Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

SCS - has anyone had Occipital Nerualgia relief?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:31 AM in Pain Management
Has anyone had relief from Occipital Neuralgia with a SCS - and if so, was it apparent during the trial, or later with the permanent? How high were the permanent leads placed?

My husband is in the middle of a cervical SCS trial. The leads were inserted up to around C-2. He has had years of debilitating neck(C6-7), shoulder, arm, and hand pain. However in the last year he has also developed occipital neuralgia that is sometimes severe migraine-type nauseating pain, and other times just occipital pain and constant headache.

He thinks the SCS may be helping the shoulders, arms, hands some - but the occipital pain is still so bad, it's hard to think of anything else. It's overiding all the other pains.

The PM said they may be able to go higher with the leads with a surgical implant by neurosurgeon & possibly help the ON - But of course no way to assess during the trial, and that is the problem with making the permanent decision.

His basic feel for the device is that if it's turned up enough to feel any effect, it zaps him constantly every time he moves at all - even an arm or hand.

The rep reprogrammed yesterday, so that the neck region is receiving more stimulation, and my husband is able to do a lot of adjusting - the width, rate, and amplitude of signal. However, there is still not much neck coverage.

Leads have to come out Friday morning. I've tried to go back and read relevant posts, but I'm sure I've missed things.

Thanks for any and all input,


  • Hi,
    I currently have a permanent SCS that covers my arm pain and the top of my shoulder. It was implanted in 2007. The majority of the pain that I have now is from damage at the C-2 level. I have been going in for nerve blocks and RFA (nerve burning) every couple of months to treat my occipital nerve pain. All those procedures have taken a toll on me and after much consideration I decided to try neurostimulation to treat the ON. I just completed a trial SCS for occipital pain a few weeks ago. It was a success! I am going to have the permanent implant on the 23rd of this month. I am not looking forward to 6 weeks in a neck brace but I am very happy to have some lasting relief. I will run both SCS's at the same time and cover most of my pain.

    I wish you and your husband all the best,

  • With Melissa, more so since she has done the trial!

    The "zapping" is less of an issue with the permanent version of the precutaneous leads, but, there is still a fair amount of stimulation change.

    With your husbands issues I would investigate further exactly what they wish to do to get the lead higher and probably go that route. I assume they wish to use some sort of a surgical paddle lead, but? I do not know. We obviously can not make those choices for him!

    I have a cervical SCS, one month into the permanent version. I do not regret getting it at all. I do wish the stimulation was more stable. I still need more time till it is stable. Anytime I mention the stimulation variability to my PM he says "that is the problem with doing them in the neck" Like we get to chose what part of us screws up? If I could choice, why I do think I would just say NO!

    Again, if he has the SCS trial in place and it is covering the other pains, it may be worth going for the higher placement and hoping that the occipital pain will be coverable once done. He will still get the areas covered that are covered now? did they say that? there are also many people who do TWO trials. So ask about that with a higher placement.

    I do understand the frustration with pain laying outside of the covered area making it hard to decide. I have some areas that do not get covered well with my SCS, but chose to go for it anyway! I maintain now most days taking nothing at all for pain. Before I took six Norco 10/325s EVERYday! So it is an improvement.

    Remember it is a treatment and not a cure. Sometimes we forget that.
  • The PM said he got the trial leads up as far as they could go - bumped into a band of fascia. Any higher would require a nuerosurgeon (who he refers to). The BS rep told us that microlaminotomy was used for that - a small hole only. Also said that surgical placement was a more secure route, even w/leads, as they were anchored at top of lead rather than bottom. I've read that sometimes paddle size is an issue w/the cervical canal - so not sure which would be used. Obviously though, either seems beyond the scope of a trial. I think he could still get coverage down arms, as only the top portion of lead is "on" now - trying to get high coverage - and it still covers arms.

    Melissa - If I'm understanding you correctly, you got good occipital coverage from the trial placement; did they by any chance say how far up they were able to go? I know how happy you must be at the chance for long-term relief. My husband's had nerve ablation of the facet joints - painful. And the nerve blocks don't last long. I'm glad your trial was successful. These headaches are beyond brutal.

    I've heard some about percutaneous stimulation for ON - the paddles right under the skin over the occipital region. However, husband's PM says he's had problem with paddles moving around too much in the neck area. Plus, wouldn't cover shoulders etc.

    I wish he could post himself, but he's in too much pain. Plus no sleep again last night. We used to be so active, and his passion is (was) kayaking & flyfishing - it's been years.

  • I have a cervical SCS and I also have battled ON for too many years. I passed on the original style of SCS for ON where the leads are implanted under the skin around the base of the skull. I opted for surgery where the C2 ganglion was removed. Side effects from that surgery have created other problems which my SCS helps control that pain.

    One thing I found out in April this year, is that docs are finding they can get ON coverage with a standard cervical SCS and changing the way the signal is driven.

    I have 2 percutaneous leads and they run up to the C2 C3 area. I have coverage in both shoulders, arms and hands as well as coverage in the lesser and greater occipital area on the side where the ganglion was left. In order to get that coverage, the leads had to be programmed for a less focused spread so instead of driving the signal deep, it diffuses out further.

    Once the leads scarred in, things settled down into a much more stable pattern. Getting zapped during the trial is quite common since the leads can and do move all over the place.

    I wish the best success for your husband.

  • Thanks very much for the excellent information. I will pass on to my husband tonight. The SCS was his ace in the hole, so he's pretty down. He's been considering having the occipital nerve severed, but aside from the numbness there seems to be the chance of even worse pain after regrowth.
  • One thing I found out the hard way, is that if you sever or burn the occipital nerves, they grow back and are madder than a hornet!!! It seems the body has an incredible ability to regenerate the occipital nerves. I had the ganglion removed as a last resort and that surgery turned into 2 surgeries and tons of complications.

    Neuroscience is finding that more and more it appears people are developing CRPS from nerves that are intentionally severed.

    I am sold on SCS technology! Your husband is fortunate that they have learned so much more about SCS pain management in the last few years. It is so much nicer to have a constant buzz in my scalp than the horrid ON pain and migraines it triggers.

  • Hi J.,
    I have been thinking about your husband and I would urge him to consider another trial. Maybe with a new doctor. My leads were placed at the base of my skull and up into the back of my head. I had perfect coverage during the trial. During your husband's trial did the doctor target only the occipital nerves or try to cover the other areas of pain too? The leads I have permanently placed for my arm pain are too low to cover my head. I know it is a drastic measure to have two implanted SCS's but for me it is the only option. Please keep us all posted.

  • Hi Melissa,

    Thanks for your additional input. That's very helpful. I've read it over to my husband several times. We're going in this morning to remove the trial. Won't be able to talk to the PM today (he's having a discetomy!), but we will definitely follow up further on this. He had mentioned in recovery that any higher coverage would require a neurosurgeon. I wasn't aware that a trial could be done for a placement that wasn't percutaneous.

    Can you give me a little more info on your ON trial placement when you have time? How was the area accessed, and do you know at what level? The percutaneous approach was not able to go past C2, and even w/reprogramming, only half of the neck is covered.

    Thank you so much, & wishing you the best results on your permanent placement-
  • Hi J.,
    I will describe exactly where the leads were placed for my trial. I have two little holes at the base of my skull so I know where the leads started. If you feel the back of your head, right at the top your your neck you will feel a little indentation. That is where the percutaneous leads were placed. I had a Boston Scientific stim. For the permanent leads I will have a two inch incision and the leads will be sewn in. I will have to be way more than careful during the recovery because I am determined to have the leads scar in perfectly. I will wear the brace for at least 6 weeks. As far as programming goes, trust me each rep. has their own way of doing it. Some are better than others. Just because one rep. can't get the coverage does not mean another rep. will fail. I have seen at least 8 different reps for reprogramming over the last 4 years. In fact, when I was in the recovery room for my ON stimulator getting programmed I asked to rep. to reprogram the SCS that I use for arm pain and he gave me a new program that gives me some good coverage for the top of my shoulder. Cool! No rep. has been able to do that for me. Like I said, it has been years of trying. Regarding muscle spasms caused by "jolts" - unfortunately that happens to me. I turn down the stimulation when it happens. I get the best coverage when I am not moving around too much. Because the cervical SCS is very positional, I do not have very stable coverage. When I move my head around the stimulation goes up and down and sometimes it goes away. During the day I am moving all over the place. I have a very active sales job that requires me to be on the go. At night and on the weekends, when I am relaxing, I get great coverage! The SCS does not cover all of my pain or painful areas but I still consider it a successful tool. Less pain is always better.
    I hope you get another trial. Ask for more than one rep. to give the programming a shot. I have a good feeling that your husband will get relief.

    Take care,

  • Thanks Melissa for all the information. You'll be going in very soon for your permanent, right?! The 23rd, I think. We wish you a speedy and successful recovery.

    It's so great that you are able to keep going in an intense sales job in spite of everything. My husband misses work so much - the stress, even!

    If your trial leads went up that high, and you'll have a 2 inch incision, I wonder if your 2nd stimulator will still be in the vertebral canal? I know that paddles are sometimes placed directly under the skin for ON. Obviously, there are still things about the whole SCS process I'm not completely clear on - hopefully the next appt w/PM will clear things for us. The first question is exactly what PM meant in recovery about a neurosurgeon needed to go any higher - if he could have a trial for that, and what type of access and lead "anchoring" there would for a permanent higher placement.

    Anyway - again, all the best to YOU during your procedure and recovery. Six weeks is a long time for a brace, but you're right - a short time investment for long term good relief. You should be in good shape by late summer, hopefully. I look forward to reading about your progress!!

    Thanks again,
  • Hi J.,
    Thank you for your well wishes regarding my SCS surgery on the 23rd. I could use all the support I can get. Very few people understand chronic pain and even less understand the need for a SCS. I am praying that your husband will someday be back to work. I enjoy what I do but I have many days where I wish I was home and using my heating pad or ice. I believe the reason you were told a neurosurgeon needed to do the next trial is because they are planning for paddle leads. As far as I know, a PM doc. can only place percutaneous leads. The surgery is much more complex for paddle leads. However, paddle leads are way more stable. My only experience is with percutaneous leads. After my first SCS in 2006 I experienced lead migration. I had to have an entire new system implanted. Not good! I believe lead migration is much less of an issue with the paddle leads. Keep us posted on your husbands progress. You are both in my thoughts and prayers.

  • I was so thrilled to stumble onto this conversation! (I hope I am posting correctly.) So many SCS users have lower back pain. My lower back is great - my major pain is left occiptal, down the left side of my neck and into the back of my shoulder and left arm.

    I am a paralegal and working full time, but with ice on my neck most of the time and a lot of leaning back onto my high-back chair and 'whining.'

    I am scheduled for an SCS trial on July 1, 2009. As I said, my major pain is occipital and I am really concerned that my pain specialist won't be able to get the leads up high enough to help. I have had a double fusion at C4-5-6 and she indicated she probably wouldn't be able to get beyond that area and that it might be necessary for lead placement above that level, but that would have to be done by my surgeon. I have a telephone conference with her on Friday and will try to clarify the matter.

    I am having trouble understanding, if she can't get the electrodes up high enough during the trial, how they determine where to place them surgically for the permanent implant, since there has been no trial in that area?

    I hope I'm making my quandry clear. Any input that might help me??

    Thanks so much - and best wishes to all of you!!


Sign In or Register to comment.