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

Burntmarshmallow · 01-13-2012, 06:46 PM

I just want to say how angry I get when doing this thread here how much or maybe I should say how many, how often us T.N patents and also ones on this PNS thread are ill treated by by rude inconsiderate doc nurses receptionists etc... I know it is not a stranger to anyone who has to go to a doc or have surgery ..of any type. So that said and lived and being there as others are dealing with that. When it is you.. Please put your warrior on and nag call text ..be your own advocate. some people are just natural trying to please, help and be flexible with others and some afraid to rock the boat for fear the doc ,nurse recpt.. will make things "harder" . most of us just want to be understood how the pain is how it feels controls and enslaves us . wont drag on to long here but I want to tell anyone ,everyone that when you are dealing with this and knocked down

rest regroup and fight back .. . For You there is no better reason in the whole world to turn into a yelling persistant cranky stubborn person . It never hurts I.m.h.o. to to turn into mega " B "when one is fighting to get relief from this ugly pain when one is fighting to keep living... that is the best reason to turn into a cranky nagging persistent ...WARRIOR .
---------- -------- --------------
Beth We are keeping you in our prayers and thinking of you. You are having trial Next Thursday. I hope you will let us know how things go and let us know how you are. Sending you positive energy and blessings. May the trail prove to be extreamly helpful and lead to a smooth very successful final implant and a happy ending for pain relief and control

------------- ----------- ------------ ---------

Meshacat- How is your sister doing? I have email so may bug you for update or check as things get closer . are you going to be there when she has the trial surgery? sending blessings and prayers for you and your sister . May the next couple weeks pass quickly and your sister feel and be calm healthy safe and secure

---------- ------------ ------------- ---------
Kwebster your one heck of a warrior

now get some much earned rest and eat some food!! I love you

PEACE
BMW

BethO2L · 01-15-2012, 05:45 AM

Hey All,
Starting to get a bit anxious now as I had a bad time with my RF and this is similar, that twilight sleep,,I was awake through most of my RF because my IV backed up and nobody noticed until my hand was huge. This is one of those twilight procedures and I can't seem to shake that feeling,,,just being silly.

No, I don't have MS but have worked with many TN patients that do, have been a support group leader for ever and just try to keep moving and not let this slow me down too much. I take massive doses of meds which would be really nice to cut back on, I already have osteoporosis from high med use and even if I get 50% pain reduction that's a miracle, I can't even put my brain around it.

Did anyone have stitches after the permanent procedure? I have been so shocked that this is really happening that I forgot to ask,,I'll call the nurse on Monday, they have all been so nice and helpful it has made this so much easier on me.

I will be getting three leads, this guy likes to make sure he's got it covered! And all he has really advised is to not over due after the surgery until they leads have a chance to scar over which helps hold them in place.

I think you are right in some ways we are all guinea pigs, they just don't know enough about this disorder and until they really spend the bucks and do the research we are at the mercy of arrogant MD's who think they know more about our pain and what we are going through,,it's that simple. Although after doing some research there was an article in Technology Review ,,,,something like that and in another year the leads they will be using for this procedure will be so tiny,,it's amazing what they are doing in Biomedical Engineering,,by the time my battery runs out and needs replacing the system will be a dinosaur!!! but as long as it works,,I'm happy.

Will keep you posted as to my progress, my thanks to all who responded and my prayers to all those facing another day with this disorder.....God Bless hang in there, Beth

Frankie071 · 03-04-2012, 04:44 PM

Quote:

Originally Posted by Burntmarshmallow

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.

Burntmarshmallow · 03-05-2012, 06:03 PM

Frank nice to know you have had pain relief from the get go

,
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

Burntmarshmallow · 03-05-2012, 10:16 PM

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. .

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

but I dont know everything I dont even know half of everything lol
PEACE
BMW

Burntmarshmallow · 03-06-2012, 06:45 PM

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.

PEACE
BMW

BethO2L · 03-09-2012, 12:59 AM

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,,,,

parisathena · 08-29-2013, 04:49 PM

I have been looking for some time for a doctor who can do V1,V2,V3 and I would appreciate if you direct me to your doctor. By the way are you still happy with the PENS?

Thank you,
Bill from NY

Quote:

Originally Posted by Burntmarshmallow

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

leejcaroll · 09-01-2013, 05:45 PM

I had my first SCS in 1986. for trigeminal neuralgia, atypical TN, atypical acial pain and anaesthesia dolorosa.
It worked for about 85% of the pain. Unfortunately I lost it due to an unrelated infection. The next did not work at all and I also lost that to an unrelated infection.
Having no other options I had a sensory cortical stimulator implant placed in 1991. It was 100% experimental, only the 13th in world to have it.
All of the were covered by my insurance, medicare and blue cross and blue shield.
The last one helped more then I realized. It failed about a year ago and that allowed me to see how much better I had been doing with it working.
The are not sure why it failed. I apparently have had it on and working longer then anyone else on whom they have records.
I have been told that insurance companies are not willing any longer to pay motor cortical and brain implants because the studies do not back up the benefit.

CLTL · 09-02-2013, 12:38 PM

Quote:

Originally Posted by parisathena

I have been looking for some time for a doctor who can do V1,V2,V3 and I would appreciate if you direct me to your doctor. By the way are you still happy with the PENS?

Thank you,
Bill from NY

Hi Bill, I am new here but not to TN. I have heard of a very competent Dr from NY who has done many Stim implants successfully. I will try to find his name and get back to you. It may take a few days, however, because I am going out of town tomorrow evening to have my own Stim trial Weds. and I am swamped with stuff I have to do before leaving. I will get back to you in a few days. CLTL

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