12 months post-op MVD/ 1 year anniversary

General General TN & GPN (Old Site)
1

One year today since my MVD…
April 9th 2013 I had MVD for my progressive / med resistant TN on my left side…I’m bilateral but left side presented predominantly TN2 as it worsened it included TN1.
My right side remains quiet…
My entire journey to & through MVD is documented in the MVD group, including my surgical report, updates etc.

http://www.livingwithtn.org/group/mvds/forum/topics/my-experience-with-mvd

Currently I’m on 3 meds Tegretol CR, Dilantin & Keppra.
My pain worsened around 5 months post-op and has gradually declined since then.
Do I regret having MVD considering my outcome?
Absolutely not!!
Despite my current circumstances which are pretty reminiscent of pre-MVD, I am still better post MVD. Not much, but in the grand scheme of things it’s still better!
I’m unable to work, drive or function much due to high pain or high level of drugs…
BUT I still have a few hours here and there with minimal pain.
( pre MVD it was 24/7 non-stop)

Last week I had one whole day PAIN FREE!! It was amazing…I can tell you I went over every single thing I ate and did the day before to try and find the secret magical answer to that pain free day, to no avail…it was a gift. Last time that happened was probably August/September 2013.

I’m no Pollyanna, nor am I happy, happy joy joy every single minute of everyday.
To be honest I’ve really struggled emotionally. It’s been an incredibly rough ride…

I hate being so medicated…I hate that I am still isolated so much and restricted in my ability to function. My GP, my Neuro as well as my Neurosurgeon agree that any further procedures could actually worsen my TN.
I trust them and they have been very supportive and accepting of all the research I do on my own.
We’re still trying the “medication dance”, different ones, varying doses etc to hopefully find a balance…this in itself takes a lot out of me, currently taking a break from all that.

I’m losing my Neuro of many years :frowning: as he’s closing his practice, in August I will see a new one that I’ve met once before for a different issue a few years back.
I’m hoping he might bring a fresh perspective …

In the meantime, I’m not “woe is me-ing” as much and I’m exploring other holistic possibilities again…
I continue to use my daily meditation and Buddhist teachings to guide me and remind me how to get through each day, my faith in God, my husband and my children and my fur baby. ALL of these things give me reasons to hold onto HOPE.
Somedays the hope is barely visible through the relentless pain and med fog, but I try so very hard…I’m still learning the whole acceptance thing…but one moment at a time is what I can currently handle and that’s ok.

I’m continuously grateful for LwTN and the friends I have made here, please know that I try very hard to participate as much as I can… I continue to feel less alone because of our shared experiences, and for me there is some comfort in that.
As always… ((((( hugs )))))

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Oh honey..... we are young.... some new fangled med or procedure will develop in our lifetime!!!!

I just found my post - that at the one year mark - I still had pain, coming and going - I was so depressed,

BUT in the second year, it got better!

Anything is possible - I know this now.

I'm assuming you have researched/asked about PNS ???? There are good reviews here!

I'm glad you can pop in and out here when you can! You are such a valuable asset to this community!!!!!!!

Kimberly

3

I’m not discouraged KC, I was for a time…but my strong belief that an answer to my specific case of TN is out there, it has to be. : )
I have looked into PNS but none of my doctors seem to think it is a viable option for me. Perhaps the new Neuro will have a different view…we shall see.
I still get to see my “old” Neuro 2 more times before the new one, who knows what comes next, right now I’m taking a bit of a mental break on trying to find solutions .

Thanks for your continued friendship KC and all your support to everyone at LwTN!
You Rock! (( hugs )) M xx

4

We all love you and sure think of you very often. You are a very strong lady, we all have to be right! I hear ya there are those hopeless moments, but then you bounce back. So happy you had a pain free day, praying there are more to come very soon for you! I guess to distract me from TN pain I broke my foot last week :( It is kinda pitiful, but to give you a smile of a mental image, see me in a huge cast, crutches and still managing to push hubby in his wheelchair, lol, really! Hang in there Mimi, through it all you are always an inspiration and your honesty in sharing helps greatly. You are never alone :)

Hugs,

Betsy

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Awww, Betsy! What a way to get some distraction! Yikes…hope you’re managing ok…I’d smile at the image but it hurts…one of those days, can’t laugh, smile or cry for fear or pain. Bit of a low pressure system too…one of those days…never ceases to amaze me how quickly my mood can change…
I was so impressed with myself this morning just for taking a shower, drying my hair AND putting on clothes not just Jammies! Oh my, how life has changed…my husband is out of town too and my girls are working or in school, so I’ve spent way too much time being “lonely”/ alone. This is never good for me, but it is what it is…I’ll roll with it, in a few hours I’ll probably be in a different mind space…
Thanks for your note, (( hugs )) Mimi xx

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Hi Mimi,

I appreciate your honesty. I am almost seven months post MVD and am so sorry I had the surgery. Your candor has helped me stay focus and inspired. We have walked this together and will continue to do so. Perhaps KC Dancer has it right when she says the second yr post MVD could be better. All the best always. Hugs

7

Mimi you are such an amazing person and your comments and words have been such a source of comfort to me. I know you have had such a rough time and I pray it's only going to get better for you. Hang in there, anything is possible! hugs xx

8

Patty, I think of you often and wonder how you’re doing…we have walked this together and we certainly will continue!! Here’s to a hopeful 2nd year post-op!!! When you’re up to it, send me an update on how you’re doing…
(( hugs)) xx

Thank you Tamzee, you’re so sweet…we’re all in this together! It’s such a comfort to be able to feel connected to others, I swear it has been a huge part of my ability to get up each day…sharing our ups and downs and being able to relate to one another …I hope you are “well” I like what you said “Anything is possible”, (( hugs )) xx

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Mimi, I hope this is a better day for you! Being alone definitely always changed my mind set, when hubby was in the hospital so long there were so many lonely times, if it were not for the dogs, cats and neighbors I would have lost it for sure. There is comfort in our loved ones being near. Be good to yourself. No one tell the foot Dr, but somehow I have managed to still plant some flowers, gonna get back at it, trash bag on cast good to go as long as TN behaves! Up and down right now. Mimi, promise me you will just take care of you, if you need a shoulder mine is always here, you know that. We all care about you so very much. I hope your weather and your TN calm. We all have our days and our moments, I can say I have been a bit pissy this week, but just trying. You deserve a much needed break. Sending you a gentle hug and many prayers.

Betsy

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Betsy, not sure if the picture will show…but after a spring like week, my dog Roxy and I woke up to this…SNOW! Springtime in Canada! LoL
Today so far is good, thank you for asking, YOU go easy my friend! So jealous you can garden ! Last week as things melted, I longed to get into the garden to clean it up…by the end of May should be good at this rate!
I’m taking care of me, don’t you worry! It’s up and down as you say, and we just roll with it, one moment at a time… Husband comes home late tonight, so I’m looking forward to tomorrow! My youngest will be around for a bit this afternoon which will help break up the day…
Have a great weekend, Mimi xx
188-image.jpg (1.38 MB)

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Hi Mimi. have you been able to reduce your medication at all? It has been 7 months since my MVD, I have been able to

to cut my in half, which is effective about 70% of the time, I had a rough week however, and was interested when you said pain increased around 5 months. was that ongoing or for a period of time?

KC things improved in during the 2nd year post MVD for you?

Patty, Sorry to hear your MVD was unsuccessful

John

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Hi John,
Within a few days post MVD my NS had me on an aggressive weaning process off of my meds. Within a few weeks I was off 2/3 meds and had gotten down to 800mg Tegretol from 1600mg. 20 days after my MVD on my birthday, I had horrid TN shocks and pain, couldn’t talk, eat etc
I knew then that the TN wasn’t gone completely. ( pre MVD I knew the chances of that were slim due to the length of my journey with TN and the severity ) it wasn’t a complete surprise…I went In to my MVD hopeful for some relief and praying that the result would at least allow the TN to respond to meds.
I added one 200mg of Tegretol back and within 30 hrs the pain was minimized and eventually gone in a few days.
So I stayed at 1200mg Tegretol Pain free for 4 months, during month 4 I started feeling the odd “twinge” by month 5, I increased the Tegretol to 1400mg, and added low dose Baclofen.
By month 6, the medication dance continued and the pain was worsening…

Now at 12 mths post MVD, my pain is NOT controlled at all, if I’m honest it resembles pre-MVD but the difference is I get a few hours minimized pain.
I’m on 3 meds again and high doses, so I suffer with many side effects, exhaustion, hoarseness, no driving, etc etc ( the list is long)

I’m planning on weaning off of the latest med I gave a good go with Keppra, and seeing my Neuro this week to confirm, and I know he has one more med he wants me to try.
The weaning and adding of meds is a lengthy horrid process, but must be done to at least try…
I’m also looking into alternative / holistic again…I’ve tried before, but who knows…I have to keep trying.

In answer to your question for me, the pain increase has been ongoing…
Keep in mind I’ve had TN for 12 years, although I had a long remission, the damage continued and one possibility is that the damage caused might be irreversible on its own. Waiting on a cure …but I continue to try everything I can to in the meantime…
Wishing you well being John, I hope that bad week has gone and things are looking good again!
(( hugs )) Mimi

13

Mimi,

I am sorry the procedure provided limited benefit, It does not take long to damage the nerve, I only waited 2 years before my MVD, and my nerve is damaged. My surgeon scaled back my expectations prior to my surgery , and told me he would consider where I am now would be a success. I increase my meds during the rougher periods, but this last/current rough patch is lasting longer that it has before. Like everyone else, in the back of my mind I wonder if the relief I got from the MVD will be short lived. Have you tried the Gamma Knife procedure? or considered cutting the nerve?

John

Mimi said:

Hi John,
Within a few days post MVD my NS had me on an aggressive weaning process off of my meds. Within a few weeks I was off 2/3 meds and had gotten down to 800mg Tegretol from 1600mg. 20 days after my MVD on my birthday, I had horrid TN shocks and pain, couldn't talk, eat etc
I knew then that the TN wasn't gone completely. ( pre MVD I knew the chances of that were slim due to the length of my journey with TN and the severity ) it wasn't a complete surprise...I went In to my MVD hopeful for some relief and praying that the result would at least allow the TN to respond to meds.
I added one 200mg of Tegretol back and within 30 hrs the pain was minimized and eventually gone in a few days.
So I stayed at 1200mg Tegretol Pain free for 4 months, during month 4 I started feeling the odd "twinge" by month 5, I increased the Tegretol to 1400mg, and added low dose Baclofen.
By month 6, the medication dance continued and the pain was worsening...

Now at 12 mths post MVD, my pain is NOT controlled at all, if I'm honest it resembles pre-MVD but the difference is I get a few hours minimized pain.
I'm on 3 meds again and high doses, so I suffer with many side effects, exhaustion, hoarseness, no driving, etc etc ( the list is long)

I'm planning on weaning off of the latest med I gave a good go with Keppra, and seeing my Neuro this week to confirm, and I know he has one more med he wants me to try.
The weaning and adding of meds is a lengthy horrid process, but must be done to at least try....
I'm also looking into alternative / holistic again...I've tried before, but who knows...I have to keep trying.

In answer to your question for me, the pain increase has been ongoing...
Keep in mind I've had TN for 12 years, although I had a long remission, the damage continued and one possibility is that the damage caused might be irreversible on its own. Waiting on a cure ...but I continue to try everything I can to in the meantime....
Wishing you well being John, I hope that bad week has gone and things are looking good again!
(( hugs )) Mimi
14

Hi John, I know it’s hard when the pain intensifies not to be concerned, in my case it just kept worsening but many people who’ve had MVD experience periods of pain only for it to settle down again. There’s always hope!

Nope, I’ve never considered either procedure, of course I’ve researched them all but I refuse to do a procedure that further damages the nerve with limited results. Recently my Neuro & GP were wondering about Gamma Knife, but my Neurosurgeon has confirmed and informed them that in my case any further procedures could worsen my pain/ condition.
I’m not willing to risk that …it’s already so difficult as it is.
I’m focusing ( when I can ) on continued research, holistic and diet/foods that can perhaps help minimize the pain and lessen the meds.
If you haven’t had a chance yet John, read the update I posted from the Facial pain Research Foundation. Very informative!

I hope your pain settles down, do all you can to keep your mind positive!
We’re all so different, sometimes that’s frustrating but sometimes it can be a source of hope as “anything is possible” !!
Take care, Mimi

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So sorry for the horrific journey you are on Mimi.I can tell you are a wonderful caring person and i appreciate the work and support you give to the members here.

I think you should try the P stim.I don't think it can do any damage.I never recommend Gamma Knife,but it was a godsend for me.If my TN pain returns i'm sprinting straight to the PS.Looking back i believe the drugs are as bad as the disease.But it's all we have so there it is,a very poor situation.Dilantin is quite heavy,be careful with it.A shower was quite a good accomplishment for me at times.Teeth brushing a big bonus.I still face away from the shower head nearly a year since my pain ended.I guess i'm still damaged psychologically.Will say a prayer for you.Try to not worry.

16

Hi Don,
Thanks for your note! I’m so pleased your Gamma procedure continues to provide you with relief, I hope you share your positive experience with others who are contemplating this procedure!
You’re absolutely right, the drugs ARE as bad as the disease!
Prior to my TN worsening I had an aversion to meds for just that reason, I used to only take an Advil on occasion.
My doctors always encouraged weaning off the meds after 6-8 weeks pain free for just that reason!
Yes, I actually weaned down the Dilantin dose in Feb/March as I tried the Keppra. My goal as always been least amount of meds, with least amount if pain.
Saw my Neuro yesterday and we now have 2 plans “A” & “B”.
A; involves a quick removal of Keppra which has done nothing for me, adding a low dose of clonazepam and possibly increasing the Dilantin a little if needed.
B; involves stopping the clonazepam and adding a very low dose to start of Lamictal

In the meantime I’m also looking into the holistic options again, going to try an essential oil applied to the face that some with TN have found relief with over time. I’m also looking at diet triggers…( again )
It takes awhile to recover emotionally , I swear it’s like PTSD…
Continued well being Don, thanks again for your kind words!
(( hugs )) Mimi



Don said:

So sorry for the horrific journey you are on Mimi.I can tell you are a wonderful caring person and i appreciate the work and support you give to the members here.

I think you should try the P stim.I don't think it can do any damage.I never recommend Gamma Knife,but it was a godsend for me.If my TN pain returns i'm sprinting straight to the PS.Looking back i believe the drugs are as bad as the disease.But it's all we have so there it is,a very poor situation.Dilantin is quite heavy,be careful with it.A shower was quite a good accomplishment for me at times.Teeth brushing a big bonus.I still face away from the shower head nearly a year since my pain ended.I guess i'm still damaged psychologically.Will say a prayer for you.Try to not worry.

17

Hi Jamie,
Thank you for your note! It takes effort, but I swear reminding myself to be grateful daily ( even when I’m not feeling particularly grateful ) makes a huge difference…there’s always something to be grateful for.
I’ve learned a lot about myself through this experience, and I realized that I wasn’t allowing myself much time to address my emotions, anxieties etc I’d acknowledge them, but not really “deal” with them. So I’m working on that…
I believe in a cure…hope you are well!
(( hugs)) Mimi




Jamie said:

I am so glad you are doing better. I know you’re not pain free, but any reduction in pain is better than nothing at all. Keep the hope, faith, and optimism that you currently have! That alone will help in fighting the pain. Ive been in dark times throughout my pain journey too (hospitalization for pain/depression, panic attacks etc)

I tell myself daily to never give in to this pain and let it completely overtake my life like that again. Despite the pain, I have a wonderful life and I remind myself that “I am alive.” Things could be worse. :frowning: This site and the people are indeed a godsend. There will be a cure or therapy one day the more active and vocal we become.

Keep fighting the good fight…

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Mimi, let me start with how sorry I am that you are still having so much trouble from this beast in our heads. I am going to have my MVD in june and I am hoping for a positive outcome. Truth is, I am terrified of the whole thing. I really hate the thought that I will go through this and still have this pain and the meds in the end. I hate hate hate the drugs. I am a police officer and they cause me such trouble. They've even had me evaluated to see if I'm fit for duty, still waiting on that. Anyway, I just want to say how much you have lifted me up and given me hope that no matter what, I can live with this. It's been a real rough week this week, but I can do it. I believe that because of folks like you who have lived with this for so long. I'm only three years into my journey but I am ready to face whatever comes next...(MVD is next) ha...Thank you for all you do for all of us on this horrible ride

19

Houston Man, your note made me cry…such thoughtful, kind words, really appreciate it.
Honestly, I often hesitate to write about my experience because I don’t want MY journey through TN to influence anyone’s decisions negatively on their health choices. My situation is unique to me, and really in the grand scheme of things I’ve been very fortunate! Such a lengthy remission before all this madness…
MVD or any procedure is such a personal choice, and we all must decide what’s best for us individually.
I do not regret having MVD at all!!
My personal belief is that it’s the best currently offered procedure out there at this time IF you’re able to have it ( health or cost wise) …the research also shows that the sooner you’re able to do it the better the outcome especially if you have Classic TN1. The stats drop for TN2 but are still good. We just need to educate the Neurologists AND some Neurosurgeons about this.

Gosh, I was terrified too, I remember the day before my surgery my entire body was vibrating with anxiety, shaking from the inside out. Perfectly normal. The morning of my MVD, this sense of calmness came over me and I just released all that worry and fear and trusted this was where I needed to be…our mind is a powerful tool, it’s hard to be positive and hopeful with all we have to deal with but we must keep trying…doesn’t mean we don’t get angry, rage, cry, worry, want to give up in moments of extreme pain…we do.
But then we try and get through again, I used to say " one day at a time" I now say “One moment at a time”, it helps.

So many people have long term success with various procedures or low dose meds and function normally, but many don’t post on support boards…they move on. So we see a lot of TNrs with unmanaged pain.

I hope your “fit for duty” comes out in your favour, but if for some reason it doesn’t right now, won’t mean you’ll never be able to go back…remember that. Sometimes ‘things’ happen for a reason we don’t or can’t quite understand at the time…but they can be blessings in disguise.
Trust that things will work out positively …
Thanks again for your note, (( hugs )) Mimi

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Thanks for sharing where you are at now, Mimi. Despite things not working out as well as you'd have hoped, you remain positive and honest and brave...wonderful traits to have. I try and keep the same frame of mind as you, and it's not always easy, and I've learned to let myself get crabby and sad when I need to, as its the quickest way back to being cheerful again! "This too will pass", is my mantra. Hang out for the good moments, Mimi, I'm wishing you many more of them :-)