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

EE03 · 06-16-2011, 10:37 PM

I wasn't aware of all this. I'm just sending you some major hugs.

Mark56 · 06-25-2011, 09:54 AM

Lily-

Prayin for you even so the more. With it out, I hope your warrior spirit is strengthened to live beyond this setback and that you are propelled forward into a better place to manage pain.

Yes, I am sad the device did not work right for you, and yet, you are still placing one foot in front of the other and TRYING, continuing to fight the fight.

Alongside you here with prayers, hope,

ZZZ
Mark56

Burntmarshmallow · 06-29-2011, 07:37 AM

It was nice to have a phone chat with you lily.I am glad the unit is out and your on way to healing YET AGAIN ...

. also great to hear you laugh sorry my cat makes very loud meows. just want to post you an endless wave of positive healing energy your way in that the head pain the puffy swelling disappears quick and your feeling better. remember ween off that med and let the new med take up the slack..and rest breaks..take them you earned them warrior no doubt so make sure you take them kkk.

ThankYou for being you !

Yes you rock my t.n. warrior.
PEACE
BMW

Mylastnerve · 07-05-2011, 03:33 PM

Thanks everyone for your generous support. I guess this is where I say goodbye to this thread and start hanging out below again.
Much love, and Tina, a special thank you for keeping my spirits up even when I was having a bum day. You are an amazing and awesome person

Lily

ttata · 09-05-2011, 07:36 PM

I'm trying to find someone to contact me directly to talk about your experience with the stimulators. I had TMJ prosthesis surgery 2 years ago and doctors have been confused if I have atypical trigeminal neuralgia or atypical trigeminal neuropathy. Is there a difference in treatment options? I've tried opioids, Cymbalta, Lyrica, Neurontin, Elavil, Methadone, radiofrequency ablations, etc. My pain is in every tooth, all gums, palate, lips, chin. I cannot "chew" anymore due to pain, wind blowing on my face triggers pain, and it's a cold burning sensation 24/7. I'm never without it unless asleep with the help of meds. Life is hardly worth living like this. I feel like such a burden to others. Can someone who has had a successful experience contact me (Burntmarshmallow and others) to tell me which doctors are good, etc? I am considering going to Mayo Clinic for a consultation. Should I go there first? I've been all over Georgia (pain mgmt, neurologist, neurosurgeons and one doc at Emory is doing research on these implanted stimulators in the neurosurgery department). I'm scared to do it. He said they'd puncture wires through my cheeks, run them behind my ears to my front bra strap areas to implant the batteries there. I'm hypersensitive to metals and a little worried this could be a problem. Who are some experienced physicians with this type of surgery? Any other comments? How do I contact Burntmarshmallow or some of the others who have had a trial or implantation? I've never used this site before and it's not as easy to write someone as it is to just post something. I hope someone can write me, then! Looking forward to hearing from you SOON! Thank you!

Quote:

Originally Posted by Burntmarshmallow

I am adding some pictures of where Cheryl trail leads were.
She had one to the upper V-1 and then
one lead for V-2 and then
the 3ed lead to V-3 (lower) like I have .
They are out now ,the trail was very successful
So together we wait Like Mark for the permanent implant date. waiting waiting
Thank You for sharing and helping others the way you are Cheryl.

PEACE
BMW

Burntmarshmallow · 09-06-2011, 01:44 PM

I am here . I will message you with my info so maybe we can talk on phone. or at least email... please check your profile page I posted to you there ...

To all the rest of yous....I am sorry I have not been around much I had some teeth issues and after working myself into being brave... last week had oral surgery to have teeth removed on my bad side where the stim wire and lead are located. I was told by my new neuro that I do not have t.n. I have r.s.d . I am very confused and posting in here now makes me feel like a fake phony liar. but the last 6 years I honestly thought and believed I had a type of t.n called anesthesia dolorosa as my first neuro doc told me and wrote in my med files...I still think that .I always thought r.s.d. is lower area legs and arms not one area on the face. So I am confused and just lurking. In my heart all I ever wanted was to help support others. now I feel like a liar . I am sorry I am confused even tho the new neuro and my oral surgeon tell me I have rsd... I just do not know what to say now or if I believe them. thanks for understanding and forgiving me for possibly posting in the wrong forum...I just do not know??

PEACE
BMW

p.s. I do know my stim works better then any med be it I have R.S.D OR T.N. the stim works for me since July of 2002 with no issues .

Mark56 · 09-07-2011, 11:07 PM

This is a safe place of open honest sharing of realities we who have had stim therapy through Trial and then Permanent Implant both the beneficial and the times when the stim has not been an effective treatment. Burntmarshmallow alias BMW and Tina is one of the most caring open and vocal of those who share in this area of PENS, TN and face pain. I am glad she is hooking up with you as she will bring to light her impressions, experiences, and the possible questions you want to pose to your doc for response and encouragement.

Now as to BMW......... Tina, you are being way too hard on yourself. Your sincerity here is beyond rapproach. So what if one doctor has an impression different from another, such an expression truly does not make you out to be a LIAR!! Golly gee whiz, you had been diagnosed by a prior physician as having the syndrome you understood to be your situation. PLEASE, please do not let this place you into a situation of feeling recrimination. In my mind's eye you are solid, and I appreciate your work on this thread.

Caring loads,
Mark56

Burntmarshmallow · 09-28-2011, 10:47 PM

ttata I am still here if you need anything I have not gotten a reply from you at all so I hope things are okay. I am sorry i didnt reply to you sooner on here.

kwebster · 10-17-2011, 09:16 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

I need your help I am getting ready to have this surgery in Chicago, 4 1/2 hours away, I have trigeminal neuropathy and I am at the end of my rope I hope you get this and respond to me I am at my end of the rope with no knot on the end
Thank you
Kathy

Burntmarshmallow · 10-18-2011, 05:58 AM

I am here and want to help as much as I can. I have to work today but will check this again when I am home... I am on east coast of florida we are to get a big tropical storm today into tomorrow so if the power stays on I will be on here and hope you see this reply. you can post here or message me either way I hope we can catch eachother.
PEACE
BMW...Tina

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