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

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Old 06-11-2010, 09:40 PM #1
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KIM Thank You .You did a perfect sharing.. posting of your story . . I so hard pray and hope the goodness you shared by doing this is returned to you and those you care for and love..returned 10 fold back onto and into your life .
I have others coming to share their PNS stories may be a bit of time but I am blessed you are the first one of my "old contacts" to respond. Thanks a zillion Kim.
Now get back to it and keep living your life. enjoy it and may it be blessed in many more ways then one.
PEACE
Tina
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Old 06-12-2010, 11:53 AM #2
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Default Thank you Kim
Hi Kim, and THANK YOU for joining in and posting your experience for others to read, learn, and shape their experiences. You blessed us all! Oh, and by the way, that is a vey nice photo of our state flower!

Wonderful days to you,
Mark56
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Old 06-12-2010, 05:03 PM #3
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Many have asked "well what kind of Doctor do I need to see???
so thought it good info to post .
For most of us who have PNS /Stimulator it has been our pain management Doctors that do this type of surgery for a.d. and face pain . I have medtroncs device ..To help others in the past I have called that company and they gave me a link of Doctors that do medtronics stimulators in each area of that certain state . From there I have to call each Doctor or pain clinic then one would have to get apt for consult and such on their end .
I am guessing that I could do that with each company biotronics, ANS by St Jude, Boston scientific etc . Others have gotten the recommendation and this option by their Neuro . For most of the ones I have had contact with it has been the Pain management Doc . You just need to find a pain management specialist or Doc that deals with stimulator / S.C.S each doctor usually has their own company they use Medtronics Ans. Boston scientific ..etc

You Need to Remember this type of implant PNS/ Neuro Stim... DOSE NOT MAKE YOU PAIN FREE!!!!
It just helps you control the horrible bad heavy pain. It knocks it down to a lower level one you can better handle and live a more productive less pain kind of day.
WE still have our pain!! And still have bad days . This stimulator just mixes the signal and kinda turns part of it to static before it races back to the brain to feed the pain monster.
Hope this helps

PEACE
BMW
Last edited by Burntmarshmallow; 06-12-2010 at 06:52 PM.
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Old 10-17-2011, 09:16 PM #4
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Quote:
Originally Posted by Burntmarshmallow View Post
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
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Old 10-18-2011, 05:58 AM #5
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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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Old 10-18-2011, 07:00 PM #6
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Default Had stim for face pain since 1986
This is my blog address where I have talked a little about it, and my struggles with tn, atn etc. Seems I have to post 2 more times to give you the full address. apainedlife.blogspot.com/2011/10/fear-and-hope.htm is my latest post.
I am having trouble with the stim so have fears about my appt tomorrow. That being said I also have had good success with them.
My book, a pained life, a chronic pain journey, ends with the first stimulator and my experience with it.
I lost 2 to infections, unrelated it appears to the stim itself, and am currently with one that is 100% experimental. I am finding, due to the problem, that it was helping me more than I had thght.
I also believe in these although everyone of course has to decide for themselves/in conjunctiion with your docs.
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Old 01-08-2012, 01:31 AM #7
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I am scheduled for this, the trial goes in on the 19th and the permanent on the 26th. I do have some advise. first it is still considered experimental but my MD says it should be approved by FDA this year for TN patients. Second, I know it sounds unrealistic but right now there are only a few hospitals and even fewer MD's that have done these, go to someone who has done it before, don't be your MD's guinea pig. I'm going to Cleveland Clinic, no I don't live in Cleveland or Ohio. I'm making the sacrifice, asking for help from family for mileage and hotel rooms. This is the guy who invented using it for TN, he's done a bunch. Third, if you go to someone like this less insurance fight. I saw him in November right after I left a weeks stay in the hospital for trying to control the pain from a flare up. He said, we will be doing this in January, I thought he was crazy, we are doing it in January. He had no doubt of the approval. On top of that I have medicare, no easy company to get approvals from. So do your homework, he said Colorado (I don't know exactly where), some in Chicago and Cleveland. That's it. Clearly other MD's are trying this even pain management Doc's are attempting to do them but be careful, you want the best outcome you can get....for your own health.
As for candidates, not every TN patient is going to be a good candidate. I had an MVD and an RF (radiofrequency rhizodomy) so most of the nerves in my face were burnt off in that. It helped but not enough, I still have one major nerve that was not killed off and have been battling the side effects from that for almost a decade. So if you get hit in lots of places when that "lightening bolt" slams you, this may not be the procedure for you. If you can narrow the pain down to one or two places you might be able to look at this (with FDA approval) sometime this year. I will be getting a rechargeable battery, can't wait to **** off TSA people at the airports! Once or twice a week you have to lay down and put the charger over your collarbone where the battery is placed underneath and let it charge up. No big deal.
As well, I don't understand why MD's are allowing people to do a Motor Cortex without attempting this unless it's because they want to start doing them. Surgeons want to do surgery and that sounds like a very cutting edge type to be doing. They are people too. Again, if you are looking at that type of procedure don't be a guinea pig!!! Go somewhere that does these on a regular basis. I think MCS offers TN patients something beyond an MVD which is still a good procedure but not for everyone.
I think this really opens up another option especially for MS patients with TN. We will have to wait and see.
So if you have any questions now that I can help answer, contact me. If not I will let you know the outcome in mid Feb, after I have had time to get adjusted to it. I have great confidence in the MD and that I am a good candidate for this, I'm not expecting miracles, just being positive. If I'm on the low side at 50% pain reduction I will be thrilled that's 50% less medication. If I get a better outcome it's just gravy...wish me luck. Beth
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Old 01-08-2012, 01:10 PM #8
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Hi Beth Glad you made your way and posted here . I agree there are states with better hosptials and docs that are known for this type of surgery. Colorado, Cal, Chicago, Cleveland , seems like sesame street ..brought to you by the letter the C . lol I think MD do motor cortex as it is recognized by the t.n.a. for option. UNLIKE this much more easy less evasive surgery. but PNS is getting there and it is much more heard of now then back when I had mine. Still not approved by the gov but you mentioned maybe this year.
kinda on a different page as far as being a lab rat and being the first one a doc dose a PNS surgery. I think as long as the MD has good history , and success of spine cord implants and knowledge of the Trig nerve ... go for it I will be there with you cus I was a lab rat and the first person for my MD to do PNS surgery and one of first in the USA. I think we ALL are lab rats. the more of us that can get marked relief and control over this the better.
Beth I am guessing St Jude if your going to Cleveland?? Do you have MS? I without a doubt am sending luck my prayers and wishes for you and this surgery the trail and final to be successful. I am in your corner all the way! I hope you keep us posted and let us know how you are .I / we are here for you for anything dont forget that !!Thanks for sharing . blessings to you and yours.
PEACE
BMW
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Old 01-09-2012, 10:39 PM #9
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Thanks for posting Beth wishing you good luck I traveled as well, and am 5 weeks postop with my St Jude Stim- keep us updated and will be praying for you!
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Old 01-11-2012, 07:11 AM #10
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Kwebster thinking of you and praying the apt goes well and the adjustments are long lasting... let me know how things go by email kkk
PEACE
BMW
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