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

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Old 11-18-2013, 01:17 PM   #381
mouselc
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Howdy,,,,
I have had my PNS system done in January at The Cleveland Clinic,, and I have a V3 lead.

Never had any problems with it and it was never even mentioned that the V3 lead might not work or break,,,not had any problems with it and recently had XRays done and nothing has moved and it is working properly,,,,,

I'm so glad that it continues to work well for you,,, I think that these systems will in time become more and more available to more TN patients and if done properly will become another tool to help control this difficult disorder,,,

Good luck with your system and I hope you continue to get good results with your system,,,,,
I am going to email you and get the name of the physician since so many people ask for the referral in Colorado,,,,

Thanks again and best wishes,,,,,Beth
Beth, Sent you a friend request. Interested to speak with you about Cleveland Clinic.
Cheryl had shared with me about Doctor in Co. but family support at low ebb and was unable to continue. I see you are in Illinois, I am located in Chicago. Would like to get in touch. Unable to post my email. Please acknowledge.
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Old 04-22-2015, 09:41 PM   #382
kwebster
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Heart Hey crowd!

Miss everyone here on this thread heres a shout out to all that helped me through my surgeries and how about a checkin from everyone and an update on their PNS!!!???!!!😍
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Old 04-23-2015, 01:04 PM   #383
Burntmarshmallow
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I can do update. Cheryl in Colorado recently had her PNS removed . I keep in touch with her and will aim her to this post. Beth has moved to another state . I hope to make contact again soon when she has settled and adjusts to the move . She has been doing pretty good when we last spoke. Myself and my PNS aka T Rex are fine. Kwebster why is angry face icon up.... Do tell . I miss this place but still lurk . Leaving positive energy low pain and PEACE. BMW
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Old 04-23-2015, 05:28 PM   #384
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I can do update. Cheryl in Colorado recently had her PNS removed . I keep in touch with her and will aim her to this post. Beth has moved to another state . I hope to make contact again soon when she has settled and adjusts to the move . She has been doing pretty good when we last spoke. Myself and my PNS aka T Rex are fine. Kwebster why is angry face icon up.... Do tell . I miss this place but still lurk . Leaving positive energy low pain and PEACE. BMW
thanks for update! Tried to change my angry face but couldnt figure out how lol just did a recent trip to Chicago to see Kevin Bacon to get footloose worked on... Im hanging loving Florida living for sure helps with TN pain, i did find out that our facial stim batteries should last alot longer than expected as facial patients run them lower frquency thought that was good news hope everyone will check in and get this post going so we can pass along help to anyone who needs it Love ys my tn sis be well
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Old 05-22-2015, 09:24 AM   #385
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I aimed a couple peeps here to update but they must still be "on the way ". Ill try again with direct link and if log in is forgotten the Mods here are very Top Notch at helping any and everyone with forgotten passwords or issues logging on and posting. Oh ... Happy Birthday to you Kwebster off to re aim some peeps to this thread for update. I can only hit target if the arrow wants to fly
low pain and Peace .
BMW
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Old 06-22-2015, 02:02 PM   #386
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I did my check ins on a few contacts. Cheryl has been doing a rough patch but I got her at a semi good part of the day today Time well spent and its always nice to chat for a few mins.I just got done texting with Beth who is busy times 10. doing good and still happy with the stim. I really want /hope a couple of yous come back here to up date because even thought i know how you are ... it would be very much of help to others who have this as an option. Yes Cheryl even if it has been removed ... this is first and foremost a forum for support and this thread a place with info and to show the good the bad and the support and help that should come from such "journey". . sending out low pain good energy
PEACE
BMW
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Old 06-24-2015, 12:49 PM   #387
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Hi to everyone!!
Most of you will not remember me ( or know me) but I have a long story which I will not bore you with. In short, I got TN in 2009. Doc did gamma knife. I should have done more research; but I was in too much pain. I have it in all 3 branches. The gamma gave me Anesthesia Dolorosa. In Jan. of 2010 I had MVD surgery. Took the attacks away; but the AD was still there. The AD was more than I could bare. I found a doc to put in a stimulator for it. A miracle...just can't find another word for it. It took 90% of the pain away.
Now for the bad news. As the years went by it seemed to work less. I would say about year 4 it was not as effective.....or I thought my pain was so much worse. Not sure?? At year 5 ( 6 years after I got TN) my TN attacks came back. Doc wanted a MRI to see how bad. No MRI with stim in!! It had been in for 5 years and just was not working as well so I thought I might as well have it out. My pain doc told me that they are great for about 5 years and then our bodies are so smart it knows a way around the problem. The AD is not so good without the stimulator; but my pain doc gave me lots more opiods and I get by.
I would encourage anyone who is thinking about getting a stimulator to get it as soon as you can. Even if it only lasts the 5 years and maybe yours would last longer. To get even the short amount of time was so wonderful. Like I said I have in all 3 branches. So many docs say they won't put it in if V3 is involved as it could break. That is not true. If they put a little slack in the wire ( just in that area ) it will not break.

If anyone is interested in talking about this ( or anything els ) please email me. I don't come to this site so I won't see a reply. Please email me at calewark@me.com.

Thanks for reading and I pray that all of you have some pain relief. Take good care of yourself. Your sister with TN also,
Cheryl
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Old 06-24-2015, 03:22 PM   #388
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Thank You T.N warrior . now off to nag Beth
Peace
BMW
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Old 08-27-2015, 10:30 AM   #389
BethO2L
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Thumbs up you old Nag

Nag, Nag, Nag

I'm Back....
Beth



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Thank You T.N warrior . now off to nag Beth
Peace
BMW
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Old 11-13-2015, 08:50 PM   #390
kwebster
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Confused Please allow me to VENT

As you all know I have a St Jude PNS system implanted December of 2011 It has been nothing short of an almost 4 year all out battle with the St Jude reps to get a decent programmer St Jude as a company has no empathy towards patients that pay close to 100,000 dollars for their units I had mine implanted 4 hours from home lived in the midwest have since moved to Florida in hopes warmer weather would help with pain, called St jude after trying 3 different programmers herein Florida one that threw my paddle down and said you dont like anything I do, called in the pain dr and I had to pay a 300.00 dr bill, as I am resistant to any of the pain meds nothing works for me but my stimulator however no one tells you how hard it is to get someone to program it St Jude reps are NOT experienced with FACIAL stims, gave up on Florida and have been flying back to Chicago, where my original programmer has been promoted and now cant see me and after many wasted trips mostly last trip October 28th gal I so ewhat liked didnt bother to tell me she was sick and sent another gal to meet me after flying all the way to Chicago, the gal didnt know where my leads were and decided it best to put me in a heap of pain then lower to set programs all she accomplished was to FLARE my nerve damage up to the point its unbearable
Reached out to my original programmer who said nothing he can do he working in 6 states and offered no help, so weigh in ya'll should I complain to surgeon about the rep treatment?...who do I cry out for help no one understands once the pain is down and it comes back it feels twice as bad I regret I have supported this system any meditronic people care to weigh in, im getting close to ending it I just cant take anymore PLEASE HELP
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