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AllenS' Story

August 20, 2003

I am 42 years old and live in the Seattle area with my wife and our two wonderful daughters. Despite the fact that it rains a little bit here, Seattle is a wonderful place to live. Perry Como sang a song years ago that said, “The bluest skies you’ve ever seen are in Seattle.” In 1990, when Seattle hosted the Goodwill Games, Larry King said that when the sun is out, Seattle is the most beautiful place he has ever seen. I constantly remind my father-in-law of this whenever he visits and is holding an umbrella!

I have enjoyed reading everyone’s bios on this website. While some of them are long, I always get at least one thing out of each one I read that helps me. Here are two versions of my bios, a short one for those who don’t have much time and a longer one for those who have a cup of coffee or hot tea and time to read.

Reader’s Digest version….

I feel fortunate that my battle with Cushing’s disease so far has only been for 8 months compared to others who have suffered for years. The Internet has definitely been an invaluable tool for me to make this possible.

In January of 2003, I started experiencing symptoms in my body that I later found out to be Cushing related. I originally thought I had a Candida yeast infection in my intestines as I had been on antibiotics for over 5 years in my early 30’s, and this is one of the causes of Candida. Antibiotics kill all of the good bacteria and allow the Candida bacteria to take over. Although I exercised and maintained a healthy diet, I would get bloated in my stomach, especially after eating. My wife thought I was expecting. I did, too!

I did a search on the Internet and typed in the word “bloating” and one of the links that came back had to do with Candida. Some of the symptoms it listed were: bloating, fatigue, poor memory, feeling spacey, numbness, burning or tingling, insomnia, muscle aches, muscle weakness, pain and/or swelling in joints, loss of sexual desire, menstrual irregularities (I’m a male, but I list this for the women who might read this), tremors/shakiness in hands, incoordination, bruise easily, food insensitivity, body odor, shortness of breath, increased urinary frequency, poor vision, and more. As you can see, these all overlap with Cushing’s symptoms. I was experiencing all of these (except for the menstrual irregularities!) At this time, I had not heard of Cushing’s disease. Five months later, after the symptoms in my body worsened and I got frustrated with my doctors, I sought new ones who diagnosed me as having Cushing’s syndrome. Subsequent tests revealed that I had a tumor on my pituitary gland that was causing my adrenal system to overproduce the cortisol hormone.

In August of 2003, I am scheduled to see Dr. Johnny Delashaw for my initial consultation that will probably lead to surgery. Dr. Delashaw practices at the Oregon Health and Science University (OHSU) in Portland and is regarded as one the best pituitary gland neurosurgeons in the Northwest.

I can’t wait to get this cured and return to better health. Through all of this I have learned to be persistent with the doctors, get the best ones when possible, and don’t give up hope.

The rest of the story….

My first noticeable symptoms of Cushing’s disease appeared in January 2003. For over a year I had been eating a very healthy diet and exercising regularly. I had eliminated sugar, flour, most dairy and a lot of junk food from my diet. Although I was in good health, I still didn’t feel like I had the amount of energy that I should have. Hearing that many people have parasites in their intestines that steal the nutrition from foods they eat, I started a detoxification program. While on this program my feet started to swell. I went to my doctor and he gave me a diuretic that eliminated the fluid retention. A short time later I resumed the detoxification program and once again I experienced swelling in my feet. This time the diuretic did not remove the excess fluid.

Prior to January 2003, I had noticed that my stomach was bloated after eating. I did a search on the Internet and found out that a Candida yeast infection can cause this. I completed a questionnaire and the score I received on it indicated that I most likely had Candida. Later, I found a test for Candida called the saliva (spit) test. When you wake up in the morning and before you put anything in your mouth you spit into a glass of water and wait about 15 minutes. If you see what looks like strings hanging down from the saliva then you probably have Candida. My wife thought this test was nonscientific, bogus and disgusting, and that I had lost it. Maybe she was right, but hey, it was free!

Looking back to when I felt the bloating condition originally started coincided when I had my teeth cleaned after taking a high dosage of antibiotics. In October of 2001, I went to the hospital with severe pain in my lower back. I thought I was passing a kidney stone. The doctors never were able to find one on the ultrasounds and one was never found in my urine samples. It may have just dissolved. While in the hospital, however, they noticed my EKG was abnormal. Follow on testing showed that I have a bicuspid aortic valve (2 flaps instead of 3). The doctor said I was born with this and it wasn’t serious. The only thing I needed to do was to make sure I took antibiotics before I had any dental work done in order to prevent any infection or bacteria being transferred to my heart. I have had my teeth cleaned 3 times since this and have noticed my bloating condition worsen each time after taking the antibiotics.

The symptoms I was experiencing at that time that were Candida related were: fatigue, poor memory, feeling spacey, numbness in my extremities, burning or tingling under my skin on my arms and legs, insomnia, muscle aches, muscle weakness, pain and/or swelling in joints, bloating, loss of sexual desire, tremors/shakiness in hands, incoordination, bruise easily, food insensitivity, strong armpit odor, shortness of breath, increased urinary frequency, poor vision, and more. Getting up from a chair and climbing stairs was extremely difficult.

I mentioned to my doctor that I might have Candida yeast infection and he didn’t give much credence to it. I asked him if he could prescribe Diflucan for me as I had heard that helps with Candida. He agreed to let me try it. After two weeks, I did not notice any improvement. He referred me to a gastroenterologist for my bloating condition. Two months later, the end of May 2003, I was finally able to have an oral Endoscopy done. The results of this test were negative; my esophagus, stomach and duodenum were fine and a biopsy from my stomach did not reveal any H-pylori bacteria. The gastro guy was stumped, but wanted to run some more exploratory tests. I could tell he was grasping, so I declined to have them run.

Disappointed with the attitude and approach of my “traditional” doctors, I decided to see a naturopath doctor. During my first exam, she detected that there was something out of balance with my adrenal system. She also thought I had Candida. While I was on herbs for a couple of months, my condition did not improve. My fluid retention continued to worsen and spread up my legs and to my upper body. Finally, in May, as I was driving my daughters to their piano recital, I started to feel nauseous, my heart was racing and I felt a hot flash. It last for only 30 seconds, but it scared me as I thought I was having a heart attack. I came to a point in the road where I had to make a decision: if I turned left I could take my daughters to their recital; if I turned right I would be at a hospital within a few minutes. I decided to turn right and go to the emergency room. I’m thankful that I did.

After spending 3 days in the hospital and having extensive tests run on me, they could not find anything wrong. I did not have any heart problems. All of my other organs checked out fine, too. The doctors felt the cause of the attack I had was due to the excessive fluid retention (edema). The doctors said I had the most severe case of acute edema. Upon discharge I ended up losing 25 pounds of fluid.

Because they originally thought I had a heart attack, they assigned me to a cardiologist for my care. He continued to care for me for a couple of months after my discharge from the hospital. He wanted to get rid of all of the excessive fluid possible (he figured I had another 10-15 pounds to lose) and repeat some blood tests as he thought the fluid might be masking the test results. After a month of being on various levels of diuretics, I reached a point where I didn’t lose anymore fluid, although he figured I had at least another 10 pounds to lose. I mentioned to my doctor some of the symptoms I was experiencing, especially the muscle loss, weakness in my legs and insomnia. He attributed this to the fluid loss I had experienced in the hospital. The cardiologist said he had consulted with his colleagues and other specialists regarding my condition and they all were stumped. I don’t fault my cardiologist for not detecting Cushing’s because that is obviously something he was not trained for. I was disappointed that he didn’t steer me to a specialist sooner. I decided it was time that I find another doctor who was a specialist.

After much prayer for wisdom and direction I contacted the Bastyr Center for Natural Health in Seattle to see a qualified naturopath doctor. I did not have a referral for a specific doctor. They assigned Dr. Abdullah to me. He was an answer to my prayers. Upon my first visit, he immediately could tell something was wrong with me. After just doing a visible examination and listening (yes, listening!) to all of my symptoms he said I had some type of autoimmune disease. He mentioned possibly Lupus or Cushing’s. This was the first time I had ever heard of Cushing’s. When I got home I immediately did a search on the Internet for Cushing’s syndrome. I discovered that the symptoms associated with Candida were nearly identical to Cushing’s, although Cushing’s had more and I was now experiencing them as well. Maybe I didn’t have Candida after all. Additional symptoms I started having were: a chipped tooth, shin splints, skin tags on my armpits, strong armpit odor, aging spots on my hands, and soreness in my back in the kidney and liver areas.

Dr. Ab was disappointed in my traditional doctors for not performing more extensive blood tests. He requested a complete series of blood lab work to be done the following day. A week later I returned and he said the lab tests showed my cortisol level was high and wanted me to see an endocrinologist for further evaluation. I contacted my primary care provider (PCP) since I would need his referral. I contacted the endo he suggested and was told the earliest I could see him was in five weeks. My condition was quickly getting worse as I was experiencing brain fog, my vision was worsening, my muscle strength was decreasing, and I was experiencing new symptoms in my body. I called Dr. Ab and asked him if he had an endo he could refer me to. He gave me a list of names. I contacted each of them only to find out that they are in high demand. The soonest I could see any of them was over 2 months. The last one I called, however, just happened to have a cancellation and I could see him in 2 weeks. Yes!

Dr. MaGee, an endocrinologist in Bellevue, turned out to be another answer to our prayers. During my initial visit he also could tell that I was in bad shape and put me near the top of his list of patients that needed high priority. As a result, I was now able to schedule appointments within a few days rather than weeks. Tests were run over the next couple of weeks and the results indicated I had Cushing’s and the pituitary gland was the culprit. He was pleased with the test results as he said they all conclusively indicated what was wrong. I didn’t have to repeat any tests. Next, I had an MRI done and they found a small tumor on my pituitary gland. Dr. MaGee said I would need surgery to remove it.

One of things I have gotten off of this board is the importance of getting the best surgeon possible – not the best neurosurgeon, but the best pituitary gland neurosurgeon with Cushing’s experience. While looking for one in the Northwest, I also consulted with Dr. Ab, my naturopath, to see what his recommendation for treatment would be. I was actually surprised at his suggestion because he kind of steered me towards having the surgery since he felt my condition was such that I shouldn’t wait. Dr. Ab said he has had success in getting rid of tumors using a naturopathic approach; however, it takes more time. This is one of the reasons I like Dr. Ab. He wants to work with the traditional doctors for the best treatment possible for me. I forgot to mention earlier that my endo said that he was impressed with Dr. Ab because he was able to detect Cushing’s in me. He said it is easily missed. Most traditional doctors, such as my endo, don’t regard naturopaths too highly, so for him to compliment Dr. Ab made me feel good.

After doing research and getting some recommendations, I have decided to have Dr. Johnny Delashaw out of Oregon Health and Science University (OHSU) in Portland perform the surgery. My initial consultation with him is scheduled for August 22, 2003. I am looking forward to this appointment with the hope of having surgery soon and to be on the road to recovery.

Upon meeting me for the first time, people who don’t know me don’t think anything is unusual about my appearance, although I have a puffy face and neck, a hump on my back, and a bloated stomach. I guess I’m a little self conscious as I don’t think I look too good. With my clothes off, my belly looks like I could have been a double for Tim Allen in his first Santa Claus movie!

I want to thank DebMV, Shauna, and Emilie for their invaluable help plus others who have posted to the message board.

By now either your coffee/tea has run out or you are fast asleep. I know this bio is long, but what I have learned is all of us experience different symptoms in our bodies and challenges with getting treatment and by mentioning what I have gone through may help someone else. The most important things I have learned are to take control of my situation by being proactive and aggressive with the doctors and not to give up hope!

Update: August 31, 2003

My trip to Portland to visit my neurosurgeon, Dr. Johnny Delashaw, at Oregon Health and Science University (OHSU) for the first time went very well. OHSU is a huge facility that sits on top of a hill overlooking downtown Portland and the Willamette River. It is quite a place.

The good news is I was able to get scheduled for surgery within 2 weeks, on September 8th.

My wife and I were very impressed with Dr. Delashaw and his staff. Dr. Delashaw said he performs this type of pituitary gland surgery (brain surgery) 5 times a week. His associate said OHSU possibly does the most of these surgeries in the nation. People from all over the country come there to be treated since they are recognized as being one of the best facilities in the states. That was good news to hear.

Before we left OHSU I was able to get preadmitted. They did an EKG, blood test, and I filled out the required paperwork, so all of that is taken care of. I am supposed to call the hospital the Friday before the surgery to find out when it is scheduled on the following Monday, September 8th.

Surgical Procedure:

Dr. Delashaw will do what is called a transphenoidal surgery. They will enter my head between my upper lip and front teeth. My lip will be pulled up over my nose (I hope it will stretch that far!) and then they will make about a 2 inch incision above the gum line. The doctor joked that he could take a picture of me while I’m in this state. I told him to go ahead as it would probably be better than some pictures I have had taken of myself. They will have to drill through at least one cavity that has bone. By entering my head in this area they will be able to see more of the pituitary gland. They can also get more instruments up there. He is actually able to do an MRI while he is operating. All of this helps to increase the success of the surgery.

The nerves under my upper lip will be cut and he said I will be numb for about 2 months until they start to grow back. At that time my teeth will start to hurt and that is a sign the nerves are growing back.

They will give me an IV and then a drug like valium to sedate me. The anesthesiologist will then do a spinal. When they enter my sinus area they will poke through a CSF (I can’t remember what this stands for – maybe cerebral spinal fluid) sack. At the end of the surgery they will put positive pressure on my spinal tap to force fluid back into this sack to make sure it doesn’t leak. If it does then they will have to remove some fat from my abdomen to plug the leak. Kind of like taking a wad of gum and plugging a hole.

The total surgery time is around 5-6 hours. The actual time spent by Dr. Delashaw to remove the tumor is only 30 minutes. The rest of the time is spent by the Ear, Nose and Throat (ENT) specialists doing the incision and stitching it up at the end to make me look good. We don’t want to rush that step! He said my nose might be swollen for a few days. Also, Dr. Delashaw said that a sign that the surgery is successful is I will feel awful for a few days afterwards. The reason is it will mean he has gotten the entire tumor and my cortisol level will have dropped to nothing. I will then be given a small dosage of the hormone to elevate it to the right level. He said that they don’t want my pituitary gland to start working completely by itself, so that I will need to take a pill every day for the rest of my life to assist it in producing this hormone. He said when it functions this way then the chance of a reoccurrence is greatly reduced. This is the first time I had heard this.

The typical hospital time is 2-4 days. I will have a follow up visit 2 weeks after surgery and then another one 2 months later. After that they normally don’t see their patients again because they are cured. Yes!

Another thing about Cushing’s that was explained to us had to do with the cortisol hormone. Normally, one of the times this hormone is produced is when a person is under stress, frightened, or in an anxious condition. It helps a person to deal with it. This is similar to an adrenalin rush. That is why people with Cushing’s can’t sleep or get rest; their bodies are always under an emergency type of condition.

A few of the tidbits we learned or were told: It is good I was diagnosed with Cushing’s within a relatively short period of time (8 months) as the chances of a complete recovery are greatly increased. This disease is deadly, especially for older people. Dr. Delashaw’s associate wasn’t sure if my tumor had hemorrhaged as reported by the radiologist who performed the MRI. He said the tumor would normally have been enlarged if this had happened. People with Cushing’s disease may have a mild case of it for years and then something triggers their system to produce the cortisol hormone at an elevated level and the severe symptoms appear. We asked him about my vision and if it would return to normal. He said it should.

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