I still have my pituitary Tumour is that rare not have it operated?

[Skinnyninja77]

I have had my non-functioning pituitary Tumour for the last 8 years. i found out that i had one because i suffered what i thought was a migraine that i had really bad for 2 weeks and couldn't cope any more so was taken to hospital.

After 1 x Xray 1x CT 1x MRI they told me that i had a pituitary tumour that had bleed.. to me i thought that was pretty serious but the hospital in UK thst i was in didn't think that it was too much of an issue..

I had blood tests done and found that every thing was still normal and they repeated MRI's evry 6 months for about 3 years but now i have pretty much been forgotten about as it hasn't really caused me apart from migraine related headaches, numbness on one side of my face and shooting pains in my head but have learned to deal with them.

They didn't think it was necessary to operate of which i'm glad because it didn't cause me any visual problems and at this point in time still doesn't

However i had to have an MRI done last October because i have been diagnosed Transverse mylitis and the nerologist decided that she would check how my tumour is doing as well.. Waiting to see the Neurologist in a couple of weeks.. so i expect it will be the same story nothing has changed so we will not worry about it..

Just a question if any one knows because it has bleed once is there a chance that it could bleed again?

Thanks for taking the time to read this

Kerry :O)

[rumpled]

I would not give up. Please. It took me over 12 years to get help for mine. I did at one time get old records - it cost me $$$ but I had them dig them up and copy pages - it cost $1 a page and I actually found critical information in the data I dug up.

There is a pituitary network in the UK. It is so terribly awful that at a time when we feel at our worst, we have to fight the hardest. I know that there were YEARS that I gave up and even stopped going to doctors. I tried natural herbs and stuff - anything - just anything - to help give me some energy back and make me feel better. Get yourself a pituitary buddy and get back on track.

I found my tumor twin on line and it made all the difference to me. We used each other to build each other up and we had our surgeries months apart (she made me go first, always! LOL) and compared notes - and we came up with the TTwins after we found we both had Cushing's and a prolactinoma, and both nearly the same size! Adrenals were about the same too!

My family does not understand at all "you look find" [I am permanent disability!!!] - my "friends" gave me diet videos - it just is not possible to understand living in this body - so you have to find the help you need - here is ok too! and find the inner strength you need move on to get your diagnosis and treatment.

[Skinnyninja77]

Hi Jen

The testing was done so long ago now i don't expect that they have them anymore..

The tests were indeed done in the morning quiet early..
I guessed because they came back normal that's it nothing was done about it.. so 8 years have passed and have been forgotten about.. because there has not been any major problems.. well say that i have pretty much tried to get on with life and forget that's it's there..

Because i was told pretty much what every one else has been saying people can live with this for years and not even know they have a pituitary tumour.. so i should just deal with it and get on with life.. In the UK they don't seem to care too much about it well that's what i feel any way.

I'm off to see the neuro next Tuesday so i hopefully i'll have a word with them and see what they have to say..

But thanks for reading and for some one to understand what i'm going through..

Kerry x

[rumpled]

Can you get copies of that testing? I was told my tests were normal - they were not. Plus time of day of testing is meaningful for pituitary testing, so if they tested you in the afternoon and only tested you once, your set of testing is pretty much, well... eh... worth another look.

The thing is *once a pituitary patient ALWAYS a pituitary patient* so the doc (the expert?) is silly to just let you go. You may have been kinda normal at that time, but things change. Heck, I am 10 years out now and just now getting stable. I am not typical, but I know things change. So I stay on top of them.

The MRI is just 5% of the story - the labs really tell the crux of the story. They also have to be well done. Lab error, doc error and tech error kept me back for years - many many many years.

[Skinnyninja77]

Hi Rumpled

Thanks for the post. when i was first diagnoised i did get refered to the right people pituitary nurse etc. also had the special tests done for homones etc of which i spent the best part of a day having done.. but they all come back normal..

i have been having a battle with the doctors for years as you can imagine. i do understand that pituitary apoplexy can be quiet serious and that i had my concerns at the time with this. but as usual the doctors fob you off and i was made to feel that i was wasteing there time to the degree my husband put in a complaint but never heard about it.. they have also said that the headaches that i still suffer and the numbness etc has nothing to do with the tumour so again they dissmissed it..

I saw a fantasic neuro surgeon who sadly is no longer at the hospital who said that there was no possible way of knowing this would or wouldn't happen again. but once again as this does not cause me any visual problems and i am able to get on with day to day life then it's not a problem..

I'm due to see a neurologist in a couple of weeks like i said before who was going to chase up the results of the previous MRI scan with contrast to the pituritary gland and compare to see if there has been any change.. and also to find out what the results of the recent scan again with contrast was like but also having been diagnosed with transverse mylitis with the possable chance of developing MS later on in life to compare if they are connected or not..

So i guess i'm goning to have to wait untill a few weeks time to get more than one answer and to see if there has been any change..

I do take your advice on board with every hting you have said and i am grateful for it..

Regards

Kerry x

[rumpled]

You need to find a pituitary specialist. A neurologist does not know and therefore cannot treat pituitary lesions. Pituitary apoplexy can be quite serious and you may or may not have another issue - but you may or may not have had the right testing, at the right time - and even the MRI should be a certain type (dynamic pituitary MRI).

I know it is difficult in the UK to get copies of testing - but I would try. I would also make sure that your testing is 8am fasting, and that any testing like ACTH is done correctly - it has to be in a chilled tube, spun immediately, and frozen promptly or it will degrade and be low (or normal) just from handling. Some other tests can be impacted from handling too.

There is a pituitary association in the UK - and most of my friends over there went to St. Barts for help. For sure you need to get more specialized help for the pituitary. The visual issue only comes into play if the tumor happens to grow up and around the optic nerve - which can and does happen in some - but plenty of people have other issues with just the hormones, or the tumor growing elsewhere. So you have to know what happened and what is left with the pituitary. You likely have empty sella or partial empty sella (if you can get MRI reports that is helpful - MRIS even better to show surgeons) which means the place where the pit sits is full of CSF fluid and what is behind there cannot be seen - so labs are even more important and MRIs are not so important. Testing carefully and well, and completely, is imperative.

Look up pituitary apoplexy - just today another person posted with it.