Good results from Sacral Stimulation

[Faith]

Quilter,

So sorry to hear your surgery has not helped your pain. I have a lot of the same questions you do as I am considering a Spinal Cord Stimulator trial placement (Boston Scientific Precision Plus). I talked to someone who has this device in Austrailia but is not on the forum and she has improved 40% she says. She can sit with a cushion a little. She still has flares, but they are more controlled. She said the biggest thing to remember is that this is not a cure, but a form of pain management. I specifically asked Dr. Hibner (because I am considering having surgery in January if I don't do the stimulator trial) and he said he has had patients who have the stimulator and he can still perform surgery on them. (I know this is not your plan as you have already had surgery thoug). My concern is that if an MRI is developed (like the Potter but 100% accurate) for having PN or other pelvic nerve entrapements then I don't believe we would be able to have the MRI with a stimulator implanted. And this is one of my big concerns as I am just almost 30 yrs old. There could be a lot of advancements in pelvic pain in my time and the sitmulator would possibly not allow me to have further treatment. Also you have to be careful of manipulations in the pelvic region as the stimulator leads could move. So this would limit the kind of PT or chiropractic care you could have. Of course the stimulator could always be removed if a new MRI comes out or a new type of procedure that the stimulator would interfere with.

My pain doctor doesn't want me to have surgery because he sees 100's of bad surgery outcomes, but at the same time the stimulator in my opinion is a last resort option as it has definite limitations. My pain doc says he thinks SCS will become more of a first line defense for chronic pain especially CRPS (which I have), but in my opinon it seems like the step you take after failed surgery. Of course untreated pain can cause long term effects on the body (like CRPS) so I think we have to focus on getting the pain under control. I don't know....there is so much to think about, isn't there?!

My pain doc has done SCS for pelvic pain (which is FDA off-label usage), but I don't think he has ever done one for pudendal neuralgia which really concerns me. It's my understanding that if you get 50% relief from the stimulator it is successful, but I am trying to decide if I will be able to accept 50% when there is a chance for greater relief of pain via surgery. Sorry I don't have a lot of answers for you, but just wanted to let you know I am right there with you Quilter!

[quilter]

Faith- Thanks for the additional info and things to consider. I should hear from the Medtronic nurse tomorrow to get more questions answered. The Medtronic book states that only with their device can an MRI be performed, but I'll ask her about a sacral stim and MRI/MRN. I know a patient who this doc implanted a SCS in 3 yrs ago for PNE pain; we'd lost touch but spoke 2 days ago. She's still doing great pain-wise, takes no narcotics, only Cymbalta & Topomax because they seem to improve the relief from the stim, and says it's the best treatment she ever did. Her bladder was removed years ago for severe IC and she pees through a tube, so this is just one more device in her life and she takes it in stride. Due to other health issues she's not a decompression candidate.

With the pudendal.info forum gone so is all those years of info & patients on this topic, so I appreciate all the feedback I can get. Thank you!

[Christopher]

Does anyone know where you could go to have the sacral stimulator surgery? Is this something only being done in certain specific cities, like the pudendal release surgery? Or is this more common that that?

I am very interested in this, actually. I think it could help me; my issues are very tied to the sacral roots, IMO.

Christopher