And It's About Time There Was Some Support For Cushing's!
I am currently 38 years old. I am married and have 5 children, ages 5 to 12. My husband is a Pharmacist and I am a stay-at-home mom. I have never had much of a weight problem through school and high school but just started adding a few pounds with each pregnancy and with each child that never all came off. After the birth of my 5th child in April of 1998, I noticed a few symptoms that I was having....I didn't know what they were. One was that I didn't lose very much of the weight after the baby, but you know how Dr's are....they say....well you just had a baby! After I decided to stop nursing, the Fall of 1998, I noticed more and more things that weren't right: gradual weight gain, puffy "red" moon face, facial hair, weight gain in the abdominal area as well as the upper arms, shoulders and neck, insomnia, bruised easily, hair loss, etc.... I went to my family physician and told him all that I was feeling....he put me on a "cabbage" soup diet! Ha! That lasted for half a day and finally through a family member, who had cut out an article that was in the newspaper talking about Cushing's Disease and what it was and what the symptoms were....I went to an Endocrinologist and found out after NUMEROUS blood tests, urine tests, etc... that I indeed had Cushing's.
I had an MRI done that showed a small tumor on the right side of my pituitary gland. I had surgery in August of 1999 to remove it. I went home and a week later was back in the hospital because of severe headaches which ended up that I had a CSF leak (Cerebral Spinal Fluid) and that is why my head felt like it was going to explode if I sat up or walked around. I spent another 3 days or so in the hospital....what a nightmare!
A 2nd surgery was needed in May of 2002 after having symptoms return. This time the tumor did not show up on the MRI, but my levels were high. I had to do the test where they put the catheters in the veins by your groin and go all the way up to your head and find out which side the tumor is on (I forget the name). That showed the tumor to once again be on the right side. So, on May 8, 2002 I had my 2nd surgery on the tumor and they also removed a portion of my pituitary gland which caused a few problems. One problem was that I had Diabetes Insipidus (where you can't get enough to drink and then you are constantly having to go "pottie"). Also, my estrogen levels were (and still are) low, so I am on 2 estrogen patches (the pills made me sick).
It is now April, 2003 and didn't find that many of my symptoms went away after the 2nd surgery. Started noticing things in the Fall of 2002. Started running blood and 24 hour urine tests and in February of 2003 my levels were high again. Had an MRI which showed a small (4mm) size tumor, this time on the left side of my pituitary. I am not opting for a 3rd surgery on the tumor but am about to have adrenal surgery to remove both adrenal glands and following that (a month or so later) will have gamma knife radiation on the tumor and my pituitary gland. I am scared to go through surgery again....but at this point want to get my life back and feel "somewhat" good again. It has been SO long. Since 1990 I have been pregnant and having babies every 2 years and then after my last child, I started having problems with this and that has been the last 5 years. So, since 1990, my health has not exactly been NORMAL. But I am SO ready to get this taken care of ONCE and for all, hopefully!
On April 29th, 2003 I had the Bi-lateral Adrenalectomy done at OHSU in Portland, Oregon. It went pretty well, but I had more little incisions that I thought I would have. I thought there would only be 4 or so and there were 12! I was VERY surprised and also found out after the surgery that during the adrenalectomy on the left side, there was a Gastric Artery that was in the way when they got in there....the Dr. said that it wasn't very common to see that, so he ended up having to cut the artery and re-sew it and attach it to the muscle....so anyway, needless to say, my left side was VERY sore for at least 2 weeks following surgery.....otherwise, it wasn't as bad as I thought it would be. I was out of the hospital in 2 days.
Still have a small tumor on the left side of my pituitary gland so with the Dr. and myself in agreement, decided to have the Gamma Knife Radiation done and had that done on May 23rd, 2003. The worst part of that procedure was the local anesthetic they have to inject into the 4 places in your scalp where the pins will be placed.....OUCH! It smarted but that was the worst part of it! I did get a pretty bad Pressure headache after the pins were taken out but after some morphine, that pretty much took care of it.
So, now it's time to start feeling better, right? After 5 years of going through 2 pituitary surgeries, 1 bi-lateral adrenalectomy and 1 Gamma Knife Radiation treatment.....I am ready to move forward. I feel a little better every day and that is all I can ask. I hope to get back to a somewhat "NORMAL" life if at all possible. This was not what I had in mind for my life, but this is what I was dealt and God has a purpose in giving me these things to deal with.....I hope and pray that all this is over for me and that I can finally move on and get to feeling better. I will never again take my health for granted....Ü