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

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The migraine passed, thank you. I realized I got viral meningitis again (fourth time) when I got my IVIG infusion on Saturday. That's why the migraine, stiff neck, fever, nausea, chills, etc. I have to get IVIG every three weeks because my immune system doesn't work anymore. I really am in pretty bad shape. But I went off sugar five years ago and I feel like I'm at least half my age since I did that. As sick as I am – I still feel like I'm in my 30s since ditching sugar.

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@kanaazpereira

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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Hi…I can't believe that I am not alone in my suffering. I need help finding a doctor who knows how to deal with the issues caused by my pituitary adenoma. Diagnosed w 7mm adenoma in 2012 and suffering extreme headaches, syncope , weight gain and dizziness. Severe problems with eyesight. My memory and ability to find words is terrible. Please give suggestions for someone who can help me as the doctors here don't know what to do or they tell me that pituitary adenoma have no symptoms. I know my body and I know what I have gone through. Trigemiinal neuralgia and severe one sided headaches lasting 3 to 5 days. PLEASE HELP…Thamick

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@thamick

Hi…I can't believe that I am not alone in my suffering. I need help finding a doctor who knows how to deal with the issues caused by my pituitary adenoma. Diagnosed w 7mm adenoma in 2012 and suffering extreme headaches, syncope , weight gain and dizziness. Severe problems with eyesight. My memory and ability to find words is terrible. Please give suggestions for someone who can help me as the doctors here don't know what to do or they tell me that pituitary adenoma have no symptoms. I know my body and I know what I have gone through. Trigemiinal neuralgia and severe one sided headaches lasting 3 to 5 days. PLEASE HELP…Thamick

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Hi, my husband had surgery 3 years ago. He had adenoma removed. I tell that in combination with Endocrinologist and and his surgeon he is doing great. I tell you best thing even if you do not live in miami,still come and see the doctor. University of miami/Jackson Memorial can help. Please even if just to get 2nd opinion do it, I also tell you our faith in God has Cristian evangelist made everything possible.

Here both doctor information, keep in touch.

Neurologist: Ronald Bienveniste 305 243-6946
U Sylvester 3rd Floor
rbenveniste@med.miami.edu

Endocrinologist: Dr Atil Kargi
UM Endocrinologist
305 243-3636
Same place has neurologist.

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@dmedina71

Hi, my husband had surgery 3 years ago. He had adenoma removed. I tell that in combination with Endocrinologist and and his surgeon he is doing great. I tell you best thing even if you do not live in miami,still come and see the doctor. University of miami/Jackson Memorial can help. Please even if just to get 2nd opinion do it, I also tell you our faith in God has Cristian evangelist made everything possible.

Here both doctor information, keep in touch.

Neurologist: Ronald Bienveniste 305 243-6946
U Sylvester 3rd Floor
rbenveniste@med.miami.edu

Endocrinologist: Dr Atil Kargi
UM Endocrinologist
305 243-3636
Same place has neurologist.

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Thank you so much for the info and God bless you all. I have felt so alone trying to get answers. Your story inspires me and gives me hope.

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Hello @thamick and welcome to Mayo Clinic Connect. I am so glad you found Connect and this discussion that has allowed to you to feel less alone in your healthcare journey.

If you are interested in including Mayo Clinic in your list of options for a second opinion, experts at Mayo Clinic can help you navigate your healthcare journey, answer your questions, and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63. Be sure to mention the Cerebrovascular 48-Hour Access Program.

Will you please update us along your journey?

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Yes. I had 2 pituitary surgeries at mayo in Jacksonville 12/19 and 4/7/20. Both unsuccessful. I was diagnosed with Cushing disease and ended up having both adrenal glands removed 5/7/20. I am still having problems and losing hope. 3/13/21 cheryl

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@cheryl1

Yes. I had 2 pituitary surgeries at mayo in Jacksonville 12/19 and 4/7/20. Both unsuccessful. I was diagnosed with Cushing disease and ended up having both adrenal glands removed 5/7/20. I am still having problems and losing hope. 3/13/21 cheryl

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I am sorry to hear you are feeling so bad.My husband was diagnosed with pituitary adenoma, and diagnosed with Cushing disease, he had surgery and had pituitary adenoma removed and where his was the doctor said possibility might not get it all but so far nothing everything is fine. He does go every 6 to a year to Endocrinologist for follow up. He was told that if it return he couldn't have a 2nd surgery and maybe he will be able to do mega knife. But that is why go and see the doctor I posted for another opinion.

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@cheryl1

Yes. I had 2 pituitary surgeries at mayo in Jacksonville 12/19 and 4/7/20. Both unsuccessful. I was diagnosed with Cushing disease and ended up having both adrenal glands removed 5/7/20. I am still having problems and losing hope. 3/13/21 cheryl

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University/Jackson Memorial can help. Please even if just to get 2nd opinion

Here both doctor information, keep in touch.

Neurologist: Ronald Bienveniste 305 243-6946
U Sylvester 3rd Floor
rbenveniste@med.miami.edu

Endocrinologist: Dr Atil Kargi
UM Endocrinologist
305 243-3636
Same place has neurologist

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@amandajro

Hello @thamick and welcome to Mayo Clinic Connect. I am so glad you found Connect and this discussion that has allowed to you to feel less alone in your healthcare journey.

If you are interested in including Mayo Clinic in your list of options for a second opinion, experts at Mayo Clinic can help you navigate your healthcare journey, answer your questions, and guide you through the treatment plan. When you call at any of our 3 campuses, you will be offered an appointment within 48 hours http://mayocl.in/1mtmR63. Be sure to mention the Cerebrovascular 48-Hour Access Program.

Will you please update us along your journey?

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Yes… I will keep you updated and I plan on taking your advice and will reach out to these specialists. At least this takes a huge weight off my shoulders because now I feel like I have options other than doctors around here who make me feel crazy when I talk about the various issues I have with severe headaches, passing out and weight gain. Can high cortisol levels cause someone to gain over 100 lbs since being diagnosed???? Severe headaches are excruciating and does lead to depression and anxiety. Thank you so much for giving me this info! Go bless you all and thanx again!!! Thamick

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High cortisol definitely will cause huge weight gain in short amount of time. The gain will be mostly around your abdomen. Also muscle wasting is a good sign too.

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@dmedina71

I am sorry to hear you are feeling so bad.My husband was diagnosed with pituitary adenoma, and diagnosed with Cushing disease, he had surgery and had pituitary adenoma removed and where his was the doctor said possibility might not get it all but so far nothing everything is fine. He does go every 6 to a year to Endocrinologist for follow up. He was told that if it return he couldn't have a 2nd surgery and maybe he will be able to do mega knife. But that is why go and see the doctor I posted for another opinion.

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How is your husband doing? I had 2 pit surgeries and both adrenal glands removed to stop Cushings.

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Hello to all. I recently was diagnosed with a nonfunctioning pituitary macroadenoma on March 3 rd and had Transphenoidal removal on March 8. I must say that I am very grateful that I was able to have surgery. My case was complicated by having severe epistaxis post-op where I had to go back and get vessel cauterization. My hemoglobin dropped from 12 to 7, I had to have a blood transfusion (which I never had in my life). I also had uncontrolled high blood pressure which I was placed on new BP meds that reduced by BP from 170's/130's to 120's/70's, nowever my heart rate became elevated during my stay, from 100-150's. I was orthostatic as well. I stayed in the hospital longer than expected. I was so happy to get out, however I must say I am far from feeling well. I orignally went to be evaluated due to have daily headaches since November. Although they would be relieved by exedrin, they would return. The headaches are no longer, however I am greatly fatigued, always tired, sometimes I feel jittery, almost a fogginest feeling when standing and walking and I am starting to feel nauseous daily now. Initally post-op, I did go into Diabetes Insipidus, and then SIADH follow; however I didn't suffer from hyonatremia as of yet because I was pre-emptively placed on a fluid restriction of no more than 1 liter in 24 hours. I was also placed on hydrocortisone 20 mg in the morning and 10 mg in the evening. I was kind of skeptical of this because all of my hormone levels were within the normal range. The biopsy of the tumor showed that it was a corticotroph adenoma likely ACTH. I am just wondering why I am feeling nauseaous and lightheaded/or fogginess, if this is part of the healing process or if it is signs of hormonal difficiencies. My providers wanted to increase my hydrocortisone to 20mg in am and 20 mg in pm, but I am skeptical because I don't want it to suppress my HPA of producing cortisol naturally because I don't want to be taking these medications or having to suffer from withdrawal symptoms once they try to taper me off of them. Can anyone else tell me about their journey post op? Is this normal, to be expected?

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