date set for nerve stimulator trial

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skeye
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Date Joined Mar 2008
Total Posts : 2976
   Posted 12/22/2009 2:58 PM (GMT -7)   
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

melliflious
Regular Member


Date Joined Dec 2009
Total Posts : 79
   Posted 12/22/2009 4:10 PM (GMT -7)   
Skeye,

I'm glad to hear that you don't have to wait too long. I hope everything goes well, I'll be thinking of you!!!

Jenna
Pain Issue: Sub-scapular bursitis, scapular dyskinesia, nerve damage down left arm, shoulder and neck
Treatment: PT, Tens Unit, Oxycodone, Diazepan, Hydrocodone-APAP, Tramadol, Voltaren/Duac gel

Also random hearing loss in both ears at age 18ish, not sure exactly when it happened or why. Got amazing Oticon hearing aids at 20, they've worked wonders! Keep hoping that my doctors can connect my ears to my shoulder and fix them both all at once!! A girl can dream, right?


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 12/22/2009 5:24 PM (GMT -7)   
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

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 12/22/2009 8:33 PM (GMT -7)   
Oh that is so exciting Skeye. i will pray that this is your answer to some low or no pain days. Keep us updated. This is what i am wondering that might help me for my headaches. What kind of dr. do you see for this? a neurosurgeon? Good luck my friend!!

Suzane

bluejet2
Regular Member


Date Joined Feb 2009
Total Posts : 487
   Posted 12/22/2009 8:55 PM (GMT -7)   
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

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 12/22/2009 10:05 PM (GMT -7)   
Skeye

That is GREAT new! I will definitely will be saying prayers for YOU! I sure hope this works out well for you! But PALady made an excellent point, try not to think of this as your last resort, you never know what the future might bring! But I sure do hope that this helps you! You know you have all our support!

Hope YOU have a HOLLY JOLLY CHRISTMAS Skeye!

White Beard

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 12/22/2009 11:09 PM (GMT -7)   
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
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 12/23/2009 4:24 AM (GMT -7)   
Hi Skeye, I've been wondering what your decision was going to be. I'm also pleased you're going to give it a try.

Lets hope it really works for you, I just can't imagine how you cope with your eye all the time. My heart goes out to you.

So amazing they're doing it over Christmas, everything here tends to shut down over Christmas.

Have the best of luck with it all. I'll be thinking of you, golitho

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 12/23/2009 5:39 AM (GMT -7)   
Skeye,
WONDERFUL NEWS!!!  You will be in our prayers for this to be your answer!
Have the Merriest Christmas!
XXOO
Patti 

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/23/2009 7:55 AM (GMT -7)   
Thanks everyone for the prayers & well wishes! They are greatly appreciated!! I'm counting down the days!

Suzane - Yes, a neurosurgeon is doing the procedure. He has a fabulous reputation & is really experienced with facial pain & nerve stimulation. I only met him once, but I like him a lot. You can tell that he really cares.

Golitho - I actually could have had the first surgery done tomorrow, on Christmas Eve Day if I wanted too! However, that is the big day that my family celebrates Christmas, so I said no. It's amazing that they still operate that day! I guess they are just very devoted, or have no lives smilewinkgrin.

Happy Holidays everyone!

Skeye

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 12/24/2009 10:08 AM (GMT -7)   
 
 
   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

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


Stella Marie
Veteran Member


Date Joined May 2005
Total Posts : 601
   Posted 12/24/2009 12:29 PM (GMT -7)   
Wonderful news. Don't be disappointed if the leads move a little during the trial. I think that is normal for almost everyone's trial. I hope you find the relief you deserve. The Temporary system does not have near the coverage the permenant one will.

Stella Marie

Moderator for Chronic Pain and Epilepsy

Rare neurodegenerative /movement disorder called “Multiple System Atrophy”.  Mobility issues,, neuropathic pain,  spasticity, myoclonus, central apnea, collagenous colitis, joint and body pain, swallowing and respitory  involvement,  Implants: intrathecal pump & neurostimulator.  Extra features: O2 & wheelchair.

 

 


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/24/2009 12:52 PM (GMT -7)   
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

privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 12/24/2009 2:17 PM (GMT -7)   
Excellent news to take into the Holidays with you...I am happy and excited for you. Good luck!!!

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 12/24/2009 8:58 PM (GMT -7)   
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

Scarred_for_life
Veteran Member


Date Joined Jul 2008
Total Posts : 1559
   Posted 12/26/2009 2:10 AM (GMT -7)   
Wow Skeye, I am actually gushing with envy here!!!!!! You know that I have been trying to get the SCS for years now and here it is another holiday without any real pain relief. But I am very, very happy for you my dear. I do so hope this works for you and I will be crossing every finger, toe, leg and whatever else I can cross for a speedy recovery and many years of lessened pain!!!

I know what you mean by "last chance for relief" because my doctor has said that as well. The reason they leave the SCS for the last is because it IS the last chance for decreased pain that is available.

Hugsssssss

Scarred
What doesn't kill us only makes us fight back harder! :P
 
Two level fusion on S1- L4 in 2000. One level fusion on L3-L4 in 2003 and revision on L3-L4 6 months later.  This led to a diagnose of failed back syndrome, nerve pain and Chronic Pain. Two bi-lateral patellar realignments on both knees last one in 1988.  Overall...I'm in great health. 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13479
   Posted 12/26/2009 10:36 AM (GMT -7)   
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.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/27/2009 6:38 AM (GMT -7)   
Thanks Cathy, Char, Scarred, & Susie! Your well wishes are much appreciated!

Scarred -- you're time will come! I have no doubt about that! You've been working so hard!

Skeye

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 12/27/2009 1:34 PM (GMT -7)   
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

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 12/27/2009 1:55 PM (GMT -7)   
Hello Skeye
Your day is getting here quickly.  How are you doing? Do you have a time for Tuesday?
 
I am sorry I can't seem to find the email you sent me with those articles. If it's not too much trouble and you have time i would like to have them again as I had not finished reading them all. Thanks
 
hugs
Suzane

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/27/2009 6:27 PM (GMT -7)   
Palady, you're still having computer problems? sad 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

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 12/28/2009 7:18 PM (GMT -7)   
Skeye, you will be in our prayers in the morning. We will be looking for a good report. Blessings!

catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 12/29/2009 8:01 AM (GMT -7)   
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

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13479
   Posted 12/29/2009 8:20 AM (GMT -7)   
Catahoula, thank you so much for posting to Skeye's thread. I would like to welcome you to Healing Well. I do hope you will make a separate post by choosing new post and introducing yourself so the other members can say hello and welcome aboard.

I am so sorry to hear of your problems with other drs not wanting to touch you because of the implant. I have a pain pump implanted and it is very, very difficult finding drs willing to take me on too. This was not told to me before having the implant. One of the many things I was not told. Shame on your dr for not treating your pain at a decent level. It should be criminal for these drs that stick their heads in the sand and under treat their patients.

I do hope you will hang out with us here at the forum.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 12/29/2009 10:03 AM (GMT -7)   
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
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