You see, BMW, we are Blessed, all are Blessed according to the sharing, the caring, the uplifiting spirit of this very special place. Blessed. You bring reality to the masses who need to know the truth of alternatives to pain management. For your willingness I am ever grateful. You have been among ALL who reach out to give. You are a giver, and in this we all are blessed. Now to follow examples of giving we know in truth and urging hope as well brings us to a good venue of comfort.

Perhaps we may all reach a bit more wholeness as we journey on this path seeking one therapy or another. None ever know whether success will be the reward at path's end until finally it is reached, and funny thing, the path never does seem to end, does it? There are those in these threads who experience frustration, joy, hope, dissappointment, and more, but we push on. Helping one another as you wisely pointed out, WE become givers of all of this together. Thus is the experience of NeuroTalk enhanced, the coming more richly rewarding. I am glad You and All together form the We who are NeuroTalk. This is one of those rewards on the life path.

I pray Calewark did well in her MRI today. I knew not it was occurring, and will send her a hug. Truly, I hope for her there is light in the form of permission to proceed with permanent solutions for her pain profile as this testing and the results of the Trial are reviewed. She has been waiting as have I for that call to come for another surgery date. I pray it is soon.

These are my prayers of hope and gratitude for the whole of us,
Mark56

I can't explain how bad the pain is today. I have done nothing different to make it worse (at least I don't think I have).
All I can say is that I was counting the days to the final implant and now I am counting minutes. Not good. I am sure we are looking at another 3 weeks or more. Each time the phone rings I say " oh Jesus, make it be them"

Then the caller hears disappointment in my voice.
I had my MRI on Tuesday . We did it as I can't have another one with leads in my face. With the help of a lot of Xanax, I slept thru it.

Tomorrow is my teeth cleaning day. Oh the fear of cleaning the teeth on the right side about sends me into total despair. But I will get through this too.

As you can tell, today is a bad day. Time to get off of this couch and do something to get my mind off the pain. Usually works pretty well.
How about writing a poem:

Oh stimulator,oh stimulator
Where are you today?
Are you in the warehouse?
Is my name on it for now?
Maybe you are in the lab
Glad to be charged up
Are you dreaming of the day
That you will have your new home?
My body is warmer
Than that cold shelf you sit on now
So do what you can do
To get the show on the road.
I am waiting anxiously to meet you soon
Until then, we have to communicate by email.
Oh stimulator, goodbye for now.


That was really goofy. Oh well, was entertaining. Talk to all of you soon

Love
ASAP,
Cheryl


.

We wanted to add some links in hopes this may help others find a Doctor in this area of surgery . Not sure if there is any top doctor that deals with just PNS OR Face Pain Stimulation only. I think most also do SCS and Neuro Stims for backs neck and other areas. It would be wise to ask this when contacting your pain management specialist , or Doctor. At least if they have knowledge of T.N , Neuro Stim for face pain etc....

http://www.poweroveryourpain.com/sb/pain_specialist

http://www.mymedpages.com/pf/search.do

Peace
BMW

My vote for Mark's stimulator is "sitting bull".
Mark sits on him
The bull is strong
The bull is aggressive
The bull does not sit around

Do you have ideas to give Mark's stimulator a name?

I need a name too!!!

Asap
Cheryl

Cheryl... I made a thread down below (not up top in the stickies info ) for side chat as we wait ..go check it out it has your name in the title....

I just sent you link to bring you to the T.N. forum in case you are using a link that bring you direct to this thread okay... check you email or just scroll to very top of this page and click on where it says.
Trigeminal Neuralgia
PEACE
BMW

Sending you big ((((HUGS)))), prayers, and anything else I can dig out of the bottom of my soul !!!

BTW, your poem is NOT 'goofy'!! it brougt a tear to my eye!!


We're all here with/for you girl!!
Rae

You are so sweet. Thank you for liking it. I have never,ever tried to write a poem or anything like it. I thought everything had to rhyme. I could not find the right words...so just wrote it thru all the pain. I am going to try another one tomorrow. Have to do something while I wait. Take care of yourself

Cheryl and ( stimulator.. Name to be announced soon)

Thanks Mother Hen for setting me straight. I guess I was going through the back door.maybe we should call your stimulator Mother Hen of all AD'ers. But group leader sounds a lot better. Hope you have a cooler day tomorrow. I am going to dentist. I would rather put a sharp stick in my good eye then go to dentist. Watch for my daily poem.

Cheryl and (stimulator , to be announced soon)

GEE I am not a mother hen or a group leader I am just helping ...we are all in this together !!

T-REX it is.
WE hope you get your date next week !!!!!!!!!!!!

I was adamant when I sat down to read these replies, that I was going to read them all. Alas, meds for atypical TN pretty much denied me that right for now.
To recap about me: I had my MVD Sept.28, 2011 for right sided TN. At my earlier appointment on Sept. 8, 2011 the regular surgeon was running behind and I had seen a resident. The resident told me I had typical TN and was about to just schedule me for the MVD when we caught the surgeon in the hallway. We all went into a different room and the surgeon assumed I had typical TN as well and scheduled all the pre-op testing and surgery date.

Come the morning of my surgery, and having had already been hooked to my IV's, the surgeon asked me what my symptoms were. I told him "the same as they were just weeks ago when I seen the resident." The surgeon looked at me as though I had grown ten heads and said "that isn't typical, that is atypical and I don't know if I can cure you now." I knew NOTHING of the risks. Although I signed a consent as we all did, my surgeon stated over and over that an MVD ONLY caused hearing loss on the side performed, and perhaps some facial numbness that WILL go away. I believed him. He even told me to not worry about what was on the consent form, as it was "the same consent wording even used for anesthesia, etc."

I went through with the surgery when the surgeon told me that if I did not have it done, one day I would have an atypical attack and it wouldn't leave. Further, he said that I would be stuck like that and he would not be able to help me.

Although I had complications ( stroke) from the MVD, I was fine pain wise, albeit numb, until November when things got out of hand. At the very end of November, I began complaining that my MOUTH hurt. The pain dissolved and I made it clear through almost the end of December with no pain. I still had numbness. Come the third week of December, the tip of my tongue had gone numb with pain, the inside of my right cheek, right bottom teeth, right gums, right palate... all numb with pain.

To make a long story even shorter, I experienced all sorts of different sensations at the same time enough that I can describe it this way: It feels like I was just punched in the mouth 20 times, sent to a dentist for busted teeth who injected me 20 times with novacaine, and somewhere along the course of the ride home, I decided eating fire ants for lunch would be a great idea. Oh, and I'm pretty sure my lower lip is hoisting around a bowling ball at various times.

Since December, I have been numb with pain. By February, in a last ditch effort to NOT end my life, I went to a pain clinic. Let me just say that I love my pain doc, but he is generally an idiot when it comes to TN and it shows. He had loaded me up with enough medication that I have finally begun throwing up due to them. I can no longer tolerate the side effects, and to add insult to misery- they really don't work.

The numbness HAS gotten better. The numbness used to be that falling asleep/waking up sensation you get in perhaps an arm after you have slept on it. However, what was numb just now feels kind of dead. My pain DOES wax and wane, as well as the numbness. Because of this, my pain doc feels assured that this is not AD but yet "one big trigeminal attack" or an overstretch injury given during surgery. "ONE BIG TRIGEMINAL ATTACK" my rear end!!! This pain is FAR, far, far worse than my ATN could have ever even though about becoming. I would LOVE to have my ATN back if it would rid me of this constant waxing and waning mouth pain.

Now, I have heard from others that if it is AD, it does NOT wax and wane. Does it? I'm conflicted and don't know what to think there.

In any event, I ended up numb with pain. That pretty much fits the bill of AD right there and as we all know, that bill just keeps growing.

There are days that I can just skim by without much pain at all. Usually, after I eat, I am just all sorts of doomed. Keep in mind though that there ARE parts of mouth that are still waking up. Just as far as a month and a half ago, my teeth finally woke up. I can now feel gum when I chew, but chewing hurts. The irony...

I am not a year post surgery. That is coming up sooner. This pain has colored my world, my sons world, and my amazing boyfriend's world. I don't know how I would have held on without him.

The last past few days, I have had that same old relentless constant pain. I could have chewed my entire bottle of oxy, and I am pretty sure I would still be in pain. To add to that, I am taking 2400 mg of neurontin, 20 of baclofen, 100 of zoloft, and 10 mg of oxy every six hours. I apply countless herbs, do mirror therapy, occassionally chew on a chewing ring ( dont giggle) and do everything imaginable to rid my pain to no avail. I actually look forward to sleeping, just because I know that i won't have pain when I sleep and that when I wake... the pain won't be there hardly at all. ( it increases during the pain).

To top it all off, I now get shoots of nerve pain and shocks of nerve pain along my lower jaw and up into my teeth. I don't know if that is low grade TN starting out again or my nerves saying they are REALLY really trying.

I have pernicous anemia and take b12 shots. That REALLY does help. They also just found me to be Vitamin D deficient and I recently began taking those as well.

What would you all do? Look into the PENS NOW or give yourself more time to heal. And please be honest with me: have you ever heard anyone who had an MVD, felt fine at first, then developed symptoms only for it to NOT be AD?

I want my life back. I want my sons life back. I want my boyfriends/to be husbands life back. I want OUR life back.

My 7th facial nerve got paralyzed during surgery and my physical therapist decided to use direct current facial stim on me at my docs request. THAT was the first thing that REALLY really worked for me. Just one stim session for 15 minutes can get me out of pain for 4 days.

Did anyone ever hear of "One big TN attack???" Really now? For months on end with no relief at all?

I/We are at our witts end.
Any opionions and/or help would be so appreciated!
Audarah