Health Organization for Pudendal Education

Why haven't more people tried this before surgery? Just curious.....thank you

cari

When I was diagnosed a year and a half ago, Dr Renney wrote in his report to my PCP doctor that neurostimulation was not usually helpful because of where the pain is located with PN/E. I think the success rate for surgery is higher, but there are people who do try it before surgery and maybe they will respond.

I think there are not many doctors who can place sacral stimulators and this is a drawback too, as it seems like you have to go back frequently for adjustments. I am interested in trying one myself by the time I am 2 years from surgery if I don't see more improvement though, as I am sure they are making improvements in this type of technology all the time.

Jeanie, did your symptoms change after the surgery? Did you get any relief at all?

Hi Michaela,

I am only just starting to feel that I am getting some improvement and I am 14 months postop. Still unable to sit or stand for long, but I am gradually finding ways to do more things as time goes on. I'm trying to stay optimistic by getting out more and doing activities that I used to enjoy, even if I have to have my recliner chair to sit. I always have my cushion and ice with me too, but sometimes I do not need the ice. I can often sleep without ice now too. So there are little teeny improvements, if I look for them and I am hoping I will see more and more as time goes by. Thanks for asking!

Do you know if you had the type of stimulator that uses paddles or wires?? I think if they used just wires it is called interstim but I am not sure. Please help us if you know.

Carolyn and others

The main reason why neurostimulation is not recommended prior to surgery is that it is not a cure, it is a help mechanism. Therefore surgery may help the nerve to heal and regenerate whilst a Stimulator can only help trick the brain to change its recognition of signals from the nerves.
Surgery on nerves takes so long to recover from and the nerve takes so long to possibly regenerate that stimulation is a last resort. Having a stimulator is not only an expensive device but it also has many life changing decisions. If you have a stimulator you cannot ever have an MRI, Ultrasound, Defibrillation and many simple investigative operations have to be carefully thought about as any magnetic influences have a detrimental effect on the stimulator.
The mention of frequent adjustments is a trivial matter to be honest, this is relevant in the initial stages following implantation however it fades away after the first year. There are annual checks required on battery useage and recharging capability if applicable but generally it is not a high maintenance situation.
the biggest challenge is in the first three months after implantation where movements like raising arms over your shoulder height and weight bearing can make the leads move therefore rendering the stimulation area null and void. That is paramount!

The actual placement of the leads is so important and so is the doctor who does this procedure, you need an experienced doctor who has used this therapy often to guarantee any success. The leads are called paddle leads when they are implanted via the epidural space, they dont move so much as the tissues imbed around the leads securing them along with suturing etc. Wires are used for the interstim, which leads to more movement and less efficacy of this therapy. The best positional place is via L4/5 and tunnelled to S1-S4 this allows more coverage of all pelvic nerves.

I have detailed most of this on my thread in this area of the forum, however if you want ot know more please feel free to ask.
I have my Stimulator for 5.5 years now, it is a huge help but not a cure all.....I would not be without it though!

Thank you for this information, Amanda. I am currently thinking about doing a trial of the NS. When you do the trial, are the paddle leads tunneled through the epidural space from L4-5 to the sacral nerve roots actually for the trial as well as for the permanent placement? Also do you know anything about the dorsal root ganglion stimulator, which my doctor says is used in Europe but has not yet passed the FDA in the US. My doctor says I may be able to participate in a research study which will be enrolling soon but I am more than a bit scared of the whole thing .

I am just about to study this whole section of the forum properly. So if you have already answered this. I will find it and you don't need to reply to this

Amanda,

The main thing I don't understand is how the tunneling is done. Is it possible to tunnel from L4 to the sacral nerve roots via the epidural space? This sounds like it would damage the meninges, so I am thinking that the tunneling must be done under the skin. Is this why you have scars alongside your spine? Are they from L4 to the sacrum? I wish I could see a video of how it is done.

Thanks for all the information. After reading the whole section I have a better understanding and lots of questions to ask the NP at my appt Jan 2nd. Hope you continue to do better, Amanda.

Anyone see the new 32 lead model by Boston Scientific? My pain doctor wants to implant it in me but a few things are holding me back right now.. First - He says he is only one of five physicians in the USA that has clearance to do this procedure, AND it just got approved by the FDA. Second, I have not read too many success stories yet with these things... And in my case I havent even been officially diagnosed with anything yet! I have just been in horrible pelvic pain for almost a year now....
Matt

Jean nice
If you look up the Medtronic website there is a video which shows the actual implantation procedure.
The leads used for the trial are much thinner and different to those used in an implantation, they are not fixed and can be removed easily. The tunnelling is not in the epidural space but through the bone.
I am not sure of anyone who may have a dorsal root stimulator, why don't you ask your doctor who has done it in Europe and then you can try to find out more about the success.

Thunderman
It would be difficult to consider a stimulator if you have no firm diagnosis yet as there may be other matters that cause your pain. A stimulator is the final step normally in pain management after everything else has failed.
There are many types of leads, each manufacturer has their own versions. The reason why this one you mention is only used by five doctors is because this is so specialised and only centres of excellence get clearance to do certain procedures.
The FDA may not have had enough stats yet to approve this new lead.
If I can help anymore let me know please