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HollieK

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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.

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Hi Hollie,

My name is Carolyn I thought I had answered you but must have done something wrong I hope it works this time. I lhad your op almost two years ago now and am on top of the world. I had been looking for answers for nine years with doctors telling me to go home relax do some more exercise and lets face it your in your 40's so that's what you get. Well an old nurse got on the internet found some information about cushings and there I was at the endo and getting things moving. I had a 6 mm tumour on my pituitary gland I had it removed the operation itself if painless you have your nose packed for a couple of days which is a real sight but once again painless. They give you a shot of peth before they take them out and this is just a strange feeling more than painful. The hardest thing about the whole lot is that you can not allow yourself to sneese for a month. I got quite sick just after I got out of hospital and landed back there this was due to low sodium levels so if you do get ill please get them to check that out don't know what it was from. I can tell you things got better straight away. Your pituitary gland will be in shock for a while and you will need replacement cortisol They give you only a small amount and wait to see if the gland starts working again. Usually by around 6 - 9 months things will be back to normal levels. They damaged my gland a little and so I now have to be on full time replacement but there are no other side effects ( the hot flushes could be from that but I am 49 so they could be just there any way ) but this doesn't usually happen. I also had a tumour on my thyroid which made me quite ill and 6 months after the op I had neuclear treatment to fix that. It seems to be behaving itself quite well now.

I now have a wonderful new job and people can not belive the difference. People who only met me during my cushings are completely blown away but everybody who knew me before just say no now we have the old Carolyn back. The first year was trying at times as I was very weak but it all just gets better and better each day. I would love to hear how you go. I would like to get to talk to somebody on cortisol replace ment as I don't really know how to manage different situations.

All the best and I know things will be good for you

Carolyn

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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.

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Hi Hollie,

I don't think you will have any trouble loosing the weight things just seem to fit in to place once the surgery is done. Everything just goes back to normal instantly it is amazing. My diabeties cleared up I did't get one more bruise and the old ones finally went away. The skin on my hands was always breaking it was so thin just stopped and got better I was very weak but I think the tyroid had to do with that as well since you have thyroid problems as well make sure they are checking it. I went back to work straight away and everybody was wonderful there were days when I was a bit tuckered out and went home early but that was a job where I was on my feet serving people all day I think you will be fine if you are doing a desk job. Once your cortisol levels get up again you will feel incredible. Hopefully your pituitary gland will start to function quite quickly this is just something that you'll have to wait and see. Just remember It will not be very long and you will feel a million dollars. The weight lose thing is incredible I promise it will just fall off. Your body will start to function properly again. I know I was on a constant diet for years and still putting on weight now you will go back to normal and be able to loose it again.Your skin will feel and look better I had hair on my thighs etc. and it just vanished the camels hump at the base of my neck just gone. I went for a massage not long after the op and the guy commented on the lack of elesticity in my skin and lack of muscle tone he would not even rub me but put a towel over me first remember thou I had had it for at least 9 years and was at the stage where my muscles were weakening and I was breaking bones. This all gets better amazingly fast once the cortisol levels are back. As soon as I was on full replacement things just improved. I haven't felt this good for 10 years. You will be amazed at how things just fall into place. You should be very excited because this is probably the biggest thing to happen in your life I know I was getting to the stage where I thought If I was going to deteriorate at the rate I was I was not sure how long I would really like to be around. Now I tell you I intend to be here for a long time. And I will be enjoying every moment of it kind of makes you think about your priorities. Good luck I feel really excited for you because I know you are going to come through and be as amazed as I am at how good life can be.

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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.

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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.

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