Weight loss after surgery

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I have just recently been diagnosed and they are almost positive that its a tumor in my pituitary gland but an MRI will confirm or deny. I'm curious about anyone's weight loss experiences after the removal of the tumor? That has been the hardest thing for me to deal with truthfully.

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  • Posted

    The weight issue depends on a few factors. What is your age? How long have you been dealing with getting diagnosed? How much weight have you gained? How rapid was the,weight gain? Months or years? Do you have the Buffalo hump, "moonie" face and trunkal obesity? If you have not taken a long time to get diagnosed, if this was a,rapid gain of weight and you are young then the reverse of your symptoms will happen sooner. If I know the answer to these questions I can give you hopefully a honest opinion. I am a Cushing survivor twice for pituitary surgery. Feel free to ask any questions, I will try to be candid with my response.

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    • Posted

      I am 19 years old and I started experiencing my symptoms around August of this past year and I gained at least 70 pounds. Yes I have the typical weight gain in my mid section and moonie face.. Thank you for replying!
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    • Posted

      Then with that information, as young as you are, with such a short period of gaining the weight, I think once you have the surgery, your recovery will be quite short and you will return back to your normal suze. I'm not positive but in my opinion this is so. I been dealing with Cushings for 30 years

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  • Posted

    I am so sorry to hear that you are not feeling well and that you've been diagnosed with this dreaded disease. Being that you are only 19 years old, I can completely understand how upsetting it is to have gained all the Cushing's weight.  You are so young and at the age that you want to feel attractive and good about yourself.

    I was in my 30's when I got diagnosed with Pituitary Cushing's.  But, I suspect that I had it for at least ten years before the diagnosis.

    The weight gain was horrific for me.....especially since I was exercising like crazy and, also, the fat was mostly in my truncal area....it was a very odd weight distribution.  I looked like a freak, to put it bluntly. People wouldn't even talk to me in public.  I went from a very strong athlete to not even being able to lift my arm up to brush my hair.

    To make a long story short, I had surgery to remove a 5mm pituitary tumor on March 3, 2003 and I am now cured and feel a million times better.

    After your surgery, you will probably be taking Prednisone or another steroid for a while until your pituitary gland starts working properly on its own. I weaned off the Prednisone rather quickly....I was lucky to be able to do this.  Some Cushing's patients have a difficult time getting off the steroid after surgery.......that will play a bit of a role in your weight loss too.

    If all goes well, the pounds should melt off of you quite easily within a few months.  You are so young and there is a lot of hope for you that this will be behind you soon and you have your whole life ahead of you.

    I wish you well and please ask any questions that you need to.

    Only another Cushie really knows what it's like to go through this.

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    • Posted

      Thank you so much for your reply! Could you describe your recovery after the surgery? I've been doing a lot of research and trying to basically prepare for the worst but I would love to hear some real life experiences

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    • Posted

      I certainly will describe my recovery after surgery for you......I woke up screaming in pain after my surgery......not to scare you....but the reason was because of how they had me positioned for 5 hours on the operating table.  My arm was tucked underneath me for so long and it hurt so badly.  But, they offered me either Tylenol or Morphine once it was established that I was okay otherwise about an hour after surgery.

      I was in the Neuro-Intensive Care Unit for 3 days and then I went to a 'step-down' type of intensive care for another 4 days.  I remember, once my arm pain went away, feeling very calm for the first time in many years.  The extreme excess cortisol gave me a constant, hyper, coffee buzz and it was so very nice to have that gone.

      The morning after surgery......like 5:30am, 2 male nurses came into my room to wheel me down to have an MRI of my brain done.  It was difficult because I was very obese and weak from everything.  They had to help move me from a rolling hospital bed onto the MRI bed.  I do have claustrophobia and that was a hard X-ray to get through.....I barely squeezed through the narrow machine. At my hospital, everyone was extremely nice......but, basically none of my nurses had any clue what Cushing's Disease was. They didn't even know I had it.  They just thought I was a 'regular' brain tumor patient.  I brought pictures with me of the way I looked before surgery and they were shocked and quite sympathetic. I had to lay on my back for about 3 days before I was allowed to sit up.....they had taken skin from the side of my upper thigh to plug the hole they cut to get to my brain...through my nose. They needed this to heal to prevent any cerebral fluid from leaking.

      When I got home from the hospital I remember being very, very sore.  My muscles were aching intensely. Cortisol is a natural anti-inflammatory and pain killer......my body got so used to the excessive amounts of it.  When the cortisol was gone, my body really went through withdrawal! I was so clueless, I didn't even take any over the counter medicine to help this.  I was also extremely nauseous.  You will be able to control this to some degree by adjusting your replacement steroid that they prescribe to you after surgery.  It will be a challenge to get the dose just right. You don't want to take too much because then you will continue to have Cushing's symptoms....but you also do not want to take too little because your body will be needing it badly.....you could go into adrenal crisis.  I weaned off of my steroid (Prednisone) rather aggressively.  I was anxious to jump start my recovery.  I was able to wean with off in about 2 months time.  But you must listen to your doctor as to your own time-line.  Some Cushing's patients need years to wean.

      I had every text book symptom of classic Cushing's Disease.  I had full blown diabetes that required me to give myself 2 shots of insulin a day.  Within about 3 weeks after surgery, my diabetes was gone.  

      The one symptom that took a very long time to go away was my heart beating so fast. My resting heart rate was like 110.  It was very scary.  It took like 4 months after surgery for it to slow down. My skin was so bad when I had Cushing's.  I had to take low dose antibiotics for over a year because I would get horrible boils and acne on my face and sties in my eyes if I tried to stop the antibiotics. My skin totally cleared up after surgery.

      the first few months after surgery , I didn't feel very good.  It was hard to walk very far and I just felt like I  had the Flu, my body was so sore.

      I was not ready to go back to work after 3 months, but my doctor (Endocrinologist) thought it would be good for me.  I had a very stressful job.......but, my supervisors and co-workers were very supportive and I got back into the swing of things fairly well. I had taken 3 months off of work prior to surgery. 

      Around 4 months after surgery is when the weight started to melt off me.  It was a beautiful thing! I was so happy! 

      I have to tell you that I was very, very ill with this disease, I was literally dying.  I cannot even express how badly I was suffering. My hair was falling out, the diabetes was brutal, 4 blood pressure medicines and it still was not under control, my excess weight was a complete nightmare. I could not even tie my shoes. I coukd not, literally walk three steps without being completely out if breathe. My muscles were terribly weak, I was sweating and my hair was greasy all the time.  The top of my head was on fire. I was exhausted but couldn't sleep.  My ribs felt like they were about to break from the weight on them from my fat. I coukd go on and on about all the symptoms that I had. I never, ever, EVER thought I would feel normal again.

      Within a years time, I was feeling so good, I coukd not believe it!

      People started saying his great sister looked and wanted to know how Zi lost all the weight. It was, and still us, just about impossible to explain to anyone what Cushing's is. Nobody has ever understood what I went through....except another Cushing's patient and my Dad.  

      My Dad was diagnosed with a brain tumor the same week as me. His was cancerous and he died 9 months later. That was the saddest event if my life, by far.  It was devastating. I was very ill, but he was even more ill.

      Anyway, it's been 14 years since surgery and I am now 52 years old and feel  pretty darn good!

      For a long time after surgery, I kept thinking the tumor was back....that my Cushing's was back.  I was so worried about a recurrence and that I wouldn't be able to 'prove' to my doctors that it was back.

      I was getting an MRI every year for a while.  Now, it's like every 3 years. I get my blood and urine tests every year.  

      I will say that Cjushing's definitely took a toll on my body.  Especially since I had it for so many years without being diagnosed.  I so wish that I fad known about this disease a lot earlier.  I was completely full blown when diagnosed.....really sick.  I want to mention that this disease also reaps havoc with your emotions and mentaltate.  I was a nervous wreck and very emotional with Cushing's. I would cry so easily.  

      There are so many details that I could go into about what I went through....it would be 100 pages long.  If you gave any specific questions, let me know....it is such a personal journey and hard to relay everything. I have never met another Cushing's patient before in person,  but I was on the Internet all the time back in 2003 while waiting for surgery.  It was a Godsend to have the Cushing's-Help forum that I belonged to.  I would read all day and night, trying to understand.  Thank God that others shared their experience and knowledge about this disease.  I would have been completely lost otherwise.

      Let me know how you are doing.....how is the testing going and how are you feeling?  You are so young, I'm just so glad that you know about this disease and will not have to suffer undiagnosed for years and years.

      I hope you are okay. Thinking if you today. 

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    • Posted

      Again thank you so much for replying! I am so sorry for the loss of your father but I'm happy that you have had such an successful recovery! I'm hoping mine will work out that well. I currently am trying to schedule with an endocrinologist at the university of Florida but they can't get me in for another two months just for the consultation and I'm struggling emotionally already but this is getting to me. Thank you for being so honest in how terrible the recovery may be, I'm going to prepare for the worst and hope for the best.. Since they are taking so long to schedule me I'm probably going to end up having to have my surgery during the fall semester at my college. I play college volleyball and this is definitely causing some problems, but thank you so much for keeping me in your thoughts!

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    • Posted

      Hi Karen,

      I have my surgery next Monday. Would you have time to correspond with me about your experience or what to expect ?

      I'm very scared.

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    • Posted

      Hi Sarah,

      I just got in from work and saw your message.  If you have questions or if I can help you in any way....please feel free to write me.

      i think we can correspond privately.....if you want....or Give me your email and we can message each other directly.

      i have a second job I am going to this evening.....so, if you don't hear back from me right away.....I will definitely get back to you.

      dont be scared......the surgery is very necessary and will help you feel a thousand times Better!

      send me private message or send me your email.

      hope you are okay

       

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    • Posted

      Hi Sarah, Please do not be scared.  We are here for you and we are all thinking of you.  It will soon be over and you will be on the road to recovery.  Be patient.  I see that we have all told you our experiences after surgery so you will have some idea what to expect.  Your body will be suffering from a huge withdrawal but will get better.  Do let us know if we can help in any way before or after.  Good Luck.
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    • Posted

      Thank you,thank you for your story.  It made fell much better.while reading I see myself there except diabetes.  I don't know for how long I have it but last year and a half  has been a  nightmare. I'm 230 pounds now. Look horrible, I don't want to leave the house and meet with friends because the moon face.  I just wish I knew about cushing before ((

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    • Posted

      I am two weeks post surgery. I am sorry you fared so badly, KarenNY. I didn't have the traumatic experience you had post surgery. I was in the intensive care unit for a day then I moved to the regular ward for another day then released. I was in the hospital for three days total including the day of surgery. I had a slight headache for less than a hour after I woke from surgery. I have lost 8 pounds in 2 weeks and my hydrocortisone medications have been reduced from 40mg per day to 30mg per day. Immediately after surgery(same day) my blood pressure and blood sugar levels were back to normal. I had the moon face, facial hair, high blood pressure, high sugar level, trunkal obesity and the hump on my upper back. I am in my late 40s so I am not young.

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    • Posted

      Hi Hoe fantastic to hear you have had such a good recovery, brilliant.  Did you have the tumour on your Pituitary Gland or your Adrenal Gland? It is great to hear about how good the surgery can be and so effective.
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    • Posted

      Hi there. Did you have headaches, neck aches, or low back pain before surgery? Or even feel like you might pass out often? I just get this heat that runs through my body and I feel like I'm going to pass out.

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    • Posted

      Hi Sonia,  Muscle aches and excessive sweating are all symptoms of Cushings.  However not everyone has the same symptoms and unless you have been diagnosed with Cushings it may not even be that.  Good luck.
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