MVD update (3 months post-op)

General General TN & GPN (Old Site)
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I can’t believe it’s been 3 months since my MVD…thought I would share a quick update…
The most important thing is that I remain TN pain free!

Sometimes I feel the twinges of the beginning of pain, no pain just a hint or maybe it’s a reminder that you never really escape TN all together. It’s enough to cause a little fear but never amounts to anything, Thank Goodness!

Because of my year long isolation my immune system is a little weak, I’ve had a 24 hr flu bug 2 weeks ago and am currently getting over a cold that has lasted over a week and sucked out what little energy I had to begin with.

I’m still very low energy, I really expected ( despite the flu and cold) that I would have more energy at this point, but not so. My doctors aren’t concerned and keep reminding me that it takes time to heal and build energy especially since my lifestyle was very sedentary due to TN the past year.
Fair enough, it’s just me really wanting to live again! And not being patient!

I attempted to wean a little more off my Tegretol this week, a half pill was suggested by my Neuro. I’ve been off the Dilantin and Baclofen since week 3.
Well, after 3 days the pain was present again, so I will not attempt weaning anymore, for a long time…it’s just too much.
The reality is I’m pain free at 1200mg Tegretol , I look at it this way;

I need 800mg for my right side and 400mg for my left MVD side.
That’s ok with me considering before MVD I had horrid pain 24/7 on my left side , on 3 meds at high doses and NO relief.
MVD was a success for me.

The short term part of recovery from mvd can be measured by hours awake,food eaten, incision healing, pain receding and meds tapered down. It’s more visible.
The long term part of healing is much harder to measure, it’s mostly invisible.
It’s the physical and emotional healing that takes place, weeks and months after the surgery recovery is done.
It’s the invisible part of healing.
The fatigue and low energy, incisional discomfort, pressure in the head, and the emotions that come to the surface now that the pain isn’t the constant focus.
I wasn’t prepared for that, took me a little by surprise.

Living with TN this past year changed my life …BUT I didn’t realize that it also changed me. So the emotional recovery is a bit more complicated .
The challenges are there a long time after the trauma.

All that being said, I am very grateful that my MVD surgery worked to take away the non-stop horrendous pain I suffered. My NS, Doctor and Neuro are also very pleased with how I’m doing. One day at a time, one foot in front of the other…

Would I go through MVD again? In a heartbeat!

Mimi xx

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Mimi- Thanks so much for sharing your MVD update. I sincerely hope each day brings you more emotional and physical relief. It is always inspiring to me to read what you write, especially with my MVD now 3 days away. I imagine the emotional healing is a challenge, after being focused on the severity of pain, constantly, for so long. Again, thank you for writing, and if you ever want to talk more I'm hoping to be home from the hospital by the end of the week. I can't tell you how much it helps to hear that you'd do it again!

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Thanks RueAnn, I would, the worst part of MVD for me was the anxiety beforehand…dealing with TN pain is far worse than anything I experienced in relation to the recovery of MVD.
Deep breath, and let go…I’ll be thinking of you!! Huge (((( hugs )))), Mimi xx

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ahhhh yes - our anxiety beforehand! That was tough!

I know you have been on a post-MVD roller coaster - hoping for more of you old self sooner --- I too had same issues --- you can tell by some of the crazy postings I made! You seem cool as a cucumber!

Do you have an outlet? Besides here?

Its like we've been to an invisible war - that nobody understood.

Go into combat one way - and come out the other end expecting the war is over - but unaware there are a few battles left to finish off!

Isn't it crazy after all this -- we would do it all again!?!?

One day at a time!

Kimberly

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Wow, you all seem so brave. I am glad to hear that you are doing well Mimi. It is inspiring to here of someone from the " otherside".

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Thanks Kim & Patty.
@Kim, it’s true, I didn’t expect my impatience nor the emotional stuff…but one day at a time is right. I need to be a little more relaxed with my expectations.

@Patty, how are you doing? Managing ok? You know if gets to be too much Dr.Ks office will schedule you sooner…im so glad Dr.K was my surgeon, I’ve had no adverse effects whatsoever, he’s very skilled and so highly regarded by his team and the nursing staff. You’ll be in great hands my friend! Trust that! I have no residual numbness or anything, I feel very lucky. When I think about how much pain I was in everyday for 8 months, and now pain free its surreal, I’m so grateful.

Mimi xx

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My pain has definiteky been increasing and i now have more pain days than goods a week. I tried increasing my meds but still could not handle it. My frustration is coming thru in ways like language and short temper. I am using words that have never been part of my language before. I do not like these changes in me. I HATE the weight gain and how I feel so i am terrified of the surgery. I am an old hat at abdominal sugeriesbut someone poking around in my head is quite different. Yikes Mimi, this was your forum and now I have added a rant. I am so sorry but do thank you for asking.

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I asked. And I completely understand !
The 6 months before my surgery I sounded more like a trucker! My choice of words was very colourful! I tried to avoid the language around my teen…although a few times I slipped and she would roll her eyes at me and say Mom, it’s ok, I know.
I hate the weight gain too…still struggling only because I’m not yet active…I just keep telling myself as soon as I’m active again it’ll all fall into place…I just need to be patient…of which I’m sure you can tell patience is NOT a virtue of mine. Lol
I was terrified too. Trust me. But I made sure to choose a neurosurgeon who knows his sh*t!
And you have chosen the same guy!!! I know you’ll do fine! ((( hugs ))) Mimi xx