Stephen's Story...

While Mary O calls Cushing's an "awful", "terrible" disease I think that's being too easy on it. It's INSIDIOUS. It has the power to attack every aspect of our being and it uses it to your detriment. It attacks you at your very core. I've sent a picture of what Cushing's might look like. The following is a very long bio. Too long. It prints out at 1.5 pages. Skim it, skip it, do what you like.

Beginning around 1985 I started seeing my doctor more and more frequently for a myriad of seemingly disparate health problems, i.e. high blood pressure, red blotches on my face and body, odd bruising, thin and fragile skin. My skin was very oily. I had an odd body odor. I would sweat profusely at the least physical exertion. It goes on. My finger tips developed cracks, sores and bled, right along the fingerprint lines. There was a period when I had to tape the cracks closed. They just wouldn't heal. I was putting on weight with no change in my diet. As a gift my family gave me a membership in Weight Watchers and even though I prepared my meals with them they didn't believe I was really following the program. I guess I can't blame them. In one or two months I was in Weight Watchers I went from 145 lbs. to 197 lbs.

Then in 1991, at one of my biannual dental check ups, my dentist told me he was seeing an unusual number of new cavities and all in odd places. Fortunately for me he had been very interested in endocrinology in med school and, having been my dental practitioner for over 10 years, he felt justified in telling me this. He also noted other aspects of my physique had changed, i.e. I needed a larger neck cord for the bib, my positioning in the chair needed changing as well as my complexion being ruddier. He knew I had been having unusual, seemingly unrelated health problems for several years. He felt all of these were indications of my having developed a compromised immune system. Her told me to have my General Practitioner call him. He then took it upon himself to call her the next day. He explained his findings and recommend she immediately start tests. This, coming from another medical practitioner, supported our feelings that there had to be a common cause for the plethora of health problems I'd been having.

The first test, naturally, was for HIV/AIDS. This was back in 1991 when results for this test took about 2 weeks. Needless to say it was a brutal 2 weeks of waiting. During this waiting period my G.P had me come in for a consult and other exams. When I disrobed and she saw the large purple striae/stretch marks that I had on both sides of my abdomen the pieces of the puzzle started to fall together. She recognized them as late stages of Cushing's and yelped, "YOU'VE GOT CUSHING'S!!!" X-rays for tumor(s) in my lungs revealed no tumor(s) but did show two fractured ribs. Other X-rays showed significant degeneration of the basal joint of my left thumb, or what's called "gamekeeper's thumb". Both of these were attributed to osteoporosis, possibly/probably a result of my developing Cushing's Disease. A CT scan showed a large ACTH producing pituitary adenoma with supercellular expansion. I had Cushing's Disease. At the time we were elated to have found there was in fact one common cause for the problems I had been enduring for years. I ecstatically told people, "I have a brain tumor! That's been the problem all along!". Little did I know. Transphenoidal surgery was recommended. I went and had other neurologic consults, all of whom concurred. Dr. Charles Wilson at UCSF Medical Center went so far as to say the tumor was unusually large for Cushing's. I underwent the transphenoidal surgery. It was unsuccessful. Since 1991 I've had transphenoidal surgery, 2 months of daily radiation treatments, a left pterional craniotomy, in excess of 5 sterotactic cyberknife radio surgery sessions at Stanford University Medical Center in Stanford, California. All to no avail. I'm now scheduled for a bilateral laparoscopic adrenalectomy (removal of both adrenal glands) in early May.

The reasoning behind the adrenalectomy? Stanford has never needed more than two sessions for this type of tumor. With the third session they made it perfectly clear we were essentially in "uncharted waters". With the fifth we were in The Bermuda Triangle. In August 2002, about a year after the last session I went blind in my left eye. The consensus is it's a result of several things, among them being RON (radiation optic neuropathy) due to excessive radiation, vascular etiology (weakened blood vessels) as well as my having polycithemia vera (thick blood). With the tumor's resistance to radiation, fear of damaging my right eye with additional radio surgery and how long I've been on ketoconizole to keep my cortisol levels acceptable we have to take a different approach to getting control of my cortisol levels. With the adrenalectomy we will be able to control my cortisol and other hormone levels supplementally. And the tumor? We'll address that question when it becomes absolutely necessary, i.e. vision problems with my right eye or it gets too large for the cavity.

Update

On Sunday May 4th I registered at Kaiser Permanente in Oakland, CA for a BA (bilateral adrenalectomy) which was to be performed Laparoscopically.

On Monday May 5th I went into the OR for a BLA. A 2" incision on the left side was made for the video camera and get the "lay of the land". Things didn't look very promising. Scar tissue from a hemicolectomy done in 1989 was going to cause significant problems. They went in and everything they touched bled. This wasn't going to be a BA done Laparoscopically. They changed gears and went to doing a conventional BA, opening me from sternum to navel. After I was filleted like a fish they went to do the left and everything shredded and bled when touched. They stopped and went to look at the right side only to find everything very fibrous and ready to bleed. It was obvious there was nothing to be done so they stopped and zipped me up like a zipper with stainless steel staples. Needless to say it was a "bummer" for everyone. I was moved to the ICU where I remained for four days to recover from the surgery and to deal with a respiratory problem that had developed. I went home on May 10th.

On May 20th when the staples were removed we discussed the next course of action. The surgeon is of the opinion that in about 3-5 months, after I've healed from this surgery that we'll try another procedure, a left and right Retroperitonal Adrenalectomy. This procedure accesses the adrenals through the back. It is my hope this can be done laparascopically. I will be discussing this with the surgeon as the time approaches.

If anyone has first hand experience with Retroperitonal Adrenalectomy I would really appreciate your letting me know what to expect. It may be laparoscopic and it may not. Any first hand experience with either or both of these procedures would be greatly appreciated. I can be e-mailed at ilgallo2@yahoo.com.

Best to all;

SteveB (Steve Bondi)

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