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11/20/2009 02:53 PM

Weight gain with tumour(page 4)

nsweet
nsweet  
Posts: 21
Member

Well the reason I know its not working is because they had to take the whole gland out....Sad
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11/20/2009 03:01 PM
junebug84
 
Posts: 12
New Member

If you are on cortisol replacement then trust me you will know if your pituitary is working or not. My levels are the same as when I left the hospital in September. When I'm not getting enough cortisol I have migrains, feel uber poopy and I used to throw up when I would come down a bit on the meds. Your body will tell you, also if you are used to elevated levels like I was then you go through withdrawl.

11/20/2009 04:04 PM
slove
slove  
Posts: 32
Member

I'm having my surgery in just under three weeks and have been told there is a 20-30% risk of part of the pituitary gland being taken away. It sounds like in most cases on this forum people have either had their gland removed or it no longer works. Everyone tells me HRT is fine but I think in our case it's different I mean if we have no gland or no functioning gland surely we need a lots more meds than just standard HRT?

I can't help but stress about all this. I mean if I don't have the surgery yet it will just be a weighting game and I'll be over weight and have all these yucky symptons yet once I've had the surgery I will quite possibly still be overweight due to meds & possibly still have a lot of horrible symptoms and possibly some new ones with the added detrimental effects of surgery.

I'm usually a very positive person but I feel so depressed aboout this it seems like the life I used to know (pre tumor & symptoms) is gone forever more & I'm still so young. We've been invited to a BBQ for lunch today & I've just looked through my wardrobe & seen all the beautiful clothes I used to be able to wear which are now so small and found 1 pair of large pants (recently bought) and who knows what top. Really I think I'd rather just crawl back into bed pull the covers over my head and disappear.

Sorry for the long post I just needed to vent am feeling very scared & miserable!!Sad


11/20/2009 04:23 PM
nsweet
nsweet  
Posts: 21
Member

Solve...

I cant tell you how many times that happen to me. I would go out with all my friends and they would look so sassy and nicely dressed and I felt like a big blimp! I was so unbearable to be around because I felt like crap..and thought I looked the same..What I have to say is don't get rid of any clothes! Slowly you will loose weight! It takes abit but once that get your meds stable it will click..I have been through it twice! Hang in there and just picture yourself, all sassy again with your clothes that are in your closet.. it will be like there brand new again!!!!! Hugs!


11/20/2009 05:08 PM
kkelly2802
kkelly2802  
Posts: 125
Member

Hi slove

I was in a dark place about all this before my surgery as well. Not everyone ends up on HRT. I have been out of surgery for almost 4 months and I haven't had a single problem with my hormones. There is hope with all of this, don't give up thinking it can't turn out for the best. Have you picked out your surgeon yet? If so how many surgeries has he performed like this one? and what is his/her complication rate? Those are very imortant things to look into the more surgeries they have done the fewer complications may occur. I do remember having many of the same worries before my surgery as well, and I went to a pshycologist to get some help, and it helped me to organize my thoughts in a constructive way so I could deal with the thought of having surgery. I really feel for you, it is very easy to let you mind wonder off into a bad direction with all of this.


11/20/2009 06:36 PM
JimKT1
Posts: 281
Member

Slove, I don't blame you. My anxiety the week before surgery was insane and decided to take most of that week off.

This is taken from a thread that kkelly2802 started in the adenoma forum, but your anxieties are not out of the ordinary. As embarrassing as some of these are, I'll share the fears I had going into surgery:

1) Afraid of my hormones not normalizing after surgery.

2) Afraid of lifetime treatment.

3) Will I still be able to make love to my wife?

4) Death - of course

5) Afraid of what type of person I will become a year from now. Will I become more of a jackass? Will I still be the same person my wife married?

6) What will my quality of life be after surgery?

7) How will my wife and I recover from this?

8) Will we be able to have children naturally?

With that being said, I am now almost 14 days out of surgery and so far, so good. The neurosurgeon saved my entire gland and my hormones seem to be alright. I haven't had any blood drawn aside except to check my sodium levels and that just finally normalized today. So, the ADH is working spot on and I assume that my other ones are working at least to the same levels they were prior to surgery.

In fact, if it weren't for doctor's orders to take things easy till the post-op appointment I'd be out mountain biking, working on the cars and hitting the range with my friends. Also, the wife and I have been acting as if we were still in college, if you know what I mean. By the way, we met in college so it's all good.

kkelly asks some very good questions. Find out how many pituitary and skull base surgeries your surgeon has done. Ask about his complication rate as well. Those two statistics will help better your odds in this game. Also, if you haven't done so already ask about which method he/she will perform.

These surgeries are unfortunately very common. My endocrinologist told us that the pituitary center at the hospital I went to gets on average 2-3 new patients a week (post op). My cousin is a radiologist and he sees at least one new pituitary MRI a week and he's not the only radiologist at his hospital. Fortunately, the numbers are on our side for survivability.

My wife and I have accepted that this is just something that we will have to look over our shoulders for the rest of our lives.


11/21/2009 02:50 AM
slove
slove  
Posts: 32
Member

It's reassuring to know that everyone has the same fears with the surgery and afterwards. I know I'm having surgery through my nose and the ENT Surgeon (apparently he has done heaps of these) will do his bit then the Neurosurgeon will remove the tumour (he only does about 4 a year) then the ENT Surgeon will finish. I'm not seeing either of them again until the big day.

I ended up going to my lunch thing today and was pretty flat throughout the whole thing. My husband is being such a good support but I think he is getting frustrated with my negativity (as I mentioned earlier I'm usually pretty positive). God this whole thing is consuming my thoughts.


11/21/2009 02:57 AM
slove
slove  
Posts: 32
Member

I think I sound pretty miserable everytime I post something so just wanted to say thank you to you all for sharing your stories & your positive responses. I'm not usually into chatrooms or things like that but am soooooooo glad I joined this forum and can speak to you all X Smile

11/21/2009 03:17 AM
slove
slove  
Posts: 32
Member

Just one more question.....I read that dry skin & hair can be part of all this & I now have both. I have a dermatitus type thing on my hands which has only happened in the last few months and basically my hands get so dry that my skin is literally cracking and bleeding (only on my hands). Has anyone else experienced this?

By the way since I'm talking to you all so often I thought I'd give you some more information about me. My name is Sharon, I'm 38, happily married and have two daughters who are nearly 7 and nearly 2. Oh and I live in Australia. Cheerful


11/21/2009 06:24 AM
maigrey
maigreyPosts: 125
Member

Oh boy do I know what you're talking about! I used Eucerin during the day, then at night I put on, HAH slathered on eucerin, bag balm and vaseline then a topcoat of latex (hope your okay with latex) gloves. My feet too. It reduced the dry skin some what. After the surgery it slowly went away. My hair is another story. I hacked it all off after surgery. It was falling out and dry besides the fact that they shaved parts of my head for these little sticky things they put in as a road map to your tumor. My hair went completely white (I'm older than you by a good 10 years) so I grabbed my cousin the cosmetologist, some liquid courage (shots of some awful tasting alcoholic beverage) and let her cut off my hair. She did a very nice job. It's slowly growing back but I'm white as a ghost. Takes a bit of getting used to.The dry hands and hair will slowly subside after surgery. It took about 3 months.

My hair is now soft and to my shoulders again. It used to be to the middle of my back. I don't miss having my hair caught in the car door on a windy day!!!!!!! Take care down under and thanks for Russell Crowe and Jet!!!!!!!!

maigrey

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