MVD / Janetta Surgery (micro vascular decrompression)

[sara-pezzini]

has anyone here had this type of surgery or knows something about it or someone who had it?

 

i have chosen to undergo that surgery for trigeminal neuralgia, which has gotten to a point that medication no longer works and i am taking so much meds that it isn't even healthy anymore and i want to get rid of that as well....

 

my TN is caused by a tumor in my head but it is still the typical TN so i would classify...

 

the surgery basically means that they separate the vessel from the nerve, ending the pain......they put something between it so it can't happen again, or at least not any time soon...

read stories of people who were 12 years pain free!! which sounds like a dream!

 

but....it is still brain surgery and major surgery and i am scared....

 

so does anyone know anything about it to tell me if this really works or not?

i will call the doctor this week to get the ball rolling....one thing is certain, i cannot go on like this!

TN is hell!!!!

[Matt3939]

The classic surgery you are talking about has to do with the nerve it's behind the ear. It's not in your brain. You do mention though that you had a tumor? Did you have surgery on that or therapy to diminish it's size? They usually can see a compression on that nerve if its affected with MRI. The surgery just to the nerve has a high success rate.

[sara-pezzini]

that kind of nitpicking is not helpful, look it up it is brain surgery!!! please look it up! they go in behind the ear and remove part of the skull and what follows is intricate brain surgery....not my words, found online....the doctor has to be under your skull, as in your brain!

but even so, i am scared, they are in my head, with lots of nerves there and a lot can go wrong, so then to tell me it isn't brain surgery is not helpful and not what i asked.....this is scary as hell for me!

[sara-pezzini]

you can see in my signature that i had radiation in january.....tumor is starting to die....pain sadly does not....

[Matt3939]

I am very sorry I never intended to diminish what you are going thru emotionally. Yes they do open the skull. I was just stating they don't remove any part of or go into the brain itself.

[chitown9]

Yes, it is very scary. It does sound like there is no other option than to do this surgery to eliminate the pain, however; is that correct? chi

[sara-pezzini]

they move the brain aside to get to the nerve and there are so many nerves there that there most certain are side effects to what they are doing, if they touch something in there you will notice it right away.....it's scary, very scary but i cannot keep going on like this, those meds are hell as well, and something needs to be done....three options of which this is the scariest by far.....the gamma knife radiation i had in january was scary as well but a picnic compared to this....i would like to find people who have had it done or know people who have....to reassure me if possible....

[sara-pezzini]

Yes, it is very scary. It does sound like there is no other option than to do this surger to elimate the pain, however; is that correct? chi

yes that's true! i am maxed out with the meds but the pain keeps coming through.....this is the option that has the best result in terms of how long you stay pain free

of course there are no guarantees as with the other two option as well

[chitown9]

Maybe you could ask the doctor if he can put you in touch with someone who had the same surgery. chi

[chitown9]

What is especially scary is when they instruct you of the worst case scenario. I had my right ankle fused and the doctor told me that it was possible that my right leg might need to ambutated. The worst case scenario is unlikely, but still possible. chi

[sara-pezzini]

Oh yes i could certainly find people that way but i wanted to see here as well, my go to place in need....got lots of great support here in my very difficult 16 past months! Grateful for that!

[sara-pezzini]

What is especially scary is when they instruct you of the worst case scenario. I had my right ankle fused and the doctor told me that it was possible that my right leg might need to ambutated. The worst case scenario is unlikely, but still possible. chi

That sounds horrible! Is it okay now?

Yes true! And if the doctor holding the tiny instruments in my brain is suddenly sneezing my personality may change or i could have any number of problems haha but seriously yes that is the scary part, they also have to tell you that there is a small risk that you get a stroke or die.....okay that takes away my fear! Imagine my parents who will be in the waiting room then!

[Seraphim]

As you know I haven't gone through it yet but I will be there with you one day. ❤️

[Capricorn3]

I haven't heard of, or know anyone who has undergone that treatment/surgery, but just sending you ~cyber hugs~ and best wishes that all goes well for you. Sorry you have to go through so much pain.

[sara-pezzini]

thank you both! it's scary and i am scared.....hopeful it'll work and i cannot go on like this, but still scared!

i hope you won't need it vic!

[catfeeder]

Hello Sara,

Sorry to hear your pain remains unbearable, but glad that you have found a viable option. While I have not had this surgery, I can tell you the mental and emotional course I pursued for 2 other surgeries.

 

I recognized that since I agreed to the surgery, I wasn't going back, so from there I had two choices: I could scare myself and make this more difficult, or I could project my focus forward and make it less difficult. Those were my only two options. Any fence riding between the two was just a selection of the scary option.

 

I decided to skip that, because worry is NOT preventative.

 

So I can appreciate weighing your options carefully, but once you decide on one, make the next choice: how you'll handle your choices in every moment about where you'll want to place your focus.

 

If you want more help with that, feel free to let us know how we can help.

 

Love and healing energies,

Cat

[sara-pezzini]

thank you Cat! i have made the choice and hope the doctor agrees with me and then we will go into this process....i will try to keep the stress and worry far from me until the actual date of surgery, if i can, and i will remember that i myself choose this option and like the radiation last year, i choose that as well and i will try to focus all my positive thoughts into the outcome, painfree out of the surgery and no more need for meds! cause i think overall the meds i take are far worse than this surgery will be!!! it just still sounds scary....lol

[catfeeder]

thank you Cat! i have made the choice and hope the doctor agrees with me and then we will go into this process....i will try to keep the stress and worry far from me until the actual date of surgery, if i can, and i will remember that i myself choose this option and like the radiation last year, i choose that as well and i will try to focus all my positive thoughts into the outcome, painfree out of the surgery and no more need for meds! cause i think overall the meds i take are far worse than this surgery will be!!! it just still sounds scary....lol

 

Great work, Sara. Sure, it sounds scary--so decide how much sound you want to hear. I decided that the 'general idea' of the surgery was all I needed to know, given that I'm not looking over the surgeon's shoulder to supervise. Possible risks and potential outcomes were also advantageous to consider--to a degree, but I decided my own tipping point. Otherwise, what was the point?

 

There's such a thing as due diligence: learning your options for a procedure, selecting the one for you, and pursuing the surgeon who's experience and reputation you trust most. There's also a benefit to lining up resources should an undesirable outcome force me to reach for those. Beyond that would move me into 'hypervigilance,' which is the opposite of healing--it's stressing.

 

So the idea is to find the balance between what we 'need' to know and do versus moving ourselves into our own personal horror movie where we scare ourselves with visions of exaggeratedly bad outcomes. To me, that's just a choice to suffer lousy consequences in advance--and to what purpose?

 

Instead, I opted to complete and notarize and Advanced Directive regarding my care, along with a will. I assembled all of my investment and other papers and reviewed them with my family far enough in advance to avoid creeping them out. From there, I focused on cleaning out my apartment of all 'junk' I wouldn't want my family to contend with should my highest Self opt for me to exit this plane.

 

The 'practicality' of this work kept me focused and productive, and I found myself optimistic and liberated. I also felt like a Very Good Girl for all of this, and I decided that I get points for that on the positive side of outcomes. Hah!

 

With you in spirit,

Cat

[sara-pezzini]

those are some great tips! i already have the best neuro-surgeon in Holland, and he is an expert in TN so i have full trust in him, this hospital is also the one where i got the radiation so i know it is a great place and i feel comfortable there and the nurses as well are great!

the will thing is a good idea, there is a 2% chance of death, so not a lot, but it could happen.....so i will go over that with my parents!

and i always need to have control, so cleaning out the house is a great idea for me....

last year i made lots of food for in the freezer for my first few weeks but since i don't think i can go home alone this time, now will my parents allow it, cleaning is a great alternative!

i do know what eventually could go wrong as well but don't want to hear the horror stories.....that will only drive me crazy haha

[sara-pezzini]

made the appointment with the neuro-surgeon, october 24th and then we will first have a talk, see if he agrees but probably will since he's already mentioned this last year as an option....

[catfeeder]

made the appointment with the neuro-surgeon, october 24th and then we will first have a talk, see if he agrees but probably will since he's already mentioned this last year as an option....

 

That's great, Sara. I'd continue to invest in meditative exercises along with any other means of pain relief you can find. Continue researching techniques. Are you working with a pain management clinic?

 

I would challenge my body to heal itself before the surgery. I'd make an ongoing mantra in my head, "Heal my self before someone else heals me." The goal is not to avoid the surgery, but rather to avoid adopting a hypnotic suggestion that you cannot find relief 'until...' a date on the calendar.

 

This can help you reverse a phenomena similar to being able to hold your bladder and plow through discomfort until you reach the door to your home. Then the urgency intensifies suddenly as you race for the bathroom. This happens when we tell ourselves..."Eh, I can hold it until I get home..."

 

You don't want to do the same with your pain. So the idea is not, "I can hold on until the surgery..." but rather, "I can release this before surgery..."

 

I'm not implying that the goal is to forego a surgical fix. The goal is to release yourself from pain rather than holding onto it 'until...' by using the decision you've made for surgery as a suggestion to 'let go' rather than 'hold on'.

 

(((Hugs))

Cat

[sara-pezzini]

thank you again, i am currently not in pain, pain went away, yay! i have tried to will this tumor to die and it is, so i will continue that and will this surgery to a success!!

so yeah, i was nervous yesterday, after making the appointment, but that's gone now, i know exactly why i am doing it, to get me off these meds and just have no pain without them and i have great hope that will work!!

so i will just will it to work!!! lol

[catfeeder]

thank you again, i am currently not in pain, pain went away, yay!

 

That's wonderful, Sara. Yay!

 

i have tried to will this tumor to die and it is, so i will continue that and will this surgery to a success!!

 

What language are you using, exactly? The word 'die' is not a good one, because your unconscious applies all language globally. So your focus needs to use positive language, only. Words like, 'healing', 'health', 'combat', 'victory', 'clearing', 'cleansing', 'strength', 'overcome', 'overpower', and envisioning healthy tissue growing into all spaces would be more beneficial than adopting any language that implies a killing or destruction of anything.

 

Your focus becomes one of the strength and healing power of the body rather than the weakness and death of the tumor.

 

Thrilled that you are pain free. Keep thriving!

 

Love, Cat

[sara-pezzini]

i didn't use the actual word die obviously hahaha i used overpower, but in dutch of course...i know about the power of negative words so i don't use those! i use positive words, i do know a little bit about this but not much yet, but that part i did know! victory is another one i use and overcome and healing and strength as well.....it does seem to work! so i will keep that up!!! i will overcome this!!! and come out better!