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06-11-2010, 04:31 PM | #1 | |||
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Grand Magnate
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Kim, you are amazing! This testimony is so insightful and inspiring! I wish I could jump thru this screen and hug you! Please know how appreciated you are!! Thank you for sharing this with this wonderful community! This world needs more people like you! People REALLY NEED to hear these testimonies that come straight from the patients! A person can do all the searching on the web they want, but nothing compares to a heartfelt post such as this! God Bless You! Rae |
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06-11-2010, 09:40 PM | #2 | |||
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Grand Magnate
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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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06-12-2010, 11:53 AM | #3 | |||
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Grand Magnate
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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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"Thanks for this!" says: | Rrae (06-12-2010) |
06-12-2010, 05:03 PM | #4 | |||
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Grand Magnate
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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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06-12-2010, 09:32 PM | #5 | |||
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Grand Magnate
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Quote:
Prayers for all, Mark56 |
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"Thanks for this!" says: | Burntmarshmallow (06-12-2010), Rrae (06-16-2010) |
06-13-2010, 05:17 PM | #6 | |||
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Grand Magnate
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I guess I will call this -The other side - as I wish to bring up the worries warnings and situations I have found others in and what I have "seen"
( threw written word and phone not in person) what I have seen others have to go threw. First I would say Big worry about Neuro Stim / PNS surgery is INFECTIONS right after surgery at the implant sites where the leads and battery are, It is important to keep these areas clean covered and dry follow all instructions by the reps and your Doc. Also staying healthy and fending off the flu and cold any sinus infection is VERY important! I know of others who have gotten infection and it travels towards leads and such causing the whole Stim leads and all to be removed to prevent any further risk of health and also risk to the unit itself. after the infection was cleared up they have had re-implant of Neuro stim / PNS and are doing GREAT! I have a friend who is awaiting her re implant and damn it is hard this waiting and this whole extra weight of the infection , Trust me if you can avoid it DO IT AT ALL COST. It is NOT Fun to go threw what I have seen others go threw.besides the pain this includes having IV feed anti biotic every few hours all day and night .Yet at same time it is so very awesome when at last the re-implant is a go and they find the light again get some of their life back. Another Big worry / risk is lead migration or lead dislodgement .Just like it sounds the leads moving or slipping out of the placement area. .Most times they can go in and readjust the lead and secure them . other times this is not possible as doing this may cause more damage. It depends on the situation, the person and where the lead has been placed and where it migrated to. etc. I myself now worry about tasers and such .not that I am in trouble or am in situation where I would get tased by anyone.. but it is just something I DO NOT want to happen. I have no trouble flying I have a card that states I have a medical implanted device I show when I need to go threw metal decors and security. flying has never caused me any issues as far as pressure ..I have the normal ear pop thing but it is noting different then a normal person deals with chewing gum and yawning help. I take Aspirin as I do get head aches with pressure change from flying..driving in the mountains and always pressure change with the weather. I dont like to be outside when lighting storms are passing but most of us have been taught by good ol mom not to play in thunder storms.lol also I can NOT have an MRI here are a couple other warning for the neuro stim/PNS That I got when I had my device implanted. Warning -- Sources of strong electromagnetic interference (eg, defibrillation, diathermy, electrocautery, MRI, RF ablation, and therapeutic ultrasound) can interact with the neurostimulation system, resulting in serious patient injury or death. These and other sources of EMI can also result in system damage, operational changes to the neurostimulator or unexpected changes in stimulation. Rupture or piercing of the neurostimulator can result in severe burns. An implanted cardiac device (eg, pacemaker, defibrillator) may damage a neurostimulator, and the electrical pulses from the neurostimulator may result in an inappropriate response of the cardiac device. . Patients should not scuba dive below 10 meters of water or enter hyperbaric chambers above 2.0 atmosphere absolute (ATA). Electromagnetic interference, postural changes, and other activities may cause shocking or jolting. so these are some of the risks and worries or... "The other side of things" . Every surgery has risks I wanted to mention some here because in reality it is not always lolly pops and sugar drops . some have had the trail and it didn't help them for what ever reason and while they are sitting there they have to look at me and others like me who have had success with this . I look back and will NEVER FORGET them I have to show both sides. because that is the way things really are. I myself have never had any issue with infection or any problem with my Neuro stim / PNS . PEACE BMW Last edited by Burntmarshmallow; 06-13-2010 at 05:38 PM. |
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06-13-2010, 07:50 PM | #7 | |||
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Grand Magnate
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Possibly a good idea to share some links so one can see what the neuro stim looks like I DO NOT PROMOTE ANY ONE COMPANY OVER ANOTHER !! Nor do I promote any Doctor over another ! tho I have some Doc's lower on the list
It is the general Idea of neruo stim / PNS that I am fan of. I hope to provide some info about it and also hope others will share and ask questions and for support . PEACE BMW the links ---- Boston Scientific http://www.bostonscientific-internat...vedForMedProfs St Jude http://www.sjmneuropro.com/Products/...PG-System.aspx St Jude mini http://www.sjmneuropro.com/Products/...PG-System.aspx Medtronic http://www.medtronic.com/your-health...ator/index.htm Last edited by Burntmarshmallow; 06-13-2010 at 08:43 PM. Reason: fix the link |
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10-04-2010, 12:17 PM | #8 | ||
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New Member
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Hi everyone, I just found this site today. I don't know why or how I missed it earlier as I am actively on two other sites for TN. This one is the only one that has information, and a lot of it, on MCS and other options for ATN. I have exactly ONE person that I have been able to talk to about this prior to finding you all here. Thank you so much for sharing your stories, the good and the bad. No one wants a sugar coated version, reality is what I want and need. I'm not sure what direction I am heading in as far as solving my problem goes, but I feel like now at least I have some answers to pursue further, from people who have actually experienced it, not just some random study on the internet. You have no idea how wonderful it feels to read the stories of success, to feel hope, even if it's only a little.
Thanks again for being here, for sharing, for supporting. |
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