InterStim Therapy - What to Expect and What You Need To Know

InterStim Therapy – What to Expect, What You Need to Know, Tried and True Tips and What You Physician or Rep May Not Have Told You

This is an extremely long post but after reading so many posts from patients requesting information on InterStim or hearing from those who have had the Trial or Permanent Implant and commented about issues that encountered, I believe it may be beneficial. I find that many posts imply that they were not told any of this prior to the surgery or may believe they were mislead or talked into getting InterStim without really understanding about this Therapy. Others mentioned pre-existing conditions that probably should have raised red flags to their doctor that perhaps because of those issues that they should not have been referred for InterStim. I hope the information I am providing will help anyone considering the device or will provide additional information to those having questions about or issues with their device.

This is directly off the Medtronic Website: InterStim should not be considered or recommended as a first choice treatment for Bladder or Bowel conditions and the patient should have tried and failed or been unable to tolerate more conservative treatments. For Bladder Control, Urodynamics testing is normally performed since it provides the most accurate diagnosis of a patient’s urinary symptoms by evaluating the bladder and urethral sphincter muscles. InterStim for Fecal Incontinence generally requires a combination of two or more assessment techniques to evaluate defecation function since there is no single objective study that can definitely assess all aspects of anorectal function. Sacral neuromodulation (SNM) is not appropriate for patients who primarily experience stress incontinence, may require an MRI, have neurogenic OAB or urinary retention, experience urinary retention due to mechanical obstructions such as benign prostatic hypertrophy, cancer, or urethral stricture or someone who is unable to operate the device. The safety and effectiveness of SNM have note been established for patients who are pregnant, under age 16, have neurological diseases such as multiple sclerosis or diabetes or require bilateral stimulation. Also, (this is not from the Medtronic site as the previous information was) persons with previous back injuries, fibromyalgia and/or leg or nerve pain may want to discuss their medical history concerning these conditions in much more detail with their doctor prior to proceeding with the implant. I would also suggest getting clearance from whatever physician is treating those conditions as I have read many, many posts on this site about how the InterStim implant surgery and/or the stimulation from the device negatively affects these conditions to the point that the device was removed but the problems persisted even after removal.

The two types of evaluation for InterStim Therapy are the basic and the advanced evaluation and are used for either urinary or bowel control issues. In both evaluations, a portable, external stimulator generates the stimulation which is delivered via a lead. Both evaluations are short term (up to 7 for the basic and up to 14 days for the advanced) and the effects are reversible by removing the leads or turning off the device. In the Basic, a flexible, thin wire lead is used and is easily removed after evaluation and only has one electrode contact. The Advance Eval uses a flexible lead with tines that anchor into place and remains for long-term therapy after a positive evaluation and has four electrode contacts that provided more programming options. The lead that is used in the Advanced Eval is the same one that would be used for the Permanent Implant Phase for patients who had the Basic Eval. Local anesthesia (numbing agent to site) is normally all that is used during the Basic Evaluation and during the Advanced or Permanent Implant Stage monitored anesthesia care or genera anesthesia may be used. Unless you have General Anesthesia where you are put to sleep, you will most certainly feel and be aware of everything your physician is doing during the procedure. This is necessary because they need to ask you what and where you are feeling the test stimulations they use to determine whether they found the nerve they selected to target. Some physicians rely solely on the Nerve Innervation Response Sensation that is visible when they stimulate the S2, S3 or S4 nerve but does not provide the feedback the direct conversation with the patient provides. There are several methods that can be used to close the entry wounds you will have during the Trial and Permanent Implantation Surgeries. If a temporary test lead is used during a Basic Eval, it may only be held in place by a clear dressing and/or some surgical tape and is easily dislodged and may actually fall out before the end of your Test Phase. For the Advanced Eval or Permanent Implantation Surgery, they may use sutures, staples of surgical glue to close all incisions. With sutures or staples you will normally have a bandage that will need to be changed and you may be instructed not to bathe or shower until the sutures or staples are removed. Closure using surgical glue allows you to shower the day after surgery and does not require a bandage but one can be worn if the area is sensitive where clothing might rub. The healing time with surgical is usually quicker than if the wounds are closed with sutures or staples.

Personal Tips:
1) Using Ice Packs 24/7 following any Phase of InterStim Surgery will reduce or eliminate any pain at the incision sites, and will prevent or minimize bruising, swelling or hematoma development. The best ones to purchase are the ones used for lower back issues and have a cloth covering with Velcro Straps that can be secured around your waist to hold the Ice Pack in place even when you are up and walking. Purchase at least 2-3 so you will always have a frozen one available to replace the thawed one you were using. This type of Ice Pack can be worn under or over your clothing throughout the day and night.
2) You may want to purchase some type of small squishy pillow to use as a cushion over the site until it heals or for the times when you may need to sit for long periods of time in a hard or uncomfortable chair. The smallest size of Pillow Pets (the children’s toy that when closed is a stuffed animal pet and when open, serves as a pillow) is perfect for this.
3) Once you have your Permanent Surgery, keep a small notebook or piece of paper with you at all times and jot down notes about your experience as you try each Program. Do not change Programs too frequently as it make take your body time to adjust to any change so allow a minimum of two weeks on each Program before deciding it is not working. The exception to that rule is if a Program causes intense pain that is not eliminated by turning down the intensity. You should divide your notes by each Program and should include the time of day, what you are doing at the time, where you are feeling the sensation and how it feels, whether your symptoms are being controlled, etc. Provide as much detail as possible and do not be afraid to be blunt or even crude in your description. Similar to word association, you need to describe it with the first thing that comes to mind such as “it feels like I am sitting on a stick up my butt” or “it feels like I am getting stung by bees” or “it feels like someone is beating a drug on my vagina or rectum (or wherever) or “I have a constant fluttering sensation, like a humming”. All these descriptions will help your programmer adjust the internal settings on your device to find your perfect setting.
4) Every Patient needs to understand that InterStim is not a quick-fix Therapy and it is rare for a patient to get their Implant, go home from the Hospital on a Program that is perfect, requires no programming tweaks and controls 100% or their symptoms. It may take week, months or more than a year of trial and error before the right Program is found that will control whatever condition the InterStim was implanted to fix. Also, the Trial device works differently from the Permanent device and someone who had great results during the Trial Phase may find that (initially) they do not get the same relief they had during the Trial. This is normal and that is when the patient enters the re-programming/tweaking phase of InterStim which is why the notebook journal is so important. You (as well are your doctor or programmer) needs to be determined and committed to doing whatever it takes for as long as it takes to find the correct Program no matter how many visits that may require.

There are only two things a Patient can change on their own thru the Hand Held Device they are given and that is what Program you want to use and the Intensity of the stimulation on that Program. There are multiple changes your Doctor or Programmer can make “internally” to your device that will change how each Program works and where it is felt. Those changes are the Program Parameters and it is important to understand what each one does and how it affects the stimulation your device provides. Make sure you ask for and receive get a written record of the different items listed below for each Program on your device whenever a change is made.
1) Program – this defines the stimulation pulses that will be delivered and is a specific combination of Amplitude, Pulse Width, Rate and Electrode Polarity.
2) Amplitude – the intensity or strength of the stimulation measured in volts. Increasing amplitude increases the intensity of the stimulation and decreasing it will reduce what is felt.
3) Pulse Width – the time or duration of the stimulation pulse. Increasing the width increases pulse duration and decreasing it will decrease the pulse duration.
4) Rate – the number of times per second a pulse is delivered. Increasing the rate feels more like a “flutter” or “vibration” and decreasing the rate feels more like a “thumping” sensation.
5) Electrode Polarity – the stimulation pulse is delivered from the Neurostimulator (battery or generator) to the nerve through the electrodes on the leads. For the stimulation pulse to reach the nerve, you must select the electrodes on the lead that best provides the stimulation and assign it a negative or positive polarity. At least one electrode (or the Neurostimulator case) must be designated as positive and at least one electrode must be negative. The negative electrode is called the active electrode; a pulse flows from the active or negative electrode to the positive. Thus, changing an electrode to active, changes the location of the stimulation. Each lead has four electrodes numbered 0, 1, 2, 3 with electrode 0 situated in the most distal location. Typically, stimulation pulses from distal electrodes are felt more anterior and more proximal electrodes are felt more posterior. Configuring electrodes depends on how the leads and electrodes are placed in relation to the nerve that is being stimulated.
6) SoftStart/Stop – The SoftStart/Stop feature allows the amplitude to increase gradually (ramp up) over a specified period. This feature is intended to increase patient comfort by providing a gentle or “soft” start as stimulation begins and reduces the risk that the patient will be startles by the start of a stimulation cycle. This feature also causes the output to decrease gradually (ramp down) when the stimulation is turned off.

This is definitely not everything a person should know about InterStim and I will be glad to provide more details and try and answer any questions someone may have. To clarify, I am a nurse as well as an InterStim patient and not employed by Medtronic. What I have provided here is information I have read from information and the programmer and patient manuals they have available on their Website in addition to information provided by my own physician and her nurse and programmer.

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19 replies. Join the discussion

Rockabye I am glad you are on here you have explained more than my rep has. I hope you have a nice weekend.

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Glad to help. I just think there are so many who may not have had as good of (or as informative) a doctor, rep or programing nurse as I have had or may not be aware of the wealth of information available on the Medtronic Website. Despite being soooooo long, I hope it gives a good basic explanation that will help.

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Thank you for your posts! Your information has been very valuable to me. I had the permanent stim 10 days ago and would have been miserable without your advice. No one suggested ice or pillows. ICE is key to comfort from pain, itching and even supports the surgery area. I haven't found the right setting yet but I have made an observation about IC and the Interstim. After surgery, I had no IC pain for 6 days. ( I think when they disrupt the nerve messages, there is a temporary reprieve from pain.) So for the days with no pain, I could feel the Interstim sensations clearly. But now that bladder pain and urethral burning pain have returned, it's very difficult to discern what I'm feeling. So IC clearly complicates the ability to get comfortable with trying settings. I'm going to mention this to my doctor next week. Im trying to get ahead of the IC pain now so i can focus better on the Interstim. I love my doctor, she has performed over 300 implants and is very selective of her patients. I did my homework and messaged some of her patients and ALL were 100% satisfied with their results. The down side is she is retiring this Fall! Her IC patients are scrambling to find new doctors. We are in New Orleans, if anyone has regional recommendations, a lot of IC's would appreciate hearing those.

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I live in Mobile, AL which would be within driving distance to you if you cannot find anyone in your state. I LOVE my doctor and the nurse that works with her. We also have a good Rep that actually gets upcoming new Reps to talk to my doctor and her nurse to "learn" the ropes. Just send me a e-mail thru this site and I can provide you with her name and some phone numbers.

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How are things going for you now? I hope all is better.

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How are you still doing? Hope all is still going well.

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Thanks for asking, I'm still not sure about the effect of the Stim on my IC. I have noticed at a level (say 2.5) where I can feel the Stim, I begin to have bladder spams that intensify to the point I must turn down the setting to .5 for relief. My heavy meds then have to be taken. I have had the last program on .5 for the last two days and my bladder hurts when I lie down. And there is no relief from frequency. I have an appt. on Tuesday. Also, tailbone pain has become an issue. My sister brought me a large 12" x 12" ice pack and its helping a lot with sitting. The surgery sites are healing well. No pain there, just tender. I was just asked to participate in a trial medication study for IC pain in Mobile. It would involve 6 trips in 7 weeks. I'm not sure how soon I would be able to travel 2 hours comfortably. How long did it take you to drive a distance?

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Something else, as a teacher, I think the doctors should give "a lesson" in operating the remote in their office before the procedure. Trying to teach someone coming out of anesthesia is asking someone to think with half a brain! It's absurd.
Thanks to your post, I realize that I always feel a vibration with each program and that reflects the rate and I'm going to request the nurse to decrease the rate to a thump. Thanks!! (Maybe that's what is causing the spasms.)

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I really did not have an issue with driving because I used my Pilllow Pet every time I drove for perhaps a year. Still bring it with me on any long trip "just in case". Who is doing the Trial in Mobile (Coastal Clinical Research or a Physician?) and when? Perhaps we might have time to meet for lunch during one of your trips (if you would like).

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The trial is with Coastal Clinical Research, however I don't think I'll be participating. They require that you not take your meds for 9 weeks and there is no way I could do that. I guess they need participants with a lesser degree of IC than I have. I would love to have a lunch date and share InterStim information. Maybe next month when I'm more fully healed we could meet up. I have always wanted to spend some time visiting Mobile. I've had several families transfer from the Montessori schools there and each one always tells of their love for Mobile. So don't forget about me, I'll be contacting you :) Cindy

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Rockabye Bailey-

Thanks for the information. I am a long time Bladder Cancer guy who also has a few other challenges... I have allowed my leukemia and renal cancer, as well as blockage in my ureter and tumors (lost my right kidney) take first priority...The good news is that through trials and forums like this- The leukemia is currently in check...or as I like to say- I am past my expected shelf life. Now I can try and assume a more normal lifestyle...with expectations of a longer existence.

The frequency I could live with-going every hour- using a condom catheter at night... but now repeated UTI's and leakage brought me to a Urologist who has me on an Interstim trial...day 5. Not really helping, as I see it- I have 2 more days before I go back. He is suggesting a permanent placement. I have read the pros and cons- there are many who dislike this procedure... Just trying to balance them out...

It's all about the lifestyle...

Randy

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So glad you are in a remission period, and hope it lasts a long, long time. My Dad went though this as well, and lived well past his "shelf life" so keep those hopes high! Intestim, very controversial as you well know, it is a very personal decision. What did you decide to do, and if you had the implant done, is it helping? Sure hope so, you certainly want to have quality to your remaining life and be able to function and enjoy it! Please give us all a follow up on how you are faring.

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Dear Duckylucky1,
I agree because when your under an anesthetic you will not comprehend anything of what they are trying to explain to you. Doctors need to explain the whole procedure more clearly because I did not understand til 7 months later that I cannot have any type of Diathermy therapy that would relieve pain in my back and joints from other diseases I have. Once more I cannot go through X-ray machines at the airport and I cannot have an ultra-sound or a ct scan for it could send me into a coma as it did with other patients who failed to tell their medical doctors that they had an implantation of a Medtronic Device. I recently was sent to a physical therapists who had no clue of my medtronic device and recommended treatment to a specialist who was aware of the therapy I can have. It is very important to provide documented information of product advisories whch can be obtained from their website (http://www.medtronic.com/corporate/neuro1.jsp Safety Alerts) to whatever doctors or specialists they send you too! I deal with constant pain on a daily basis with only taking advil because I am allergic to most pain meds. The hardening in my back feels like pin pricks and the stimulator works of relieving bladder to often but the pain from other surgeries that caused scar tissue to form has made me suffer more severely than imaginable. I do have a bone disease which causes some pain and a bulging disk but the stimulator and electrodes causes more pain of burning in the 2 1/2 of my right scar where the implantation and lower back pain area due to electrodes. They did not explain my procedure in depth nor complications from the procedure. Went for a removal 3 months after the procedure and was explained that I would have bladder relapse more severly if removal had taken place plus internal organs grow around the scar tissue over a period of time which complicates the removal of the procedure and can cause death or injury to internal organs. My question is this: Is there any therapy I can have that will help my pain subside?

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I am not sure where you got the impression that you cannot go thru Airport X-ray machines or have Ultrasounds as that is not correct. You cannot have a "body" MRI but with certain precautions you can have MRI's of the Head, brain. I also believe you can use TENs units, just not Diatherapy which generates a different type of therapy than a TENs unit. Again, the best information on what you can and cannot do is to call the Medtronic 800 number and ask them what are the restrictions. Another thing to consider is that there are other Medronic devices that are used to control other type of chnoic pain such as chronic neck or back pain and other conditions. Again, contact the Medtronic Website for specifics.

I am not here to say that it is the patient's or physician's fault when anyone that has received a Medtronic Implant and state that they did not understand the device or the restrictions...Anyone undergoing any type of surgery has to take the responsibility to learn about the device IN FULL before making the decision to have the surgery. There isn't any therapy or surgery that is 100% safe or without side effects or restrictions. The balance is in deciding whether those side effects and/or restrictions are less than the benefits one would receive with the surgery or device.

I researched InterStim on the Internet prior to seeing my Physician. I then took questions I discovered in my research and asked for answers from her and kept asking until I thoroughly understood. For me, there was no question that whatever restrictions I had to endure were MINIMAL to the benefits I have received from InterStim. Once I received my device I reasearched the Medtronic Website in more detail to learn more detail about how the device works and what I need to do or ask my programer to help me zero in on the best setting for me. I have served on Jury Duty, been through multiple Airport X-Ray machines and Airport and store security checkpoints without any issues or any questions. I was actually disappointed that no one questioned the device or even asked for my Medtronic Implant card. This therapy is not new and just like Pacemakers, those checkpoints know what to look for to determine the legimimacy of an implanted device. Now, I always take my hand held device with me "just in case" my device is accidentally turned off but I have never had that happen but still check once I am on the "other side" of the security device.

If there are any specific questions anyone wants to ask, I will do my best to either answer them or provide a link for them to find the answer for themselves.

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This is what the Medtronic site has to say for "precautions about medical procedures" It further describes each procedure and the specific guidelines that must be followed: "The following equipment is unlikely to affect the InterStim Therapy System if the guidelines below are followed:" Electrolysis, Laser Procesures, Radiation Therapy,Trancustaneous Electrical Nerve Stimulation (TENS), Bone Growth Stimulators, Dental Drills and Ultrasonic Probes, Psychotherapeutic Procedures, Magnetoencephalography (MEG), Positron Emmision Tomography (PET) scans, Computerized Axial Tomogrtaphy (CT OR CAT) scans, Diagnostic Ultrasound (eg, anorectal, carotid scan, doppler studies), Diagnostic x-rays or floroscopy.

Things can always go wrong with any device, surgery or medication and that is why anyone considering any type of surgery, new therapy or new medication needs to throrougly understand what can and can't be done and what precautions THEY must take to be safe. The Medtronic Website has many specifics like any other Company would for their Medications, surgical devices, etc. and will list all "possible" problems that can (but probably won't) ever affect the device or how it functions thanks to the Litigious Society we live in. There is always someone who wants to sue if something goes wrong even when it was because the patient and/or physician did something wrong or because they knew nothing about whatever may have injured the patient. If all the rules and guidelines are followed and something goes wrong and a patient is injured then THAT is when it is appropriate to sue but not just because someone says "they did not know". It is the responsiblilty of anyone putting something new into their body or undergoing a test or procedure they are not familiar with to insist that they 100% understand what is happening and what is expected or refuse to do it until it has been explained. That is known as Informed Consent and is the legal document that must be signed either by the patient or a responsible family member before any medical procedure occurs. As a nurse it amazes me when I hear a patient say they did not understand what was explained to them but signed the consent anyway.

I am amazed at the extreme means Medtronic has gone in an attempt to "idiot prof" the device. They list instructions such as keeping the neurostimulator away from the burners on a stove when it is turned on, keep it away from sewing machine or salon hair dryer motors and even turning off the device while you are driving "in case" one of the nerve stimulation pulses "startles the driver" causing them to hit the gas or not using the car radio "in case" it might malllfunction and cause interference. Again, you must take certain precautions and there are definite things that your cannot do and others that must be done with listed "precaution". However, this device has given me and many others their lives back so I am willing to learn everything I can about my device. I also take responsiblity for knowing what my restrictions are and I will be the one to inform others what precautions must be taken if there is chance that something can injur my device, myself or others if certain precautions aren't followed.

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Everyone here is right. I just could NEVER understand why they try to explain things to a patient coming out of twilight or whatever while they are in the recovery room. Nobody ever remembers, and the patient also tends to distort what they are being told. Your caregiver should be with you before they say a single word to you about follow up care. Ridiculous. My husband took it ALL wrong, that he could go home and go back to work and get behind the wheel when they were saying the exact opposite, and they did not bother to call me in for that conversation, just handed him off to me with a sheet of paper. It of course caused an argument when we got home because he heard what he thought he heard, we had to call the outpatient nurse so she could reinforce the real instructions. When you are coming out of twilight, you think you can fly like Superman. Maybe they should issue us caregivers restraints so we can tie them down for a day LOL!!!

This Medtronic Interstim discussion is getting crazy as well. This device was created for fecal incontinence, and then they approved it for urinary incontinence. They are only recently trying to get it through for IC (which it was never intended for). Would be interesting to hear what diagnoses the docs are putting on the final bill to the insurance companies. Can bet you a whole bunch of money IC is not in the codes at all. Anyone? You can look up the ICD9 codes on the net to see what they are really billing for...Would be very informative. It's all about big bucks, and that's about it. These docs really don't know how or why these things work, or if they even do, they are only going by what the manufacturer and reps are telling them.

As far as I can see, after reading many hundreds of pages from many different sites (other than the ones Medtronic has posted under various names, many do not mention Medtronic in their by-lines, so just take it all with a grain of salt), don't see it as being very effective for IC, and causing many issues. When you see a site that does nothing but praise something, you can be sure it is part of the manufacturer's PR department. Everyone should check out a device on FDA Maude before having it installed in the only body you'll ever have. Understand desperation, but we truly need to educate these docs and each other.

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The dr has suggested the interstim device as the next option to treat the toothache-like pain in my bladder and the overactive bladder symptoms I have been experiencing for the past 9 months. I have become discouraged by what a hard and unrewarding journey I have been on. This past Jan I had to drop out of college due to my persistant symptoms. I didn't know what was wrong with me at the beginning. The bladder pain was so intense that I called EMS not knowing what else to do. When I got to the ER the dr gave me a basic gyno exam and told me I only had a yeast infection which he gave me medicine for along with Vicodin. Neither medicine relieved my symptoms. I then went to a uro who told me that the pain I was experiencing was "all in my head." I was given Urelle which didnt help my symptoms either. I then went to a urogyno diagnosed me with detrusor instability(he told me I didnt have IC) then started out by giving me a very restricted diet and excersises to stregthen my pelvic floor muscles along with bed rest. It only helped me slighty and just resting all day only encouraged me to feel depressed. I went back to the same dr and he prescribed physical therapy for pelvic floor excersises which lasted 5 weeks and I still didnt see any results. I went back and he tried a low dose of vesicare for 2 weeks and again no results. He then gave me 12 electrode treatments with a needle in my ankle and an electrode on the heel of my foot, I saw only slight results. My dilemna is that I have been in so much pain and cannot sleep well because of frequent trips to the bathroom at night which has made my life a nightmare yet I don't want to go through another treatment and not have it work. I just want to beat this thing and go back to my normal healthy self ecspecially so I can go back to college as this has been a dream of mine. I am wondering how you have coped with your particular situation. How well did the interstim work for you and did it get rid of all of your symptoms? I am distraught right now because I used to be a much more active person. I have not even been able to go to a movie theatre in months because of all the trips to the bathroom it would require, I have prayed about this everyday for 9 months. I am going to another uro to get a 2nd opinion but I realize there is no gaurantee that my symptoms will improve. I would appreciate your feedback on my situation.

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Yes, InterStim has given me a new lease on life. I am no longer depressed over the things I cannot do because I am now able to do things I never was able to do before. I do encourage you to read everything you can about InterStim and understand that this is not a quick fix treatement. By that I mean you will not go to the hospital, get your implant and then go home and live happilily ever after. There is a great deal of work both you and the programmer of your device will need to do to figure out the correct settings for your device. That process can take anywhere from weeks to even a year to find. Considering the length of time (almost a year and a half) it took for me to find my "perfect" setting, I would choose to do it over and over again. InterStim has given me back my life and I hope if you choose to have the procedure that you will find that new life as well. Good luck and I will be happy to answer any specific questions you may have. I have also sent you a friend request if you want to e-mail back and forth in private.

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Oops, forgot we were already friends!

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