And It's About Time There Was Some Support For Cushing's!
I am 35 years old, married for 13 years and the mother of 2. I am a R.N. and work as a Case Manager assisting the chronically ill and frail elderly. I was originally diagnosed in June of 1999. Actually, I diagnosed myself and then had my diagnosis confirmed by the doctors.
In 1999 I was the manager of the Case Management Department at the hospital for which I work. This was a very demanding and stressful job and for a very long time I either blamed my symptoms on stress or getting "old", or I simply didn't have the time to pay attention.
The symptoms became harder to ignore and this is when I began to take notice. The first thing that really got my attention was after a company party that I went to with my husband. It was a dinner/dance type of thing. We danced probably 3 times. This was not very much for me, as I love to dance but kept it to a minimum that evening to be nice to my husband ( I have to drag him on the dance floor). Anyway, that night about 2:00AM I was awakened with the most horrific pain in my legs (joints and bones). I couldn't walk. It was really bad. The pain lasted until about 10:00 the next morning. Another thing that really puzzled me was that I had not had a period in about 3 months. Of course, I had all the other symptoms too, but I had made other excuses for them....weight gain, acne, facial puffiness etc. I called to make an appointment with my PCP. I was told that I could not have an appointment for a month and a half, so much for access to healthcare.
A few weeks later my family and I went on vacation to Hawaii. It was a great trip, but I was very tired. My husband and kids kept making fun of me because I was walking so slowly. There was another surprise for me while I was there. Along with my bathing suit, I got to wear these brand new, shiny, purple STRETCH MARKS!!!!!! I was horrified, as was my daughter.
When we returned home, I broke out my nursing books, because I knew that all was not right. I turned to the endocrine section, as I felt that my symptoms seemed to be hormonally related. I came to the section on Cushing's and I had EVERY symptom. When I finally did have the appointment with my PCP, I gave her the list of my symptoms and she said that it sounded like Cushing's. I told her that was what I thought. She had never had a Cushing's patient before and had to go to her office to get her medical textbook to see what diagnostic tests she should order.
The next few weeks were filled with much frustration with my own profession. The radiology department lost my MRI, my doctor's medical assistant never returned my phone calls, my medical group denied the request for me to see an Endocrinologist, etc... Well, I changed medical groups to the one I worked for and a least this aspect of my story got better. I finally did get to an Endocrinologist and was confirmed with a 6mm pituitary tumor.
In August 1999 I had my first surgery, transphenoidal adenectomy. This surgery was unsuccessful as the surgeons were never able to penetrate my dura, due to excessive bleeding. They worked on me for 4 1/2 hours and finally aborted the surgery. This was terribly disappointing, to say the least. My father was so distraught, he had a heart attack right there in my room in the ICU and had to be taken to the cardiac care unit (never a dull moment).
I was then scheduled for a repeat surgery 1 month later. This month between surgeries was terribly difficult. I was plagued with nausea and intense anxiety. I was hospitalized twice for nausea/vomiting/dehydration and do not remember events from a 3 day period.
In September 1999, my second surgery was successful. Things were going very well post-op in the hospital until I was taken off the IV steroids. When I began the oral steroids, I flew into a massive depression coupled with severe nausea. This continued for 6 weeks. I cried every day. I was so nauseated I didn't want to do anything. I thought I was loosing my mind. My family agreed. My husband was great. I would just cry and cry and he would just hug me. I appreciated his love.
In November, I began to be able to function more "normally". I went back to work December 1st, but asked to take a demotion. My priorities were less career focused at this time. The tapering of the steroids then continued for me until September of 2000. I had to come off very slowly, as I became very symptomatic with fatigue, anxiety and nausea with even the slightest decrease.
After coming off all of the steroids in September, there were still difficulties. My body felt like I was 75 years old. I had massive muscle and joint pain combined with weakness. My PCP told me that I would probably be like this forever and my endocrinologist told me to see a psychiatrist. Well, I did see the psychiatrist who confirmed that I was not crazy and in December the pain went away. I was soooooo happy. I felt great! I started biking with my kids again and was walking 3 miles 3 times a week. This lasted through January.
Then in February of this year, I started to notice some symptoms again. I was trying so hard to loose weight, but only gaining. I was getting acne on my chest and back again. I could feel my heart beating hard. My hands were shaking. I checked my blood pressure and it was 186/110. I continued to check my blood pressure over the next few days and it remained high. I brought this information into my PCP. He assured me that I didn't have the Cushing's again and said that this happens to all of us as we get older and put on extra pounds. I knew that he was wrong. He pacified me by ordering a 24hr urine for free cortisol which came back at 492-high.
So, here I am again. This time I think I know more and maybe it will be easier. The last few weeks I have gone through all of the tests and will be seeing a Neurosurgeon at UCSF soon. The recurrence of the tumor has been confirmed. I am a bit concerned, because I know after a failed surgery, the chances for complete cure are reduced to 50%. I will pray though, because I have faith that God can heal me.
I pray also, for all of the people afflicted by this disease. God Bless.
I survived all of the incessant testing and it was concluded that indeed I did again have Cushing's. I was determined to see the best doctors in the area this time, so I got an appointment with UCSF neurosurgeon Dr. C harles Wilson. I also began seeing endocrinologist, Dr. Blake Tyrrell of UCSF. I had a consult with Dr. Wilson in June of 2001. We discussed my options, which were from his point of view, external beam radiation or a repeat exploratory transsphenoidal surgery. I chose surgery. He unfortunately was nursing a bum thumb and was not doing surgeries at that time. He referred me to his associate.
I spoke with the new doc the same day. He also mentioned gamma knife radiosurgery as an option, but I still wanted to stick with the transsphenoidal, hoping for an immediate cure. Any type of radiation, including gamma knife, takes months to years before becoming effective, if ever. That day I also got my surgery date, June 19, 2001.
As I waited for surgery, I became increasingly weak. It was so hard for me to even make it up the stairs to my bedroom. I could not stand for longer than a few minutes at a time without sitting down to rest. I could not sit in church because my back hurt so badly. The only way I got any relief was to lie down. I then developed a fever about a week before surgery, which prompted a visit to the ER. Well, this was a blessing in disguise, because apparently my potassium level was dangerously low, which was causing my extreme fatigue and weakness.
I did have the surgery as scheduled and unfortunately it was unsuccessful. They did immediate dexamethasone suppression tests after surgery and I did not suppress, cortisol still was high. This was pretty depressing, but I was half expecting it. My surgeon again began to discuss gamma knife. I didn't know what to do. I was discharged from the hospital in a mere 24 hours. This was too quick, in my opinion.
The next few weeks were filled with gathering information and recovering from surgery. I saw another neurosurgeon to get another opinion to see if I was appropriate for gamma knife. He felt that I was. The new MRI that I had done showed a thickening of the cavernous sinus wall and he felt that if they targeted that as well as the entire pit, it might be effective. I did more research. I talked (e-mailed) others that had had similar circumstances. I then came to the decision that I wanted all of this over right now and decided to have a bilateral adrenalectomy.
I searched for a surgeon that knew how to do this procedure laparoscopically, and then proceeded. I had this surgery August 23, 2001. Today, I am one month and one day post-op. I am recovering well from the surgery. The cortisol withdrawal is not as bad as the last time, although I am tapering the steroids much slower this time. I am now on 35mg of hydrocortisone. I am having fatigue and some nausea, but it is nowhere nearly as debilitating as the previous time I went through withdrawals. I will have to take hydrocortisone and Florinef for the rest of my life. I think this is better than living with Cushing's, however.
I now fear Nelson's Syndrome, which occurs in some patients with bilateral adrenalectomies. It is caused by continued high levels of ACTH produced from the remaining pituitary tumor. It manifests itself through hyperpigmentation of the skin. The plan for me now is to have my ACTH tested every three months, to have a brain MRI every 6 months for one year and then annually thereafter. If there is any sign that the tumor is growing or producing too much ACTH, I will then have the gamma knife treatment to irradiate it.
This has been such a long and difficult struggle and it is not over. I am not sure, at this point, if it will ever be completely over. I do go on though, as I have to for my 2 beautiful children that need a mom. I will return to work in 5 weeks and hope that all of our lives can get back to normal, somehow.
God has given me the strength to get through all of this. He has brought wonderful people into my life to support me through the most difficult times. I thank Him for His mercy and I ask Him for His peace.
God Bless
Lorrie
Read Article: Coping: Cushing's and Children
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