sacral nerve stimulation

[Phoebe]

I am looking for information on Sacral nerve stimulation. It is a surgical variation of TENS that involves permanent implantation of elctrodes and a unit emitting continuous electrical pulses. It is a relatively new and experimental procedure. After many months of unberable pain, my uro is sending me to Calgary, Alberta to see a gynecologist who specializes in pelvic pain. My first trip will be a consultation, the second a trial unit and the third, if the trial ones proves successful, a permanent implantation. Has anyone had this done? Do you know how high the success rate is?

looking for answers, Phoebe

[louise]

Hi Phoebe,

I don't have any answers for you but I wonder if you would mind either giving the name of the doctor here or e-mailing his name to me. I live in Edmonton and my uro has mentioned about referring me to a doctor in Calgary for my terrible constant IC pain but I don't know his name. I am seeing my uro in the next few weeks so it would be very helpful to know the name of the doctor in Calgary. Thanks very much.

Louise
RSMonty@TelusPlanet.Net

[Maureen]

Phoebe,

For more information look at the "medtronic" site. Search medtronic and bladder. This is the manufacturer of the device. There are many of us here that have the device so come back and ask us any questions.

[DebbieB]

Hi : Phoebe:

I had the InterStim Implant done almost three years ago..
I hope you know that the InterStim is not for IC pain ..
It is for frequency and urgency!!!
There is a new device is called SYNERGY®SYNERGY ARTICLE
The website for this is http://www.medtronic.com/neuro/paintherapies/pain_treatment_ladder/neurostimulation/stimulators_stim_sel/neuro_stim_stim_sel.html

The Website for the InterStim is at www.interstim.com (http://www.interstim.com)
Please read all you can on this device ok..
I would also suggest that your doctor that is doing this procedure has lots of experience in this procedure and ask if you can talk to some of his patients that had this procedure done..

There is lots of doctors that are giving misled information that it will take all your pain away..
Lots of cases of many people posting on the boards are that they did not get any help with their pain..

I am one and lots of other ones that have posted have had our pain go away with this device..
You do have to do lots of adjustments to as alot of us do not get the right setting at first...

Another thing to remember alot of people think that when you have the device in a few weeks that they are going to be back to a normal life, but with any treatments or devices it will take time as I said it took me almost a year with lots of adjustment to get the setting to where it work for me...
I am doing wonderful with the InterStim and I am back in the working force again...

Phoebe go to the website and read all you can and ask as many questions as you can ok..
You will read alot of pros and cons on this procedures on these board but remember most of these ones posting did not have wonderful results with the device and alot of the ones with wonderful results don't come back and posted about their success which I wish they would so many people can read in time this device may be the answer for them as it was for me!!!

All the best and I wish you well on what you decide it is a big decision and ONLY YOU can decide on that Phoebe!!!

~~~~Debbie~~~~

[shel]

I went to a pelvic pain specialist that REMOVED my sacral nerve. It helped my pain tremendously!!
HUGS

[lady]

Hi Shel, I also had the trail spinal cord stimulation put in last week. And i am having it removed tomorrow. It has helped me also!! I am still a little sore, and tender in my back. Was it painful to have it removed? I hope the doctor will put this in for me because it did help me so much.
Just wanted to see how many people it has helped and should i have it put in.
Hope everyone has a pain free day! :)
lady

[lady]

I have a question, i am getting ready to have the implant put in. And i was wondering if you are admit to the hospital after the surgery? I for got to ask my doctor. I will have to do this, just didn't think about it at the time. And i do work, i didn't ask how long i will be out of work with this also. Now it is getting closer to the time of me having it done i am thinking of all of these questions. I will have to ask him to i am sure. Its the weekend and i was just thinking alot about it. So if i can get some answeres here it will help me till then.
hugs to all :grouphug:
hope everyone is having a pain free day!
Lady
ladysquirley@aol.com

[lotsofgirls]

Hi Pheobe

I live in Calgary and I think I see the dr you have been referred to. Let me know if you need any info,
Cath

[sissylala]

hello everyone,
i seen the post on the spinal cord stimulator & just had to post. i have had mine in for almost 3 yrs & it was one of hte best things i ever did for this horrible disease. i was afraid at first & yes the trial felt like i had major back surgery, but in the end it was well worth it. also the people from medtronics are truly awesome. all the ones i've had to see ( which has only been 5 times in 3 yrs) have been truly compassionate. i don't know why or how i got this horrible disease but thank god for all the scientist who work hard to help us!
love,
monica

[KIM W]

Hello All, I Received My Test Stimulator In Feb. And My Perm. In March. The First Couple Weeks I Felt Like It Was A Miracle, Now Going On The 6 Week The Symptoms Are Coing Back. As If I Do Not Have It Now. What Should I Do? I Have Been Back For 2 Ajustments, But The Urgency And Pain Are Coming On Strong. I Went Back To Work 3 Weeks After The Surgery And Now Where The Device Is I Am Having Alot Of Tenderness And Pain (slight) The Uro Seems To Think It Is Normal. But As Of Today I Can Now Feel The Stimulator When I Sit Down. Can Any Of You Relate?
Thanks So Much

[tigger_gal]

Kim,
Please call your doctor and get reprogrammed, some times that happens... Have you lost any weight? that could be the reason you feel it. I felt mine for some time then I lost alot of weight and really could feel it.. You eventually get used to it.. It took a good 3 months for the pain to completely go away, form where the ipg is it moves when you move and therefore has a hard time staying in place.. dose that make since ? lol The interstim is not designed for pain at all, but it shoul help you with your frequency and urgency, it may take a coupld more reprograms..
hugs
Brat

[DebbieB]

Hi Kim,

I agree with Brat!!
I would go for another adjustment some time it take some time for the adjustments to work as well, I would ask your doctor how many electrons do you have working you have four of them...
Also maybe your setting is way to high on the pace maker or on your remode control also could be set to high..
These are things you should ask when you see him..
Also March is not that long with the InterStim Implant you have to have patience it is not a over night fix in any way..
It is nothing like the trial in any way as it the pace maker is implanted inside of you now and the stimulation is much different it is not as strong as it was with the trial
As for the tenderness And Pain around the pace maker is normal and yes I had that for some time, even with it in almost six years I have that feeling at times..
Is there any redness around that area at all that is one thing to look out for infection...
Brat is right the more you move the stimulation changes and you are back working and doing things more..

Hang in there Kim..

Hugs, Debbie

[Prinny Joy]

Wow, it's great this was already approved in Canada, I'll be first in U.S. but it's not a medtronic device, I think, no quote but ANS or something abbreviated like that, not TENS. Will keep you posted on how it works here for me. Will take a couple months befire I get the real thing though. Please pray for me. I'm hopeful!

[trytosmile]

Glad I found this thread, waiting for an appointment myself with a specialist in Toronto to discuss Sacral Nerve Stimulation. Now, I've been waiting since January and still no date, was told this could take a while but this long !

Apparently this specialist also does Botox treatments for IC.

[emilyrose197377]

Lady you don't stay over night in the hostipal. atleast I didn't.

[moelissat]

hello everyone,
i seen the post on the spinal cord stimulator & just had to post. i have had mine in for almost 3 yrs & it was one of hte best things i ever did for this horrible disease. i was afraid at first & yes the trial felt like i had major back surgery, but in the end it was well worth it. also the people from medtronics are truly awesome. all the ones i've had to see ( which has only been 5 times in 3 yrs) have been truly compassionate. i don't know why or how i got this horrible disease but thank god for all the scientist who work hard to help us!
love,
monica
Are interstim and spinal cord stimualtor the same thing? I am trying to decide to go for the one week trial of spinal cord stimulator. Does it help with pain and urgency? This is such a difficult decision to make.Thanks for any input! Melissa in Georgia

[verdicries]

i'm curious about this too...are they the same?

[DebbieB]

Are interstim and spinal cord stimualtor the same thing?

Well the InterStim Implant is mainly for frequency and urgency and retention and it does not help you with the pain ..
Also a web site to read about the InterStim Implant is at www.interstim.com
As for the Spinal cord stimulator is for pain control here is a web site that will explain it better to you..
http://www.ans-medical.com/patient/basicsofscs/index.cfm

I have had the InterStim Implant now over eight years and was told right up front it was NOT for pain , I am one of the lucky ones that it did help with the pain as most of my pain was from my pelvic floor dysfunction, I really think it really depends of what kind of pain you have ..
There are other that were help with pain and many on this message board were not help with pain ..

I hope this information has help you a bit ...

Debbie

[moelissat]

Thanks for the info! Melissa

[akrose]

i had the trial sacral nerve neuromodulator implanted in my sacral spine beginning of April 2007. My biggest problem is pain in the urethra area. It did not help, nor did it change urinary frequency and urgency. So I did not have the permanent placed. Sorry, not a positive end to my story, at least so far, ask me in August--I am planning on a positive end to my story.