COLUMNISTS' CORNER

was never suggested to Cindy to see an endocrinologist nor was it explained to her that this RCC could be causing hormonal issues and degrading her quality of life.

Cindy’s headaches continued so she sought another neurosurgeon’s opinion, and again he said no surgery. Again, no one talked to them about seeing an endocrinologist. In fact, neither Cindy nor her mother or fiancé ever assumed that the medical teams they were seeing were not qualified as experts with pituitary surgery. This is why I always say, “People don’t know what they don’t know.” So again, Cindy proceeded to appear weaker, with more quality of life issues and bad headaches. So, again, they sought another neurosurgeon’s opinion. Only this time, the neurosurgeon said, “Yes, Cindy you need surgery. I will take the entire thing out. That way it won’t come back.” The surgeon was cocky and very confident and the only thing he explained to both Cindy and her mother was that Cindy would need to be on an anti-diuretic hormone for the rest of her life. Other than that, he said, she would do just fine. He explained he would be taking out her entire pituitary gland as well as her pituitary stalk, but that way the RCC would not come back.

   The surgeon spoke with confidence and assurance; he sounded like he had done this a million times and even made it sound like it was a very routine procedure. And since this certainly seemed like a better solution than leaving the RCC and having horrible headaches, she agreed to have surgery. Again, there had been no talk of an endocrinologist getting involved at all, and she had never had a hormonal evaluation.

   The surgeon took her into surgery, with intending to remove her entire pituitary gland and her pituitary stalk. He mentioned nothing about any other hormone replacement at all, just anti-diuretics.

   After surgery, just like the surgeon told them, Cindy was started on DDAVP - an anti-diuretic. After surgery the surgeon explained to Cindy’s mother and fiancé that the surgery went well and that he took the entire gland and stalk. And as he put it, “Now it can’t come back.” Of course again they did not know what they did not know and they assumed the medical team was doing everything to help Cindy get better.

   Well, they released Cindy from the hospital a few days later. However, she appeared to be even weaker and sicker than when she went into surgery. Everyone just chalked it up to the surgery.

The surgeon never asked for an endocrine evaluation; he removed her entire pituitary gland and stalk but never started her on any hormone replacement. She was not sent home on steroids of any kind, nor was it ever suggested she seek help from an endocrinologist. After a few weeks, Cindy went downhill drastically. She could not talk at this point and when she did, she sounded like she was talking baby talk. Scared and unsure what to do, her mother took her back to see the neurosurgeon, but he refused to see her. He said his job was done, but he suggested she seek a mental health professional. He said Cindy was doing this to herself for attention because there was nothing wrong with her.

Joan took Cindy right away to another doctor who committed Cindy that afternoon to a mental hospital. They kept her there because she could not eat, speak or walk and all she could do is sleep. But again, no one realized that the neurosurgeon had taken out her pituitary and the stalk. There is much more to this story but for the sake of the article I will condense it, and tell you Cindy stayed in the mental hospital without hormones of any kind for nearly two months. They had her on IV to keep her alive and one day they even forgot to give her the DDAVP and that’s when she started convulsing and finally a physician realized Cindy was dying and would not make it through the night. He finally discovered she had absolutely no hormonal function for almost two months and that’s why she was insane.

Unfortunately, the damage was done, and although Cindy survived, she has had numerous surgeries. They removed her colon, part of her liver is dead and her kidneys are failing. Cindy’s mother is raising her grandson who is now 13 years old who has special needs because of his anger at watching his life ripped away from him. Cindy lives full time in a nursing home at 30 years old. Her fiancé hung in there as long as he could but finally decided he needed a better life for himself and left her.

There was a lawsuit started but they ran out of money and energy so the surgeon is free to do it again. It is gross negligence to remove a patient’s pituitary gland and pituitary stalk, without recommending hormone replacement, knowing that no one can survive without hormones.

This is just one sad horrible story but I can guarantee there are others. I think over and over, “Why didn’t I meet her just a few months earlier? This should have never happened.”

I plead with everyone that reads this to support the PNA, in all their efforts to help raise awareness and to educate medical professionals. This is a tragedy that could have been avoided but we need your help. Help do whatever it takes to get the word out; pituitary and/or hormonal disorders are treatable when a correct and timely diagnosis is made and appropriate treatment is started. There’s no excuse for things like this to go on in America or anywhere for that matter.

Thank you to Bob Knutzen and all the PNA staff for all they do to help patients!

Peace and blessings,
Sharmyn
Patient advocate, published author, professional speaker.

Jim Shelton: A Patient’s Perspective

   Spring 2003

Editor’s note: Mr. Shelton’s column is told in serial form, with each column forming another chapter in his fight against pituitary disease and his inspirational journey back to health.

   Prior to the pituitary disorder, I would frequently have my friends over for barbecues and pool parties. But in recent times, I just didn't have the energy to support much of a social life. However, I had become somewhat famous for throwing a great New Year's party! Even though I had been fighting constant sinus infections and colds for the last couple of months, I was excited about having all my friends over to party with me at my condo. It had been a rough year and I couldn't think of anything better than celebrating the new year and leaving 2002 behind. As usual, I adorned my place with tons of lights, lots of New Year's decorations and plenty of party favors. My friends complimented me on how festive my condo looked, but they seemed perplexed that my Rocketwing was sitting in my living room, as it had been for the last three years. That's the bright red racing bike that I had bought in 2000, but hadn't been able to ride due to illness and being much too heavy. I guess at 300 pounds, it was hard to believe that there was still an athlete somewhere inside…

   "Jim, why don't you sell that bike? You could certainly use the money - especially since you're unemployed. Besides, you don't ride bikes anymore, do you?" I'm sure I sounded naïve and perhaps foolish with my response. "No, I haven't been on my bike in a long, long time. But after the new year, I'm going to start back on my fitness program and begin losing weight again. And someday I am going to ride the Rocketwing in a time trial race..." "Yeah, right! Have another drink Jimbo..." I wasn't surprised that they 'just didn't get it' - that that bike was a symbol of hope, my way of saying that I would hold on to my dreams even when it seemed like I had no logical reason to continue to do so.

   Despite the lack of support from my friends, by the second week of January, my latest comeback was underway. My previous fitness programs had been mostly centered on riding my bike. However, this time I felt I needed something even more effective. I had bought a book several months earlier, "Body-for-Life", that outlined an approach combining aerobic exercise, weight training and sensible nutrition. There were no gimmicks or magical quick fixes. It was based on fundamentals and after reading the book I was convinced it was the best approach for me. However, after the first week of working out I began to have doubts. Could it be that this program was too hard for me? Could my thyroid medication be off? Are my cortisol levels out of whack? What about your testosterone levels? Do you need to start on growth hormone like your doctor suggested? And what about your sleep apnea? When was the last time you had a sleep study? Could your CPAP be at the wrong setting? Or is this simply what you should expect when you haven't worked out for such a long time?

   "So I made the necessary doctor appointments to get things checked out, wondering if I should just take it easy for the next few weeks until I got the lab results back. But I just couldn't wait to take some kind of action. I increased my Synthroid by a small amount and increased the pressure on my CPAP machine. Within a week, I felt quite a bit more energetic and started back on my fitness program. Sure enough, my lab tests indicated that my thyroid medication had been way too low. I knew it was a good idea to follow up on my other medical issues, but before long I got so wrapped up in my Body-for-Life program that I just didn't want any interruptions... For the first time in years, I was working out on a daily basis. My weight was coming down at a rapid rate, and my body was getting stronger. Maybe, just maybe, this would be the big comeback I had been hoping for so long... I was as giddy as a kid on Christmas morning as I watched the weight drop...292...289...282...275...267...263...260... By the end of March I had lost 40 lbs! How unbelievably exciting! At this rate, I'd be back to my old bike-riding athletic self in no time! I couldn't wait to celebrate my incredible success with my friends at our upcoming camping trip April 10.

What a sense of victory and validation I felt as I set up my tent trailer. It was Thursday night and none of my friends had arrived yet. The sun was setting as I finally got everything in my trailer dialed-in. I fixed myself a rum and Diet Coke for the first time since January. I kicked back to reflect and enjoy the peaceful environment as the sun sank below the hills above the lake. Most of my friends felt I was ‘too obsessed’ with my fitness program. They didn't seem to understand how critical this was to getting my health and my life back. Certainly, other areas of my life were hurting for attention, but the reality of the matter was that even though my daily workouts were brief, I rarely had enough energy afterwards to do much else. I was definitely less sick - but I still wasn't well. Hopefully, they would at some point be fully supportive of my weight-loss efforts, but I had my doubts. My closest friend Katherine had been the most critical, telling me I needed 'balance' in my life. But she had struggled with being overweight most of her life, so I figured that the real issue was that my success was threatening to her. To see the guy with the hormonal disorder dropping weight left and right kind of shoots holes in all your excuses as to why you can't lose weight! Maybe this weekend we could have a heart-to-heart talk and just get back to being best friends... But deep inside something was telling me that perhaps it was time to make a change. That things would only get worse as I lost more weight. That at some point I would have to choose between taking care of myself and being around people who try to drag me down...