New Member Says Hello

New Member Says Hello

Postby member_41643 » Mon Jan 19, 2015 4:15 pm

Hello!

I'm not sure where to post this introduction so please excuse me. I'm Jim, 34 years old from Wales. After nearly a year of constant headaches, I was at last diagnosed with having a pituitary tumour last November and oh boy has my life turned upside down! I've not had much help or information from doctors so this site has been an invaluable help in teaching me what is going on with my body. I seem to have near constant headaches, loss of vision in my left eye and a worryingly lack of energy or concentration. I've taken leave from work and have had to postpone my degree studies until my operation, which still doesn't have a date. I've gone from being a really active person into something akin to a couch potato!

Anyway, enough of me, I'm looking forward to getting to know people and joining in on some discussions!
member_41643
 
Posts: 5
Joined: Mon Jan 19, 2015 10:49 am

Re: New Member Says Hello

Postby plum » Mon Jan 19, 2015 8:06 pm

hi and sorry to say welcome
(hope you understand what i mean....)

the feeling of bewilderment and fatigue etc is totally normal. go with it.
when i had counselling i was told 'to be kind to myself' - i took that to mean that i should stop getting annoyed with myself for being so pathetic and tired and incompetent etc.
i hope that you have a lot of patience?

what's up with your operation? maybe have a go at your doctor to push for a date etc. I had to be quite proactive at the beginning - i think i was running on adrenalin or something - to get appointments sorted out. sometimes letters get mislaid or put on the wrong pile, so there is no harm in calling just to check how things are progressing.

meanwhile hope that things go smoothly for you and feel free to post any questions on here - the forum has phases when it is quiet and then sometimes there is a flurry of messages - like having a pituitary condition i suppose- sometimes you have energy and sometimes you don't!

all the best!

plum
plum
 
Posts: 306
Joined: Tue Nov 09, 2010 9:41 am

Re: New Member Says Hello

Postby Carl » Tue Jan 20, 2015 12:48 pm

Hi Jim, welcome to the complex world of Pituitary conditions.....

For such a small gland, it can certainly cause some stress. Depending what type of tumour, where it is on the pituitary, can end up giving people such disparate symptoms. I consider myself one of the lucky ones in that once I was diagnosed it only took two weeks to have my tumour removed. I had an MRI scan on 18th May 2013, Endocrinologist appointment on the 24th May which confirmed the tumour and it was removed on 28th May. Mine happened so quickly because I too was suffering vision problems and it was feared my eyesight (optic nerve) would be irreparably damaged if they didn't act quickly. However, not all tumours are able to be removed so easily. The other part of my 'lucky' story, is that once the tumour was removed, my hormones have been stabilised with just two replacement drugs, Hydrocortisone and Testosterone.

As Plum said, I would certainly get pushy and find out what your path is for treatment....make a bit of a nuisance of yourself and push yourself to the front of the queue. Until you can get it clear exactly what the treatment will be, it will just add to the worry of it all.

Hope you get that stuff cleared up soon.

Cheers, Carl.
Carl
 
Posts: 184
Joined: Tue Oct 29, 2013 11:27 am
Location: Near Southampton, UK

Re: New Member Says Hello

Postby member_41643 » Mon Feb 09, 2015 1:48 pm

Thanks for the warm welcome both!

Well I pushed and pushed and finally had my operation a fortnight ago! It had gotten to the point where my vision was severely blurred in my left eye and slowly creeping in on my right. I managed to convince my doctor to arrange a second MRI scan due to such a rapid deterioration and no more than two hours later, I had a phone call asking me to get into hospital for an operation the next day. The tumour had grown a lot more than it was expected and it just had to come out.

That night in hospital, while waiting for the operation, I was very scared. The surgeon made a point of reminding me about permanent vision loss which had been troubling me since I was diagnosed. When it was first discovered, I was told that I would almost certainly loose my sight in at least one eye (talk about no bedside manner) and being reminded of this again had me in a panic. Thankfully, after the operation I woke up and found both eyes working like normal. The blur was gone and it was like the tumour had never been there, it was such an amazing relief to me!

The various leads and tubes coming out from me was a bit of a shock, plus I needed to wear an oxygen mask due to having a low heart rate for the first two days. I hate sitting in the same place for too long so by the third day, I started shifting around in the bed, it still hurt my head but I really needed to move. I previously read how some people have recovered within three days so I couldn't help but to feel disappointed when I wasn't at that stage too. Thankfully by day four I was moved to a private room and over the rest of the week, the leads and tubes started to come out until I was able to get out of bed and hobble over to my chair to read the newspaper. Freedom never felt so good.

Now back home, I still get the occasional headache when coughing or sneezing. I know the rule about trying to avoid them, but had a chest infection going into the operation and it's caused havoc coming out. I hope it doesn't leave any long term damage to the recovery. I also picked up Diabetes Insipidus so I constantly wake up during the night to use the toilet and sip some water. It's a real pain as I'm awake every hour and can never get a decent sleep, leaving me even more exhausted.

The problem is knowing who to see about it. I called the surgeon who wrote to my GP about me needing some tests, the GP didn't have a clue what these tests were and in turn, told me to contact my Endocrine nurse. Alas she didn't even know that I had the operation (still after two weeks, I didn't know that I had to inform her myself) and told me to wait while she contacted the surgeon. This is what annoys me the most, no one seems to know what is going on and I'm worried about no one being able to help if I need new medication or extra care.

Still the tumour is out, I have a phone call with my employers this week about returning to work soon though I'm not sure if I feel ready. I can't believe how much running around and chasing I have to do to get the right medical staff up to date, recovery is exhausting enough as it is!
member_41643
 
Posts: 5
Joined: Mon Jan 19, 2015 10:49 am

Re: New Member Says Hello

Postby Carl » Mon Feb 09, 2015 4:58 pm

Ha! Replied to your other post and hadn't read this one, didn't link the two. Great to hear about your vision, I think at this stage of proceedings it is good to focus on the good things that have happened, i.e. a) no more tumour and b) much better eyesight. As I said in my other post, DI really troubled me and like you it was the night-time that drove me and my wife mad. I was taking a jug of squash up to bed and was drinking a litre and a half or more during the night, and pee-ing out twice as much....or at least that's how it felt. I pestered my Endo quite a lot and after some persuasion they gave me Desmopressin tablets which cured the problem instantly. I was lucky in that after a while I gradually reduced the dose until I came off the tablets altogether....it never came back thank goodness. But I must have had it 6-8 weeks after the operation, and in summer 2013 we had really hot weather, so trying to work out what was genuine thirst and what was DI was a nightmare!

I was off work for 10 weeks in the end, thinking I'd only be off for a fortnight. I ended up back in hospital because I caught various chest/throat infections, so as well as the initial 5 days for the operation, I had another 5 days in hospital. Even after 10 weeks I wasn't on top form and work really took it out of me. So my advice, don't rush, listen to what your body is telling you and if it says "I'm not ready" then definitely don't push it.

Keep on at those Endo's!

Cheers, Carl
Carl
 
Posts: 184
Joined: Tue Oct 29, 2013 11:27 am
Location: Near Southampton, UK

Re: New Member Says Hello

Postby Mgh » Wed Feb 11, 2015 5:12 pm

I don't know where my head has been as I have just noticed this post. You have probably already noticed the steep learning curve you have embarked on!
In my experience it is best to accept that you will need to coordinate your case and the medical responses to the problems which may arise post surgery.
The information provided by the Pituitary Foundation and Alison, the nurse on the end of the phone, offer very valuable support. It will help you unravel all the threads so you can begin to understand what is going on and what to do about it.
It may take time for you to stabilise; returning to work before you are well enough might get in the way. Bear in mind that some post surgery problems may be temporary and individuals differ greatly. Hopefully, all will be well, but for the time being, be patient with yourself and allow yourself the time to negotiate each hurdle that may arise.
I wish you well!
Mgh
 
Posts: 111
Joined: Mon Jun 27, 2011 12:25 pm

Re: New Member Says Hello

Postby Pat » Thu Feb 12, 2015 9:08 am

Hi new member

Our post surgery fact sheet could be helpful right now- see http://www.pituitary.org.uk/information/publications/essential-free-publications/post-pituitary-surgery-fact-sheet/

Please don't hesitate to email me pat@pituitary.org.uk for any information or questions

This post -op 'fog' will lift
Pat
 
Posts: 311
Joined: Tue Sep 07, 2010 2:25 pm


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