surgery.....someone to talk to

I kinda need someone to talk to right now.....

As some of you know i am getting brain surgery for my trigeminal neuralgia, caused by my tumor....

The doctor agreed to the surgery and is hopeful.

It is more complicated though because of the tumor, he has only seen this situation a handful times before so the combination is extremely rare and this makes it difficult for him as well.

And there is a higher risk of complications afterwards.

We set the date for the surgery on January 26th...

He asked me if i want to be resuscitated, which is standard but hit me hard....

And now i just feel restless, uneasy and nervous and need someone to talk to right now.....am very emotional but don't want to keep crying around my mom of friends cause they are struggling with this as well.

So maybe someone has something to say or advice or reassure me?

You will be okay darling. I know it is hard right now. We are the only people we know with the condition. But I feel in my heart you will be fine. ❤️

So far I've never had a surgery in my life so I can't really relate to the emotions you're going through. Think of it this way: all the tears, all the suffering you're going through is there to serve you. It'll make you a stronger and much better person than you've ever believed. Use your pain as a fuel for your greatest growth. I know it's easier said than done but don't spend your time untill the operation worrying about it. Worrying never does any good. What you really need now is support, real friends, family and a good laugh. And also, we're here for you

It's just the thought of the actual surgery......even though i have all the confidence in my doctor, he really is the best here in Holland.

But still....was this the right decision? Can i quit the meds? Will i feel like myself again finally? Will i get a complication and regret the whole thing? Will it not work and all for nothing? And then just the simple thought of brain surgery is overwhelming at the moment.......

It's just the thought of the actual surgery......even though i have all the confidence in my doctor, he really is the best here in Holland.

But still....was this the right decision? Can i quit the meds? Will i feel like myself again finally? Will i get a complication and regret the whole thing? Will it not work and all for nothing? And then just the simple thought of brain surgery is overwhelming at the moment.......

There ain't a person in this world that wouldn't be afraid of having a surgery. Listen to your doctor, he knows better than us

Brutal thanks! That's just it, i need a laugh and a talk right now, share my thoughts and my worries.

But all my friends are at work and can't reach anyone now, but also don't want to keep loading on them....

So it's nice to know there are kind people here i can talk to and it won't affect you all since you don't know me.

Easier for me to share my fears

I know the surgery seems scary but the life we are living right now is scary as well . If it is a way out of the condition even temporarily say 10 or 15 years that is great!! It would be awesome to have 15 years of wonderful blissful life without pain or side effects . Just imagine how glorious that would be .

Well the thing is i cannot go on like this, right now i have no life.

I even got send home from work because I'm unable to work, I'm extremely dizzy which is probably caused by the tumor.

So i made the choice to do this myself and that's what i keep thinking about and some days I'm good and peaceful and days like today I'm not well, I'm struggling, I'm scared, I'm uneasy, thinking about will it work? Will it have the desired outcome? What will the laying effects be if any? How long will the recovery time be?

Stuff like that....

With some people the surgery doesn't work, what if I'm one of them? I really put all my hopes into this and all my faith into my doctor but even he is unsure....

He does want to do it and is hopeful but it's complicated also for him....because of the tumor.....

But yes the thought of coming out of surgery and getting to quit my meds and no pain is such a wonderful thought! I hold on to that!

Just hold onto all things good Sara just hold onto them .

I will! But sometimes all the other stuff just take over and i get so scared

I hear you I hear you . I know it's hard not to think of the negative . But try and think of the actual outcome of the surgery statistically . I believe it has been over 90% success rate . And the rate of actual death is only 2% . And if you have a very skilled surgeon probably the rate of success is better . I have heard the initial recovery time for the first MVD is about six weeks . Any subsequent MVD's take longer . And this surgery has the least amount of injury to other nerves . I really do think it's probably the best way to go even if it's more invasive .

Vic once told me about an invasive and non-invasive surgery for TN, and I don't know if things are done differently because of your tumor - But regardless, of course it is intimidating! It's your brain. And you reserve the right to be afraid and feel emotional about it. Anyone would. You also reserve the right to be excited about being med and relatively pain-free, too! All of it at once!

You said it, you have no life. And Vic has said the side effects of these medications are wretched. I think most people in your position would eventually take the shot at the surgery. If there's a complication, then there is sara. You and your medical team will deal with that IF it comes. Right now you are in pain, you can't live, and you're taking this chance at a much higher quality of life. I think it's exciting as much as it is nerve wracking.

And of course you can change your mind, if you want. It's your body. You're not bound to it. Just keep that in mind, okay? You don't HAVE to go through with it if you have too many reservations, you have that control.

Yeah but that's just it, my tumor makes the whole thing different than normal, less chance of working, more chance of complications, longer recovery.

Doctor told me al this Monday, the tumor just makes it all very unsure. He agrees it's the best chance and he supports me for doing it but he has only done this surgery and seen this combination a handful of times.

It's way more complicated, he has to move the tumor aside to get to the nerve, he places lots of needles in my face that give him a signal if he hits the nerve but that chance is bigger because of the tumor that's in the way.

So even for him this is all a guessing game

Thanks cheet, that actually helps, i don't want to change my mind but as you said i do have that option.....that helps, hadn't thought of it that way!

But I'm not gonna change my mind, but still....

You can't live with these meds, not if you have to so much....I'm a freaking zombie and pretty much sleep al day if i let myself

This btw is the invasive surgery.....the mvd....most invasive and best chance of succes.....the less invasive has a lesser success rate so i choose this one

It's all your decision honey bunny . And if I were you I would be scared crapless too. But as you said these medications are no life . What choice is there?

Exactly.....i took the step to go for this myself.....

But it's still very very scary and sometimes like this afternoon, it overwhelms me....

It's still 3 months away so it will fade again but i think i will still have those periods between now and then....

This happened last year as well before my radiation and that was way less scary as this.

But i read that most say afterwards that it wasn't as bad as they thought

Absolutely it is your prerogative to be as scared as you want . We are here . ❤️

Thanks! That is great to know, you all have been there for the past 18 months since the tumor had been discovered and i can honestly say that that has been a real lifeline sometimes!

Thanks! That is great to know, you all have been there for the past 18 months since the tumor had been discovered and i can honestly say that that has been a real lifeline sometimes!

Sometimes we just need that lifeline . And to know that other people actually care .

Especially on the low days!

And right back at you btw!

Surgery is scary, that's a given. But like other posters, even if I don't know you I somehow have a feeling it will go smoothly, and soon afterwards you will feel like a new person! Focus on the good outcome, and as difficult as it may be, try not to dwell on the surgery itself, it sounds like you are in good hands. They make you sign waivers for anything these days, so they can protect themselves...it is scary but it's just a precaution they take.

I wish you the best of luck, and I am looking forward to your updates with good news

Thank you greta! I can't wait for those updates myself!

Think positive, Sara. We have your back, and we're all here to support you.

*Hugs*