Doc suggested Sacral Nerve Stim for PAIN and frequency? CONFUSED HELP !

[crkshnks79]

Im reading alot on our website that is saying that Sacral Stim is not for pain , but the pain m. Doc I saw today gave me a Medtronics packet explicitly stating " FOR CHRONIC PAIN " , so now Im totally confused . This doc told me that while it does not work for everyone that it IS used for pain , and that the specialist he advised me to go to has had several successes w patients who have Vulvodynia and that there were a couple patients who's quality of life significantly improved . He also said that there is a possibility that it could help my frequency . But the basic gist of what he was saying is that it helps PAIN and the Medtronic brochure specifically states its for chronic pain . So which is it ? I am not naive enough to think that there is any MIRACLE cure , and the doctor had said that it may not work for me . I dont understand why Im getting such conflicting messages on this ? Has it been recently approved for the use of chronic pain ? Or is what the Medtronics brochure BS? If anyone has any advice Id really appreciate , Im so confused .....
Lauren

[Sarojini]

Medtronic makes several different types of neurostimulators - the InterStim is one of them, and it is for urinary urgency. However, they do make other types that are implanted differently, and these are used to treat pain in several conditions, such as reflex sympathetic dystrophy (RSD) and other things. Some pain management doctors try to use these for pelvic pain as well, and the results are mixed.

The main thing to do is READ all about the various types of neurostimulation that are out there, so you understand the similarities and differences and can make an informed decision. The next thing to do is, if you decide to try it, you MUST make sure your doctor is experienced in implanting these devices - make sure to ask how many he/she has done, what the results were, and whether you can contact another of his/her patients who had it done and likes it.

[crkshnks79]

Thank you Jen , I appreciate the advice ! Im glad you cleared that up for me , I didnt know that there were several kinds . It has been suggested that I could be a candidate for TENS but I wanted the help for the pain more so then the frequency. Ill be sure to write a list of my questions when I meet the specialist who does the implant and what not .

Lauren

[glass1/2full]

Hi, everyone,
I know that I need to talk to my insurer and my doctor's office directly, but as it is the weekend and they're not available I'm reaching out here. My urologist and I and my husband have decided Interstim is the next best step: my question is whether others have had any problems getting the Interstim approved through insurance companies. After 7 years of IC now complicated with fibro, chronic myofascial pain syndrome, and TMJ, I am at a wit's end place -- surgery for the TMJ/cmfs made a major difference (although it is considered risky, like the Interstim) and I am ready to take the step. What I am trying to figure out is how long I will need to wait in order to get the approval. Thanks so much.

[glass1/2full]

Sorry for the second post: in terms of the Interstim, can anyone tell me how long it took for them to considerably return to work after the permanent implant? I am going to take a brief leave between the temporary and the permanent and had planned on a two week leave post permanent but want to make sure I'm being realistic. I feel lucky that I can try and continue to work -- one of the reasons we're going to Interstim is that I am increasingly at a point at which without a major intervention/change I'm not going to be able to continue.
Thanks

[Sarojini]

Ok, I'll try to answer the questions from both your posts here :)

First of all, regarding insurance... my insurance company refused to pay for the Interstim, and then my doctor called them and they reversed the decision and paid for 90% of the cost. Then, a few years later when my battery died, they paid all but $700 to have a new device implanted! It turned out that the first time, there had been a mistake in how my doc's office staff coded the procedure, and once he straightened them out, it was fine.

The two tricks I've found are to make sure your doctor (1) has you do a voiding diary and/or a urodynamics study before he/she submits the preauthorization to the insurer, and (2) codes the request so that it says you are getting the Interstim for intractable frequency and urgency (NOT IC). The reason is, the Interstim is not technically approved by the FDA as a treatment for IC yet, and thus is classified as experimental when it comes to us ICers... and as a result, many insurers won't cover that. However, if your doc codes it as for "severe frequency and urgency" (even though you do have IC), which is what the Interstim IS approved for, then it should be fine. Also, the voiding diary will help... your doctor can submit it along with his request to prove that you're in the bathroom ALL the time.

As for how long I took to recover from the permanent implant, I think it was about 7-10 days. It was not as long as I'd feared. Your two-week leave should be more than enough - of course, we are all different, but in general many people find that two weeks is plenty and many have returned to work sooner.

Hope that helps! :)

[bladder]

My doctor is trying to get me in to see a new urologist who is doing sacral nerve stim. I am nervous about this. I have been struggling with IC for over 3 years. My current urologist is well known for treating IC and he wants me to see this new doctor due to exhausting treatment plans for me. I am very apprehensive. I have pain issues mainly. I can deal with the frequency and urgency. In fact my IBS symptoms have been worse than IC lately. If I can get the pain under control on a daily basis and during severe flares...life would be so much better.:confused:

[Salsa]

My doctors have recommended I have two put in. Interstim and then another one for pain. The one for pain has 16 leads as opposed to the 4 (I believe) leads on Interstim. I am gathering more info and am thinking about doing it. I've had enough!

[gatorgal]

I have heard of more than one lead with the interstim being used, but I think most of the time it is one lead going to sacral nerve #3 I would like to look into that out of curiosity. Do you mind me asking what your doctors name is?


I did have the insterstim implant and it has gotten rid of 95% of my bladder pain. Mine is only connected to one nerve. One thing I learned is sometimes my bladder will get bored with the settings after about a year. the medtronic rep will place new settings on my interstim and the pain will go away again.

I just happened to be one of the lucky ones without complications
good luck with your decision

[glass1/2full]

Thank you so much. I have been able to confirm that my insurer will pay for the procedure, and I'm set for next week. I know it's controversial, but I've done significant research and have had other opinions. This is the route we've decided to take, and I hope that the test/trial will be successful so that we can proceed with the permanent as well. I appreciate all the responses here and am sure I'll be logging on lots between now and Thursday and the subsequent recovery and hopefully permanent implant, too.
Here's to a bright new year for all of us.

[glass1/2full]

Just chiming in to say that I had the trial Interstim session start Thursday: the procedure was done in the urologist's office and was truly relatively painless. The response in terms of frequency was almost immediate: my husband looked at the void diary and couldn't believe it (neither can I!). Today is a little worse in terms of pain that is returning, but if the product can control one of the issues (IBS, pain/PFD, IC), I will be ecstatic.

[musiclover]

I don't know too much about that particularly, but I know PTNS is a way to stimulate the tibial nerve that leads to the sacral nerves and it helps both frequency and pain. I don't know if that info helps at all, but I think those nerve pathways lead to both frequency and/or pain.