What's to expect after a pituitary gland removal surgery for Cushing disease

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Hi my name is Joanna

To summarize my story, after many months of symptoms and testing, I have been diagnosed with "Cushing disease", which I had a pituitary gland adenoma roughly around 0.4 x 0.3cm in size that was producing excessive cortisol.

Like many other patients, my body has developed symptoms that make my life miserable. For example:  gaining weight, trouble getting to sleep, full moon face, getting tired easily and also suffering many other minor symptoms.

After a series of consultation with medical experts, I have been scheduled for a surgery in two days from now to remove the pituitary gland from my head. However as the surgery comes closer, I have become more nervous about what’s coming ahead after the surgery. I would be grateful if any of you are kind enough to answer my questions.

1.  Unlike the common pituitary removal practice, my doctor has decided to operate the surgery through my inner upper lip rather than the nostrils. So I was wondering if there are any other people who have undergo a similar procedure and if there is anything I should be more alert after the surgery?   

2.  In reference to what my doctor has told me; there will be an excessive drop of ACTH hormones after the surgery, therefore I would like to know the kind of physical or mental symptoms I would be expected to experience during this period?

3.  What are the physical and mental challenges, I would be expecting to undergo after returning home from the hospital?

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  • Posted

    Joanna

    I have had pituitary surgery twice and operated both times under the upper lip.

    This is the easiest surgery i have endured...I'm not kidding..why? I've had an accidentally punctured lung

    Kidney stones 8 times, gall bladder removal, kidney removal with a bowel injury

    A humongous hernia surgery and 4 other hernia surgeries and 18 hand surgeries...

    The surgery for pituitary tumor you will have no scar

    Your nose will be packed with gauze when you wake up..it will not be that uncomfortable...trust your surgeons. Your adenoma is very small.. i have one right now that is 15 x 14 x 11 mms..i see a new neurosurgeon on thursday.

    Has your surgical team told you how long you will be in the hospital? My last surgery in may of 2016 i was only in the hospital 2 days..yes there will be a drop in your hormone production..that is causing all the havoc in your body. You might experience more fatigue as your body adjusts

    to the drop, depending on how long you have had the tumor and getting diagnosed makes a big difference. If you have only had symptoms for a year or two..you should bounce back quickly..the moon shape face will go away, you will lose weight, just be very patient with yourself through the next 6 months.

    Be happy you are getting this fixed and your life will turn around again.

    Try not to be scared as to your surgeons this is a normal day for them and to get well this is the right way to get it fixed...think to your self that this is the positive change back to yourself. You do not mention your age ..but i am 66 and did fine at age 64..you will do just great. Please keep us posted here, we all care very much how you are doing. If you have any more questions please just ask..one of us will get back to you soon.

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    • Posted

      First of all thanks for answering, and I would like to know more about the fatigues I would be running into after the surgery. (Is it only sore muscles and nausea or is there is more into it?) 
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  • Posted

    You mention surgeon is removing pituitary gland.  Is it the entire gland or tumor from pituitary?  I had a 1 cm pituitary tumor removed 1 year ago.  Post surgery was challenging.  I had to take steroids for 8 mo until my pituitary and adrenal glands woke up and functioned on their own.  My first two months I experienced severe nausea (I think I was a rare case), emotional ups and downs, some anxiety that I never had before.  Month 3 to 8 I endured the body pain that comes with the withdrawal.  Everyone is different.  It’s not a race.  Patients is the key. I would talk to your doctors about having meds for nausea, pain and anxiety.
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    • Posted

      Thanks for your sharing, The challenges in post surgery is something which terrifies me the most at the moment.

      As I am not a patient person myself, I am afraid the mood swings will drive me to do obnoxious things to my family and people I love. I would really like if you could share some of your tips on how you have handled the mood swings.

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    • Posted

      Joanna

      To help with your mood swings, i want you to make sure you have several new notebooks and pens, take one to the hospital with you..start a journal, of your progress, your anger, your despair and all the things in your head you are thinking

      This will be your way to cope. I also am a Christian i hope you are too as your bible will also be the 2nd thing to keep you stable..

      when you are afraid, angry, and feeling lost..open that bible..just let it fall open to where it will..and read both pages open..God will comfort you every time..

      believe me. I got where i prayed continuously in my head. I had my first surgery and was mainly all alone as my family lived too far to come. Just knowing God was with me..got me thru some rough days. That was 29 years ago when i had my first pituitary surgery. God is still with me. Count on Him ..He's got you.

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    • Posted

      I had only tumor removed from my pituitary.  I did go on HC for 8 months until my pituitary woke up.  I too was scared to death of how I would handle the uncertantity of this surgery when I had heard about the ups and downs.  I discussed with my doctors and they sent me home with Prozac (daily use) and Ativan (as needed).  I chose not to take anything unless I had my "freak out moments".  That was more of a panic attack and anxiety.  I didn't have as many as I was told I would have but I did take the Ativan.  It helped immediately.  I think that knowing I had something in case of a episode helped.  I really didn't take it often but when I did need it it worked.  Don't be afraid to ask for things to help you get through the rough spots.  Why suffer when you don't have to.  I am a little over a year post op.  I'm not addicted to any meds.  In fact, I do not take anything now except vitamins.  

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  • Posted

    Joanna

    Hopefully, you are sharing each step of your journey with Cushing's disease with your family members and close friends. Understand it is hard for them all to watch you go thru this; but at the same time, understand that they love you and know how hard a struggle this is for you. They have already experienced the depression

    Fatigue, mood swings, and all the other unusual symptoms that you have endured. Knowing that this surgery is the major step to your sure recovery...all of you need to be very relieved that this time next year will be a totally different you. Each month that goes by after surgery you will see improvement.

    If you ache, i always used a heating blanket and would warm my body which helped. You may be very hungry at times, and there may be times you aren't hungry at all. The fatigue will be part of it, accept this as the rest you will need is so very important to your recovery. Don't fret over the weight you have gained as that too will melt away, just try to have patience in knowing your body is going to readjust itself. They may give you steroids to take to help with the withdrawal of hormones, they will taper them. Hopefully you can see each month that you are progressively getting better. Just know how many survivors are out here to share with you.

    Look online for the Cushing's Support and Research Foundation and join this. There is quarterly newspapers with lots of information, stories from others facing Cushing's. Just know you are not alone. Cushing's is a rare NORD disease but there are many many survivors from all over the world. Know that we all care how you are doing. Trust your doctors and go into surgery with a positive outlook. God is watching over you.

    May God Bless.

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