NeuroTalk Support Groups - Stimulation... PENS / SCS for face pain, AD , T.N.

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- - Stimulation... PENS / SCS for face pain, AD , T.N. (https://www.neurotalk.org/trigeminal-neuralgia/124048-stimulation-pens-scs-pain-ad.html)

:( Beth I am sorry help didnt come in time for the one you were trying to get it for. I can say I have been that low in the past . Do NOT hold yourself responsibled for another persons actions. I sometimes post in the sos forum here at neuro - (Survivors Of Suicide ...sos ) it is a great place to get or give support . I know how badly I feel when I am unable to help someone or when the PNS isnt working and they have it taken out . :( :hug::hug: I also know how it is to lose a friend when they chose to end living. :hug:

Beth you ran a support group I dont think I could or would want to do that . My thoughts well that is for an email lol. can I ask if you were a nurse or in the care giving field?? You seem up on that side of it too besides the support .

So I am getting the idea that when you have the PNS on that high setting the lead is close to skin and moves or gets bigger ? If so well , heck yes it probably need to be re positioned. and if possible secured to tissue . that isnt always possible tho mine isnt secured it is just scared over with tissue .

I think the Warrior you are the great doc you have and all of us here praying and sending positive energy to you things will keep going fairly smooth. Sad that your apt over 2 hrs and nothing good but also nothing bad... so came out even and that seems like a waste ..cept they got paid for the 2 hours .lol
Praying and sending good wishes for your apt for bump that it starts, goes, and end extra well.:)
Keep us updated and hope your have a good week...I put in my veg garden this weekend. :) and am into march madness .
PEACE
BMW
p.s. yes looking ..looking forwards . :D I LOVE your words at the end of your last post ;) t.y.

Quote:

Originally Posted by Burntmarshmallow (Post 662141)

I decided to start a tread here about this topic .
I have been contacted by quite a few others who are faced with this as an option , and I wish it were easier for them all to find some info about this.
I believe I am the first in the U.S.A. to try and then have permanent implant
of a PENS for face pain,T.N.(A.D.). I had my surgery in July 2002 . I have been and still very very happy with out any trouble with my PENS or the battery. I have read and been along side of so many others who have gone threw an MVD or Gamma and PENS or Pain Pump becomes the last option . Since getting my Stimulator I have tried to help others going threw the trail and implant of this type of Stimulator .

I want to go over the different names this type of stimulation is called.

It is called PENS which is Peripheral Electronic Nerve Stimulator

It is called SCS Spine Cord Stimulator

It is called a Neuro Stimulator

ALL OF THESE THINGS ARE THE SAME !!

It is NOT approved by the Gov yet for treatment of face pain. T.N or A.D. etc and is still considered experimental / off market use of SCS.
Which in part I think is why it is the last option. Maybe that will change . Maybe someday others wont have to claw their way threw so much pain so many meds and failed surgeries before they are offered to have a trail of the Stimulator.
The biggest best thing about SCS is you have a trail before you have the permanent implant surgery. You know if it is going work well , you know if the stim will help you as soon as you have the trial period. Most times you know right away as soon as it is turned on . Most others I have been in touch with shared they knew right away and cried a little . The first thing I dd was smile without so much pain.
You are awake during most of the surgery and it is a same day surgery also. Both for the trail and the permanent implant of the stim...go in and go home the same day. You are awake so you can help the Doctors know where the leads feel best and are helping the most .
For the trail there will be tiny wires coming out of you and they are taped tight to the skin and covered to avoid chance of infection. You also have a little battery which is in a small case like a cell phone case . You wear that either on your waist or sometimes others have said they had their battery pouch with band / belt/ under arm by bra line or upper chest. .A connecting wire or adapter connects the battery to the stim device or the leads if you will. Almost like plugging in to charge your cell phone. You cannot wash hair or get the area wet during this trial time. They turn the device on and show you how to handle the battery and such then you have your trial time with the stimulator. I find it seems to vary by the Docotrs and the reps of which ever maker of the stim is used. From 3 days up to 2 weeks.

I will share the makers I know of that make this device but I am sure they are a few others and new companies who make simulators that I have not mentioned too.

Medtronics ( I have Medtronics )
Biotronics
ANS by St Jude
Boston Scientific
-------

They place leads and need you awake to be able to tell them if and when you feel the stimulation. next thing you know you are out of surgery and on way home.
In most Cases YOU WILL KNOW RIGHT AWAY if the SCS/PENS is going to help. You Can feel it right away and within a few days the affects may improve to reach further in the painful area.
MY SCS is for my lower right trig nerve also called V-3 . So I only have 1 lead .
Others have leads to all V-1, V-2 , V-3 and yet others have Leads to both sides because they have bi-lat .
The SCS/PENS surgery is not evasive and not major surgery like an MVD or anything like that at all.
I wish Doctors would let others try this before sending them off to have a motor cortex or heck even before they do a 2ed or 3ed MVD. but I am not a pro I am just a normal T.N. person and Doctors I am sure have reasons for 2 and 3 and 4 MVDS Just Hurts me to hear after that many end up with A.D. :( .
I have AD I got from accident back in '99 I have steel plated on both sides of lower jaw and my lower right T.N nerve snapped and the plate is close to that area. I have had my SCS/PENS since July of 2002 .I have not any any issues , the lead has never broken ..it has slipped a teeny tiny bit but the scar tissue around the lead is and has been holding it steady. I have a battery that DOSE NOT recharge... now most are the smaller recharge type battery AND they use them almost always now. The SCS saved my life when nothing else could help...maybe it can help you too.

I will slowly add more but wanted to get this started and posted .
If I can help or anyone has questions please post , or let me know.
PEACE
BMW

Like you,went through hell. SCS worked from first trial. On my third machine now,the third is rechargeable from the main electrical system-interesting! I need new leads now-for some reason I've been waiting almost a year. My surgeries are paid for through private medical insurance. Where I live,this is the system I must use. Can be so unfair when one pays so much for insurance but still wait a year for relief! And drugs don't relieve the pain.
Take care,hope the system continues to work for you.

Frank nice to know you have had pain relief from the get go :D,
ugh I know I know the frustration of insurance companies and I am sorry you are having to wait so long for new leads . Can I ask where your leads are? how long you have had yours???? and what company? I am guessing medtronics ??

:(:( I have had mine for 10 years this july. I was not awear to the fact they might put a new PNS in or that one would need to have a new one?? do they wear out ???? I am sad and worried . I will need a new battery in a year or 2 sure ..But I didnt think theyd ever have to take out the other stuff and upgrade. I NEVER EVER want to up grade I dont see anything cool and hip with the newer recharge ones. seems like a pain with different programs, a paddle to charge it ever week or two and all that. ugh ugh I never want anything but what I have now
:(:(:( . I am going to think and wonder on this .I just am not liking the idea or thought of that . I am scared .
PEACE
BMW

Frank ...I found your posts in a couple other forum here at neuro here is one (you are the 3ed post down)
http://neurotalk.psychcentral.com/thread151022.html

I am understanding you have had yours for 7 years and are on your 3ed stim unit.. and are waiting for new leads for almost a year now so stim is off in that time ??? you probably have leads for your spine and not for face???? Is it Medtronic or Boston sci or St Jude ?????????

I got panicked All I could picture was the wire across my back getting ripped out for no reason and with no issues or trouble with my lead or my stim. . :eek: even so I am going to contact my stim company and see if they replace the whole stim unit even if there is no issue with the lead or the wire... ask if they just wear out... and if one is forced to upgrade.
I will feel better knowing the answer to that. and I will post the answer when I find out . sorry for my panic freak out. I do feel stupid for not knowing this :o but I dont know everything I dont even know half of everything lol
PEACE
BMW

I have my answer . after conversing with 2 people from my stim company
( other companies/makers may be different...) both a medtronic Rep and patients service agent told me No. the lead may migrate, move or it may wear out and they will replace that lead . the battery gets replaced like I knew already. So unless there is a problem or issue the whole stim wont wear out all at once and the wire going from my battery to my lead wont need any messing with..Unless I have trauma or accident that causes issues ...
I like that answer and hearing it 2 times from 2 different people is good.
okay I can get back to other things now. :grouphug:
PEACE
BMW

Told you that you were concerned about nothing,,,this is medicine, they do not do more than they have to!!,,no fair, more like if it ain't broke don't fix it,

No, I am not a nurse and do not come from (personally) a medical background. I began having medical problems in my early 20's and decided early on that if they could understand it so could I. So I learned and as well being military dependents in the era of "if the military had wanted you to have dependents they would have issued you them" I learned early that for my children to get the care that my husband was risking his life for I was going to have to be educated, and persistent. So that's what I did. In the long run it has paid off, especially after I got sick, things happen for a reason......even this.

I actually enjoyed very much running a support group the problem was people would come and want another answer to TN which we didn't have, no one did. So people came and went but in all we helped a number of people. We kept lists of medications what people had success with and not, side effects. Lists of good physicians in the area, so if you wanted a new neuro we had a list that other members had recommended, things like that. We had a phone chain going for a while and I think some real friendships were made but it's been a while......
I think I enjoyed it because it kept my mind off my own situation and I needed that.
I still take phone calls when people go to the TN website and can't get it touch with anyone local they just start dialing so I spoke with lots of folks that way......I may do it again, if I ever sell my house and move to Dayton where my husband is, it's been 2 years and even for us that's just too long,,,,,,

So to Frank,,,how the hell did you burn out three units?? what are you doing to them? I am fascinated one I can see as a bad unit but three wow!!! I'm impressed,,,and may I ask where do you live that they are making you wait this long for a replacement?? Prisoners get better treatment, that's cruel and unusual punishment,,,I've only had mine a few weeks and it does not cover all my pain but I can't see ever giving it back,,,,in fact,,I have permanent nerve damage in my leg and I am already considering having them put one in my back,,,and yes there are a few people who have two units, but not three,,I asked,,,,I wonder where??? well it's always nice to be the first at something!!!
Really Frank did they say it was something to do with you or the units....I'm still in wow factor, three units,,,,if you're comfortable give us a bit more info on that,,I'm enormously curious now.

Well, need to shove off, all I can say now is in your bedtime prayers add FDA approval this year...there are so many people that this could help...I thank God for giving me this blessing and I pray that this will become available to more and more people,,,quickly.
Nite to all, pleasant dreams and pain free nites,,,,

Well for those of you interested in these systems I am now having to charge my internal battery. It's not difficult just time consuming, I seem to need to charge once a week, which seems a little often to me but I'll find out when I go back into cleveland next week.

The first time I did it I was so scared I was going to mess it up and then I learned you can't screw it up. It's like charging a battery for an older Camcorder or something like that. One section plugs into the wall and that section plugs into the piece that you put over the internal battery and somewhere in that loop is a unit that tells you if you have a good connection or not and the better connection the faster it charges. It's really simple but I was so scared ,,,,I laugh when I think about it now.

This is the hardest part, you have to watch to make sure it doesn't get too low and I have a tendency to do just that, so I will probably be here for about 4-5 hours, but if I would do it once a week it would probably be like watching a movie or so. Just a few hours,,,,does anyone else charge theirs once a week?? I'd like to know what everyone else does...how much juice everyone uses,,,,and T how does this system relate to your T-Rex unit?? Just curious,,,actually bored. I could watch TV,watch netflix, finish a book I started or watch any of a dozen movies I have sitting next to me....and I'm bored....I think I'm spoiled.

But charging is as easy as that,,,this unit has really changed my life and I really hope they open this up insurance wise, for more TN patients,,,The final implant was end of January, It's now mid-March my pain is controllable, my meds are down, I'm driving, it really feels like this unit is giving me my life back....I hope those of you who have these units are getting good results and I hope these become an option for more people,,if I had a wish!!!

Well, I'm in for a long haul I'm going to take a nap,,,,,my best to all:)

What my mother taught me.....

Sorry havent posted lately on stimulators mind you I have a St Jude Unit my mother always taught me if you don't have anything nice to say then dont say anything at all...... Wishing everyone much success and low pain days!!!!!!!!!!!
Kat:confused:

Beth I have been thinking of you today and hope things went better then you expected with both the programming and the bump. :hug: . Did you have any issues flying?? most of us handle that okay. hoping to hear a good update from you soon. until then we are sending prayers and good energy nonstop. Thanks for the email chats listening to me vent. :hug:

Kwebster Okay lady stepping on big long shard of glass ouchie honey :( ..ironic it is your foot and you named your PNS Foot lose . :rolleyes: sending you a triple dose of healing energy and hugs .
KEEP THAT APT WITH DR.S. your neuro !!!! have journal and those other things we spoke of ready. Okay do NOT let your foot put this apt off. warrior time ... get your " B"in order shined up and B bring it ;) Love You Back!

Beth, Cheryl, Kwebster Thank You for helping a PNS sister who's on the sidelines . Kwebster It is a small world :) . Please keep sending the good thoughts and prayers for things to continue to be positive and all ...ALL her be issues worked out at a steady speedy pace .

May everyone in the forum here and all the poster, readers ,those on the sidelines and ones who lurk have a wonderful, secure, springtime filled with plenty of low pain good days.
PEACE
BMW