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Posted 8/10/2009 8:14 PM (GMT -8)
Has anyone had a spinal cord stimulator implanted for nerve pain in the head (specifically occipital neuralgia)? If so, what was your experience?

Any information is appreciated.

Thanks!

Posted 8/10/2009 11:01 PM (GMT -8)
I haven't had one implanted on the spinal cord itself but I did try having stimulators placed directly on the occipital nerve as well as the super-orbital area. I had thin metal rod-filament things placed across the area(s) and an external pack (wired because I only did the trial for each) with which I could adjust the intensity, frequency, pattern, etc of the stimulation. Unfortunately neither helped and they were essentially what conclusively ruled out neuralgia for me. However, the procedure was pretty simple and not too unpleasant and, if they had helped me, I wouldn't have felt uncomfortable having them in at all.

I'm not sure if that helps much Sara, especially with the difference in the placement. But I'd be happy to elaborate on anything. In general, it's been my experience that if you have found some relief from nerve blocks to the area that you're considering having a stimulator placed on then it's very much worth a shot.

Hope it helps!

Oh, and I've been sitting here all night replying to posts and seeing that you're listed as the most recent poster but not seeing anything by you.... It turns out you ended up on my "ignored users" list! Weird :p So if my posts seem like they're written without any consideration of anything you might've posted, well, that's why.

I've gotta get to bed, have a good night!

Ben
Posted 8/13/2009 10:58 PM (GMT -8)
Hi Ben!!!!!!!!!!!!!!!!!!!
So, they placed the leads directly on your occipital nerve? and supraorbital area? (as opposed to the SPINE to block nerve signals?--sorry, I'm a little beyond slow today! lol) That MAY be what they are planning to do, we are still in the "talking" stage here. :-)

ok, so the procedure wasn't completely horrible??? I had a bad RFL procedure in December 2008 (I called my Mom bawling and begged her to never let me do it again!) and that experience made me very nervous about doing anything else (however, the subsequent RFL in June/July 09? was done under minimal sedation and it was MUCH better)

I am very interested in learning all I can and hearing real stories about this before I go in Sept 7th to meet with the rep and doctors. I think I am also trying to figure out how to base my decision regarding the level of possible pain relief, meaning, if I get some relief but still have to take the same meds etc then is it worth the process?

Seriously? not nice! ha ha How did I end up on your "ignore" list! That's not good! Tell me, what's been going on with you?
Posted 8/26/2009 11:59 AM (GMT -8)
Hi Sara,

The ONSI (Occiptal Nerve stimulator Implant) that I was talking about consists of electrodes being placed on the occipital nerves at the back of the head, around the place you would have a GONB (Greater Occipital Nerve Block). These electrodes are placed on the nerve just under the skin and a battery pack with a computer chip in it is placed under the skin in your stomach or sometimes shoulder and wires passed through just under the skin to connect. There is also a remote control to enable you to have some control as to how much stimulation you get.

As always this works very differently for everyone. I know a clusterheadache sufferer who is thrilled at a 40% reduction in pain levels and frequency!! I also know of a Hemicrania Continua sufferer who became completely pain free with it!! However, I also know of others that have experienced varying degrees of relief in between. It also seems that relief is not always immediate and can take some time to take effect.

For myself this is gonna be the ultimate chance for any serious pain relief as nothing works for HC except Indomethacin, which I can no longer have due to tummy probs!!! I am also hopefull that it will have a positive impact on my Chronic Migraine too!!

Personally I would be wary of anything that was in direct contact with the spinal cord!!!! But then maybe I still have some things to learn!!!

Anyway I cannot be put forward for this procedure until I have tried a couple of other meds first, but am hopefull it will not be too long!!!

take care

Ann
Posted 8/27/2009 9:11 AM (GMT -8)
Sara,

In line with the concerns you've expressed about the unknown efficacy of the implants, you'll probably start with a temporary, trial implantation procedure if you decide that you want to do it. The procedure for the long-term implants really isn't very invasive and the trial procedure is less so. Most likely you'll be given a mild general anesthetic (of the two times I had this done I was somewhat awake in one case and hardly at all in the other) and then a local anesthetic at the implantation site (probably lidocaine). Honestly the actual implantation isn't even as uncomfortable as the Lidocaine injections. They'll slide two very thin metal filaments which connect externally to a battery pack/control unit that you'll carry at your waist. To keep everything in place you'll probably have a lot of adhesive bandaging on your neck and torso (the worst part of the whole thing is having all of that taken off!). The control pack that I used had somewhere around 8 different stimulation patterns programmed into it at the beginning (a tech visited me before I left the office and we tried various combinations of stimulation intensities, frequencies, and general location and programmed in different ones as "presets"). Then, you experiment with the presets and see which are helpful. Typically the trial period is two weeks and during that time you can go into the doctor's office several times to try different programming depending on your response. After the trial is done the leads can be removed painlessly during your followup visit.

Overall the trials are very easy and slightly inconvenient at worst. While the leads are in you'll have to avoid heavy lifting and activity. Some people are much better candidates for it than others (largely depending on how you've responded to other neuralgia treatments) but, if there's any potential for relief, there's really no harm in trying it. I had never responded to nerve blocks, trigger point injections or Botox and none of my symptoms really pointed to occipital neuralgia but it was still worth a shot. Even in retrospect, knowing moreso how unlikely it was that the stimulators would help, I don't regret trying.

Changing gears, I really haven't been doing well. I decided to go into the hospital last month partly to come off of the painkillers that I was on (Oxycontin 30mg TID) and that really turned out to be a bad decision. I had believed that since I was in a lot of pain continuously even on the painkillers, coming off of them would certainly worsen my pain but in a quantitative way that I could handle since I've been living with unremitting pain for almost 7 years. And I looked forward to regaining some clarity of thought and losing the unpleasant side effects. As it turned out, I wasn't entirely wrong in my predictions: my pain significantly increased, but I could cope with the higher level--as I'm sure you understand, the concept of pain tolerance rather loses its meaning when you're in constantly in severe pain for a sufficently long period of time. Consciously, my mind doesn't even really have a concept of reduced pain anymore. So my conscious reaction to the increased pain wasn't a problem--it was nothing new. However my brain or my nonconscious mind went into a sort of state of shock. I didn't feel overwhelmed by the pain but my personality and emotions just totally left me (I've experienced plenty of detachment in response to pain, but never so completely). I was psychologically "petrified", so to speak. I didn't even particularly feel unhappy about it, but it's not the sort of state that you can live your life in.

So I've started with the painkillers again, which I honestly don't have much of a problem with--it's the right decision. But I haven't wanted to be on as high of a dose as I was previously (though my feelings about that are starting to change) and I asked my neurologist if I could try tramadol again, since it's a less potent opioid. I started taking Ryzolt (a 24 hr extended release formulation of tramadol) but quickly found that it actually worsened the pain. I was even getting icepick-type headaches which I've almost never had in the past. So I recently switched back to oxycodone, taking 5mg BID (8-10 hours effect, max) and still doing very badly. I had wanted to try 10mg TID in the first place but my neurologist has been reluctant to try more than the bare minimum (which irritates me since she prescribed me 40mg oxycontin TID for more than a year without reservations and the later reductions in dosage and finally withdrawal happened wholly at my request). I just made an appointment to see a NP at JHC on Monday to get a different script (which they'll give me in the end though they'll fight me about it).

I'm really torn between either continuing to try very low doses or going up to a higher one. In the month and a half that I've been struggling with this since I got out of the hospital my relationship with my girlfriend (of 5 years) has become strained--she's having trouble dealing with my continued suffering and recently her GP and psychologist both suggested that they think that it'd be better for her if we weren't together. Honestly, I don't disagree. I've felt horribly guilty for years that she's had to go through this with me and I've told her many times the same thing that her doctors are saying. She's earnestly feeling uncertain if she ought to stay with me now. I'm hurting at the idea of losing her even though I feel like it might be the right decision. Things really have not been easy lately.

This is why I haven't been around here much recently. I'll try to check in as your appointment on 9/7 approaches, Sara.


-Ben
Posted 8/31/2009 6:00 PM (GMT -8)
Oh Ben, I am so sorry to hear you are going through all this. I will be saying prayers for you, that's all I have to offer right now. Of course you can email me anytime if you need to "talk."

I went through a similar situation, he decided he could not take me as I am and broke things off-this is a few years later and he completely regrets the decision and tells me often, but it was his decision to make. I could not fight it-I felt like maybe it was the best (although it broke me into pieces then) It was not easy for either of us. I'm so sorry you are in this position.

I can't stay long this evening-I have had the worst 3 nights in a long time. I ended up with a fever of 102 last night, chills, covered in sweat and pain so bad I could hardly lay my head down. I will check back in hopefully tomorrow.

I'm praying you get a break...and soon.

(((((hugs))))))

Posted 9/1/2009 5:40 AM (GMT -8)
So, does this thing have any relation to a occipital nerve block?  as in, if the onb didn't work for me, is that a sure-fire tell that this *won't* work for me?
Posted 9/1/2009 11:37 AM (GMT -8)
No, it's not certain that it won't work for you if the ONB didn't. But they are related in that the principle goal of a nerve block is to stop a nerve area from causing pain. This is a large part of the goal of a nerve stimulator though there are several other mechanisms by which it might relieve pain.
Posted 9/21/2009 10:42 PM (GMT -8)
***update***

I met with the rep from Boston Scientific and am going for a mandatory psych eval and am planning to go ahead with the trial SOON.

1) anyone with experience please jump in and share your experiences
2) what all is this psych eval going to contain? what are they specifically looking for?
3) what are some questions you would ask if you were in this situation
Posted 9/22/2009 8:00 AM (GMT -8)
Hi Sara :-)

I'm glad to hear that you'll be trying this soon. I'm a bit surprised to read that you need to have a psych eval before the implant trial. During the course of the two trials that I ... tried ... there was no mention of anything of this sort. I don't exactly understand how a psych eval has any relationship to nerve stim trials. My best guess would be that, if you're seeing the specialist who's doing the trials for the first time, it may be something that s/he requires of every new patient. It's possible that I wasn't asked to have a psych eval because I had seen the doctor several times in the past (as many as ten years prior) and he's somewhat of a family friend.

What sort of specialist is going to be doing the implants anyway Sara? If she or he's a pain specialist (as in my case) then a psych eval does somewhat fit the protocols that they frequently use. I'm inferring this from the nature of pain treatment--with the variety of sources of pain that they encounter (and especially with unknown sources), pain specialists, by necessity, focus more on the psychological component of pain than a specialist treating a specific physical condition. As you know, with chronic pain psychological treatment can be almost as important as more direct treatments, especially considering that their direct treatments focus on pain and their efficacy can live or die depending on patient psychology. If they're going to try an interventional treatment (eg, nerve stimulators) they'll want to make sure that it has the best possible chance to succeed.

Regarding questions, the only thing that occurs to me is to flesh out the logistics of the trial. In particular: will the rep be available (and when) to change the stimulation programs?; how long should you be trying the programmed patterns if they aren't working well?; and what are the criteria for determining success or failure (if you aren't experiencing relief after a significant period of time--or if the stimulation is worsening your pain--will you continue to try them until you reach 2 weeks (or however long the plan is) or will they be removed early?; or if you find a program that helps a great deal would you likewise continue?)?

The last question, I think, is particularly relevant. In some ways it seems best to try as many variations of stimulation as possible in the time that the trial runs. However, if you find a good pattern (and have tried a reasonable number of variants) you'll likely want to start using it in your daily life as soon as possible. With the trial your movement will be restricted and you'll be heavily bandaged and, believe me, after a while you'll be itching to be done with it. After the trial has ended and the leads are removed, if it's been successful the next step will, of course, be the long-term implants. Most likely, however, you'll have to wait several weeks at least before they'll do another implantation in the same location. Of course we've learned patience after years of suffering but, if you find something that will really help, waiting even an extra week can be tortuous.

Anyway, I'm just throwing out ideas--I'm having trouble focusing as you can probably see. I'm very eager to see how things go (I'm sure you are too!). My thoughts are with you Sara.

Ben
Posted 9/26/2009 6:12 PM (GMT -8)
I had the psych evaluation for an occipital stimulator. It was a really long questionnaire, but nothing difficult. My doc said it's pretty standard. I think Ben is right about pain doctors doing such evaluations pretty routinely. My doc is an anesthesiologist.

I was planning to have the stimulator trial, but then my HMO said they wouldn't pay. Since the trial was $10,000 and the permanent stimulator was another $40,000, I decided against it. If I knew it would work, I'd pay out of pocket in a second. Apparently, the insurance won't pay because the stimulator isn't FDA approved for headaches, although it is approved for leg and other neural pain. My doc thought it was likely that FDA will approve it in the next year or two, so I decided to wait -- after 21 years, what's another year or two?! Now, however, I just got a letter saying the doc has retired from the medical center, and thus the HMO, so I don't know what will happen if and when FDA approves it.

Keep us posted on your progress. The stimulator seems to me like my best hope for relief, even though the nerve blocks (used as a diagnostic for the stimulators) didn't help me.
Posted 9/27/2009 10:27 PM (GMT -8)
A psych eval is mandatory with the insurance company that I have. They (the PA and the rep from Boston Sci) said that this is very common and they want to know 1) that you are mentally capable of understanding how to work the "system" (charging the battery, using the remote etc) it is a very expensive procedure and they want to make sure its going to be properly cared for 2) the rep from Boston Scientific said that they are also looking to see if you are (in my own terms here) desperate "this has to work..I have no other choices" or extremely pessimistic "this is never gonna work, why even bother? 3) its a "serious" thing to have something implanted like that and your "mental status" needs to be evaluated to see that you can handle it emotionally (in order to recover properly)
This is what I was told...not so much my take on things :-)

I see a pain management doctor and have seen him for years, they really made it sound like the psych eval is "no big deal" but that it's mandatory. I haven't given them any reason to think I need one in particular..lol Actually, the lady that schedules all this says that one insurances company lets you do a computerized hand held "quiz" instead of a psych visit.

I have to call them with my new insurance information and see what happens now. I am a little concerned about the cost because I can not come out of pocket "too much" and am not trying to get my hopes up until I know what to expect.

If things go as "planned" I pass the psych eval and we schedule the trial stim (outpatient- takes place in his sterile surgical suite withing his office--where he does nerve blocks and RFL) the TRIAL will last about 4-5 days. IF IT WORKS they expect an average of 50% pain reduction. They told me not to expect to completely eliminate medication once the permanent one is implanted shortly after the trial ends (of course that is if it works)

The rep with Boston Scientific gave me his card with phone numbers, cell included as well as his email. He seem to be a very nice guy and genuinely wanting to help (he told me he is NOT on the sales end of things--of course they want to "help" lol) He works very closely with my PM doc and said that feels comfortable with him and completely stands behind his abilities. So, I dont feel like there would be "issues" if I needed changes in programming etc.

I do not know where the generator will be implanted since the leads go to my head (its 'easier' to place the battery for back patients since the leads don't have to be so long) I will need to find out where he plans/suggests to implant the battery, Will my head be shaved (in the back) for lead placement? What are the actual recovery times (from someone who's had it..not a rep telling me).

MY MAIN CONCERN is my daughter, she just turned 1 year old and I will not be able to lift her and my husband can not take off several weeks. I will have to have lots of help as he mentioned that "lead migration" is a huge issue until scar tissue builds around the lead. (Also said I would have to wear once of those neck brace/collars to try to keep from pulling the lead--sounds kinda tough) I figure I can do this for a few days to figure out if its a possible chance for some relief.

If I do have the trial and it works...I will want the permanent one done ASAP lol.

I will keep everyone posted.

Thank you both for you response!

Posted 10/7/2009 9:30 PM (GMT -8)
I had my psych eval on Tuesday and it was VERY simple. It was a hand-held computer device that had questions loaded where you answer 0-10 based on pain level, it had questions regarding depression and anxiety as well as a few "far out" psychosis type questions.

I will be scheduling the trial stim implant probably tomorrow and will actually have the trial done within the next month :-) I'm anxious and nervous but being positive and hoping that this will help me have a better quality of life.
Posted 10/11/2009 1:54 PM (GMT -8)
How is it going Sara???
Posted 10/12/2009 12:03 AM (GMT -8)
I am waiting on the doctor's office to call and schedule the trial stim-they said they would have me in within a month. I feel like its taking forever though :-( its been a really tough 2 weeks, especially with starting classes.

How are you feeling?
Posted 10/12/2009 3:43 AM (GMT -8)
Aw Sara, sorry to hear you are having such a hard time! I just hope they get on with things quickly for you!

I am a bit better at the moment am on Pregabalin, this is the last med for me to try and then I have tried everything!! Hopefully it will not be too long before I see the surgeon myself to be assessed for the ONSI, but I bet I don't get referred till after I see my consultant at the end of November!!!

I really hope that your head gives you a bit of a break to help you cope while you are waiting!!

take care

Ann
Posted 10/13/2009 11:53 PM (GMT -8)
Interesting article on Occipital neuralgia.

http://sarasotaneurology.com/2008/08/12/occipital-neuralgia-many-symptoms-of-headaches/

 

Posted 10/13/2009 11:57 PM (GMT -8)
Hey Ann!
My friend told me to try Lyrica (same thing you mentioned) but honestly, I'm ready to move on...I can't "try" one more pill right now...:-(

I have been in a lot of pain the last few days and I'm really just trying to hold on to the end of my rope! lol

I am THRILLED its helping you at least for right now. Its amazing how long a month or two feels when you are in pain and thinking that something can provide some relief.
I'm sorry to be so negative and funky tonight..It'll pass!

Talk to you soon :-)
Posted 10/23/2009 12:54 PM (GMT -8)
an update for anyone who may be following:

I got Wednesday morning for the trial stimulator :-) I will post with "results" as soon as I am up to it!
Posted 10/26/2009 7:08 AM (GMT -8)
I'm excited for you Sara :)
Posted 10/27/2009 6:16 PM (GMT -8)
me too Ben!!!
I go tomorrow morning at 8:30...I will be MIA from HW for a bit, but will have someone update for me :-)
Posted 11/4/2009 4:56 AM (GMT -8)
How is it going Sara?

I have finally got a date to be seen by the Neurosurgeon to be assessed for ONSI (Occipital Nerve Stimulator) which is Tuesday 1st December 2009!!!!

take care

Ann
Posted 11/12/2009 6:16 PM (GMT -8)
I had the trial on Oct 28th, it went well. Removed 7 days later and I will be getting the permanent implant on Dec 14th-MERRY CHRISTMAS TO ME!

I will have a better update later. I have a lot going on right now. Be back soon

I hope this finds you all well.

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