And It's About Time There Was Some Support For Cushing's!
Hi....I'm 29 years old and live in San Diego, California and I was diagnosed with Cushing's Disease in May 2004 and have a 12mm pituitary tumor. I am scheduled to have pituitary surgery (Sublabial Transseptal Transsphenoidal Pituitary Surgery) on August 16, 2004.
I believe I have had this disease going back at least 2 1/2 years ago. Looking back now, the symptoms were there, but at the time I did not realize it since it was slow to come on and develop and it wasn't very persistent. Not only that I had quit smoking and stopped taking my birth control pills so I assumed some of the weight gain and the acne was due to that. I have experienced symptoms such as significant weight gain (I always feel bloated and feel pregnant), acne, buffalo hump, moon face, fatigue, muscle aches, vision changes, loss of menstrual cycle, etc. etc. etc. I had always been an average weight. Not very thin, certainly no swim suit model, but I was never over weight either....just average! I have gained a total of about 90 lbs or so over the past few years with most of it coming on within the past year. I also never ever had a problem with acne, not even as a teenager.
I started looking into my symptoms and talking about it with my primary care physician beginning in October 2003. The weight gain is what really made me pursue this. My primary care doctor had some blood tests done but everything came back okay. I went back to see her again in January 2004 again about the same symptoms, especially the weight gain. She ordered some more blood tests and my insulin levels came back high. She then referred me to an endo doctor. I went to see my endo doctor in February 2004. After several different blood tests and a couple of 24 hour urine tests, my endo finally confirmed and diagnosed me with Cushing's Disease of the pituitary gland in May 2004. He referred me to have an MRI done to see if the pituitary tumor would show on the MRI. My endo said most of the time the tumors don't show on the MRI.....you have about a 50/50 chance of it showing. I had my MRI scan done in June 2004 and it showed a 12mm macroadenoma pituitary tumor.
My endo then referred me to a neurosurgeon who specializes in this and who performs pituitary surgeries. I met with my neurosurgeon, Dr. U, in July 2004. He gave me a 50% chance on my surgery being successful because of the size of my tumor. Most people have a microadenoma (tumor measuring less than 10mm), but I have a macroadenoma, my tumor measures 12mm. Obviously, the larger the tumor, the more that needs to be removed and the longer and riskier the surgery.
Because of the size of my tumor, he told me that I would also need to have another procedure done about 2 months after my surgery called Gamma Knife Radiosurgery. This is a type of radiation, but is far more advanced in that it is a one time procedure with little or no side affects that regular radiation has. For example, I don't have to have multiple treatments done over a period of a few weeks, I won't get sick or lose my hair from this treatment either. It is done as an outpatient procedure and does not require a hospital stay (they said you could go to work the next day! How lucky!)
With this procedure, they are able to measure and map out the exact precise area they want the radiation to treat. With regular radiation, the beams and lasers used would treat the affected area but would also radiate and affect the surrounding areas as well, however, with the Gamma Knife Radiosurgery, it only radiates the specific affected area and does not affect any of the surrounding areas. This treatment is very successful and results appear over days, weeks or months, depending on the type of lesion being treated. Most lesions dissolve, eventually totally disappear or simply exhibit no further growth.
I am very comfortable with my neurosurgeon and feel that I will be in good hands. I am 3 weeks away from my surgery scheduled on August 16th and will come back and give an update.
If anyone has any questions or advise / information for my upcoming surgery,
Update August 1, 2006
I had my pituitary surgery 2 years ago this month. I have since been completely cleared of Cushings's Disease. I have had several MRI's, bi-monthly blood tests and 24 urine collections conducted by my endocrynologist which have all come back clear!!! I have since lost 81 lbs going from 221 lbs just before surgery to my current weight now of 140 lbs. After my surgery my body no longer produced cortisol so I have to take a daily dose of hydrocortisone supplement tablets but other than that ..... I'm doing and feeling great!! I don't mind taking one pill a day for the rest of my life compared to having to deal with Cushing's Disease. If you have any questions,
