nerve stimulator implantation
 

Hi. I've never done this before.... has anyone with ON had a nerve stimulator implanted? My husband suffered dibilitating pain for 2 years before he was finally diagnosed with ON 1 1/2 yrs ago. Last Sept, after exhausting every other treatment option, he had the periphial nerve stimulator implanted. It worked perfect! for the first 2 months after surgery he had NO PAIN!

Then it stopped working. The doctor said to "wait it out" that sometimes this happens. Now my husband is bed-ridden again, suffering from pain so intense that even the maximum dose of oral painkillers doesn't even touch the pain. Now a pain management doctor is talking about a spinal cord stimulator. I don't know what to do. Between running our business, the house, the kids and his medical management I don't have a brain left to make any more decisions. Never mind the fact that there isn't any more money to pay for anything. Our insurance didn't pay for the stimulator, we had to cover that out-of-pocket.

I guess I needed to vent, and to find out who else out there was struggling with these issues. If anyway has had a SCS for ON, I would love to know your thoughts.

Hi Iffer
 

I'm sorry to see you haven't received any responses as of yet.
I too am awaiting the spinal cord stimulator for my bilateral leg peripheral neuropathy. I must embarrassingly confess I've never heard of the peripheral nerve stimulator you are talking about. Can you explain what the difference is between that and the SCS that you are asking about?
I'd like to be of more help, as getting these procedures done is a BIG deal!
In the meantime, let me recommend (if you haven't already), check out the RSD section. They have several wonderful folks there who have the SCS. Also a few on the Spinal Disorder Forum. Just punch in "spinal cord stimulator" or "SCS" on the search button.
Let me know how you and your husband are doing.
Please feel free to send me a private message Re: the information on the PN stim your husband has tried.

Truly Caring
Rae

I have tried many meds, physical therapy, nerve blocks nothing seems to help. I am appealing my insurance company's denial of a nerve stimulator, my 4th neurologist suggests the nerve stimulator or as a last resort cutting a nerve upper neck/lower skull area or even worse cutting a nerve in my spinal cord.

I am looking for idea's any suggestions?

I am so sorry there have not been more replies to this thread. I have been out of pocket. I had Tn and had several MVD to fix this nerve, but unfortunately my occipital nerve was shredded during first surgery and created ON. it did fix my TN.
I had a stim unit placed on Sept 15 for my ON. I was very lucky, my insurance approved it. keep appealing and working towards a stim. I too had the same 2 choices of having a stim placed or having the occipital nerve cut at it's origin. I met a spoke with a woman who had this nerve cut and had a horrible outcome and is much much worse and very much regrets this surgery. I know ther have also been good outcomes with this surgery,but I was too scared of having my nerve cut. I also probably know I would have consented to itif my insurance had denied the stim surgery and I had exhausted all my appeals. My surgeon told me the statistics for cutting the nerve are not very good. you have about a 20% chance of your pain not being helped or being left with much worse pain. not good odds when you are talking about your quality of life.
My stim is wonderful. it is taking away about 70% of pain. the pain is still there and I have good days and bad days where pain comes thru the stim. I am still learning how to best adjust the stim and use it most effectively. I would recommend the stim to anyone. it has given me back my life. I am driving again, haven't done that for almost 2 years and I am starting to enjoy normal everyday things. last week I actually went sailing with my hub two times for a short afternoon sail. I had almost forgotten how to sail and never thought I would be able to do this again.
the surgery is very easy compared to a lot of surgeries. I had had 3 surgeries this past year before having the stim placed, 2 of these were craniotomies of MVD. the stim surgery was nothing compared to the other surgeries, but they are still surgeries and you do have surgical pain and have to recover.
I cannot recommend the stim enough for someone with facial nerve pain or ON. I will be glad to answer any questions or help anyone, but it may take me a few weeks to answer because I am going on a vacation at end of week with hub for 2 weeks.
lisa

I do hope you are still posting, I have many questions for anyone who has experience with a cervical NS. If you are still around would you let us know?

I hope things have worked out for your husband.

I have a sister who can no longer do this type of research for herself due to horrific pain and being unable to think and cope. No meds work anymore, she's already had the procedure where a nerve is burned (cut) on both sides of her neck, it did nothing in her case. SHe's not appealing a denial from BC/BS. She wants the nerve stimulator or 'neurostimulator' because quite frankly, it's her last chance.

She's been on so many narcotics for horrific pain they believe she has minimal brain damage and I believe it. She'll ask me the weather where I live and in less than 2 minutes she asks me again.

This is my first hour of trying to find help.

When you were denied by the ins co for the NS what was their reason for the denial, if I may ask. Was it that the use of this device in the cervical spine is investigational? And may I ask what Ins Co denied you?

Thanks!

If you were approved for this procedure oh please, may we chat? I have so many questions for you, mostly on how to get ins to approve. This really is my sister's last shot at managing this pain. She had to give up her home business, she can't drive safely anymore, she spends time in bed with her head packed in ice, she can't go anywhere, the pain meds are no longer working... something has to be done here and I WILL get it done, I just need to figure out where to start.

TIA

Hi Bipley....
 

I see you are really needing info ASAP....I'm so sorry about your sister....
It's wonderful that you are looking out for her the way you are :hug:

Here are a couple other areas around here at NT that might be of help.....
When you click on this link, look at the very top of the page and you'll see alot of info on Neurostimulators for face pain.....
http://neurotalk.psychcentral.com/fo...aysprune=&f=26

Also, we have a forum for Spinal Cord Stimulators and pain Pump implantable units.....here's that link.... but I'm not sure if this is the type of stimulators you are wanting to check in to....

http://neurotalk.psychcentral.com/forum118.html

I hope this helps you somehow......

Truly Caring
Rae
:hug:

I have similiar situation. Have had two failed cervical surgeries and have chronic pain in neck and arm. Tried everything (nerve blocks, etc) and my doctor says the only thing that is going to help is a spinal cord stimulator. My insurance company says the procedure hasn't proven to be effective for cervial.
Was wondering if you have had any luck getting approval. My doctor says to get my company HR involved with doctor's backing and that may be the only way insurance company will listen.
Good luck

Hi I wanted to share a link that is in the T.N. forum here about neuro stim implant... it is used for O.N. and others on the thread have had the stim implant done for t.n. .. o.n. and other forms of neuralgias etc..it is a long read but some good first hand accounts and info...
here is the link

http://neurotalk.psychcentral.com/thread124048.html

PEACE
BMW

Bilateral ON and dealing with insurance....
 

Hi to all...

I am reading the posts and sympathize and empathize with all that has been mentioned. I have been suffering from ON for almost 12 years now and have gone through the rat race of doctors, meds, etc. I finally was able to have a neurostimulator implanted for my ON at Northwestern University.
Needless to say, the process to have that approved by insurance was almost as bad, if not worse than dealing with the pain itself. Now, I am dealing with pain again on the opposite side of my stimulator (Go figure, right???)
Please do not give up on getting your insurance company to approve this. Read their medical policies, talk to your corporate HR representatives....FIGHT!!! This process helped me reclaim my life and my functionality. I no longer have to depend on high powered meds to cut the edge from the pain. Now, I can adjust my stimulater (On what I now call my good side) and have minimal meds to help me cope with the potential of breakthrough pain, which does happen from time to time.
Has anyone here had issues with bilateral ON developing later on??? I know that I don't want to have to fight again, but this time, I know what I am dealing with. If anyone needs suggestions, or has any suggestions / advice to share, I am all ears!!

My best to you all in your journey.

video about PNS.....
 

http://www.painclinician.com/video/id/88
reason for sharing this is to help other understand the PNS surgery and its purpose I do NOT promote any surgeon hospital clinic . I have one since 2002 and it works good

edit to say -- I do not have O.N. I have T.N.