advertisement
Reply
 
Thread Tools Display Modes
Old 08-29-2013, 04:49 PM #1
parisathena parisathena is offline
Newly Joined
 
Join Date: Aug 2013
Location: Lonn Island NY
Posts: 1
10 yr Member
parisathena parisathena is offline
Newly Joined
 
Join Date: Aug 2013
Location: Lonn Island NY
Posts: 1
10 yr Member
Default Doctor's name

I have been looking for some time for a doctor who can do V1,V2,V3 and I would appreciate if you direct me to your doctor. By the way are you still happy with the PENS?

Thank you,
Bill from NY



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
parisathena is offline   Reply With QuoteReply With Quote
Old 09-01-2013, 05:45 PM #2
leejcaroll's Avatar
leejcaroll leejcaroll is offline
Junior Member
 
Join Date: May 2008
Posts: 25
15 yr Member
leejcaroll leejcaroll is offline
Junior Member
leejcaroll's Avatar
 
Join Date: May 2008
Posts: 25
15 yr Member
Default re SCS

I had my first SCS in 1986. for trigeminal neuralgia, atypical TN, atypical acial pain and anaesthesia dolorosa.
It worked for about 85% of the pain. Unfortunately I lost it due to an unrelated infection. The next did not work at all and I also lost that to an unrelated infection.
Having no other options I had a sensory cortical stimulator implant placed in 1991. It was 100% experimental, only the 13th in world to have it.
All of the were covered by my insurance, medicare and blue cross and blue shield.
The last one helped more then I realized. It failed about a year ago and that allowed me to see how much better I had been doing with it working.
The are not sure why it failed. I apparently have had it on and working longer then anyone else on whom they have records.
I have been told that insurance companies are not willing any longer to pay motor cortical and brain implants because the studies do not back up the benefit.
leejcaroll is offline   Reply With QuoteReply With Quote
Old 09-02-2013, 12:38 PM #3
CLTL CLTL is offline
New Member
 
Join Date: Mar 2013
Location: Coastal U.S.
Posts: 4
10 yr Member
CLTL CLTL is offline
New Member
 
Join Date: Mar 2013
Location: Coastal U.S.
Posts: 4
10 yr Member
Default NY

Quote:
Originally Posted by parisathena View Post
I have been looking for some time for a doctor who can do V1,V2,V3 and I would appreciate if you direct me to your doctor. By the way are you still happy with the PENS?

Thank you,
Bill from NY
Hi Bill, I am new here but not to TN. I have heard of a very competent Dr from NY who has done many Stim implants successfully. I will try to find his name and get back to you. It may take a few days, however, because I am going out of town tomorrow evening to have my own Stim trial Weds. and I am swamped with stuff I have to do before leaving. I will get back to you in a few days. CLTL
CLTL is offline   Reply With QuoteReply With Quote
Old 09-02-2013, 04:23 PM #4
leejcaroll's Avatar
leejcaroll leejcaroll is offline
Junior Member
 
Join Date: May 2008
Posts: 25
15 yr Member
leejcaroll leejcaroll is offline
Junior Member
leejcaroll's Avatar
 
Join Date: May 2008
Posts: 25
15 yr Member
Default

I may be wrong but I have a feeling you are referring to Jeffrey Brown
leejcaroll is offline   Reply With QuoteReply With Quote
Old 09-02-2013, 11:47 PM #5
CLTL CLTL is offline
New Member
 
Join Date: Mar 2013
Location: Coastal U.S.
Posts: 4
10 yr Member
CLTL CLTL is offline
New Member
 
Join Date: Mar 2013
Location: Coastal U.S.
Posts: 4
10 yr Member
Default Loved your book and yes it was Dr. Brown

Quote:
Originally Posted by leejcaroll View Post
I may be wrong but I have a feeling you are referring to Jeffrey Brown
You are correct, I just found his name, it is Dr. Jeffrey Brown in NYC.

Your book was incredible, I wanted so many times to reach through the pages and help you with your struggles. Thank you for writing it, I wish you could write a couple of more chapters at the end to continue your story. CLTL
CLTL is offline   Reply With QuoteReply With Quote
Old 11-02-2013, 08:47 AM #6
Burntmarshmallow's Avatar
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Burntmarshmallow Burntmarshmallow is offline
Grand Magnate
Burntmarshmallow's Avatar
 
Join Date: Sep 2006
Location: east coast florida
Posts: 3,456
15 yr Member
Default

I have learned that after my 12 plus years of support and wishing that FINALLY the stim has been approved by the gov for use in any part of the body for nerve pain as well as other things such as depression and strokes . and with that I feel I reached my dream and feel the need to move on. many of you that have posted have become great friends and I will continue to keep in touch. Thank you all.
PEACE
BMW
Burntmarshmallow is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
kwebster (11-07-2013)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
SCS/PENS for face pain, AD , T.N. Burntmarshmallow SCS & Pain Pumps 5 06-07-2010 06:16 AM
Pain In Chronic Headache Alleviated By Nerve Stimulation Therapy (Topix) NewsBot Headache 0 10-12-2008 07:20 AM
Face Pain TN? slskckjebw Multiple Sclerosis 7 02-09-2008 06:42 PM


All times are GMT -5. The time now is 07:01 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.