My sad post-MVD posting --I felt I WAS the great hope fairy here....RED/Jackie? Anyone?

General General TN & GPN (Old Site)
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I might have to give up my self-imposed title as the giver of hope.

Oct. 2010. TN1 started and got a diagnosis right away

One year spent trying lyrica - ending up on trileptal, using lidocaine patches and losing my mind. Lost my IQ and self esteem - all of it!

Was and still am Coming here every day for help / to help- even got on Ritalin to study up on MVDs.

Oct. 2011- MVD. No pain for 11 weeks! Crushed me when it came back! But I KNEW it takes one year to heal.

Jan. 2012-March 2012 was back on low dose trileptal - then TN pain gone away!!

I had 2 spots padded by world renowned Dr. Ken Casey :

- thought this would guarantee me at least 5-10 years of my real life. The odds were in my favor - statistically that is with :

TN1

early diagnosis

early MVD

Dr. Casey

.... with those 4 elements it doesn't get any better than that!

Now Feb. 2013--I am at month 16

On a scale of 1-100 I am devastated that after months of pain free life I'm developing pains from 5-10. I WAS the success story - I thought that operation bought me more time than this. Maybe nerve still healing?? - .

I know this little pain should not be depressing me as much as it is, most of you all deal with so much more pain like I DID. .. but PTSD is kicking in full throttle. I've had to grab my face in a breeze, stop talking, stop chewing....you know...

Will I be able to work?

Will my new marriage survive another bout of

no self esteem and no IQ?

I'm the optimist and think not on both counts.

How soon do you contemplate to have your head opened up again?

I'm really in shock, it's been THREE weeks of having just 2-3 little tiny itsy bitsy attacks....I hope I can get better and still give others hope. All I can think about is that it's going to get worse -- it has gone from a "1" to a "10" in three weeks (again out of 100).... but progressing. Every post of hope I have given in the last 2 weeks made me feel like a fake.

Anyone had anything like this back and forth after MVD? Now I'm looking for somebody who had this happen to them within months of MVD off and on again? Any long timers on here have heard of this?

COULD I wake up soon and it be gone again? You think I would know the answer to this - Iv'e litterally read thousands of posts....but we are all so different. Carly Simon...I Haven't Got Time For The Pain

On top of that since 2010 (the year of TN by the way)

I have seen drs./many many times about recurring salivary gland infections. Now they are looking to find an autoimmune disease -- will know Tues.

I don't want to hit the "Add Discussion" button below - that will seal the reality.

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KC

Oh my gosh, sweetie you’ve given so much hope to others and are NOT a fake. How could you even think that way. It is not that you had such great results from your MVD, but it is the caringwonderful informative posts that you give to everyone. Sorry I just wanted to set that straight.



I am sorry you are in a rough spot, it saddens me because you like everyone else deserve to be free of pain. Nobody really knows the answers as to how long the pain will stay how bad the pain might become or when it will leave. The pain could suddenly disappear tomorrow. What you shouldnt do is worry about being the great sucess MVD fairy. That’s possibly going to just act the tn up more. You have not let any of us down and are so great at helping others. So instead of the great MVD fairy I think you are the great you can do this information fairy on tn here.



I know somebody will have a better answer for you then me. But I just wanted to remind you to go easy on your self don’t beat your self up. I really do hope this is just a little pebble in the road for you KC, I’m so sorry the pain has come back even if its just a little. We are all here to be your shoulder to vent and cry to. You will be in my thoughts for the TN to go into remission.

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Hi there… I have had TN for 7 years, I finally had my MVD in November last year. I got pain back about 10 days after it, but I was told it was swollen still inside and give it some time. My pain went away… For about 7 weeks!! Then the pain started coming back… Only a few little pains to start off with, then it progressively has gotten worse. Still managing with no drugs - really don’t want to go back feeling like a zombie - I have 2 young children!! I saw my neurosurgeon last Tuesday (Charlie Teo - also one of the best in the world) & he’s devastated that the pain is back. He wants to go back in & fix it, but it’s only been about 3 months since I had the MVD, so it’s all still a little fresh in the memory for me to go back under the knife. I feel your pain, literally!! Not sure what stage I’ll get to before I will consider having another procedure, and if I do, will it work this time. We certainly have drawn the short straw on medical conditions!!

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THANKS! Kari your kind words just about brought me to tears... I have not needed encouragement from anyone on here for so long, it's strange but so nice to have! I haven't allowed myself to cry because I thought it might bring on more stress/pain because a lot of tears are behind that dam!

Aussie - you sent my mind right back into helping mode - (I'm a social worker so it kinda comes natural)

I cannot believe your top surgeon did not tell you that it takes up to a full year before the nerves heal...really! Ask him about that because that could give you some hope ...

you do mean just 3 months ago November, right? Or do you mean 2011?

The spooky part is that the day it "came back" I walked the dogs and "felt" that old breeze twinge. It was 70 degrees in January! Not even a cold breeze.

Then I went to the first local TNA support group meeting of the year. I always went to these meetings even while in remission, with husband, to give hope to others. I sat there and felt another twinge and thought I was hallucinating! Life is so odd!

Its weird because I feel more connected to the people on this site than the ones I see in real life with horrible TN! I guess because I pop on here daily and the "in person" meetings are only every other month.

I haven't even sent an email to Michigan to Dr. Casey yet....if that day comes it will be _________. I can't fill in the blank!

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KC, you are so incredibly gracious to all of those who you talk to, write to, encourage, and advise one way or another. You need to cut yourself some slack and let yourself feel some of those same same things-- especially now. Talk to Dr. Casey and don’t try to deal with this on your own. Yes you are strong and your breadth of knowledge about tn is immense and impressive but you lack the objectivity needed because it is about you. I know what you would say to someone else who had just written this-- please don’t let yourself give up hope! And take care because you are in my thoughts and prayers.

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So, our ray of sunshine, hope and love is having a rain shower. Who said we cannot empathize and love you back in the caring manner you have always treated everyone here?? Not me, and if you were writing this to "Joe Bloggs" you would say the same.

You don't feel this, but we owe you big time, massive time. anyone who hung around, gave hope to others when they were TN treated is a star. You owe no one a thing, you gave freely with care. Now we want to give back to you.

I cannot truly say that anyone has told me their pain has made an appearance then abated, and that may be because no one has told me! If a million people have MVD there will be a million outcomes.

Don't forget, giving posts of hope is not fake, it is love and care, give some back to YOU, you deserve it. I know you don't write much about hugs and cuddles, but all the same I am sending you a shed load. I think a good cry and hug with a friend would do you good.

I hope someone with experience I don't have, writes back with encouragement.


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I think I shall try to me more warm and fuzzy again here -- lately I've only given hard fast facts that I would have wanted the minute I got here. I again see now just how much warm and fuzzy can lighten a person's heart and that is just as important. TL, you are so right, my best friend (a young social worker) always says "how would you help a client with this problem"?

Jackie - thanks for your thoughts - I wish I could hear them with your accent, I bet it's "Brilliant" !! You always know what to say even if you don't have answers.

All you guys have kept me afloat this one night -- one night at a time is hard for a Capricorn!

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OMG I’m so sorry. Try not to panic. What did Dr Casey say? If I were you, I would stop the Ritalin. Consider Aricept or PS 100 in the natural food store instead. The PS 100 is made from a natural substance used in Europe for kids with ADD or older folks with Dementia. I take the PS 100 and it has helped my memory with these creepy drugs and has no side effects. Look it up on iherb.com and read the reviews.



I saw on some weird TV drama, so I have no idea if it is accurate, the bad guys gave some guy in pain in the hospital a stimulant to make his pain worse. ??



Prayers and good thoughts that this improves pronto!

I’m terrible at maneuvering this website, especially on My iPad. Please friend me, if that hasn’t been done already.

Be well…

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Oh my! KC Dancer, Reading this saddened me! I’m so sorry that you are experiencing pain again. I wish I could give you a hug!
I have not been to a local meeting. When and where is the next one?

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Well said Jackie!



Jackie said:

So, our ray of sunshine, hope and love is having a rain shower. Who said we cannot empathize and love you back in the caring manner you have always treated everyone here?? Not me, and if you were writing this to “Joe Bloggs” you would say the same.

You don’t feel this, but we owe you big time, massive time. anyone who hung around, gave hope to others when they were TN treated is a star. You owe no one a thing, you gave freely with care. Now we want to give back to you.

I cannot truly say that anyone has told me their pain has made an appearance then abated, and that may be because no one has told me! If a million people have MVD there will be a million outcomes.

Don’t forget, giving posts of hope is not fake, it is love and care, give some back to YOU, you deserve it. I know you don’t write much about hugs and cuddles, but all the same I am sending you a shed load. I think a good cry and hug with a friend would do you good.

I hope someone with experience I don’t have, writes back with encouragement.


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{{{{{ KC }}}}}
I’m so glad you hit “add discussion”.
Sometimes we forget that we have feelings too, worries, concerns and need support just as much as the newly diagnosed or someone who experiences more pain than us.
We’re human. I didn’t realize this until I posted my recent discussion and received all those kind replies…it was uplifting, and made me feel less alone in my pain.
Our TN pain is traumatic …this causes a form of PTSD.
It’s very real, and completely normal for us to become anxious of any new feelings of pain.

You are an incredibly strong, selfless giver of hope and advice,always giving of yourself to others here on the site. Now let us hold your hand awhile as you try to get through the days ahead…
Although I personally can’t answer your question, I do recall in all my readings of others who have had mvd and a return of pain a year or so later, that those where the pain returned slightly have added a low dose med to manage the pain which allowed them to function.

But as you know we’re all individual in our experiences, so I will encourage you to contact Dr. Casey with your concerns and seek his opinion. Ultimately you will decide what’s best for you in the days ahead. I hope these occurrences stop in their tracks and disappear as quickly as they came.
Positive thoughts girl! Don’t be so hard on yourself, although we can all relate to that concept, it can be easier said than done. Make more time for YOU, and know that we are here for you!!
Huge ((((( hugs ))))), Mimi xx

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:-( So sorry KC. I understand completely! Though I am NOT a post-MVD patient, I DO have days that my TN acts up and I get worried and depressed that it is coming back. Sometimes I have to do an increase of meds if it lasts too long and sometimes it just acts up for a few days and then settles back down. It's like an emotional roller coaster! I hope you get your answers Tuesday. Please keep us posted. Much love and (((((((((hugs)))))))))) to you!

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KC and Mimi, you dont know me but I like others know you both. Why? Because you are both our friend, always willing to share and encourage. Its now our time to be here for you both. KC write to Dr Casey and see what he says, its natural to fear the worse after being through so much,but often the worse never happens. xxxx

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Mimi - you are supposed to be resting! I've been mostly in bed for a month with the blues - hubby forces me to go dancing and to nice dinners when he can!

Donna - your words are uplifting and down to earth.... elstep I've seen your little face around here before! I will wait and see if it becomes a 20 (scale of 1-100) Then it will be time to email The Man!

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Elstep…I “know” you.
Because you too always visit support and encourage! <3

KC, I was resting! Today I feel good 2/10! First time I’ve felt this good in a long while…the sun is shining and I’m NOT thinking about pain, im enjoying dusting, laundry etc the little things…AND my oldest daughter is on her way home for a week from University, today!
Perfect timing, I will enjoy every moment!
Mimi xx

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Dancer, you asked for my input in a separate site email, so here are my thoughts.

(1) Among the 3,500+ patients I've talked with over the last 18 years, there have been a few in whom MVD at first produced total pain relief, then after a few weeks the pain seemed to be creeping back, and then after a few more months they were pain free again. It's not so much that the trigeminal nerve "heals", as that the nerve may settle down following surgical insult and physical manipulation of the nerve during the procedure.

(2) Although I've seen cases like (1), a more common outcome is that the pain creeps back in, gets worse over months and then requires either medication or a re-operation. I've talked with patients who got a second MVD a few months after the first, but most neurosurgeons will want you to wait for a year and go through extensive high resolution MRI imaging to see if there's any evidence that one of the teflon pads has shifted. Whether or not there's MRI evidence, most surgeons will e willing to do a second procedure and exploration. And some patients then have long term relief following MVD #2. There isn't a whole lot of data in medical literature that relates to second-time success.

(3) Apart from points above, I think you've got related issues of depression and anxiety that might benefit from supportive therapy, meditation (yes there is documented proof that meditation can help chronic pain sufferers), or rational behavior therapy. The latter is fairly often used in PTSD, and you've used the term -- with insight, I think, rather than in dark humor. In this situation, fear is not your friend. Anything you can do to control and shrug off fear, is likely to help your quality of life and may also actually reduce the pain itself.

Most fundamental advice, you've already got and I'll reinforce. Contact the surgeon who did your first MVD and tell them what you're going through. Let yourself be advised by what they say.

Go in Peace and Power

Red

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KC I've gotten into this discussion way after so many people and can't say anything any better then they have, but I want you to know I have so appreciated your encouragement when I needed it, Thank you, Now it's my turn, I too am here for you KC. I too am waiting for post MVD healing. I'm up....I'm down, good things happen, bad things happen. I wait for the pain everyday when I wake up. I to wait for the day when I wake up and it is gone.Now I look forward to the middle of day,,,no pain then. Pain in mornings and at night.

My point is like many have said we all have such different stories. You have had so many encouraging things to say.Trying to help someone else feel good on their bad days is not being a fake, it's being a friend. Again, thank you for being a friend. Now let us be yours. I too am giving you a big hug and telling you " I understand"

Linda

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I am new here, but I appreciate you coming on and sharing your *real* experience.

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Being honest with your reality today does not mean you were a fake in previous days. I didnot know they handed out Superman capes with the MVD surgery. You are human and the honesty you shared with every post is what we love. I am so sorry that you are experiencing pain/twinges once again. I appreciate you making yourself vulnerable. If you can’t be honest and real on this site then where can you. Please continue to be real with us. Sending prayers, positive thoughts and hugs to you.

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KC, KC, KC, as I'm saying this I;m shaking my head, not because anyone on here feels you are a fake or even anything remotely like that but because you have ,as others have said, given so much advice, words of encouragement and strength to others when they have needed it and now it's your turn to need a little something back from others. This condition is like a 'push me pull me' thing, we never know where or when it's gonna strike! As you lnow i had my MVD in Oct '12 and initially the pain worsened and I thought it hadn't worked, then in Jan it seemed to settle and then it disappeared so I reduced my meds and felt that I wouldn't need the MVD on the other side but after a few days of reducing the meds the pain started to creepback, some days it's really bad and other days it's not so bad. I even went to the dentist hoping it was my teeth playing up, but NO, gums and teeth totally healthy, not the news I wanted to hear! So far i have refused to increase my meds again, as like yourself, I'm sick of feeling like a Zombie etc, so I'm trying very hard to 'just' manage it!

Your words to me 'that it takes up to a year to heal following an MVD' does ring through my mind a lot and to hear that you are now having pains again after 16 months, does, in no way whatsoever, make me think that you are fake. I have read so much that the MVD's may work, may not work may give us pain free periods for months, years and in some cases forever, like many people I wish I/we were in the later catergory but I'm not convinced that I'm going to be but at the moment.I'm taking one day at a time.

Like yourself, I am/was a social worker (until losing my job through this condition) and you're right, our instinct is to want to help/support others, not the other way around, but remember you are also human, one with your own needs and feelings and at times, yes, we need that same support from others and to be able to accept it graciously........I know that's something that doesn't come easy to us but without it we are allowing to let this condition distroy all in what we preach and believe in! (maybe I should listen to myself a little more too ha ha!)

We are all here for you in both the good times and the bad times to listen to support/advice and to give support/ advice and to learn from individual experiences which, as you know from all the posts you have read, can change on a daily basis!

Please don't suffer in silence and as the others have said contact Dr Casey for his opinion on this!

Take care and keepus informed

Mandy : ) xxx