U2start.com | I'm leaving for a little while.

Aha ok, that's the most important! Take your time then

so here's an update sort-of-thing.

The first round of examinations after the surgery on March 1st is running these days/weeks. Some are done already, some are still ahead.

First of all, the blood tests are all thumbs up. No hidden infection or anything. The brain is healing without complications

The tests done by the endocrinologist -- who checks on everything hormone related, as the pituitary gland where the tumour was located is responsible for major hormone based body functions -- show everything works in normal parameters

The surgery could have caused damage to the pituitary gland. It can have many bad effects on your physical system, I won't go into details as it's a topic with multiple what ifs and everything. Main thing is, my pituitary gland is working alright. Full stop. What a blessing.

The only thing I'm dealing with since about 3 weeks now is a blood pressure that is way too high, even if I'm lying flat on my back resting. Around Easter it got so high that my doctor rang all alarm bells, had me checked again to make sure nothing's wrong in the brain area - since then, I'm taking some strong drugs to keep the blood pressure down, in means at a normal level. It works now, which makes me feel less like my heart is exploding any moment. It has the side effect of a bit of nausea, mostly in the evening when I grow tired, and a constantly fast heart rate that makes my heart stumble every now and then. But again, I can live with that for the time being

The docs hope the high blood pressure is caused by the hydrocortisone pills I'm taking ever since the surgery. It can have this effect, and I really hope once I can stop taking the h.cortisone my blood pressure will reutrn to normal. I know that some people need to take drugs to keep their blood pressure down for the rest of their life, after undergoing this surgery and taking h.cortisone. We'll see.

Headaches come and go. Some days are good -- that is when you find me online spamming this forum

-- some days are blah. It is the process of healing, after all my ol'brain has an opinion on having been invaded by someone

Been to the oculist twice. He checked my visual field. Before the surgery, my left eye was okay up to maybe 95% and it still is. All thumbs up. The right eye was the one heavily effected by the tumour. The visual field here is now still the same as it was before the surgery - which is good news. It hasn't changed for worse. The visual nerve needs to heal, which may take months up to a year or more. And it won't ever be fully normal again. Which is a fair deal for not getting worse. Sometimes I think I see a tiny bit more on the right eye and get a happy smiling fit. The next day I think I was just making it up. But every now and then I think the sight gets a wee bit better. Here's to hope.

Besides that..... I'm trying to get more and more active, physically. An act of balance as I always need to keep in mind the blood pressure issue (which affects the healing brain structures), so I must not overdo it in any way. Well..... done that already. Now and then. Helping my mother feeding the horses, taking them out on the meadows and all....... I'm a person who is used to work on her own all day. So seeing someone else doing my job is a hard test for me, having to keep my hands off work

but I'm getting there, taking it slow. Not always, and more and more often doing too much -- but my body tells me right away I've overdone it. I've had to learn lately that I need to rely on someone else's help and support, which wasn't easy for me, I admit it, but it was and is a lesson worth being taught

This Thursday another appointment at the "regular" doctor is coming up. More blood tests and all. In two weeks the next app. at the endocrinologist's. He is the one who decides about the hydrocortisone. I hope and pray that after these tests he will tell me I can try to lower the dose of h.cortisone and eventually stop taking it. Fingers crossed.

And on June 7th there comes the most important examination after the surgery. The first MRI. The one where you have to lie still in that tight tube thing and they make 3D scans of your brain. This one will show if all is as they want it to be in there.
You have to know, due to its size and location, the tumour couldn't be taken out completely. It never will, as it surrounds some major blood vessel the surgeons won't touch. The tumour itself is a good-natured one, so leaving parts of it inside is not too bad (which sounds somewhat strange to me, but what can you do). They just need to check now that everything in there is as good as it can, as it should be after the surgery. I'm counting down the days until this check, you bet, as it will - hopefully - give me some relief about my situation and so that I can actually start living again. As for now, all is still overshadowed by uncertainty and if everything is okay in the post-surgery process. I want to know I can go out there without being afraid that any minute something might happen in my brain.

*...*

that's it, my friends

nothing too exciting going on here. just healing.

Again, thanks to everyone who left their good thoughts and well wishes for me, left here or in pms and emails. You're true friends and you're much more part of this whole thing in this chapter of my life than you think.

oh and I swear I'll get back on you regarding the mail I got. where's my digicam when I need it...

ric

14 years

up until now i haven't felt it right to post in this thread as i'm in the middle of a bit of head based health scare at the moment (i had an MRI last thursday) and in mentioning that i really didn't/don't want to detract from or take any focus away from what your going through but can i just say i think your amazing and have dealt with all this in a way i could never imagine. i'm so glad your healing process is going well and i know you'll be feeling back to your old self in no time!

JuJuman

14 years

Thanks much for the update Kirsten! Needless to say, I'm very happy to read you, and to know that things are going as well as they can for the time being. It is worth giving the body the time it needs to heal, although I understand you want to get back to work soon! I'll be crossing my fingers for June the 7th!

Ale91

14 years

Originally posted by MacStripey:
The docs hope the high blood pressure is caused by the hydrocortisone pills I'm taking ever since the surgery. It can have this effect, and I really hope once I can stop taking the h.cortisone my blood pressure will reutrn to normal. I know that some people need to take drugs to keep their blood pressure down for the rest of their life, after undergoing this surgery and taking h.cortisone. We'll see.

Hi Kirsten! Glad to hear you're alright and healing

My sister had a general infection earlier this year, and she had similar effects to yours after taking hydrocortisone. She had to take pills to keep the pressure low only during post operatory, now, she no longer has to take them, her pressure is plain normal.

djrlewis

14 years

Originally posted by ric:up until now i haven't felt it right to post in this thread as i'm in the middle of a bit of head based health scare at the moment (i had an MRI last thursday) and in mentioning that i really didn't/don't want to detract from or take any focus away from what your going through but can i just say i think your amazing and have dealt with all this in a way i could never imagine. i'm so glad your healing process is going well and i know you'll be feeling back to your old self in no time!

Don't you worry about posting - I'm sure Kirsten won't mind sharing

hope everything works out ok for you.
Kirsten - great to hear your amazing progress so far, try and keep taking it easy! Here's to a clean MRI

WojBhoy

14 years

Great to read Kirsten, always good to hear you're making progress

love and good wishes being sent your way as ever.

KieranU2

14 years

Hello Kirsten! Glad to see that you are doing fine and thanks for updating us with all that's happened recently too. Always great to hear that you are improving day by day!

BelgianBono

14 years

Thanks for the update Kirsten

I think you're taking this all very good and positive, I doubt that I would have the courage to be that way.
Hopefully the MRI will be clean, but there are already quite good signs so...

One question (and I hope I'm not impolite or offending

) : if they keep parts of the tumor in your brain, then isn't there a chance it will grow again

I hope not of course, but I'm wondering that...

AidanFormigoni

14 years

Hi Kirsten

Always great hearing from you.

Nice to see you're getting better and better day after day. Still wish you all the best, and I'm sure you'll keep recovering till 100%.

And please don't try to push yourself above your limits. I know it's hard since you said you did stuff all by yourself, but you don't have to make us nervous here. Step by step and you're going to reach your goal.

God bless you and be sure He knows you're doing great

Greetings from Brazil

Mr_Trek

14 years

Very nice to read such a positive update like that, keep getting better!

MacStripey

14 years

some of you are still awaiting an answering pm from me. I'll be getting back to you soon. it's just that things are not going too well for a week or so now. blood pressure is running nuts, way too high. headaches and dizzyness are there as well. the doctors are "experimenting" with different drugs now, every change makes me feel like a pile of crap. just letting you know why I'm a bit absent from the forum these days. looking forward to the day I can stop taking any of these pills and live a normal life again. two steps forward, one step back. need to listen to U2 again to get going. /depressed

I'm leaving for a little while.

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