ONE YEAR AGO TODAY MVD--What's Wrong?

General General TN & GPN (Old Site)
1

Wow!

I woke up pain free

Then had to go back on low meds for 9-10 weeks

Then no meds and sometimes lidocaine patches

Now only 3 patches since March !!!!

I still have PTSD - I'm searching my closet tonight frantically

for scarves I'm not sure I'll need!

I'm sitting at a good paying job that I thought would never happen as

I wondered if I would be able to get disability instead of working

in the Brand New career with Degrees and Mega Student Loans

I wondered if my brand new marriage would crumble--every time I put my hand near my face - he still looks at me and asks "does your face hurt"? He feels helpless to keep it away forever.

I wondered how often my teen would brush off my grabbing my face

and lose concern because it was such a common thing

All I had for sure was my pets and my antidepressants

the clouds have lifted but I have changed

I get paid to help people with disabilities get back to work------ IRONIC

I thought I would be dancing in the clouds by now and skipping around

rainbows. I come here to help because it helps me to educate-- this is

one place I still belong - as remission is Never Forever

I still attend in-person group meetings - just in case / and to give hope

But I've really disconnected from my real friends whom I've dropped over 2 years, I've distanced myself - The gaps are so large now - decade long friends I've ignored while in my black hole

Why would a chronic illness of less than 2 years change your outlook still?

When will my heart be lighter

When will I stop looking over my shoulder

When will optimism return

I have no other major life crises - I'm fine - I just thought confetti would fall out of the sky

I dreamed of this day - and now it's here - why have I not resumed dancing 100% -- why only 25% ???

I'm in the mental health field and still cannot figure this out! I'm grateful, I'm content, I'm blessed, I'm lucky

Where is the parade for me - who fought sooooo hard to get here?

Why do I feel less than elated to fly to cloud 9?

I feel ashamed that I got this gift and cannot enjoy it to it's fullest because it haunts me still.

Does this make any sense?

Kimberly

2

How beautiful to hit one year post MVD and be pain free! My MVD was a sucess for the large, sudden stabbing pains, I’m 6+ years out from that MVD date and still “listen” for the harsh pain. I attribute my reaction to PTSD. The trouble I continue to have was caused by 2 gamma knife surgeries prior to the MVD. So, on one hand I no longer have the type 1 pain, but I still have type 2 pain due to damaging the nerve.

With botox injections I get 4 out of 8 weeks of minor pain. I do rejoice, even though the pain will return. Debilitation sucks, so even though I have those weeks where I cry through the pain, inside I dance…I dance for the good times despite pain.

Dr Carson at Johns Hopkins told me that if I am pain free for 5 years, it should stick for life. I am holding out for your 5 year mark of pain free living. I’ll be dancing for you in anticipation of that day!

3

As someone who fought to save my life from Cancer I can tell you that we big up having a happy outcome where we dance on cloud nine. It does not really happen that way for many of us. There is a feeling of let down that there are no ticker tape parades for our battle. Then comes the acceptance and the realisation that most of life is mundane and we do take a lot for granted and mooch along when we should dance a little more.
I hope for eternal remission for you!

4

(((( Kim )))), it makes perfect sense!

What a beautifully written, honest sharing of your feelings, thank you.
I am sooooo super pleased for you for so many reasons,
1st pain free! Woohoo!
2nd a return to work that you are passionate about!
3rd Even 25% dancing is probably more than you did with TN : )

You are a very smart and super kind person who is very generous with your time on this forum.
The fact that you are able to be introspective and acknowledge your thoughts and feelings is huge! ( must be your background and strength of spirit)
Please don’t feel ashamed …I know for a fact that one does not go through TN and walk away unchanged. I understand about those friendships you mention, and also how your husband and son react, my family do the same.

I think it comes down to one day at a time, you DO appreciate where you are now compared to where you were…and maybe just maybe you need to find a way to celebrate ?!
Confetti you say? Maybe balloons, your fave restaurant? A party? Maybe a night out dancing?
Why can’t you mark the occasion? You can and should!
Find whats right for you.
Try journaling or meditating on allowing yourself to feel optimistic, start with small things, then just keep going …easier said than done.
A few years ago I started a gratitude journal, it was hard at first, but eventually it became increasingly easier to feel gratitude…I should really get back to it, thanks inadvertently for the reminder. Maybe this could work for you? I don’t know my friend.
Be gentle with yourself, I hope with time these feelings will lessen…and this wonderful remission of pain lasts & lasts !

5

PS. I forgot to say THANKYOU, thanks for staying and sharing on this forum and thanks for giving ME hope that maybe one day I too can return to work, and get back to life, have a successful MVD or two( bilateral tn) perhaps.

6

Hi Kimberly,

First off, I'm very happy for you that your pain is virtually gone, I hope it will stay like this forever. I think it's very hard if at all possible to forget the pain - as it's not just about our pain; the pain we experience leaves an emotional trace in our brain, it's like a long-term relationship gone wrong. In relation to my ATN I had a few panic attacks a while back, and I'll always remember how I felt during the attacks and prior to them, and I think I'll always watch out for signs of them coming back.

I'd also like to thank you for staying on this site and helping others, your example gives us hope.

Taka care,

Oldriska

7

This makes perfect sense! Yes, you have changed. Yes in such a short time. I felt as though I was reading about myself! I can feel your lonliness & dispare from with in. This is where I come also. For some peace & understanding. As life goes on, I am still in this ‘lull’ that I just can’t get out of. Thing is though, I just try keep it to myself, as I just don’t think anyone else understands how this invisible illness impacts us. Not just physically. But right to the very essence of who we are. I also have lost all my friends, because,I just did not return there calls etc. I was in my own world. The realm of TN. You know, I have PTSD too. I have just come to terms with the fact that I am grieving for the person I used to be. And I have not long realized that I will always have TN. A year after my surgery, I thought ‘Wow!’ I’m so excited, I’m all healed now. Then came the pain & another surgery : ( Its okay though, some times when I think I hate my life. My teenage daughter wil give me a kiss on the cheek & say

’ I love you mum ’ Now, I just accept that things have changed, in a big way. But With the support of y’all on this site. I can also support others, and it gives me a purpose. I’m terrified of the day my pain med stop working! I’m terrified of those lightning bolt shocks! Please don’t feel ashamed, because yes, it does still haunt you! How could it not! Try to be a little kinder to yourself. You are a beautifu caring member who helps many others. You are so intelligent & I admire you. Hugs Sally

8

Woo hoo! We are happy for you here! So try cheer up sweetie. Hugs & more hugs Sally

9

You ALL are so kind - and somebody "Gets It" !

I need one of you to reach out thru the computer and slap me (left cheek please!!)

Tell me to quit whining and feeling like this!

I think the chemically changed depressive brain did not bounce back with cognitive thinking == did not bounce back with enough dopamine and endorphins and other feelgood chemicals

I think I shall have my anti-depressant raised and see if my brain catches up to all the joy burried in there!

Its just that I still carry around the thought - Dr. Casey is gonna retire someday = and I've already resigned myself to knowing this is not a forever cure - and have picked a second runner up surgeon should another MVD come up...... I don't dwell on it but its still there --- the most hope I probably have is 15 years relief --- why don't I take that deadline and live it up in the interim??? This is what I would always tell others - damn!

Before this I was A GLASS HALF FULL person -- and I want it back!

I need to keep looking in thru the windsheild instead of the rearview mirror - cause i'm focusing on whats behind me - not the possibilities up ahead!

Thanks for all your support! I get sooooooo many little gifts here - you are all little twinkeling stars among the lightning strikes : )

10

Omg!! I just had a whining session the other day that included me saying
" I used to be a half glass kinda girl!!! What happened to that girl?? I don’t like this one !!!"

Only you know if it’s an increase of anti depressants you need OR just acceptance that the mental/emotional stuff we ALL are feeling/going through is perfectly normal, I think it takes time to heal…either way we are in this together to give support and receive it.

Xoxo

11

You support so many here and help us put so much you deserve our thoughts and empathy.




Kc Dancer Kc said:

You ALL are so kind - and somebody "Gets It" !

I need one of you to reach out thru the computer and slap me (left cheek please!!)

Tell me to quit whining and feeling like this!

I think the chemically changed depressive brain did not bounce back with cognitive thinking == did not bounce back with enough dopamine and endorphins and other feelgood chemicals

I think I shall have my anti-depressant raised and see if my brain catches up to all the joy burried in there!

Its just that I still carry around the thought - Dr. Casey is gonna retire someday = and I've already resigned myself to knowing this is not a forever cure - and have picked a second runner up surgeon should another MVD come up...... I don't dwell on it but its still there --- the most hope I probably have is 15 years relief --- why don't I take that deadline and live it up in the interim??? This is what I would always tell others - damn!

Before this I was A GLASS HALF FULL person -- and I want it back!

I need to keep looking in thru the windsheild instead of the rearview mirror - cause i'm focusing on whats behind me - not the possibilities up ahead!

Thanks for all your support! I get sooooooo many little gifts here - you are all little twinkeling stars among the lightning strikes : )

12

Thank you guys for the encouragement. I too have suffered with TN for the last 3 years. Earlier this year, i had the MVD surgery. Before the operation i was up to 1000 mg of Carbotrol. When i got out of the hospital and now i am down to 200 mg of Carbotrol I am not in any pain , per say. I still get twinges and sometimes when i am over tired and needing rest i have some sharp pains in my jaw. But as of yet, i have not experienced what i had in the past. My life has changed considerably, I don't socialize like i use to. I have 10 grandchildren that keep me young but i don't do as much as i would like to, for fear of getting into pain. Sometimes I feel like i am just waiting for the other shoe to drop, if you get my drift. I try to stay away from places with loud noises and i still protect my face. I live in Texas and the weather for the most part is hot and humid. When the barometric changes considerably, i feel it in my jaw. So i try to not get a cold or sinus infection as this makes it very uncomfortable. But all in all i am very grateful and happy that for now it seems to be under control. I pray that it stays this way forever. I don't know if it will but for now i will live one day at a time and try to keep on smiling. i really appreciate all of you and all of your struggles. Stay strong.