeries were done through the nose. Due to the tumor being extremely close to an artery, the tumor could not be completely removed during the first surgery. Radiation was going to be considered for remainder of tumor, however tumor grew back within six months, so surgery had to be repeated. She received radiation about three months after the second surgery in 2019 and to this date is doing well and tumor has not grown back. Recovery from both surgeries was without any major difficulties, other than headache, that I believe is common and to be expected.

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The first time I had the surgery, they couldn't get all of my tumor out because it was on the optic nerve (2011). But they said they had a better procedure in 2018, and they don't think it will grow back. I didn't have headaches after surgery in 2011, but I DID have headaches after surgery in 2018. The headaches continued for a few months. I went to a different neurologist for those headaches and we got them stopped. Thank you for refreshing my memory.

So Ironic that I woke up with a migraine today! First one in a year.

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@parrotqueen

The first time I had the surgery, they couldn't get all of my tumor out because it was on the optic nerve (2011). But they said they had a better procedure in 2018, and they don't think it will grow back. I didn't have headaches after surgery in 2011, but I DID have headaches after surgery in 2018. The headaches continued for a few months. I went to a different neurologist for those headaches and we got them stopped. Thank you for refreshing my memory.

So Ironic that I woke up with a migraine today! First one in a year.

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Hi, @parrotqueen – how is your migraine today?

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Yes. Mayo performed pss. Now having ipss march 13

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@dmedina71

Was the decision of the treatment Co joined with endocrinologist and
neurosurgeon. That’s how we are doing it. He got diagnosed also cushing ‘ s
Disease,and your husband
.

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How is he doing with cushings? I was recently diagnosed with cushings

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