Hi all,

I am a new member! I had a consultation earlier this week with my pain doctor and we have decided to proceed with the Boston Scientific stimulator trial. First the paperwork, insurance, psychologist interview and hospital board review, of course, but hopefully in about 6 weeks I'll be having the trial leads put in.

My history:

Starting when I was about 12 years old I started getting neck tenderness and nagging headaches. This pain gradually increased until I was about 18, by when I was having constant pain and bilateral headaches. The pain is always there to some extent. Sometimes is a 2-3 on a scale of 1 to 10. Several times a week it will exacerbate to a 5-7 level. Once or twice every 2 weeks it will go up to a 8-9 level. Sometimes it exacerbates for no reasons that I can pinpoint, but I do know certain repetitive motions (looking up and down or side to side) will make it worse, as does driving, sitting on the couch, singing, and doing pretty much anything active like hiking, birding, kayaking or photography (all of which are my hobbies by the way).

I have tried dozens of medications, therapies, procedures, specialists, etc (let me know if anyone's curious of my lists and I'll post it). All told, the only thing that has works 100% is the occipital nerve block and I have been diagnosed with occipital neuralgia. The doctors wanted to try everything else before looking at the stimulator. I am now 30 years old and, as I mentioned, that's what's up next for me. My pain doctor feels I am a good candidate to get relief from the stimulator, but obviously we won't know for sure until we try it.

I know my pain levels are far below what most people using a stimulator have experienced (both in pain level and how chronic the pain is). Despite my pain, I do feel lucky when I read some of the stories that others have shared. I am scared and excited, but more excited. I've watched the educational DVD and had a 2.5 hour meeting with my doctor Tuesday to discuss all the gory details. Makes my stomach turn to think of what the procedure entails, but I'm certainly willing to give it a try if it could potentially help!

I know my husband will certainly be happy to have "me" back more often. I don't have any kids, but our 3 cats and 2 dogs will be happy to have a more active owner too, I know. Let me know if anyone has questions for me. I know without a doubt I will have many questions for all of you as I get started in this process!

Thanks,
~Keri in Vermont

Welcome!

I'm sorry you've been battling this since a very young age. I certainly understand the frustration in trying every possible treatment without getting relief. The SCS is usually considered to be the last option and this seems to be where you are at.
And yes you are right in saying that the process of the SCS is creepy to say the least.

I must be honest in saying that I don't really know much about Occiptal Neuralgia, and I'm not quite sure as to where the leads are placed in your situation. Will they be placed at the base of the head, or more toward the C-1, C-2 area?

Let me refer you to the Trigeminal Neuralgia forum where the SCS is discussed in alot of detail. Occipital neuralgia is also discussed here as well.
Here's the link to take you there:

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

Feel free to copy your post over there to see what type of input you'll get.
I'm very interested in the input you'll receive, so please come back here and let us know. You could teach
Our good friend Burntmarshmallow would be one of the 'go to' people to help answer your Q's

Please keep us posted! It's great to have you,
Rae

Keri,

Welcome! I wanted to chime in as a young SCS patient (I'm 34 and just got my implant not quite 8 weeks ago) and to tell you that my "chronic-ness" is also similar to yours, so you're not alone, and since there are at least two of us I'm going to say we're just as abnormal as the rest of the wonderful people here on the forums

I hope this process brings you back to full-time "you" (and I and my hubby especially know exactly what you mean), and I can also attest that my 4 cats are thrilled (in a cat-like way) to have their mom back and able to react to them whenever they get a random need for a human! If the other stories here and my own experience are any guide, there will likely be many more highs and lows throughout, but the goal of relieving the pain and taking back control over your life is sooo worth the process. Good luck and here's hoping you get some relief very soon!

Jen

well said Jen

Let me start off by welcoming you to the community !
Hopefully you will find answers to the many questions you will have (I know how hopefully everyone here has been to me )
I'm about 7 weeks in on the final implant of my scs device (medtronics adaptive stim)
When I say that the people here are more then willing to help with experiences and knowledge of having been through the whole thing. Again I can testify to that because I'm not sure I would have been so prepared had I not met these kind folks here that helped me through the whole ordeal.
As for the pain (commonly referred to as the green eyed monster around these parts anyway)
I'm not sure where I would have ended up had I not had my implant done when I did.
It has given me so much back that I couldn't see I had lost. The greeneyed monster had started to consume me more and more every day and was taking me away from my wife and little girl. I was so elated the first time a couple of weeks ago that I was able to sit on the floor and play a game with my 7 year old who had never seen me be able to do that and she looked at me and said daddy are you sure your going to be able to do this with me ? I cried because she had never had the joy of me playing with her like that.
So has it helped me YES has it helped my family YES would I go through all of it again YES.
Does it take all the pain away No but it sure does feel good to have a little more of my life back again!
So please remember this The only dumb question around here is one that is never asked !
Messy Mark©