![]() |
![]() |
![]()
My name is Lee and I am 49 years old, living in rural Utah. I am married and have three daughters aged 28, 26 and 18. I am a self-employed painter with HMO insurance. I had pituitary surgery for Cushing’s disease December 20, 2004. My story is probably fairly typical for Cushing’s (if that is possible) and I would like to share it so that it might help and comfort anyone who is going through it.
Looking back at family photos I can see that I had a Cushinoid face (moonfaced) since about 2001. Other early symptoms were gradual but steady; weight gain, hair loss on head (I used to have a braid that I could sit on), hirsutism, ruddy complexion, numb toes, and slow healing wounds. I just figured this was all due to getting older and tried to accept it gracefully. Gradually other symptoms appeared; frequent insomnia, fat increased on neck, clavicle area, teeth became hot and cold sensitive. (My dentist later told me that I had a major gum recession that was most likely triggered by the Cushing’s and was the cause of the sensitivity), bladder leakage, frequent urination, irregular periods, and difficulty reading, even recreational reading. I just didn’t read anything unless I had too. I no longer enjoyed working in my studio. My eyes were achy and light sensitive. Even with all this I just figured it was just bad luck in the way I was aging. It wasn’t until my skin thinned so much that it tore and bruised without me knowing why, my insomnia became constant and intolerable, my already sensitive eyes had frequent ruptured blood vessels in the white of the eye, and I developed a constant dry throat that I figured that this was something other than pre-menopause.
By the time January 2004 rolled around, I knew I was sick, but didn’t have a clue with what, and decided to finally go see a Dr. for help. In February of 2004 I went to see a family practice Dr. for the first time since my regular doctor retired. I realize in hindsight that this is probably an important thing in diagnosing Cushing’s - to have an established relationship, if not, take a photo of yourself before you were sick to show the Dr. what is normal for you. Of course I didn’t do this at first. I think I weighed about 170 then. I am 5’10” and my normal weight was between 150-155lbs. The tests the new Dr. ordered came back normal. The optometrist I saw said I had bletheritus and dry eye, and also suggested that I may Sjogren’s syndrome, a disease that is an autoimmune disorder where your salivary and tear glands are gradually destroyed, which thankfully I ended up not having. In April another Dr. said everything was probably due to menopause and that I should just work on losing weight and getting more exercise. I felt frustrated, stupid and sick. I decided I wouldn’t go to any Drs. for a while. I was too busy. I had an exhibition of paintings to finish and frame, a house to prepare for a historic home tour in late May, plus two backpacking trips to co-guide down the Paria river for Grand Canyon Field Institute. During this time I felt like my symptoms were accelerating; felt hot or like I was having a hot flash almost all the time, was always flushed in appearance, didn’t handle stress well, and was very prone to tears. I was in good shape from walking and riding horses, was always in super drive, lots of energy, but a false high, because I was so sleep deprived. Even on the backpacking trip after carrying a 50 pound pack all day I could only sleep for about 4 hours a night. I had a constant slow nose bleed on the second trip and had bruises all over my forearms from the pack straps rubbing as I put on or took off the pack.
Some friends who hadn’t seen me for about 9 months came by in late May and after I left the room asked my husband what was wrong with me, as I looked so terrible! He told them what had happened and through one of my friends I got an appointment with an internist named DR A. My sister who is a nurse also told me about a woman she was caring for who was dying of something called Cushing’s Disease and my brother who is a doctor, ordered a 24 hr. urine test for cortisol levels. My results came back 565 (normal somewhere around 48) and ACTH levels also elevated. My brother then ordered a CT scan of the abdomen which showed enlarged adrenals but no tumor. I presented all this information along with old photos to Dr. A and after an examination he concurred with my siblings, I had Cushing’s disease. I also had a UTI and high blood pressure, something I was unaware of, but is typical in Cushing’s. I have always had abnormally low blood pressure all my life. As I have mentioned, my eyes were one of my biggest complaints with the Cushing’s, and that is not typical. I already have a significant blind spot in the middle of my L eye due to a pit on my optic nerve. I felt like the vision in that eye was getting worse and so I asked Dr. A to refer me to an ophthalmologist in Oct. 2004 to see if there was something going on with my vision besides the Cushing’s. After being referred to increasingly specialized and concerned eye doctors, I saw a neuro-opthamologist who felt that the nerve pallor and condition was due to the Cushing’s and that I should just hang tight and see if things improve when my cortisol levels start to drop after surgery. That was a huge relief! (She was right, my vision began to improve and my eyes not hurt as I came down off the cortisol in 2005).
During all this my brother ordered an MRI on my brain, which showed no tumor on the pituitary and a chest x-ray showed there was not a tumor in the lungs, and referred me to a neurosurgeon. He ordered jugular blood samples with CRH (7/04) and another MRI. The surgeon was gone on vacation for two weeks, during which my brother was able to look at the test results online - the tumor was probably on the left side of the pituitary, and I learned more about Cushing’s from the internet, such as symptoms, diagnostic tests, and most important, the treatment for Cushing’s. I learned that the most current surgical approach to the pituitary gland was through the nose instead of under the lip, less invasive and faster recovery, and the current thinking was that you didn’t take out the entire pituitary gland unless it was completely involved with the tumor. I learned to ask surgeons; “What approach to the pituitary do you use?” “How often do you do pituitary surgery?” (Min. of 15 x a year is an OK answer, but more is better) “What’s your plan if you do my surgery?” Unfortunately, I was not pleased with my neurosurgeon’s answers, he did the approach under the lip, he did pituitary surgery fairly often (I am not sure what that meant) but he didn’t see too many micro-adenomas, and would remove my entire pituitary gland, that the “success” of the surgery would be almost guaranteed by removing the gland. A success for him, but not for me, who would be stuck with complete hormone replacement for the rest of my life! I thanked him for his advice and asked for my films back, and told his PA that I would probably get a second opinion before scheduling surgery.
I then saw a neurosurgeon at LDS hospital in Salt Lake City, UT named Dr. B. I called his office and was able to get an appointment for August 15. Dr. B didn’t think I looked Cushinoid, that most Cushing’s patients he had seen looked like someone put an air hose on their big toe and blew them up really huge like a blimp. I guess he was trying to pay me a compliment because I wasn’t so big, but I felt big and ugly. I have since heard Cushing’s called “the ugly disease” and I think that is a pretty good name for it. You feel ugly on the inside and outside of your body. He does the nasal approach to the pituitary, did about 30 pituitary surgeries a year, and would not remove the entire gland, but only what he had to get the tumor. Good. I then had to have IPSS (inferior petrosal sinus sampling) 8/04 with Dr. E. He was very respectful and I watched the whole intense procedure! There were two snags with the IPSS. One was bleeding from the entry site caused by my blood clotting disorder called VonWillibrand’s. The other snag was after the hit of CRH I guess I really churned out an extra shipload of ACTH, and for the next several days I felt like I was going crazy. I already had insomnia, anxiety and was feeling pretty weird with my high cortisol levels, but after this test it was absolutely awful for a few days. I didn’t feel like I even knew who I was. I just cried all the time. I didn’t realize that the CRH was probably why until it was all over. It would have helped to know that I might feel even crazier than usual after the test. My internist was then able to get me an urgent appointment for Sept 14, 2004. , with a new endocrinologist, Dr. C, who had expertise in treating Cushing’s and was in my state. He was very kind and thorough, finding the tumor with a dynamic MRI. But then I found out the surgeon he works with only did the lip approach and remembering horrifying conversations with another Cushing’s patient I had recently met, I was paralyzed, where should I have my surgery? I delayed my decision until Dr. C called. He was concerned that I was waiting too long to schedule surgery, which I did. Dr. B was concerned about my blood clotting disorder called VonWillibrand’s, but with extra precaution, my surgery was Dec. 20th and went well.
Recovery was difficult and slow. If the surgery were the only thing to deal with getting over Cushing’s would be a breeze, but it’s a long year after surgery, watching all those adverse symptoms caused by the high cortisol gradually recede. It is defiantly not a bounce back disease! Somehow you just get through it. I kept as active as I could and I finally got off the hydrocortisone in Sept. 2005. I had bouts with several kidney stones and didn’t recover well from the repeated surgeries. But I did read my first book for pleasure back in November and now can enjoy reading the paper in the mornings again! Best of all, I have started painting again. My ability to make decisions, stay focused and multi task is coming back too. I feel like my brain is coming out of a thick fog where it has been lost for a long time! I have lost 40 pounds without dieting this last year. I am back to 155 and have been there for about 3 months. I think if I want to loose more weight I will have to work at it, but it wouldn’t be impossible the way it seemed to be with Cushing’s. My eyes don’t hurt any more. My hair has thickened back up and much to my surprise I am getting a lot of brown and blonde hair coming back in. All I had left at the time of surgery was thin gray hair. My moustache, beard and sideburns have vanished. My hands and arms are not covered w/ bruises. People don’t recognize me as my appearances have changed so much over the last year. My periods have returned and are fairly regular. My urinary tract is back to normal. No more UTI, my frequency of urination is normal and bladder leakage has even improved! I am enjoying cooking and baking for my family once more and feel like I can plan for more than just one day at a time. I feel like I have had a sneak preview on being very old and frail these last few years, and I am ever so grateful to be turning 50 in a few weeks, feeling perhaps like a 50-year-old woman should!
As a side note, I counted it up, and I went to 16 different Drs. offices during the 18 mos. between the time I was trying to figure out what I had, through June 2005 when I had my last kidney stone surgery: 2 family practice, 1 optometrist, 3 ophthalmologists, 1 podiatrist, 1 rheumatologist, 1 internist, 2 endocrinologist, 1 hematologist, 3 neurosurgeons, 1 urologist. I hope to never come even close to that record again! The thing that I learned from this illness experience that I would like to pass on is that you can take responsibility for finding treatment and a cure if you are sick. If I had gone with the first surgeon’s plan of action, my life would be very different now. Do your research, ask questions, be your own advocate. It really helps to have others helping you too.
|
|
comment on this page
email this page
print friendly
