And It's About Time There Was Some Support For Cushing's!
POST OP PITUITARY TUMOR/CUSHING'S DISEASE
DR. EDWARD R.
LAWS MD, NEUROSURGERY
DR. MARY LEE VANCE MD, ENDOCRINOLOGY
SURGERY DATE: JULY 20, 2000
It has been seventeen months since my pituitary surgery and I am using the strength from god to write this. It’s probably the hardest thing I’ve done in all seventeen months. I’m finding myself in situations that seem to frighten me, where as before surgery they never bothered me. For example, I used to be a roller coaster rider and could climb the highest of mountains. But now, I am fearful of these situations. I tried to ride down the escalator at the mall last week and I backed away from it three times. I have a problem going down staircases too. I also had an MRI follow up today and I actually got scared and had to come out. I cried for a moment, took a breath and did it. They never scared me before. Here is my story.
I never had acne before the age of 18. From then till the age of 34, I saw a dermatologist about 15 times. At age 18, I weighed around 115lbs. Pre-pituitary surgery my weight was 258lbs. Now of course my weight was up and down through all three pregnancies. The third pregnancy at age 33 was the real kicker of everything. I was quite ill throughout the 9 months. I’m not talking about morning sickness. I’m talking about being weak and aching in my joints. Especially around the pelvic area. I couldn’t walk very well from about the 4th month on. The OB Gyn thought maybe my pelvic bones were separating. He couldn’t x-ray me because I was pregnant. That was his best guess at that time. I visited him quite frequently due to my symptoms of being fatigued, achiness, having headaches and some dizzy spells. The list goes on.
After the baby was born, I lost some of the 32 lbs that I had gained. During this time I was still feeling the terrible symptoms that I had during my pregnancy. I couldn’t clean house and was certainly too tired to cook or do laundry. I came down with pneumonia and was sent home with a shot. Within 2 weeks I had a relapse of pneumonia and was hospitalized for 3 days. My doctor let me go home because he didn’t think it was pneumonia. He wasn’t quite sure what I had. Nice huh? Within 10 months I had gained 80 some pounds. I became progressively slower in everyday activities. During these months I went to my primary care physician several times about the weight and about the way I had been feeling. He couldn’t figure it out so he sent me to an Endocrinologist. Also during this time, my stomach had begun to get big and hard. In between this time of seeing my pcp doctor and the Endo, my head and hands began to shake, uncontrollably. I went to a Neurologist and was diagnosed with tremors and carpal tunnel. She advised me to get off the caffeine. Well, it didn’t work for the tremors and helped somewhat with the pain in my arms.
My Endo sent me home to write down everything I ate in a day, everyday for a month. In the mean time I had now grown a hump on my neck and had begun the round moon face and became more lethargic. Now I have realized that I have had 2 missed periods. I took 3 home pregnancy tests and all were negative. I made an appointment with a Gynecologist, Dr. John C. Rhoads. He doesn’t deliver anymore as he is close to retirement. I told him of my misfortunate health situation and he gave me a pregnancy test and sent me back to my Neurologist for an MRI. My Neurologist said that she was going to send me for the MRI to see if I had a tumor, but she knew there wasn’t one. She felt the need to satisfy my GYN. Dr. Rhoads was correct. I had a Pituitary Tumor. The Endocrinologist did the 48 hour urine test, blood work and the dexamethasone test. He now knew I had Cushings Disease but needed to run these test to be sure there wasn’t a tumor elsewhere as well. He just wasn’t 100% sure where the high cortisol levels were coming from so he sent me to a team of doctors at the University of Virginia in Charlottesville. The size of the tumor was very large and I was advised by several people, including my original Neurologist that the University of Virginia would be the best place for me to have this removed and to receive treatment.
By now, I have all this extra weight and my back is killing me. My feet hurt really bad and my headaches are worse. My breast have started to leak now as well. I have stretch marks all over my stomach, hips and thighs. My elbows were dark brown with a scaley feel to them. My hair has turned brown, from blonde, in this time period as well. What a hormonal shock to your system. I truly thought I was going to die just from all the aches and pains. I can’t express how hard all this was, and still is. Especially trying to take care of my husband, 3 small children and my mom having Lymphoma. By now, I believe they were all taking care of me, as well as many others. Thanks to all of you and God Bless you.
My husband and I made the appointment for University of Va and off we went. We took the MRI with us and all the test results were already faxed to them. We met with Dr. Vance, an Endocrinologist specialist. She had read over the tests and was certain of what I had was definitely Cushing's Disease. She looked over the MRI and reinforced to us that it needed to come out now. Dr. Laws was out of town for a few weeks. Dr. Vance set up the surgery appointment through email with him. As we are fighting our health insurance, we were getting ready for 4 days away from home and the kids. I was at my limit for pain. It was all very intolerable at this point. I couldn’t believe that I was still alive.
The surgery was a success. Dr Laws had to remove the entire pituitary gland with the exception of a piece of the stalk in order to get the entire tumor out. I was given several medications and sent home 4 days after the surgery.
The next morning, after my first night at home, I awoke and took my new medicine at 10am. I had some shoulder pain and fainted. My husband called 911 and I was taken to a nearby hospital. They could not figure out what was wrong with me and wanted to keep me for observation. Well, no one really observed me that night in the hospital, the nurses were having a party. They wouldn’t come to my calls for help during the night so my husband had me transferred back to University of Va. They found a blood clot in my right leg and wanted me on blood thinner medication. I stayed there another two nights and was finally sent home once again.
What a long recovery process. I’m still not recovered. It’s driving me crazy. My hair began to fall out and my back continued to ache. The pain is just excruciating. A bone scan showed 10% bone loss in my spine but not enough to really cause all the pain. We are still unsure why it is so painful. I was told to wait, that time would heal most of my problems. Time has healed some but there is so much more. I am taking growth hormone shots now to give me energy, to help with bone loss and to stop my hair from falling out. I do not feel more energetic yet, but my hair loss has slowed down.
I am seeing a Nuero Psychologist due to repeating words and the seriousness of forgetting things. I stay quite close to home and I do not drive very far. I am having headaches again. I have blurry vision but yet my vision is 20/20. I cannot take cortisone shots in my feet to help ease the pain because it will give me Cushing's all over again. I lost 40 lbs and gained it back in no time. My doctor thought maybe I had Cushing's all over again. Just the thought makes me cry. Tests proved otherwise. I am in remission at this time and pray I stay in remission.
I also pray that the symptoms would go away and I can lead a normal life again. I pray.
My meds are: hydrocortisone, synthroid, soy isoflavones, venlafaxine-because I cannot take estrogen, due to the blood clot and it helps with the hot flashes. The dosage was just raised somewhat to help with depression. Genotropin, by injection, is the growth hormone I take each night. I take Bayer aspirin each day as a blood thinner. I am on vitamins as well and an Advil here and there for the aches and pains. Doesn’t help much. After 20 years of smoking, I quit the morning of my Pituitary surgery. That definitely helps. Yeah!!!!!!!!!
Thank you family and friends for helping me to get through this horrible disease and for taking care of my family. Thank you bulletin board friends for helping me as well. Most of all, my loving husband for all you’ve done.
Still trying to find myself, Lynn in Virginia