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07/21/2011 01:48 PM

New with many questions

Keeraa
Keeraa  
Posts: 19
New Member

Hey,

I am a 23 year old female and I had a ct scan done to check out my sinuses. My doctor shocked me by telling me that my pituitary gland was enlarged and that he could see it going into my sinuses.

He asked me if I ever had any hormonal problems and I have been having irregular periods for a very long time.

I have yet to go to the MRI but by looking up information I am sure that this has been affecting my life. I have a characteristic small buffalo hump below my neck that people with cushing's syndrome seem to have. I see many of you have migraines and I rarely have any headaches and don't have vision problems. I get dizzy easily however. Do any of you NOT have headaches who are dealing with this?

I was wondering mainly about post surgery. How many of you have seen good results?

Any issues?

Did you lose weight soon after?

Of course Im nervous for surgery so I want to know if any of you experienced any complications. It's a pretty important gland so it's a little scary thinking that it may be removed Sad

Please share any information!

Smile

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07/21/2011 02:03 PM
Keeraa
Keeraa  
Posts: 19
New Member

Also, are any of you a normal weight with the gland affected?

07/21/2011 02:19 PM
escinkc
 
Posts: 195
Member

Hi there - sorry to hear of your news that you have an enlarged pituitary, which I am for now assuming really means that you have an adenoma (tumor).

First, the good news: These are nearly always benign, and although surgery may be something you have to deal with, it does not usually involve removal of the pituitary gland itself. It really depends on a lot of things, but I had what is considered a really large tumor and although my gland is currently (and maybe permanently) on hiatus, it was not removed during either of my two surgeries.

After you have an MRI and assuming it confirms you have a pit tumor, next stop for you is an endocrinologist for a full work-up! You will find out if it is a 'functioning' or non-functioning tumor, and you will find out many things about your endocrine chemistry so to speak. From there, you will begin to find some answers regarding some of your questions, like what may be causing weight gains, the hump you mentioned, etc.

Try your best to find an endo who has experience with pit tumors! That is really important, but if you don't have one near you, then either try and travel to one, and/or spend some time reading on line about pit tumors, their effects, treatment, etc. and become your own health advocate. There is a lot of ignorance in the medical community about these things, and it will help you immeasureably to be self-educated about the condition. Your first round of blood work will tell you a lot about your anticipated treatment path. There is a reasonable chance you may never have to have surgery at all!

And to answer your other question, many people with pit tumors do not have weight issues (loss or gain). It really depends on the kind of tumor. Cushing's patients can gain a lot of weight due to excess cortisol, while people like me have a shortage of cortisol and are more likely to lose weight or remain very stable. Many varities are out there.

I wish you the best and hope you find out soon what you are dealing with. Feel free to ask any questions you have on here - this is a great group of folks who enjoy helping folks just like yourself. Smile


07/21/2011 02:41 PM
Keeraa
Keeraa  
Posts: 19
New Member

Thank you so much for your quick and helpful reply.

I have already researched so much because of the anxiety that has taken over me. I live near Emory of Atlanta which seems to have an entire section that deals with pituitary issues. http://www.emoryhealthcare.org/pituitary/index.html I will throw in a link for anyone who is interested.

Did you have any problems after or during either of your surgeries?

Also this is a random question but do you have to have a catheter put in? I havent even been set for surgery but

I just want to give myself plenty of time to prepare just in case Wink


07/21/2011 03:22 PM
escinkc
 
Posts: 195
Member

That's great news that you are near Emory - you will be well taken care of there! It is an excellent center and I know of at least one other member on here who has been treated there and is doing well.

I still have remnants of tumor around my carotid arteries, mostly on the left side (inoperable areas). Mine was pretty invasive and way too big for the amount of space available in there - so it pressed into my cavernous sinuses. The only 'problem' I have after the surgeries is really only chemical in nature - meaning, I feel great, I'm very active, I have lot's of energy most of the time, live a totally normal life (taking a few drugs though) but my IGF-1 level which is associated with growth hormone is still too high. So I am on drugs to try and drop it down. It's from the residual tumor, as my tumor was a co-secretor: prolactin and growth hormone. I just did some blood tests this week and will have the results tomorrow or Monday. I'm eager to see where my numbers fall now after a couple of months on my new drug (Somatuline Depot).

This may be of interest for you: here is my list of meds, and these are fairly common for pit patients: synthroid (for secondary hyperthyroidism), hydrocortisone (due to hypotiuitaryism, is a replacement for cortisol), cabergoline (to keep the prolactin levels in check and try and shrink away residual tumor, but it's not really very effective for me), testosterone (because men with pit problems end up with lowered levels of testosterone), and the somatuline depot (for the IGF-1). What fun, huh!

And yes, the catheter was part of the deal -- but you know what, I feared and dreaded it but I almost didn't even know I had it while I was in the ICU (two days each time). I admit it was pretty creepy (not painful) when they pulled it out, but they were kind enough to put it in while I was under the general anesthesia! They had it in me to measure my water output - diabetes insipidus reared its ugly head after each surgery, but it is gone now! So I used to have to take DDAVP (desmopressin) to control that, but am off of that drug now.

Hope this information is helpful - remember, yours may not be secreting anything, or it may have very different effects on your system. I'm just sharing this information for you to get a glimpse of one case, albeit a fairly common pit tumor scenario.


07/21/2011 04:59 PM
Keeraa
Keeraa  
Posts: 19
New Member

Thanks again Smile

I'm soaking in your information heheh. I guess I just have to be patient but I'm glad I found this forum because most posts I've read here have happy endings. I'm sure I will have more questions later and I will post them as they form~

The catheter idea might even be worrying me more than the actual surgery >Sad


07/22/2011 07:14 AM
CircleW2
Posts: 37
New Member

Hey Keeraa, Glad to see youhave found a good discussion/support group! You may check out my profile as well when you get a chance...I'm also 24 years old and just found out about my pituitary tumor. Mine sounds like its probably a bit different than yours, but I hope I can be of some help! The buffalo hump and dizziness can both be symptoms of cortisol problems. I would never say anything to scare you, just make you more aware that maybe you should ask you endocrinologist about testing you. You want to the feel as best as possible.

When I was 14 I had kidney surgery due to having reflux since the time I was 5 years old. They found it due to recurrent UTI's and just poor health. As a young kid the testing for this as well as the surgery included catheters. Its definately a fair reason to be anxious. I have some issues with catheters, fear/anxiety with them as well. To be honest with you, I never even though about that with the pituitary surgery. I work in a hospital and see patient's with them all the time and don't pay much attention, but it is a big deal as a patient. It will be alright...I just "put my big girl panties on" as I say now and go along with things. The worse my health problems get, the more I notice dr's being cold and just to the point of what needs done, they don't give much thought to our fears, even though we have them!

Hope to talk to you soon,

Stephanie


07/22/2011 09:49 AM
Keeraa
Keeraa  
Posts: 19
New Member

Hello stephanie,

I was wondering how many people my age were found with tumors. I will definitely read up on your profile. Thank you! I like all of the options here and I will make a diary as well once everything is over.


07/22/2011 12:13 PM
CircleW2
Posts: 37
New Member

Yeah, they are actually pretty common, just usually undiagnosed. I have read in several places that 20% of the population has them. Of course their are a few different types and like I said alot of times go undiagnosed. What is next for you? A trip to the endocrinologist? Bloodwork? I looked at that website for the hospital in atlanta, they sound reputable. Thats VERY important with this.

07/22/2011 02:02 PM
Keeraa
Keeraa  
Posts: 19
New Member

I was looking at your profile. You've conquered a lot! Have you had your surgery yet?

I still have to get my MRI. All I have been told is that my gland is enlarged and was found in my sinus. I have self diagnosed myself because researching this has solved a lot of mysteries I have had with my body. My ENT is actually the one who discovered it and I realize now that it has been causing me problems for a while and I didn't even realize it. I didn't really consider that something specific could be causing my dizziness. Every time I bend over and stand up I feel an extreme dizzy attack for a few moments. I haven't had any head ache problems or sight so far. I can see now that I do have a hormone imbalance and I have just a few symptoms that seem to show up in those with cushings.

It's like I unlocked something about myself within minutes.

It's very overwhelming. Ermm

Post edited by: Keeraa, at: 07/22/2011 02:38 PM

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