NeuroTalk Support Groups - Stimulation... PENS / SCS for face pain, AD , T.N.

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- Trigeminal Neuralgia (https://www.neurotalk.org/trigeminal-neuralgia/)

- - Stimulation... PENS / SCS for face pain, AD , T.N. (https://www.neurotalk.org/trigeminal-neuralgia/124048-stimulation-pens-scs-pain-ad.html)

Dr. here in Denver

Quote:

Originally Posted by trainwreck (Post 912923)

I am open to questions about the PNS or Pain pump. My PNS units all failed over the years for various reasons. I've had different manufactures for them. Medtronics being the most common. My pain pump is Medtronics and after 4 months it's working well except where the catheter moves in my spinal cord space and hurts at times. Well worth the discomfort for a 7 on the pain scale. The doc in CO at the University is only working on military personnel and is now down in Co Springs. The University won't touch PNS or SCS now and neither will that doc's old practice. They are parceling us out to other states for now. The rate of success isn't high enough to offset the cost they have said. I don't regret any of mine while they were working-they brought some relief for a few months each.

Hi,
I would assume you live in Denver since you mentioned the Univ. and the doctor that does the stim. I am aware of him and I know that he does not see patients any longer.
I received my stim in Aug. 2010. I have had real success with mine. I have it in all three branches. It has never been worked on since. I have had the rep from St, Jude's in the beginning work with my settings. The doctor that
did mine is in Denver and he is great and very experienced. He has done seminars in other states to teach docs his method. So many docs will say that it can't be done for V3 as the lead would break due to chewing, talking, and yawning. This is untrue. My doc has a method that works. If you would like his name please email me and we can talk. It is calewark@me.com
Cheryl

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 sending you prayers and crossing my fingers for your rep and doc to work more magic at each and every one of your programing apts all next week.I know you r off to cleveland tomorrow. got your message lol your are such a "B" ha ha....B as in Beth ha ha ha :p stay strong warrior sister. safe travels we will talk when you can actually talk and not be in monster pain.I pray that is very soon Love ya t.n. sis.:hug:
PEACE
BMW

Quote:

Originally Posted by Burntmarshmallow (Post 920436)

Hi! I am trying to find someone who knows about having a Medtronic system put in at Seattle in a few days on two branches of the nerve that cause ATN pain 24/7. I am having trouble finding anyone who knows about this, I can't let my employer know for fear of losing my job, and am just not able to find much specific information about the upcoming trial. Can anyone help?

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 (Post 662141)

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 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.

Quote:

Originally Posted by parisathena (Post 1011105)

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

I may be wrong but I have a feeling you are referring to Jeffrey Brown

Loved your book and yes it was Dr. Brown

Quote:

Originally Posted by leejcaroll (Post 1011894)

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

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