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

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Old 06-09-2010, 12:28 AM   #11
Rrae
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Heart Thank you Cheryl....

You can count on the fact that the support here is neverending!!

Thank you so VERY much for sharing your story! This will help more people than any of us probably realize!

God Bless you for this!
We will be by your side as you wait for your surgery and beyond....
Many people will be inspired by this!

Praying for You!
Rae
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Old 06-10-2010, 05:56 AM   #12
Burntmarshmallow
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Cheryl needs to take a break from the comp until she has her final scs implanted she is having allot of pain and eye issues ...but I will post updates on her as we wait and as she has the surgery. Blessings and many thanks for the well wishes and prayers.
PEACE
BMW
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Old 06-10-2010, 07:25 AM   #13
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Thank you BMW, and do let her know she is in my daily prayers.
Peace,
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Old 06-10-2010, 09:24 PM   #14
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I will do just that Mark.
I really hope others that read this will post questions or something. I am glad Super and Bayley posted . I think I will "try to hunt up some old contacts who have had this implant for Bi Lat and other face pains and maybe they will chime in for a one time showing sorta speak...
I see my meanie ostrich hasn't scared the approval along any faster for you..I guess maybe I will send them a a pie and try to sweet talk them into hurrying things up for you lol.
PEACE
BMW
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Old 06-11-2010, 01:21 PM   #15
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Hi Tina, I said I would respond so here I am. Many of you may not know me. I haven't posted here for several years. I frequent Brain Talk. I have bilateral TN. I've had it for 18 years. I've had an MVD on both sides, one successful for 9 years, one unsuccessful. I had Gamma Knife on the unsuccessful side. Like all of you, I've been on many many different drugs including the opiates which barely touched the surface. I didn't know what to do anymore as I couldn't live with the pain. A strand of hair would send me into tears. I finally found a dr. that would change my life forever and I didn't have to travel out of the state where I lived. We tried a few different cocktails without success. My dr suggested we try stimulation. The first stimulator I tried was a spinal stimulator. We believed this would work, the trial worked just fine. After the real battery was implanted and the leads were implanted into the spine it just didn't work. The leads had to be implanted so far up into the vertabrea to hit the right nerves that the leads moved. Then with the hospitals approval, since I would be the first patient to have the implant for this, we tried the PENS. Peripheral Neuro Stimulator. We did a trial period of 4 days to see if this would help with the pain. It did so we went ahead with the implant. The battery is implanted under my left arm along my bra line. The battery is about the size of a silver dollar but thicker. You can't even see it. It is rechargable. I have the control of turning it off or on, up or down depending on how much pain I'm in. About a year later, the pain on the right side started coming back. We made a decision at that time to go ahead implant another stimulator since I've had such a great success with the other one. Insurance fought me a bit on this one, but we won. I was asleep for the entire procedure on both of these. It's usually only the spinal stimulation that you're asleep and awake so they can tell which nerves they are stimulating. My leads go up my back, into the back of my head, behind my ear and into my cheek and one over the upper teeth. Each lead has 8 electrodes on it. They have literally saved my life.

Don't get me wrong. I still take a few meds. I talk trileptal, topamax and a very low dose of trileptal. This doesn't mean the same for you. I was on a heavy dose of narcotics before the the implant to the left side. The stimulator isn't designed to give you a 100% pain free life. I have several days where I am pain free because of the stimulation and the meds. In the winter or when the weather is not so good, my pain levels go up. This is what the stimulator is for. It is such a relief. I've had my stimulators now for about 6 years and I still see the same dr. I will NEVER see another dr. for my TN. He is a Pain Management Specialst. This is it in a nut shell. Just be sure that your dr. has done this before and knows where to run the leads to get the correct stimulation to block the pain. The stimulation sends a message to the brain basically telling it that there isn't pain there. So where you're having an attack or a bad attack, it blocks a lot of those signal or mis-fires.

Please feel free to ask me any questions you might have.

Regards,

Kim

Last edited by KIMMERS; 06-11-2010 at 05:58 PM.
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Old 06-11-2010, 04:31 PM   #16
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Thumbs Up Thank You SO MUCH for posting this!



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!
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Old 06-11-2010, 09:40 PM   #17
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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   #18
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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,
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Old 06-12-2010, 05:03 PM   #19
Burntmarshmallow
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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 06-12-2010, 09:32 PM   #20
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Thumbs Up Well said Tina

Quote:
Originally Posted by Burntmarshmallow View Post
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
Tina that was a good post, filled with wisdom for the approach to pain management through use of neuro stim; emphasis on pain management. Would that there were a neuro switch to rid us of pain, but it is not a reality in our century. Pain management through a combination of stim and meds which may even reduce the need for opiates may allow so many of us to regain some of what we may have known as productive pre-pain lives. This is my hope for all who are allowed to take the neuro stim path.

Prayers for all,
Mark56
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