Health Organization for Pudendal Education

Maybe should have posted this as a separate topic Matt, but it is relevant to neuro stimulation .
It's the updated NICE guidelines to neurostimultion and is based on up to date systematic reviews and gives results and conclusions. I haven't read thru' the whole thing . . . . .yet??
The Title is
Systematic Reviews referred by the NICE Interventional Procedures
Programme on behalf of the NICE Interventional Procedures Advisory
Committee (IPAC)

http://www.nice.org.uk/nicemedia/live/1 ... /62255.pdf

Perhaps this is the most relevant part.
2.3 Efficacy
2.3.1 A case series of 18 patients reported that all patients had greater than 50% reduction in pain (measured by visual analogue scale [VAS]; 0–10 from best to worse) at 12 months, from a baseline pain score of 7.4.
2.3.2 A case series of 13 patients reported a reduction in pain (measured by VAS; 0–10 from best to worse) from a mean score of 7.4 (standard deviation [SD] 1.2) before PNFS to a mean score of 3.9 (SD 1.7) at a mean follow-up of 7 months (p<0.05). Pain relief was rated by the patients as excellent (improvement of 75% or more) in 15% (2/13) of patients, good (improvement 50–74%) in 38% (5/13), fair (improvement 25–49%) in 38% (5/13), and poor (improvement less than 24%) in 8% (1/13) of patients.
2.3.3 The case series of 18 patients reported that 89% (16/18) of patients had reduced or stopped opioid analgesic use at 12-month follow-up. The case series of 13 patients reported that 54% (7/13) of patients reported a reduction in analgesic use (exact timing of reporting unclear).
2.3.4 The case series of 13 patients reported that 69% (9/13) of patients were ‘satisfied’ or ‘very satisfied’ with treatment (exact timing of reporting unclear).
2.3.5 The Specialist Advisers listed key efficacy outcomes as pain reduction measured on a visual analogue scale; improvement in function as measured by the Oswestry Disability Index; improvement in quality of life as measured on the EQ-5D; reduction in concomitant medication for pain relief including neuropathic agents, opioids and non-steroidal anti-inflammatory drugs; and early mobilisation and rehabilitation.

Thought some of these comments were interesting
http://www.nice.org.uk/nicemedia/live/1 ... /63311.pdf

Need to add that this is for back pain BUT back pain includes pelvic pain as the area is to the gluteal crease.

Wow!! Thanks Helen -

.... And to think my Doctors consider me well researched - you put me to shame Helen! that really lifts my spirits reading this. But like you said those were more conventional cases.

I can tell you first hand that getting the SCS to cover pudendal pain is a tough project. I personally have 4 Boston Scientific reps, Boston Scientific engineering, my Doctor and his colleauges at UH etc.. All working on this and We still havent hit my major pain location (deep rectal) with any accuracy but I am set up for Noon the morrow.. They are even prepared to pull my leads down further into my back as part of the new strategy. Plus they have a new algo to program into my device.. I am at about 20% pain relief now... 30% more and I will sign up!


Matt

Good luck

Good luck Matt, fingers crossed for you.

Molly

I completed my Trial of the Boston Scientific Spectra 32 lead SCS today. I am happy to report that after a week of being Boston Scientifics lab rat, I was able to realize a measurable BENEFIT from the device! Therefore, I have decided to move forward with the permanent implant surgery..

That being said, the device gave me about a 55-60% reduction in pain once my team of doctors, engineers, and technicians were able to come up with programming that covered the inside of the rectum. I have noted extensively on this forum that my problems originate deep in my rectum and then radiate out to the tailbone, lower back, bladder, perineum, and upper thighs. Dr Vucetic and his team of professionals spent many hours researching my case and collaborating with people all over the country to try and help me. In fact, I had 16 individual settings programmed into my remote that controls the transmitter and leads. They told me that they were informed by Boston Scientific that I am now the record holder in the United States for most individual programs set to a trial device! We were able to get all my areas covered by these programs.

I figured out my percentage of pain benefit by factoring in a few variables to the overall equation. For example, my normal daily opiate intake BEFORE the procedure was 140mg and I was able to reduce that to 90mg once my device was programmed properly. I was able to remove that much AND still see a pain reduction. I noticed that my normal evening pain flares were significantly shortened in duration. Usually they last from about 530 pm until around 10 pm. With the SCS the flare would begin later around 7 pm and only last about 2-3 hours. I slept well considering the battery pack / trnsmitter that was worn on a belt around my back and hooked to the wires in my epidural spaces alongside my spine. Mornings saw a significant improvement with less pain in my rectum and tailbone. The biggest improvement was in my mobility. For whatever reason I had less muscle spasm in my pelvic floor, the levator ani, and perineum. I had a jump to my step that I havent had in a year. Several of my friends and family noticed this as well. I also had an improvement in both bladder and fecal incontinence... Which incidentaly I confirmed with a colorectal surgeon who told me that he implants SCS devices for the sole purpose of resolving fecal incontinence.

SITTING pain was improved, but only marginally compared to my other pain points. However, I knew going into this that the rectal pain from sitting would be a huge challenge and that I will always have to be careful and limit it until the nerve is decompressed. That said, I was able to make a 45 minute car ride to the doctor appointment today (to remove the leads, and end the trial). I did it with about a 25-30 percent decrease in pain, but more importantly a shorter recovery from that pain when I was able to get out of the car and stand. Again, the most prominent change that I noticed was that pain flares were dramatically shortened in time. While pain levels were decreased by maybe an overall 30%, its the time quotient that really stood out to me.

In summary, I was not happy initially with the SCS but I hung in there with my team of experts and gave them time to make some changes. In fact, I made them extend the trial by 2 more days (it was scheduled for removal on Wednesday) because I wanted more time with the new programs that I didnt receive until late Monday afternoon, and then I had more added on Wednesday afternoon.. Those extra days to test the system were huge because as of Weds I was not going to move forward with it. By Thursday morning I was undecided, and by that evening I was changing my mind. Then I woke up this morning and had a tremendous day all the way up to removal at 2:30 pm.

The icing on the cake came on my car ride back home after they pulled the leads out and ended my trial. I immediately noriced that unforgettable burning numb toothache in my bowels... By the time I got home my tailbone felt like someone beat me with a baseball bat. Now, as I lay in bed typing this, I am right back to square one and miss that stimulator. The good news is that I have my surgery set for May 3rd! The next 3 weeks will be tough but I can actually say that this is the first time in my life that I am excited to have surgery!!

I would be happy to answer any questions regarding this procedure. I have to say that if it helped me I think it could benefit many people here at the site.



Matt

I am so happy you have found something that will make a difference for you.....relief! It sounds like you have an excellent doctor. That is wonderful, a good doctor can really make the difference. It's super that you have less pain and also are better with bladder/bowel.

Question here, do you have rectal spasms at all or pain without spasms? I wonder if it would help with spasms. I deal with both.

Due to other things going on with my health issues, I am wanting to look into SCS a real possibility for me. I have to wait for surgery for a bit longer. UGH!Your post gives me hope though. Thank you for letting us know your good news!

I am sorry you have to wait until May, I hope April speeds by for you! I bet you are breathly a bit more easy now, knowing help is on the way!

Hi Meloria,

Long time no hear - I hope you are managing your pain as you wait for surgery. Thanks for the kind words as well
You are going for the TG surgery with Hibner, correct? Or did you decide not to.

With regards to spams - my spasms occur in the perineum. I just have horrible ache and burn that is deep in the rectum and spreads into my tailbone and lower back. Crushing pain - I really am laying here wishing I had that SCS back right now!
When I had spasms in my perineum, I would notice them but the SCS did its job by taking my mind off of them - I knew it was happening but the warm buzzing sensation I felt along with the pain and spasms made me forget until eventually it faded away.

Right now I am in 8/10 pain and back into a flare. My doctor told me that this was a strong liklihood due to the stimulation of all the nerves in my pelvis and the fact that we removed it. He said I might be in for a real tough couple weeks until the nerves "calm back down". Based on what I am feeling now I fear he is right. I have plenty of opiates to deal with that and I wont allow myself to suffer.

Meloria, if you view the Stim as just another tool in your belt to relieve the pain its a great option. I think having a successful SCS experience is largely dependent on having realistic expectations. It is by no means a cure all - it is only masking the pain and the doctor told me that I should remain vigilant with regards to protecting the nerve if its indeed entrapped. I plan to sit a little more with the SCS but I am fully aware that I risk more damage. The nice thing is you get to try before you buy!

Matt

Wishing they days away for you Matt. With those encouraging results it will be time to celebrate in May Agree with still being careful with sitting, sensible .
The team of doctors you have sound magnificent. I wanted to say arsestounding but that's rude and not that funny either. (is ar$e more a British word?)
If I understand this procedure correctly, you will still be able to have adjustments if necessary in the future; but because the devise has been set up so well you hopefully won't need this.
Does the complexity and attention to pain detail that you received show the major complexity of the pelvis and interrelated actions and functions do you think? or is it that your pain was fairly diverse? (which may again point to pelvic complexity I guess)
Thanks for this update.
Take care,
Helen

Matt, Congrats and good for you hanging in there and making them give you as much relief as possible. I know this will help future people as well. Wishing you speedy days and a great response from the surgery to implant the device.
Janet

Its morning here in the Eastern US and I woke up to significant pain. The doctors were spot on when they told me to batten down the hatches - a big storm would be coming! I am flaring in a big way, as if the nerves are crying out to have the stimulation back.
Whats interesting is that the pain is more focal and intense then I have ever felt it. It feels like its up in my rectum roughly up 6 inches or so - i know that sounds gross but its the first time I could actually "mark the spot" so to speak. It seems central or midline as well, meaning the pain is not favoring one side or the other. Before it was always a general widespread toothache feeling, where as this is more a sharp pain. The stimulation seems to have aggravated the culprit so to speak. Any ideas on what would be in that part of the anatomy that I described would be appreciated. For example, is the general location of the rectal branch of the pudendal nerve? Even though I am in pain, it gives me hope that it almost feels like I finally know where the pain is originating from since its more focal... Pain in the pelvis can be so difficult to explain..Ughh..

Helen - nope ARSE is definately not just a British thing! We say it here in my neck of the woods quite frequently (north east ohio).. Of course, as with so many other great things, it most probably originated in England! I play electric guitar (hard rock genre) and most of my idols are English! I know its off topic but its Saturday morning and I am having my coffee so give me a break .. Led Zepplin, Iron Maiden, Judas Priest, UFO, Whitesnake, Black Sabbath, Ozzy Osbourne, Def Leppard, Deep Purple, Motorhead, Queen, Rainbow, and the Cult - just a few off the top of my head! I love, love, love British heavy metal - its my favorite music! In my opinion, the worlds greatest bands hail from England (and I didnt even mention the Beatles, Rolling Stones, or The Who!!!)..

Ok... Back on topic here. Helen, the Stimulation I believe was effecting many nerves in the pelvis. I dont believe the technology has advanced to the point that they can target specific nerves in the pelvis. Maybe in other parts of the body. The reason being is that when they were programming the implant they were using terms such as prism, spectrum of coverage, etc.. They were creating a prism of electromagnetic energy in the pelvis and I could feel things I never felt before - some good, and some bad.). I will ask my doctor about this. We have a great relationship that I would say borders on being friends.. This disease and my willingness to learn from him and try new things has opened up the door to this friendship I believe. He has told me that I am by far his most studied patient. Anyway, thats a whole topic in itself. I really cant take the credit because I have the best mentors in the world right here at this site (JMIL, Helen, Violet, Karyn, Calluna, Stephanie, and Lindsay just to name a few and everyone else for that matter!!).

Janet - Thanks so much! I am very excited about the pending procedure but I am also very tempered as well. Lets not forget that while it helped me, it still didnt cure me and I will be dealing with significant pain. It is just another tool to be used in conjunction with all the others in my arsenal. In fact, it was this premise that helped me make the final decision to have the "permanent" procedure done.