HollieK

No.......Im kinda new to this. I have been doing blogs, but never anything else. My doctor doesnt seem to think I need to take any more. She seems to think that this is normal, but It doesnt feel right.

OMG this is just what I need..........I had my surgery on February 4th, and I am into my 9th week. I am so achey and tired, and I can barely eat. I feel nausous all the time. I am really having a hard time with this, and besides my doctor, I need some advice from someone who has been there. I am just about at my wits end. I cant sleep, and It is everything I have to get out of bed for work. Thank god I have a patient boss because I am totally worthless at work. I dont have any days off left because of the surgery so I have to be here and suffer all day. Please let me know if there is a light at the end of the tunnel. I dont know how much more I can take.

Well I went to meet my Neurosurgeon on Monday at John's Hopkins. He decided he wanted to do one more test to make sure exactly what he was dealing with and that they weren't missing anything on the MRI. This test is the Petrol Sinus Sampling test (think I said this right) This is the test where they put cathetars in your veins on both the left and right side of your groin area. They run the cathetars all the way up to your pituatary. While the die or whatever they put in it runs through your brain, they are taking blood from your right and left arm at the same time. This is supposed to measure the amount of ACTH that your pituatary gland is sending out. I guess it lets them know which side of the gland that they will be working with. He said that the procedure was pretty painless and that it was an in and out kind of thing, but I am still not looking forward to it. After he does this test, which will probably be in a few weeks, they will schedule my surgery. He wants to wait until after the holidays to do the surgery, which I guess is fine with me. I have to say though, that I was a little dissappointed when he told me he wanted to do one more test before the surgery, I had myself all excited that I was going to go there and he would schedule the surgery and it would be all over soon. I understand though, I would rather him know exactly where and what he was dealing with so I don't have to go through this again six months down the road.

I got a little freaked out when he was talking cure rates and odds of recurrence. I just thought that once they took it out everything would just go back to normal. He told me that the cure rate for Cushings is only 60 - 70%. He also said that out of those that are cured, there is a 30% chance that it will return in the future. I am not liking the sound of that either. I am only 32 I don't want to have to keep dealing with this for the rest of my life. I have already lost about 4 years that I will never get back.

I am hoping that some of the many people on here that have been cured can tell me their stories and give me a little feedback on what to expect after my surgery and down the road.

Thank you sooooo much. You have made me feel a thousand times better. I have only been dealing with this for about 3 years compared to your nine. I can't imagine how it would feel to have to go through this for another 6 years. I was just at my witts end now. I am excited for myself. I am trying to look at it as a brand new start. I'm glad I found this site though because it has helped me understand what others like me have gone through, and reassured me that there is light at the end of the tunnel.

Thank you for giving me a little insight. The doctors tell you how things "will be" afterward, but the only people who really know are the ones that have actually been through it themselves. I'm not so much nervous about the surgery as I am the recovery. I have heard some people compare it to what your body goes through during heroin withdrawl. Im also really concerned about all of the weight that I have gained. How hard is it to lose? Im also worried about losing too much time out of my job. I love my job and I don't want to take any chances on losing it. My boss has agreed to let me work from home for a short period of time, but Im not sure how long recovery will take. I don't exactly know when the surgery will be, but my consultation with my surgeon is on the 23 of this month and then he will schedule the surgery. What sucks is that I will probably be down during the holidays.