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Stimulation... PENS / SCS for face pain, AD , T.N.

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Old 06-13-2010, 05:17 PM   #21
Burntmarshmallow
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I guess I will call this -The other side - as I wish to bring up the worries warnings and situations I have found others in and what I have "seen"
( threw written word and phone not in person) what I have seen others have to go threw.


First I would say Big worry about Neuro Stim / PNS surgery is INFECTIONS

right after surgery at the implant sites where the leads and battery are, It is important to keep these areas clean covered and dry follow all instructions by the reps and your Doc. Also staying healthy and fending off the flu and cold any sinus infection is VERY important! I know of others who have gotten infection and it travels towards leads and such causing the whole Stim leads and all to be removed to prevent any further risk of health and also risk to the unit itself. after the infection was cleared up they have had re-implant of Neuro stim / PNS and are doing GREAT!

I have a friend who is awaiting her re implant and damn it is hard this waiting and this whole extra weight of the infection , Trust me if you can avoid it DO IT AT ALL COST. It is NOT Fun to go threw what I have seen others go threw.besides the pain this includes having IV feed anti biotic every few hours all day and night .Yet at same time it is so very awesome when at last the re-implant is a go and they find the light again get some of their life back.


Another Big worry / risk is lead migration or lead dislodgement .Just like it sounds the leads moving or slipping out of the placement area. .Most times they can go in and readjust the lead and secure them . other times this is not possible as doing this may cause more damage. It depends on the situation, the person and where the lead has been placed and where it migrated to. etc.
I myself now worry about tasers and such .not that I am in trouble or am in situation where I would get tased by anyone.. but it is just something I DO NOT want to happen.
I have no trouble flying I have a card that states I have a medical implanted device I show when I need to go threw metal decors and security. flying has never caused me any issues as far as pressure ..I have the normal ear pop thing but it is noting different then a normal person deals with chewing gum and yawning help. I take Aspirin as I do get head aches with pressure change from flying..driving in the mountains and always pressure change with the weather.
I dont like to be outside when lighting storms are passing but most of us have been taught by good ol mom not to play in thunder storms.lol

also I can NOT have an MRI

here are a couple other warning for the neuro stim/PNS That I got when I had my device implanted.


Warning -- Sources of strong electromagnetic interference (eg, defibrillation, diathermy, electrocautery, MRI, RF ablation, and therapeutic ultrasound) can interact with the neurostimulation system, resulting in serious patient injury or death. These and other sources of EMI can also result in system damage, operational changes to the neurostimulator or unexpected changes in stimulation. Rupture or piercing of the neurostimulator can result in severe burns. An implanted cardiac device (eg, pacemaker, defibrillator) may damage a neurostimulator, and the electrical pulses from the neurostimulator may result in an inappropriate response of the cardiac device.



. Patients should not scuba dive below 10 meters of water or enter hyperbaric chambers above 2.0 atmosphere absolute (ATA). Electromagnetic interference, postural changes, and other activities may cause shocking or jolting.



so these are some of the risks and worries or... "The other side of things" .

Every surgery has risks I wanted to mention some here because in reality it is not always lolly pops and sugar drops . some have had the trail and it didn't help them for what ever reason and while they are sitting there they have to look at me and others like me who have had success with this . I look back and will NEVER FORGET them I have to show both sides. because that is the way things really are. I myself have never had any issue with infection or any problem with my Neuro stim / PNS .

PEACE

BMW

Last edited by Burntmarshmallow; 06-13-2010 at 05:38 PM.
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Old 06-13-2010, 07:50 PM   #22
Burntmarshmallow
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Possibly a good idea to share some links so one can see what the neuro stim looks like I DO NOT PROMOTE ANY ONE COMPANY OVER ANOTHER !! Nor do I promote any Doctor over another ! tho I have some Doc's lower on the list

It is the general Idea of neruo stim / PNS that I am fan of. I hope to provide some info about it and also hope others will share and ask questions and for support .
PEACE
BMW
the links ----
Boston Scientific
http://www.bostonscientific-internat...vedForMedProfs

St Jude
http://www.sjmneuropro.com/Products/...PG-System.aspx
St Jude mini
http://www.sjmneuropro.com/Products/...PG-System.aspx

Medtronic

http://www.medtronic.com/your-health...ator/index.htm

Last edited by Burntmarshmallow; 06-13-2010 at 08:43 PM. Reason: fix the link
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Old 06-13-2010, 10:28 PM   #23
calewark
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Default Hello everyone

Quote:
Originally Posted by Burntmarshmallow View Post
Possibly a good idea to share some links so one can see what the neuro stim looks like I DO NOT PROMOTE ANY ONE COMPANY OVER ANOTHER !! Nor do I promote any Doctor over another ! tho I have some Doc's lower on the list

It is the general Idea of neruo stim / PNS that I am fan of. I hope to provide some info about it and also hope others will share and ask questions and for support .
PEACE
BMW
the links ----
Boston Scientific
http://www.bostonscientific-internat...vedForMedProfs

St Jude
http://www.sjmneuropro.com/Products/...PG-System.aspx
St Jude mini
http://www.sjmneuropro.com/Products/...PG-System.aspx

Medtronic

http://www.medtronic.com/your-health...ator/index.htm
Thought I would stop by and say hello. Tina is doing a great job of keeping you guys up to date with my journey through the stimulator. That is good as I have a difficult time concentrating due to this horrific burning pain. The inside and outside of my face is actually on fire. Can't wait for the surgery date for the stimulator. Boy, do I miss that thing. As much as I hated all the wires tugging on my face, the cables all getting tangled up, and always dropping the generator ( ouch ). So, to all you fine friends, have a good week and take care of your self.
Love to all,
Cheryl
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Old 06-13-2010, 10:55 PM   #24
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Default Hi Cheryl

Hello Cheryl! Glad you are feeling at least well enough to share an update! All hope and prayers that your date for permanent implant comes through soon! That burning fire is so difficult to bear. May yours be near to finished... forever... and may that perm implant do the job for you wonderfully!

ASAP,
Mark56
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Old 06-15-2010, 03:41 PM   #25
Burntmarshmallow
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As I "talk" with others and still others having trial for PNS/Neuro Stim and others awaiting Re-implant ...My info about the process and some worries and warnings may and probably will change. It is not my intent to mislead or have "the golden rules "sorta speak.
Please remember that mine was way back in 2002 and since then , the devices have gotten smaller and more advanced also too each Doctor and company have their own way of doing this . So please forgive if some contradiction come up..I guess that is what one might call advancement or higher tech..then when mine was done. THANK YOU for understanding .

Cheryl is having MRI today. She is claustrophobic and the worry of this has made her pain flare like an angry bull dog. Sending positive energy and calm thoughts to you Cheryl.
nothing much else just a whole bunch of waiting and praying but honestly .....too much waiting..
PEACE
BMW

edit to say wonder that I dont really care for the I thing and with out all of the Yous that have been there and here for me.. This thread would not be. It is not I that makes this thread it is WE .

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Old 06-15-2010, 11:29 PM   #26
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Default How Blessed We Are

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
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Old 06-17-2010, 12:56 PM   #27
calewark
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Confused Oh my

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


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Old 06-17-2010, 05:01 PM   #28
Burntmarshmallow
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Default how to find a Doctor info

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
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Old 06-17-2010, 07:35 PM   #29
calewark
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Default Name your stimulator

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
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Old 06-17-2010, 08:02 PM   #30
Burntmarshmallow
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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

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