Cushing's Syndrome Post operative problems

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After many years of feeling \"ill\" and suffering from high blood pressure and osteoporosis, I was finaly diagnosed with Cushings Syndrome and underwent surgery on 30th July to remove the adrenal gland and tumour.

Although there have been some marked differences in how I feel, to be honest I am struggling to get over this operation and to feel fully well.

Throughout my life I have any many operations but this one seems to have got the better of me. Admittedly I am nearly 59 but I am a very young and active woman and I am finding it very difficult to cope with life at the moment. I am tired all the time and really lack any energy or desire to do very much.

Am I experiencing the usual post operative problems or have other people managed to recover much quicker than me. I would really appreciate some input from other sufferers.

Feeling quite low at the moment

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  • Posted

    Hi I had surgery 3 weeks ago to remove two tumours from my pituirty gland for cushings disease. I know its only been 3 weeks but before my op I was told that it would be at least 6 months maybe 2 years before I would forgive the Doctors and speak to them, they said it would be like going through cold turkey. I felt very low and tired before the operation, after the op for the first two weeks I was on a high but now I ve seem to be starting low times a pattern seems to be forming which I m trying to find a way of dealing with it whilst they get my medication balanced.

    when I m low yes I have a cry let my emotions out,if I feel cross over something instead of bottling it up I do get cross, If I m tried I ll for a lie down for 1/2 to 1 hour. I do set myself something little to acheive each day so I can look back and think well yes I ve done that. ( thats the hard bit). I m 53 and was a very active person ski ing horse riding swimming etc. now I find going for a short walk needs to be followed by a lie down then get up and phone a friend. It is the body adjusting to everything so I guess we have to take note of these mood swings to pass on to the Doctors so they can get the chemistry side of things sorted, I hope this helps.

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  • Posted

    Hi lelly, I had a pituitary tomor the size of a golf ball removed from my pituitary in 2011. They also had to take 1/2 of my pituitary gland as well. I have been on Hydrocortisol since that time.  I have had the 24 hour urine tests to confirm that my body does NOT produce cortisol.  I am on synthroid to stimulate my other hormones. I wish I had better news. I had the great weight loss, symptoms all disappeared. Then in my second year they all came back, the weight, the rosasia, body aches, the mood swings, hair growth, etc. I feel horrible. I have lost my short term memory.  I can't do numbers.  My life has become a series of dissapointments.  The worst of which is my medical team not believing me now. They think that I should go back to a Mastered level job and move on.  Most days I can't get out of bed.  My body aches, I have neuropathy( thanks to Cushings). Make back kills me.  I was told before my cushings disease that I had immaculate degeneration of the spine and I have had 3 major spinal surgeries. When in fact it was Cushings causing the bones to crumble. My tumor was so large that it was laying on my optic nerves and I have not regained my periphoral vision.  I cannot retain anything I read. I have no appetite I rartely eat, yet I have put the 65lbs I lost back on....My emotions are flat.  I don't cry, laugh, get angry my affect is flat. I am devistated.  I was a whirlwind, nobody could keep up with me!  Now I am someone nobody knows. Yet my doctors think I need to go back to life before surgery! The Cushings is gone and it took my life with it.
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  • Posted

    Lelly

    I can understand your frustration with not getting diagnosed...it took them 9 years to diagnose me with Cushings. Why? Because I had "cyclic" Cushings and they did not believe in it in the 1980's. I was diagnosed in Feb of 1989 and had surgery at the University of Washington hospital in Seattle Washington in the USA and had a pituitary tumor removed. They did a MRI with dye and could only see that the stalk of the Pituitary Gland was bent suggesting a tumor. I had gained from 110 lbs to 276 lbs in 6 months and couldnt eat..

    i was eating 3 small jars of baby food a day and throwing it up. I had the buffalo hump, trunkal obesity, felt like I had the flu all the time, extreme mood swings...i named the personalities "Jeckle" and "Hyde" ..Jeckle was manic and always "on" excessive talking and little sleep, Hyde was depressed severely and i would sleep for 2 or 3 days too tired to get up.

    I knew what I had 4 years before they finally diagnosed me. I searched through the Merck Manual, a doctors book that you can view at your local library. This book is very medically intense with medical vocabulary.

    All the symptoms you list are Cushings symptoms..tell your endocrinologist that "cyclic" cushings is real..I am a survivor..I was 38 years old when I had brain surgery, I am now 63 years old.

    Do not let the doctors tell you that you dont have Cushings...because you do...if you dont get results with the dr you are seeing go to another one...I had 23 doctors when I was finally diagnosed..do NOT delay...the more you wait the more damage your body gets from the excessive cortisol in your body.

    My heart and prayers are with you.

    Pam

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  • Posted

    Hi.  I had Cushing's Syndrome which took years to diagnose even though I knew what was wrong and so did my renal specialist. However, mine was due to my adrenal gland not my piturity. Eventually in May last year they agreed to operate and took out my left gland. I had to go on steroids until my other gland realised it had to work for 2 which happened very quickly in my case.  However, I am pretty sure that my other gland is now over producing and hope I don't have to fight to get this diagnosed.  The histology showed hyperplasia and often you have to have both glands removed. I have all my Cushing's symptoms back my glucose and blood pressure are high I have more striae appearing and my weight is far above what it should be for my height and what I eat. I did a 24 hour urine collection which went to the lab 2 weeks ago today but I haven't had the results yet.  I also have been diagnosed has having very thick blood and I don't know if this is related does anybody know if it can be?
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