Neurostimulators of any kind...

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Comment by Danna Jacober on February 27, 2012 at 12:02am

I just wanted to update everyone on what’s been going on with my pain.  The doc’s determined that the occipital stim they repositioned October 2010 was working but they could not determine why the stim was sending signals laterally from the base of my skull on the right side to the left side of my skull.  Since the vast majority of my pain now is focused around my right eye, the best – educated guess is “Supraorbital Neuralgia”, so we decided to try another procedure.

Friday 2/24/2012 after a successful trial with supraorbital and infratentorial nerve stimulators, they removed the existing occipital nerve stimulator and placed a supraorbital nerve electrode and infraorbital nerve electrode above and below my right eye. 

They were able to use the existing generator; they did however have to tunnel down with the placement of the leads.  My pain level related to the neuralgia is 0 however I do have surgical pain behind my right ear, down my neck and into the generator.  I have a lovely black eye, not sure how that happed but it’s something to talk about. :-)  Fingers crossed on this procedure.

I am blessed to live in Oregon and have access to Dr. Kim Burchiel and his team at OHSU. 

Comment by kwebster on January 17, 2012 at 12:29pm

6 weeks post op today! Had PNS St Jude unit put in 6 weeks ago today!  I must say this is the best thing in the world, I was determined to be a good candidate as I was resistant to drugs and pain meds gave me no relief, I was sleeping 23 out of 24 hours and spending that 1 hour awake in dire pain, it was my first surgery of any type in my life and I am 51 years young all I wanted out of the surgery was at least "half"  of my life before TN back, and I must say besides an occassional over the counter tylenol, my pain is heaven, it was not an immediate heaven as it has taken 4 weeks of working with the St Jude Rep in programming my stimulator but with patience and continued tweaking to my stimulator this has me waking up and looking forward to the day instead of trying to figure out how to "not" wake up to face the day I am even thinking of taking a quick trip to Florida in a few days to visit my sister!!!! Shocker if you would have asked me that in November 2011 I would have thought couldnt make it to the car to get to airport let alone take a trip!!!! So I consider myself a success story and am so so happy to turn this little stimulator on and enjoy the ride!

 

Comment by Mary L on September 15, 2011 at 8:55pm

I had a PNS implanted last month. It helps a little where I have mild surface burning but no help at all for the deep stabbing.  One bit of advice - If the test does not work then the permanent implant won't work either.  I can testify to that because the test really did nothing for me but I went ahead with the permanent implant hoping it would be different. It isn't. Other people have had great success with it and the surgery is not bad at all.

Comment by Tina on September 15, 2011 at 2:16pm

I think it is a great option to try. that is the great thing about PNS you have a trail to see if it will work at lowering / controlling you pain better. you cant un-do and MVD . MVD is like brain surgery and much more evasive. with PNS  you have a trail and if it works you have to have approval for the final implant . if it dose not work it can be removed without to much trouble. it is same day surgery. I say try this before M.V.D. unless you have mri that shows a clear  compression .  MVD  has helped many others I know.

Comment by Dianna Hammond on September 15, 2011 at 11:08am

Hello everyone,

I joined this group as my doctor has referred me to a neurosurgeron to see if I would be a good candidate for PNS. My appointment is on Friday. Reading your posts has let me know a little of what to expect. I have TN type I and II on the right side of my face. Does this procedure only help with type I? Believe me I would be estatic if I could get any part of my pain under control. Do you believe this is a way a person should go, even before MVD? I have only tried meds to control pain....with no great effect. I know I should ask my dr these questions, but as she has had less than 10 TN patients in her career....we are experiencing a learning curve together. :)

Glad to have joined the group.

Dianna

Comment by Debbie on August 6, 2011 at 9:53pm

Hi all,

I tried typing this and it disappeared. . hope it isn't a duplicate.  Anyway. . .I do not have a nuerostimulator of any type.  I do have TN on one side, all 3 branches, but mostly the upper 2.  Do you think this is something that might help?  Does anyone else have one with this situation?  I am wondering if this is something I should pursue.  I don't believe the surgeon I have visited does this, so would need to go somewhere else.  Thank you for any thoughts you might have.

 

Debbie

Comment by Mary L on August 6, 2011 at 12:37pm

Doy! I just realized I was using the recharging unit! The remote was in another box! I was so out of it at the hospital that I didn't remember anything! It's little and lightweight and I was able to turn up the strength. I am feeling some relief now - not 100% but better plus I'm not on any of my norco - just Lamictal.

Comment by Mary L on July 21, 2011 at 9:44pm

My implant is scheduled for the 29th! only one week to go! I hope it works. I had so much pain from the test where he rammed the lead all the way to my nose, that I could not tell if the pain was from my TN or the procedure. I was bruised and swollen for a few days and then I had to have it taken out. But... I did not have any of the deep stabbing pain, which is the worse! I've been having stabbing in my eyeball lately from the a/c and I am soooo ready for the implant. I will keep you posted. Oh - question here. I am having the implant done on Friday and taking the following Mon, Tues and Wednes off which gives me 5 days off before returning to work (desk job). Do you think that is enough time if everything goes well?  Lily, I'm sorry you had to have  yours taken out. You have had some bad luck with the surgeries, girl! You are due for some good TN karma! I'm wishing some your way!

Mary

Comment by Lily on July 6, 2011 at 7:22pm

Hi Friends,

A few weeks ago I had my PNS completely removed. Very sadly. I so wish that we had been able to make it work, but there were just too many problems. I will continue to be an active member of this group, though, because lots of problems means lots of experience :o/, I say that somewhat jokingly.

In hindsight, I would still do it again, maybe with another more practiced surgeon (mine is great but he excels at the DBSs and MCSs, moreso) , but for now, I need a medical vacation!

I still hope to hear from you, Mary!

And everyone, let's keep this forum going, because there will be more and more of us as this technology advances.

Lily

 

 

 

 

Comment by Lily on June 15, 2011 at 8:55pm

Hi Mary,

How did the trial go....did you decide to have it implanted?

Lily

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