Boston Scientific Stimulator for Trigeminal Nerve

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trigempain
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/1/2010 5:51 PM (GMT -7)   
Good evening!
 
I am new to the sight and have spoken with a couple of people already.  Is nice to chat with people who understand what you are going throught.  I have ATN (Atypical Trigeminal Neuralgia) from shingles in the upper right portion of my face.  My doctor just suggested the Boston Scientific Stimulator, anyone tried it?  I have only seen information on it for the back.  I currently take the following meds: Cymbalta, Topamax, Vicodin and MS Cotin and would love to reduce them if possible.  Every 6 months (can only have it done that often) I have done the Radiofrequency Ablation, and then regular blocks done monthly as needed when it wears off.  I would also entertain any suggestions on any other medicines that would help reduce the pain or that have worked for others.
 
Look forward to hearing from you!
 
Trigem

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 7/2/2010 6:25 AM (GMT -7)   
Hello trigempain and welcome to the Chraonic Pain Forum . I don't have your particular challenges so I can't advise you on the particulars you asked about but I wanted to welcome you here . I'm sure there will be others here who can give you advise and you'll find support and caring in abundance as well . I hope you feel better soon and hope we hear from you anytime ! Mikel

trigempain
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/2/2010 6:54 AM (GMT -7)   
Mike, Thank you for the welcome!  It is nice to have somewhere to go and talk with people who have chronic pain and understand.  Take care. Trigem

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/2/2010 4:30 PM (GMT -7)   
Trigempain,

I just had the temporary system implanted today (I actually just got back from the hospital). I have electrodes on both the superior & inferior branches of the trigeminal nerve. My pain is not the same as yours, but there may be similarities. Feel free to email me about the trial. I'm still kinda tired from the anesthesia & my eyes aren't functioning very well, so I'll keep this brief for now. My email can be found in my profile. I'm sure I'll be posting more about this as the week goes on. Right now it's a little too early to tell. I'm just kind of getting the hang of how to work the temporary stim. My unit is not Boston Scientific, though, it is Medtronics.

Skeye

trigempain
New Member


Date Joined Jul 2010
Total Posts : 7
   Posted 7/3/2010 12:27 PM (GMT -7)   
Thanks Skeye!  I hope you are healing well and you are finding it is helping.  I will email you in a couple of days.  i appreciate your being willing to discuss!!  Trigem

Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 7/4/2010 3:13 AM (GMT -7)   
First of all welcome to the Healing Well Chronic Pain Forum.  There have been quite a few postings about stimulators over the past year.  I suggest that you use the search function to search the forums for postings related to stimulators.  If previous postings are not helpful, please let us know.  I had a stimulator implanted in 2007 for back and legs pain.  I have to be honst, I have never heard of a stimulator used for post shingle pain.  My question to you would be whether you pain is going to less over time.  Most people I know that have shingles have extreme pain for up to 5 years, then it begins to lessen.  I would hate to see you use a rather permanent surgical option for a condition that might change with time.  It is much easier to adjust oral medication to fit your pain needs, the surgical one.  Are you having a problem with your pain needs?  What if you lessens as time goes on.  Another thing to keep in mind is that pain doctors frequently suggest stimulators to patients because there are big big $$$$ to be made off of them.  Most pain doctors have little or no surgical experience, exceopt for anesthesia control.  They have had little training in pump impantation.  I would make sure your doctor has plently of experience under his belt with stimulators.  The stimulator is only as good as the leads.  If the leads or poorly placed, you will not have the control you are looking for.  Because this is a nontraditional use of a stimulator, I would highly suggest that you get a second opinion.   Once you have a stimulator implanted it is very difficult to have is removed.  Once implanted, you can no longer have diagnostic MRI's.  I know this may not seem important right now, but you would be surprised at how many diseases and injuries are diagnosed with an MRI.
 
I just recently posted a thread abut stimulators verses pumps, you might be interested in reading my comparisonn.
 
I do not want to sound negative.  I would hae to see you seek out a surgical fix for a problem that my lessen as time goes on.  It is much easier to customize your oral medications to treat your pain then to have a implantable device.
 
Good luck in finding a solutions to you pain problems and contact me if you have a specivic question we can answer for you.

Stella Marie   Chronic Pain Forum Moderator

Progressive neurodegenerative disease called Multiple System Atrophy, congestive heart failure, muscle spasms, muscle pain, neuropathy, & neuropathic pain, central sleep apnea, osteoarthritis, and 2 pain implants – intrathecal pain medication pump and an SCS (spinal cord stimulator). 

 

 



skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/4/2010 9:21 PM (GMT -7)   
Trigempain,

I was just thinking, I don't know what research you have done, but I did a whole bunch of research in the primary literature about peripheral nerve stimulation before deciding to go ahead with the trial. I'd be happy to share this research with you via email. Secondarily, it was also very helpful during my numerous appeals to my insurance company.

Hope you had a nice holiday.

Skeye

JulietteSuzanne
Regular Member


Date Joined Dec 2007
Total Posts : 104
   Posted 7/8/2010 9:42 PM (GMT -7)   
Trigempain,

I also have ATN or TN Type 2 as it is now sometimes called. Either way, I am in constant pain. My pain began with a regular ol' toothache that wouldn't go away. After many dentist visits and having the tooth pulled back in 2001, the pain is STILL there. After several misdiagnosis', ATN was finally stated.

As far as meds, I have been on everything under the sun. But, I have yet to try nerve blocks. All the literature I have read said that nerve blocks don't work for ATN. They MAY work for regular TN, but hardly ever for ATN.

Can you talk to me about the nerve blocks you've received? Where they lidocaine? So they worked? This gives me hope!

LolaTrixieBelle
New Member


Date Joined Jul 2010
Total Posts : 1
   Posted 7/10/2010 3:19 PM (GMT -7)   
 Have you every tried any surgical techniques? Dr. Peter Jannetta developed the current neurosurgical techiques for Trigeminal neuralgia. I've tried everything & surgery was a life saver literally !!
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