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What's recovery like?

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This topic contains 7 replies, has 8 voices, and was last updated by  DanasMom 5 months, 3 weeks ago.

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  • #2816

    kkc
    Keymaster

    Recovery can be a long, slow process. Don’t get frustrated! Your symptoms didn’t appear overnight, so set your expectations that this is going to take some time. I found it helpful to keep a list of small improvements, then I could look back over 2 weeks and see even more improvement.

    • This topic was modified 3 years, 6 months ago by  kkc.
    #3287

    Deb33
    Participant

    I am 3 weeks post having my pituitary gland removed. Well 98% of it. They just left the part that attaches to the stalk behind. 

    I had a CFS leak during surgery, this was repaired with a fat graft. 

    I developed Diabetes Insipidus within 1 hr of surgery. I was pumping out 900mls of urine every 20 minutes. I’m still on desmopressin for that. 

    I had Hyponatremia and hyperkalaemia ( low sodium/ high potassium ), left sided weakness and a non responsive right pupil for 24 hrs ( the docs think it was caused by swelling around the brain ). It resolved on its own. 

    I spent 11 days in the hospital and 5 of those in the high dependency unit.

    The thing is now I’ve been home 12 days and I kind of think I should be able to do more than I’m doing.

    I get out of bed, don’t do anything too strenuous, and after 1 hr have to go back to bed. if I do get up and wash the dishes, I last 5 minutes then need a break. I can’t concentrate on the computer ( I’m writing this with breaks in between ) and no way am i interested in watching TV or reading. I just feel so fatigued all the time.

     

    Is this normal? Am I asking too much of myself? 

    I’m seeing my Endocrinologist in 2 days. Hopefully she can give me some good advise :)

    #3438

    Kaci1001
    Participant

    I am 3 months post-surgery. I am just now getting a little energy back. I have been achy, exhausted, and emotional. It is difficult to do everyday things. I have felt very alone at times, like no one understands what I have been through. Recovery has been difficult, but not horrible. It is hard to be patient when you just want to get on with your life.

    #4068

    lavendar65714
    Participant

    It’s so easy to get discouraged. I had my first adenopituitary resection on June 9, 2015. This morning, July 16, 2015, I’m awaiting a second fat graft. I developed a meningitis infection and went c-r-a-z-y, complete with blackout. If my good friend hadn’t stopped by I would be a goner. At least I know what to expect this time, but post-op last time I felt frightened and alone. It will be three very difficult days, but I can do it standing on my head if that’s what it takes to get to the next level of recovery. My goal is, 18 months from now, I’ll be at least 80% back to normal. kkc’s suggestion of keeping track with a journal is a good one. I don’t always remember to be grateful for or even notice small improvements, but even a monthly selfie is a good idea.

    You’re right, nobody around you understands, but we fellow chipmunk-faces do! Hang in there and we’ll all pull through together. 

    Lavendar65714

     

    #4063

    Jenn37
    Participant

    HI my name is Jenn and I am seven months post removal of the R adrenal gland and tumor.  Recovery has been very difficult for me.  I have Osteoarthritis in all my joints, I can barely walk because of severe pain in my hips and back and am having back surgery next week,  Then I have to have both my hips replaced.  I’ve lost 25lbs since my adrenal gland and tumor removal and feel that I should have lost more. I was diagnosed late, having symptoms for approximately 5 years.  I had to quit my profession as a physical therapist and am waiting for disability for which I have been denied twice.  I can’t get some of the medical treatment I need because I have no money.  I had to quit seeing my therapist that I have been seeing for 15 years and am having trouble paying the copay for my insurance.  I just keep hanging in there hoping I will return to normal after all of these surgeries.  I am also going through some anger about my late diagnosis and my abrupt life change.  I was very active and now can not even play with my ten year old son.  I haven’t been really depressed, I just feel lost with all these post op problems and loosing my therapist.

    #4478

    navyret2
    Participant

    Recovery can be difficult based on what you have done, what replacement medication you are taking and your age and personality. I had my Pituitary completely removed in Nov 1983. I was 30 years old. It took several months to be allowed to even sneeze. During your recovery you will find you have changed. Your interests might change, your energy level may take a year to return. You will learn your new limits, what the drugs do to you and what happens if you forget a dosage in the morning. I can safely I spent five years learning who I was now. You will have to just accept there are good days and there are bad days. In my case the good far out weigh the bad. My idea of a bad day is being tired, no drive to accomplish something that day, so I just take a break, read a book or take a nap. I happens and just go with it.  Keep in mind I also retired at age 42.  I am 62 now. Michael USN Ret

    #4933

    Simrita Kaur
    Participant

    Hi my name is Simrita.I had pituatry adenoma with surgery in 2013 then a reoccurrence but on another side of the pituatry in 2015. It is 1 1/2 years after my second pituatry surgery.For an year after my second surgery I was on 40 mg steroid(20-10-10) bcos the endo I saw didn’t taper it.Then I joined csrf and since feb I am seeing Dr.Amir in Cleveland clinic.We tapered the steroid since feb first, the evening dose 5mg for 2 weeks, then 5mg for 2 weeks.Then on 24 march 5 mg of afternoon dose till 10 may ,when we reduced another 5mg.We did the ACTH test on 3 july and my pituatry was producing a 0.3 something of cortisol and other harmones are normal.During these months I have lost almost all of the cushing weight.But I have severe aches and pains(fibromyalgia),anxiety,mood swings,memory and concentration problems,a little low blood pressure , severe fatigue.I don’t know how things are going to move on from here as I have not been able to ask this to my doctor.When and how will these symptoms improve.If the pituatry is making 0.3 will it gradually produce more like it should and reach a normal level or again nothing can be said and it may not produce at all.And is it that when it reaches normal level on its own I will feel very very normal.If it doesn’t I will have to remain on 20 mg ,then also the symptoms will reduce.My next Acth test is on 23rd oct.

    #5048

    DanasMom
    Participant

    Hi Kaci.  I see this was posted in 2014.  I was wondering how you are doing now, 2 years later?  My 19 year old daughter was just diagnosed, and I’m struggling as to how to help her get through this.  She has expressed the same feelings as you did in your post.  I hope you are doing much better now, and feeling like yourself again.

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