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HollieK

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About HollieK

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  1. 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.
  2. 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.
  3. Well, I had my surgery on February 4th. It was probably one of the worst things that I have ever had to endure........ everyone made it sound like it was going to be fine. My doctor told me I would probably be out in a day or two. I ended up being there almost a week, and probably could have stayed longer. While I was in the hospital I developed Diabetes Insipidus, and was sooooo thirsty and going to the bathroom so much that they put a bedside toilet next to me because I couldnt make it to the bathroom. I was in so much pain, and I was so nauseus that I couldnt eat anything the whole time I was there. After I got home I was put on 20mg of hydrocortisone in the morning and 10mg in the afternoon. I spent the first week in bed and sleeping most of the time. After the first week I was up a little and moving around. About the third week I went to get follow up blood work done. At around the fourth week my endo called and told me to drop the hydro to 10mg and 5mg. That weekend I got really really sick. I was throwing up anything that I tried to eat or drink, and I was aching and tired. I ended up going to the ER and they tested me for flu and it came up negative. They sent me home and I continued throwing up until Monday. I ended up back at the er and they found out I had a sinus infection. I took antibiotics for that week and nothing seemed any different except that I wasn't throwing up. I went back to work and around the 4rth day of work, I started feeling really tired and achy. Since then I have been sick every day. I am so tired all I want to do is sleep. Every bone and muscle and joint in my body hurt. I have no strength whatsoever. I can barely get myself up off of the chair when I sit down. I cant eat anything because Im naseus all the time. I am sneezing alot also, and I have insomnia horribly. My doctor said everyone handles it different and that she thinks it is probably going to go away, but it is getting no better, and I am so sick of being sick. I am worse now than I was before my surgery, and I am actually regretting the surgery. Please someone, anyone who has had the transphenoidal surgery to remove a pituitary tumor, let me know if there is a light at the end of the tunnel,,,,,,,,,,..............
  4. 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.
  5. 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.
  6. 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.
  7. Well I just noticed that the last blog I wrote was in June of this year. I am happy to report that since then there have been some MAJOR happenings. I finally got fed up with all of the tests that my endo here was doing without any results, so I asked her to please refer me to John's Hopkins in Baltimore. I had been doing alot of research, and they seemed to be an excellent place for someone like me to find some answers. Well I had my first appointment with my new doctor in August. She ordered some blood work, another 24 hour urine test, and a new test which I hadn't heard of. This test had me chew on a piece of cotton at 11 pm two nights consecutively. Apparantly it reads the amounts of ACTH in your saliva. Any way, as usual my levels came back high, so she decided that she wanted me to have an MRI at their facilities. The prior 5 MRI's that I had done here at our hospital had all come back negative. I had just had one done a month prior to my appointment at Johns Hopkins, but she wanted to have it done there, and let them read the results themselves. Well I had the MRI at 7am on a Monday morning, and at 1pm that same day, My doctor called me and told me that they had spotted the small tumor on the left pituitary gland. She also informed me that after going over my blood work and urine tests that I also had "Central Hypothyroidism" which means that my thyroid wasn't working properly either. She put me on 100mg of synthroid to combat the thyroid problem, and sent my information on to the Neurosurgery department so that they could call me to schedule an appointment. I know it sounds weird to some people that I am happy to have a brain tumor, but after almost 4 and 1/2 years of tests after test after test, and no results, I am sooooo glad to finally have some answers. I have my consultation with the neurosurgeon on November 23 to schedule the surgery. I know this is just the beginning of my recovery, but at least I know now that there will be a recovery. I am hoping that someone who might read this has been through this surgery already and could give me a little insight. How bout it.......anyone reading this who has had this surgery, that might be able to give me a heads up on what to expect. Not a doctors point of view, but someone who has actually been through it and knows what it's like. I am told by my doctor that they will be doing the removal through the sinus passages in my head, so they won't need to cut into anything. I am also wondering about recovery. Will I ever be able to lose this weight? Help I have a million questions.
  8. My name is Hollie. I am 32 years old, and I have just about had all I can take of all of this. My story is probably like about a million other ones out there, but when it is happening to you, you feel like you are the only person in the world with these problems. My story started out with my doctor finding that my thyroid was a little enlarged and sending me to an endocrinologist. After some tests they discovered a small nodule on my thyroid. After some further tests they determined that it was ok to leave it alone and put me on synthroid to make sure that it didn?t get any bigger or bother the function of my thyroid. Needless to say that was just the beginning of my ordeal. At one of my visits with my endo she noticed the bruising on my legs. I had been bruising very easily for the past couple months, but really didn?t think much of it. She started some more digging around and questioning and asked me about my blood pressure and anxiety. I had been on blood pressure medicine for a few months by then, and also Zoloft for anxiety. She decided to do some further blood work, and discovered that my cortisol and acth levels were high. She then had me do a 24 hour urine test which also showed high levels of cortisol. She had me then do a MRI of my adrenals and my pituitary glands which showed absolutely nothing. So then I guess she decided it was a fluke or something because nothing was done, she just kept me on synthroid and set me up for an appointment 5 months later. Well during that five months things seemed to get a lot worse. My bruising was horrible, my weight was out of control, my face looked like a basketball, I was getting stretch marks on my stomach, and I was growing hair on my chin that was never there before. I had constant headaches, night sweats, a horrible case of dry itchy scalp, and my blood pressure (even on meds) was getting higher. When I finally got to my next appointment, she sent me for the entire same battery of tests and everything came back the same way. Still no sign of anything on my MRI?s. I then did another test which required me get an 8am cortisol blood draw, take a DEXO pill at 11pm that night, fast, then draw another 8am cortisol. Once again same thing high levels of cortisol and acth. She keeps saying it looks like cushing?s syndrome, but won?t give me a final diagnosis, and instead of doing anything it just seems like she keeps sending me for the same tests over and over again. I am now to the point where I am fed up. I?m not sure what to do. Should I try and find another doctor (nearest endo 2 ? hours away) do I tell her to fix something ASAP. What do I do? I can?t keep living like this. I am gaining so much weight, and now she tells me that I am hypoglycemic and on the verge of diabetes. I don?t understand why something can?t be done. There has got to be something? Anyone, Advice Please? I need help.
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