The most common questions the CSRF receives via phone or email involves the struggle through recovery.  For that reason, we asked our members to answer the question, “What do you and your family/friends wish they knew about recovery from Cushing’s?”  We are hopeful that these experiences will be helpful to you!

From Beth B. (Spring, 2014)

As we all know too well, Cushing’s Disease thoroughly affects every part of one’s body, mind, and life. When I was first learning about the transspheniodal pituitary neurosurgery, initially I thought you have the surgery, take a little time to recovery, and life would be back to normal. Not so fast! Remember learning the pituitary is the “master gland?!” As one friend so kindly said to me, “It ain’t called the master gland for nothing!” You heal from the surgery itself in normal time, but your body adjusting to the reduction of cortisol does take much longer. Don’t worry, you do feel better, but “normal” takes a while to achieve. For me, recovery was 2 years 3 months.

There are so many things I was never told about my recovery journey that I wish I had known. First, doctors never mentioned I should wear a medical alert bracelet. A local friend who had been through Cushing’s told me to look into it. When I asked why, she stated that post-op, my body would not be producing enough cortisol and if my cortisol levels dropped too much, it could cause adrenal shock. I found a place on-line and had one made with “adrenal insufficient” on it and my doctor’s name and phone number. I figured if EMS found me somewhere, calling my husband was not quite as useful as them calling my doctor!

No one ever mentioned that after a month and a half post-op, my joints would suddenly be in tremendous pain, and bending over would be impossible. I had been exercising and doing yoga until one morning a month and a half after surgery. I thought I was dying when I woke up and the joint pain had suddenly started. Come to find out, it is part of recovery, and it does eventually go away.
Also, I had no idea I would need so much sleep. During recovery, getting up in the morning was work. Anyone who has been through Cushing’s knows how big of a switch this is. When I had Cushing’s, I was used to sleeping maybe 2 or 4 hours a night, waking up long before normal waking hours. After surgery, it was tough to wake up and get moving, and I took many naps. This too gets better as your body recovers.

Doctors told me every few months I would need to stop my cortisol replacement medication for a few days so they could test my blood cortisol levels. No one mentioned how that would make me feel! I likened it to being a slug. Normally a go-getter when it comes to getting things done, when I stopped my medicine, all I could do was lay on the couch. After the first time of stopping my medication, I learned to plan ahead. I would set it for a weekend with no plans and no responsibilities (in other words, someone could watch my young son!). I also realized it was a great time to reduce the amount of cortisol replacing medicine once I was allowed to start back on my medicine. I figured I had already gone a few days without the medicine, there was no reason to go back to that full amount.

Ecstatic to be on the recovery side of Cushing’s, I could not figure out why at 8 months post-op I was suddenly unable to stop crying or pull myself out of bed. I called my doctor and his response was simple, “Of course you are going to experience depression – you have no pituitary thus no thyroid function.” It would have been so helpful to know this could be a possible side effect of my pituitary not yet functioning. Once my pituitary started functioning again, the depression was gone and I no longer needed an antidepressant.

Recovery from Cushing’s Disease is not for the faint of heart. However, if you have survived to this point living with having Cushing’s, you are obviously one tough cookie, and this too you will survive.

From Chris S. (Winter, 2013)

I’m yet another person who went a long time before being diagnosed with Cushing’s and had most of the typical symptoms. Luckily for me, I was diagnosed, had surgery to remove an adrenal tumor shortly thereafter, and went through the recovery process. I’d like to say that recovery was easy, but that would be a lie. However, as time passes and memories fade, it doesn’t seem like it was so bad. I suppose the saying “time heals all wounds” is apropo. I think my recovery would have been easier if I’d had a crystal ball and been able to see what was to come:

1 Week post-surgery

1 month post-surgery

3 months post-surgery

6 months post-surgery

1 year post-surgery

2 years post-surgery

5 years post-surgery

Even without a crystal ball, I knew before surgery that my positive outlook, family, friends, and faith would sustain me through my recovery and that I’d come through it a new person, or rather back to the person I was before Cushing’s. My wish for all other people facing a long recovery is that they have the same network and support in place to help them through the journey.

From Heather S.  (Summer, 2013)

In Nov. 2011 I had transsphenoidal surgery to remove a 4mm pituitary tumor. My endocrinologist told me what to expect from my recovery and her exact words were “you will feel like you’ve been hit by a bus.” I truly appreciated her candidness in my crisis, but recovering from Cushing’s is difficult to mentally prepare for. Here’s a few brief thoughts from my ongoing recovery:

1. Epic nose gushes post transsphenoidal surgery. I’ll spare the gory details, but it will impress your 5-year-old kid and completely horrify your spouse.

2. Recovering from Cushing’s can be a lonely process. Your healthy friends, family, and spouse cannot understand what you’re going through. Although they may empathize, the “Cushing’s experience” is a difficult one to share. They watched my exhaustive journey towards a diagnosis, and assumed that journey ended at surgery. For Cushing’s patients, surgery is merely the first step towards recovery, which is a long and arduous undertaking.

3. You might look better than you feel. The emotional and physical pain from Cushing’s run deep. My physical appearance returned to “normal” fairly soon after my surgery, and I assumed that my depression and anxiety would disappear too—it didn’t. Many friends would say “You look great!” and expect my response to be “I feel great!” when in truth I was an emotional wreck. My recovery from Cushing’s has been one-third physical and two-thirds emotional. (also see #2 “Recovering from Cushing’s can be a lonely process.”)

4. It’s O.K. to feel discouraged. It’s been nearly two years since my surgery and I am still on hydrocortisone replacement. This is incredibly frustrating as I arrogantly presumed I would be off my steroids six months post-op. My husband jokes that I need to “wake up my pituitary” and I’ve made several ridiculous attempts—including the completion of the “Insanity” workout system and excessive juicing—all to no avail. The pituitary gland is quite stubborn and I am reluctantly coming to terms with this.

5. Adjusting to a “new normal” isn’t easy. I will never be that spry carefree 30-something before my illness. Cushing’s stripped me of my identity—leaving me with nagging fears for my health, and annoying aches and pains. Now entering my 40s, I am rediscovering myself post-Cushing’s. I constantly remind myself that I am healthier, I will be stronger, and that each day is a milestone towards a new me.

From Elissa K. (Spring, 2013)

My recovery from Cushing’s disease taught me the true meaning of the proverb “patience is a virtue.”  I was diagnosed with Cushing’s disease at 21 while a senior in college and had pituitary surgery a few months later in May of 2004.  I was not far from years of teenage angst and eager to start my career and new life in New York City.  I dreamed of a job in the high pressure environment of investment banking, where my friends were working 100 hour weeks and watching the sun come up from their desk chairs.  Such a life, however, is not in the cards for a person recovering from Cushing’s disease no matter how much she pushes herself.

Recovery from Cushing’s disease takes time and there are just no short cuts.  I learned that the hard way.  My first mistake was taking just one week off from work.  “Yes, I had brain surgery, but I’ll be in on Monday.”  On day two back at work, I had to leave early as I started to have a terrible headache.  On day three, I didn’t even make it into work.  I did make it to the emergency room.  I had SIADH, a common complication of pituitary surgery that caused my body to quickly lose its sodium.   The treatment was water restriction (read: more urine collection) and a prescription to eat salt.  I never thought I could get sick of potato chips…  Recovery from SIADH took another couple of weeks.  I still didn’t know just how long this process would take and how long it was going to be before I felt “normal.”

Once you’ve moved on from the immediate impact of having surgery, you then get to focus on a little matter of tapering.  My doctor explained to me that I was basically addicted to cortisol and, just as a drug addict uses methadone to wean off of heroine, I would use hydrocortisone to slowly wean my body off of steroids.  Slowly being the key adverb here.  I felt like going to my endocrinologist was just like going to a psychiatrist. We would discuss how I was “feeling” and make a decision on whether to change my dose of hydrocortisone.  Often I would try to go down by just 5 mg and find I was light-headed and weak, struggling to get through the day.  I’d feel defeated and resigned to a life addicted to the “roids”.  Yet, progress was happening.  I just had to be patient enough to see it.  Each month I was a little bit thinner, a little bit more energetic, and a little bit happier.  Friends I hadn’t seen since graduation six months earlier would remark how amazing I looked.  I had forgotten that I wasn’t always so fat.

As I gained more strength and confidence, I got bolder.  When I got to my one-year anniversary, my doctor and I decided to try an ACTH stimulation test.  I failed.  I honestly was beginning to believe that my pituitary gland was never going to make it’s own ACTH again and I’d be taking steroids forever.  I felt chained to my endocrinologist.  Meanwhile, my sister needed a travel buddy to go with her to Machu Picchu.  It would involve a four-day hike at high altitude.  Thankfully, my sister is a doctor.  We decided that I’d come along with a big stack of hydrocortisone.  I made it.  The four-day trek was difficult, but I finally realized that there is life after Cushing’s disease.  I kept taking my hydrocortisone and at 18-months I finally passed the ACTH stimulation test.  Two years after surgery I completed a half marathon (mostly running).

The day I had my surgery, I was eager for my journey with Cushing’s to be over and I was ready to move on with my life.  No one told me it was going to take two years to be at 100%.  Well, maybe they did, but I didn’t listen.  I thought I was different.  But now I know that patience is indeed a virtue and if you just keep pushing forward, recovery, however slow, does advance.

From Ellen W. (Winter, 2012)

Once I had to have major work done on my house.  I kept asking the contractor about all the things that could go wrong.  Finally, he said, “Well, you’ve got to hope for the best, but prepare for the worst.”  Words to live by when recovering from Cushing’s! Recovery from Cushing’s surgery is unpredictable.  Some people are miserable, and others sail right through. My endocrinologist told me that generally, the longer you have had Cushing’s, the longer your recovery will take. However, it’s not always easy to pinpoint the beginning of your illness.

I wish I had known was how hard it was going to be, and I wish my husband had known, too.  My doctors tried to tell me, and one endocrinologist advised me to take six months off work.  Would I listen?  I would not!  So I pushed myself to do too much and wound up even sicker.  If I had known how exhausted I would be, I would not have put so much pressure on myself to get back to work and all of my normal activities.

In Cushing’s disease, pituitary function is suppressed.  While your tumor is gushing ACTH, your pituitary gland is on a beach somewhere, drinking cocktails with little umbrellas in them and watching the sunset.  When the tumor is removed, your pituitary gland has to be brought back to the office, kicking and screaming.   This is accomplished by giving you just enough steroids to keep you alive, but little enough to alarm the pituitary gland into action.  So it’s no surprise that you can feel like you’re at death’s door.  During this process, I had no energy at all, and was severely depressed. At one point I called a nursing hotline and told the nurse I didn’t feel like living.   The nurse, worried about suicide, asked, “Have you made a plan?”  My first thought was, “A plan?  I’d have to make a plan?  In that case, forget it.”

If I had been better prepared, I would have lined up more friends to help.  I would have filled the freezer with comforting food that could be easily heated up (or eaten frozen).  I would have kept a daily journal in which I briefly described my activities, so that over time I could see my subtle but gradual improvement.  I would have gone sooner to a psychiatrist for antidepressant medication. I would have insisted that my husband also sought counseling for himself to deal with the impact of my illness on him.

So my advice to those undergoing surgery for Cushing’s is to assume you’re going to be really sick, by which I mean achy, depressed, nauseated, and lethargic, for several months at least.  Make arrangements for it to be as easy on you as possible.  Lower your housekeeping standards.  Don’t be shy when it comes to asking for help!  Then, if your recovery turns out to be easier than expected, well, so much the better.

There is one more thing I know now, that I wasn’t so sure of back then – it WILL get better!  When I was in the midst of recovery, I felt hopeless.  But gradually I found I was able to do more and more, and felt increasingly normal.  It’s a new normal, and I will probably always have to be careful not to overextend myself, but I am healthier now than I have been in years.Best of luck to you!

From Karen C. (Winter, 2012)

I wish I knew that it was difficult!  I had Cushing’s back in the early ‘90’s.  The CSRF didn’t exist then so the only information I had was what my doctor’s told me.  At first, I was thrilled that after 3 years and 21 different doctors, I finally had a diagnosis!  If it was diagnosed, it would get better, right?  That was also back before the internet was popular and trying to find any information was difficult, let alone finding anyone else who had Cushing’s.   I had bilateral adrenal hyperplasia, so rather than immediately remove my adrenal glands, my doctors started me on ketoconazaole. I started to feel awful after about 3 days.  I complained to my doctors that the keto was making me sick.  They told me it wasn’t the keto, but never explained what it was.  That left me frantic to prove to them that it was the keto and I didn’t want to take it.  I was obsessed with documenting everything; every symptom, the time of day it occurred, etc. None of the nursing textbooks that I’d read said anything about the aches and pains, fatigue and nausea.  In retrospect, I now know that it was the dreaded steroid withdrawal and it was actually a good thing to feel miserable because that meant that the keto was working.  I just wasn’t prepared to spend 3 months in bed!  If the steroid withdrawal had been explained to me, I think I would have been better able to cope rather than feeling helpless.  I started thinking maybe what I had couldn’t be treated.  Then what?  This certainly wasn’t any quality of life.

I wish I knew  it would be long and gradual.  My expectations were that I’d quickly see changes.  Yes, in the first 3 months, the weight literally fell off, but everything else got worse!  Finally at about month 4, I started keeping a bit of a journal.  From then on, I could look back several weeks or a month and I could tell that I was gradually starting to do a bit more.  One of the first things I noticed is that I could concentrate enough to read a short newspaper article, then in another 2 weeks or so, I could read and remember something in a magazine.  It really helped to find something positive, rather than being so focused on what was wrong with me.

I wish I knew that recovery sometimes isn’t complete for everyone.  After about a year on the keto, my quality of life was at a stage where I could deal with it, but I didn’t really feel myself and sure couldn’t do what did before Cushing’s came along.  Eventually the keto stopped working and I had both of my adrenals out in 1994.  I was thinking, now, I’ll get back to normal.  About 6 months after having my adrenals removed, I’ll never forget sitting in my endo’s office and being told that he thought he had done everything he could for me.  I was devastated.   I still hurt, I was still weak, I still couldn’t think straight and worst of all, I knew I couldn’t work.  I started thinking there was something wrong with me as a person:  that I was lazy or not motivated.  Yes, it was better than with Cushing’s, but this just wasn’t me.  It was never explained that improvements can come along gradually over a number of years and that you might not be your old self again. Had I been gradually prepared that I might not be what I was before, I think it would have been easier to deal with the grief that comes from losing your health, your career and not having children.

I wish everyone understood what Cushing’s is and how devastating an illness it can be. You don’t know how many times I heard “You look great!” while my mind is going, if you only could understand how I felt. If everyone knew about Cushing’s, chances are that I could have been diagnosed sooner and who knows, if I’d been diagnosed sooner, I might be closer to my old normal. I’ve grown a lot as a Christian since my Cushing’s days and I wish I’d leaned on God sooner.  His will be done.  I wish my family and friends had understood how serious this was.  I’ll never forget my father’s extreme disappointment in me when I went on disability, and at the time, I really felt it was my fault.  Now I know better and that I’m not so different than many others and that in itself makes it easier to cope.

About 3 years after my bilateral adrenalectomy, I started taking a class, which I think really helped me learn to concentrate again and helped me get out of my very small world.  After having some success with one class, I decided to pursue a master’s degree, since school was an easier pace than a full time job.  Yes, I did finish my master’s, which I couldn’t have done during Cushing’s.  It took me 7 years to complete what a normal person does in 1 ½ years in that program.  So, almost 19 years after having Cushing’s, am I back to where I was before?  No, but over time, I have learned to be content with my “new normal” as I’ve heard it called.  I just wish I knew then what I know now as I wouldn’t have been so hard on myself .  Yes, life is soooo much better than with Cushing’s and I’m very thankful for that.  The road is long and hard, but yes, it does get soooo much better.

From Lee C. (Winter, 2012)

What would I have wanted to know then that I did not know? It seems like an easy answer at first, now that I am fifteen years past a bilateral adrenalectomy and ensuing recovery, but it isn’t quite that easy.  One part of me says that I would not have wanted to know anything else.

The biggest part of my motivation came from my family. After five years of disintegrating before their eyes with no answers I felt we found an answer with the surgeries and I just needed to work hard to get back to where I was before the daily struggles started. Another part of my motivation came from not asking any questions. I just wanted to get out of that hospital and start making up for lost time. There was a reluctance to ask a question that might yield an answer I did not want to hear.  So I didn’t ask questions.

That was not a foolproof plan. Questions might have helped me plan a better approach to the recovery. Instead of pushing things far too fast I could have looked for the signs that showed progress and planned accordingly. I don’t know if you can really put Cushing’s recovery on a detailed timeline because everybody is different. It would work better to look for targets and increase the expectations for additional challenges, both mentally and physically.

Growing up as a competitor and being relatively young when I encountered Cushing’s, there were some markers in my favor. Being in the midst of varsity football practice six weeks after the bilateral adrenalectomy and teaching full time a few weeks later was too much. Soon after complications started to pile up and in mid-September I collapsed in the hallway from the pain in a failed attempt to get to the office and summon help. A colleague on each side carried me outside and rushed me to the ER and it was still morning but a breaking storm featured crackling thunder and lightning strikes as they drug me outside.  I felt like the end was near and the setting reinforced the pain and fatigue. At the ER entrance, the nurse asked what was the matter and I could only laugh because I knew there was not enough time to explain the whole Cushing’s saga before getting the needed medical attention.  I did take the lesson to heart though and I paid more attention to my body. I did what I could each day but I quit trying to catch up for lost years over the span of just a few months. A stumble ahead and two steps reeling back was not an effective plan. It took about 6 months but there it was, I looked in the mirror and recognized someone I had not seen in half a decdecade.  Even with that, I went probably seven or eight years before I mustered up the courage to ask my endocrinologist what the long term prognosis was. He laughed a little and replied that, with maintaining the regimen of replacement hydrocortisone, I should expect to live a typical lifespan. I don’t know if I believed him or not but just being comfortable enough to ask the question was a signal of recovery.

To sum it up, there is so much more available for people battling Cushing’s today. CSRF has provided a forum for education and support that can be accessed in many ways and the resulting network keeps building upon itself. It is not where it needs to be though and we need to keep working towards a goal of every doctor having the resources to make quick diagnosis and get patients onto a speedy recovery. Personally, I feel my recovery will not be complete until I have finished out this second chance and done what I can to make sure other Cushing’s patients do not have to rely on anything less than reliable information in accessible forms that lead to treatments and recoveries that are respectful and effective.

From Louise P. (Winter, 2012)

After years of suffering with Cushing’s, I finally was diagnosed. I would get this over, and go on with my life.  I was not told anything about my surgery or recovery.  The surgeon had to break my ribs to reach the adrenal gland, which lies on top of the kidney. He made a seven inch incision in my back. When I woke, I was in unbearable pain. One lung had collapsed during surgery, making it difficult to breathe. I was still optimistic that I was finally on the road to being normal once again. Unfortunately, it would be another 3 plus years before this dream was realized.

After I returned home, I was in bed for the better part of most days for several months because of overwhelming fatigue (perhaps because I had not slept in three years) and I was on prednisone twice a day because I had no cortisol in my body.  I really felt cheated because I really didn’t feel any different than I had before surgery   The PLAN was to continue on the prednisone, but to gradually wean myself from high doses so that my atrophied gland would get the signal to start producing.  Easier said than done, as even the slightest reduction in dose resulted in aches and pains, flu-like symptoms, and severe fatigue.

The road to recovery was a roller coaster ride. I became discouraged and depressed. I looked worse than ever and was told, it would easily be a year before I returned to normal  ANOTHER YEAR????? Another year of not feeling well…unable to make plans or commitments because I was never able to predict how I would feel?  I felt like my life was over.  NEVER knowing what was going to happen day by day.  I needed DESPERATELY to talk to someone who had gone through this to help me on this long journey.  There was NO ONE!  So, you all know what happened then.  I spent all my sad days getting CSRF off the ground. I had to concentrate on doing this so others would not have to go through what I did.

PS  One reason it took so long (over 3 years) for recovery, is I should have been on hydrocortisone, not prednisone. Prednisone stays in your body for a long time, so it is more difficult to wean.

Do you want to answer this question?  If so, email your answer to [email protected]!