date set for nerve stimulator trial

Hi everyone,

I've been keeping quiet about this for a week, because I didn't want to jinx it before I got the final confirmation: I will be undergoing a week-long trial of the peripheral nerve stimulator (same device as the SCS, except they will be placing the electrodes on cranial nerves rather than spinal nerves, and the battery would go in my chest) starting next Tuesday, 12/29. They'll be taking me to the OR, where they will implant the temporary electrodes & hook them up to an external power supply. If all goes well (pray that it does), I'll have the entire system implanted on Tuesday 1/5. At this point I'm more excited than anything else. I'm really really really praying for a good outcome because as far as we know, this is my "last" and best chance for relief.

Skeye

Skeye,
I'm so happy for you! A great holiday present (ok, maybe not your first choice, but consideirng everything a pretty good one!). I am going to put all my eggs on it helping with your pain! But regardless I hope you don't think of this as your "last" resort, should it not be the right thing for you. New things will continue to be developed - so always have hope, no matter what!

But my wish for you at Christmas and for the start of 2010 is for a successful trial and permanent implant!

Keep us posted!

Hugs,

PaLady

Hi Skeye:

I'm so happy to hear that you decided to go ahead with the trial! I will be praying that the device works as well for your eye pain as it does for my stomach!

Take care and keep us posted on how you are doing!

Lorie

Skeye,
That is terrific news hon! I hope that you get the pain relief you desire and that all goes well with the trial and the implant.
I wish you lots of pain relief and skilled hands of your surgical team.
Sandi

Skeye,

WONDERFUL NEWS!!!  You will be in our prayers for this to be your answer!

Have the Merriest Christmas!

XXOO
Patti 

 

   Dear Skeye,

 

      Im so excited and scared for you all in one breath! On one hand THIS could be IT! This could be something that FINALLY helps! On the other hand... you ve been through so much, gosh have tried every method known to man.... Bleh! Only good positive thoughts! Gosh, I hope this works! Please keep us updated as the approval and implantation process moves along. You are in our hearts and prayers here in New Mexico. *warm huggs*

 

*huggs*

   dani

Thanks Dani! I'm very excited & have a very positive outlook (this is going to work!!!!!!). I'm looking forward to next week. Yes, I'm a little nervous, but I care less about the actual details of the procedures, etc, than its ultimate outcome. Whatever hoops I have to jump through to possibly get some relief, so be it.

Stella, thanks for sharing your wisdom! I'll definitely keep all that in mind! It's nice to get inside information like that!

Merry Christmas!
Skeye

Oh Wow Skeye,
something for you to finally look forward to, yeah...of course good luck and lots of well wishes...
I just know it will work for you, I'm keeping very positive for you...
((((Skeye))))))
hugz

Skeye I think this is wonderful news and I am so glad you decided to share it with us here. I know you have been dealing with the "jinxed" thing for a long time-send it on to the trash can. lol I have never heard of what you will be having done as most of the SCS I have read about is for spine issues. So, you will be our expert on this one. Wishing you lots and lot of good luck and sending good vibes to you.

Skeye,
I hope i'll be able to sign on to read how you're doing, but I will be thinkiing of you!

Hugs,
PaLady

Palady, you're still having computer problems? I hope it's just the remainder of the "holiday rush." We miss hearing from you! I hope you had a wonderful Christmas!

Suzane, yes, I'm very excited! I have to call the hospital tomorrow to get my finalized time (barring any emergencies), but I was told last week that I was first on the schedule with the surgery set for 7:30 am. Nice & early, but that's good, I rather get it over with than sit around all day waiting (especially since I can't eat or drink!).
I'll try to resend you that email.

Skeye

I have a supraorbital nerve stim implanted in the right side of my forehead and I assume this is similar to what you are having done. Its been in for about 3 years now and I have had some success with it. Unfortunately I still have a great deal of pain and we just haven't found the correct pain "cocktail" for me to fully allivialte my pain. I tried an opcipital nerve stim back in May but saw no change  so I refused to have the permanant stim implanted though the doc really pressured me to do so. I had been on on Actiq prior to that trial and it seemed to control the pain even though it was costing me $1500 a month. As sonn as I said I would not agree to have the opcipital nerve stim implanted, Doc refused to prescribe the Actiq anymore and only wrote for Norco. After 8 very long painful months, he has agreed to add Opana, 10mgs but reduced the Norco to 4 a day for breakthrough. This has helped somewhat but I still find many times a day when the pain is just excruciating. At this point I donn't know what to do. I am hoping that at the f/u appointment he will agree to raise the  opana to 20 to see if it helps. I also take 50mg topomax bid and 75mgs lyrica 4x's/day for pain. The only concern I must tell you about that I have discovered with the implant, should you chose to go through with it is that NO ONE will see me for another opinion. The minute I say I have an implant I am told that they will not take the risk. I have even been denied at Mayo. Just know this is you find yourself unhappy with the results. This is just what has happened to me . I wish you all the luck with your surgery and pray it helps your pain

Thanks for the info Catahoula! All the info I can get is much appreciated.
Yes, one of the electrodes was to be on the supraorbital branch of the trigeminal nerve. The neurosurgeon that I am seeing is in a big practice, so hopefully I won't ever have to worry about seeing someone else with regards to the stimulator.

Skeye