Nerve stimulation

[MakinIT]

Ok..I'm reading all these posts about how the interstim is not for pain relief,but can be a nice side effect. MY pain doc today outlined for me possible treatments and then discounted why they weren't possilbe. First, he wanted to do a permanant Ablation through Phenol or electrically zapping the source of the problem. but from my prior nerve block he found that the nerve plexus is huge on me. so he says interstim is my only other option. (Yes,I have freq, and urgency but I could deal with that...It's the pain nearly driving me nuts) I explained I had read on this board and had looked up the website that stated it wasn't for pain. He looked me in the eye and said "But I found it to work on pain for folks...and if it doesn't work for that maybe your voiding can be reduced.) He won't do it until my psych says ok because Of my aversion to the needles inthe back. He had a very hard time doing the block because I fought it, even under sedation.

speaking of which, when you had the temp put in (for those that have) do they at least sedate you? When you have a permanent one, do you get to go to sleep? It's the pain and knowledge of what's going on that freaks me out.

Anyway, last few days have been hell for me. I'm about in as much pain as I have ever been with this damn disease and am thoroughly P.O'd specially since I do all the work I'm supposed to help with the pain. (accup., chiro, Pt, meds, etc...)

Take care all...if you have anywords of wisdom, please let meknow!:bow:

Thanks...Tracey

[Dixiefireball]

hon i wish i had your answer for you but i don't know about the stim.
hopefully someone soon will come by and help you a little bit with with some of you question.
Jess is still sick and brats aunt just died hopefully debbieb or katrina or one of the other ladies who has it will come by
sending you hugs and prayers
Rhonda:kiss:

[Teri]

I do believe that down the road, when they have had A LOT more surgeries going on that they will hit on a nerve that may help with the pain. I know that there are huge things coming from Medtronics in the next couple of years.......

I think I'd wait, let the try all the want to try on onther people, and then when Medtonics gets to a place where they are saying it helps with pain, jump on it......for now, do the best you can.

I am on heavy duty narcotics and I HATE them and the way they make me feel and act but I don't have a choice right now. I did have the implant, was more than happy to have it taken out and now I will be treated for pain and wait for something big to happen in the next couple of years;)

[littlebear]

Hi,

Rachel is the only one I know of who has had a trial (the old, less invasive one). I don't know if I'm remembering her posts correctly, but this is what I think happened in her case . . . She had the old trial as a short-term remedy to treat a seasonal flare (for retention as well as for pain, I think) and it sounds like she has a very special Dr.. So, I tend to think that, unless you can talk to her or someone like her *and* you can find a Dr. who is like hers (and he sounds like one in a million--plus I think he initially only wanted her to have the trial not the implant itself), the new interstim trial and the interstim implant itself may not be the procedures for you because they are not FDA approved for pain.

If you have frequency and urgency issues, maybe you should talk to your uro . . .. If his solultions for those problems do not work after a good while, then he may suggest the interstim as an option. But, from the reasearch I've done, from the posts I've read, and from my own experience, I would say don't go down this road unless you know *exactly* why you're doing it and what your goals are (and unless you've done loads of research).
I don't meant to be discouraging--it's just that you might be setting yourself up if you go into this for pain and then think that, well, at least your frequency and urgency will get better even if the pain doesn't (it's really won't be that simple, especially if you're in the middle of battle with pain that you're not winning yet).

I hope that you can find a way to treat your pain, though. We're all behind you and sending you all our support. Best wishes, little bear

[dyno]

Tracey,
Some of the people who have had the stim have had a reduction in pain, but bottom line, it is not approved for pain, and in some cases when there have been problems with the stim or the Dr. who put it in, there are those who have more pain now than they did before.

As the others have told you, do your research and really question whether this is the right treatment for you if you are going into it mainly for pain relief.

Have you thought of checking with another or several other urologists if needed for their input on your situation? Everyone is different and that is why you have to check it out and decide what is best for you.

Wishing you the best.:grouphug:

[ICNDonna]

I do not have an interstim and have never considered it as an option for me. That said, I do know that some people have had good response for frequency and a very small number have an added bonus in that it has helped pain.

Interstim does not usually help with pain.

I have to agree with Dyno that a second opinion might be a good idea.

Warm healing thoughts,
Donna

[tigger_gal]

I have had the interstim for a year now. It has not helped with any pain.. My urgency for the most part gone and my voiding has gone up since the implant but, that all be helped in a reprogramming. I have no regrets getting the interstim, but please keep in mind that the pain relief in patients are far and few between.
Brat

[MakinIT]

thanks...I certainly have to give it alot of thought. I'm not really thrilled with the whole thing. i want to just say..."THIS WHOLE THING SUCKS" i'm between a rock and hard place. Boo......I have done quite a bit of reading on it and read the website, the doc even directed it to me when I expressed my concern that the device wasn't designed to work on pain. However, I've found in my research that some tests have een done that show about 1/2 the folks get pain relief and the other 1/2 don't.

I just don't know...I'm going to wait until my uro and everyone else gets their two cents in.

Tracey

[dyno]

The best thing you can do is what you are doing. Research it all, read all the different threads on here, expand the days and get them all. Go to the different web sites, listen to what your Dr. says and then it will be up to you and your family, it impacts you all.

There are definately people who benefit from it, I wish you well, you are doing it the right way.:)

[MakinIT]

I'm really strugglling with this. I know you all can't give me an answer, but Brat, how painful was the procedure? I've read other people have had a terrible time. My doc said I had to possibly put up with hours to put in the temp. and be awake with just sedation. I was miserable with the nerve block, and my psych says I have PTSD from a very nasty experience with an epidural. It took 3 people to hold me down, sedated with versed with the nerve block. so my pain doc has also said I have to be ok'ed by the psychologist. AAAAAAGGGGGGHHHHH. Anyway I can't believe how ridiculous this is. I have to have all my problems solved by June 21st cause I start taking classes again so I can earn new credits to start a new teaching (consulting) careers. I was accepted into this program, when my pain was a little less and wasn't flaring as much.

whoever said being on disability and unable to work would be great has no clue what it takes to continue bringing in incomes, going to doctors all the time, Physical therapy, pain, pain, and more pain.

I don't want to do anything more!!!!! I just want this to go away. (I know, WAH, WAH, WAH:rant: (Where's the baby smileeee)

Ok...done ranting. I know I'm not the only one who is struggling.

[rachelm]

:kiss: Tracy,

I completely understand your frustration with finding a relief for your pain. I have just gotten the stage 1 trial of the interstim so I thought I would share my story.

My dr. suggested that we do a temp. (old trial-no incision) InterStim in Feb. because nothing I was trying could fix the retention and the excrutiating pain. He explained that the intrstim is not for pain but most of his patients have some reduction in pain. He said that the trial wouldn't be invasive and that the wires could be pulled out in his office at any time. Our intention was to use the trial as a way to get over the worst part of the flare. It worked like a charm!:thumbsup: within 30 min. I was peeing on my own for the first time in a month. By the third week in I was able to get completley off the morphine I had been on for pain. I felt like I finally had my life back and was able to work again. My dr. said I could leave the wires in as long as they stayed in place and they didn't get infected.

After 3 1/2 weeks both wires had moved out of place so my nurse pulled the wires out. This part was actually the hardest part because it hurt really bad for about a min. and then the pain started going away after 5 min. We were hopeful that my retention wouldn't return and the pain would be manageble. Unfortunately within 3 days the pelvic pain returned and I had to start taking morphene again. By 5 days after removal I was retaining about 50% of the time and self-cathing again. My dr. said I might want to consider the permanent implant but that he would leave that up to me. His words exactly were you will be painfully positive about the decision when your ready. Two days later I scheduled the stage implants.

This week on the way to the hospital for the stage 1 implant I learned that my dr. could tell I was transmitting tremendous amounts of pain on the sacral nerve. I'm not quite sure if the nerve is bigger or the tissue around it is inflamed but he knew at that moment the level of pain I had been enduring. He told my family which really helped them understand why I hadn't been functioning. He also told them that most patients that look like that end up needing the permanent implant but he wanted to give this a shot and maybe all I would need was the trial temporarily. He asked them not to tell me because he wanted me to come to that decision completly on my own and he also wanted me to have hope for the temp. trial.

Little bear was right when she said I have an amazing 1 in a milion dr. I know that he really wants the most effective least invasive therapy possiible so I know that I can trust him in surgery.

Both times in the trial I was put under local and twighlight anesthesia. I didn't feel or remember anything the first time except for when they asked me to describe the location of the stimulation. The jolt was quick and my leg jumped a little on the table. The next thing I remembered was in the recovery room when I woke up. I was just like you very scared of being aware of the surgery but it wasn't like that. They woke me up just enough to comment for a second and then I went back to sleep. This last one for the stage I don't remember a thing. I knew that they would be putting me under so I didn't worry as much this time. Even though they made incisions I don't remember a thing. I was not completley out but it seemed that way to me. They told me that they turned up the stimulator slowly this time since I had felt it so strong previously. When asked by my rep. while semi-consious what my new last name would be when I get married I replied I don't know. How embarasing!:D I do really know that I was just a bit out of it.

Since the stage 1 procedure 2 days ago I have noticed a reduction in pain only on the side stimulated. My dr. will look at me tomorrow so we can play with the setting to find the best one. If I don't notice more improvement with the pain and retention then we will try 2 boxes-one on each side. I know that he has tried that with other patients. Last time I had quick drastic improvement but this time probably due to the incisions it is taking longer. Yesterday I never felt quite empty and when I cathed I still had 350cc left that I retained. Today I've been able to start the stream easier and its been stronger so I hope its starting to kick in all the way. I have 4 little wires off of each lead that can be programed one at a time to stimulate so we have many options for programming.

I too had the nerve blocks where they used versed to but me mostly out. I didn't have any problems or pain with it. Maybe your dr. just needs to put you under better. It seems like they should be able to tweak the dosage of your anethesia so you aren't aware of the procedure.

This is a very personal decision and my dr. was right. You are the only one who can make that decision and you will know when and if you're ready. For me I had run out of options and the first trial was so amazing that I knew I was ready. I would reccommend however that you do the old trial first because its less invasive with no incisions. The dr. places the leads using
x-ray through a needle percutaneously. If it works great! If not take a pain pill and some valium and have your dr. pull the wires out. To me it was better to do that first because when you have the staged trial it takes some time to heal the incisions and I'm much much more sore than after the first one. Today has actually been better and I'm getting around better. My biggest problem now is the pain on my left side that isn't being stimulated. I will let you know whtat the dr. says tomorrow and what actions we can take to help the pain on the left.

I know for me this was the right choice but please do your research as you are and make sure you really really trust your dr. It seems to me that the experience level of the dr. makes a big difference. Hang in there!:hi:

Rachel

[MakinIT]

Wow...thanks for all the info Rachel....My doc told me it would just be 2 stages...the trial and then the permanent implant..I'm alittle confused, are you having more stages?

You're right about the sedation...I had 2 units of versed (I read my bill) but it didn't do a thing to fog me. I don't know if it was because I was already so freaked that I was in fight or flight or if it is because I already take alot of valium (15 mgs/day) so I was toleratant of the medication. he has to take to the point you are talking about...I have had procedures done under twilight sleep and don't remember them so it should be the same, eh?

have all of your experiences been outpatient?

thanks so much for your help.

Tracey

[rachelm]

Tracey,

That's exactly right about a similar reaction to the versed in any other procedures. I think that should definitely be addressed if you do decide to do the trial. Maybe they just need to give you a higher dose or switch drugs.

The old trial is what I had done the first time. As I described it didn't involve any incisions. The dr. inserted the leads through a needle and had me confirm the location of the stimulation. He then taped the external excess wires to my back and I connected the trial box.

The second procedure is called the stage trial. I had the stage 1 done on Fri. The main difference is that in the stage trial the leads are placed through 2 tiny incisions internally with extra wires that will connect to the outside trial box until the internal one is implanted. The implant site and tunnel that will eventually connect to the internal unit are prepared so that in stage 2 all the dr has to do is insert the generator, connect it internally, and stich me up. Overall this is a much more invasive trial than the old trial like I did first. My rep said if it were his family doing this he would recommed the old less invasive trial first and then do the stage trial if it was successfull the first time. The stage trial has to be removed in surgery whereas the old trial can be pulled out in the office with no anestesia. Most dr. now do the stage trial.

Our initial reasoning for doing the old type was that we intended it to be a temporary treatment. I still think even if I knew I was going for the full implant that I would do the old one initially.

1. You get benefits without the pain of incisions
2. You will know how you respond to it so you can decide on going further with the implant

I hope this has been helpful. Let me know if I'm clearing the difference up for you. Whatever route you decide to take I would definitley insist on meeting with the anestesiologist before the day of the procedure so you can explain your first reaction to the versed. Usually I haven't meant the anestesiologist until right before my surgery. A nurse will usually call you the day before to verify meds., give instructions to fast ect. But in your case I would meet him/her earlier.

I wish you the best as you make this difficult decision. Remember you are the only one who will know when and if you are ready. Even for me it hasn't been a quick fix. For this stage trial I'm not having the quick drastic results that I got the first trial. I think its because the settings need to be adjusted and my body is trying to heal the 3 incision.

Let me know how you do. I'm glad I was able to offer my experience while its fresh on my mind. It helps me a lot to talk with others who have it so I will know what to expect along the way. Happy Easter!:bunny:

Rachel

[MakinIT]

Rachelm:

My doc is planning on doing what you called the "old trial" first. For one week....then remove the leads...This is what he told me could last for a long time, until he found the "sweet spot" as he calls it. (BTW he is a nuerologist and anestesioligist by training...I know I didn't spell that right, I never do) I did not like the sounds of that, all the poking around on different nerves. sounds absolutely creepy and awful. This is why I want to be sedated well.

If that is successful, then he plans to do the second surgery which will implant the 'box'.

So that's where I am. I am talking to my uro about it tomorrow, see what she thinks. so far, she has agreed with everything the pain doc has said, but since pain is my bigger problem, seems like a pain pump should be a consideration. It's almost like they aren't hearing me when I say "the interstim is not supposed to be used for pain, solely..." yes frequency is an issue, but the bigger issue is pain.

Grrr.....I guess doctors are only human too, and wanting to override recommendations of FDA when they've personally seen it work on others. I just know, though, with my track record, I'll be one who isn't so fortunate.

Thanks so much For your advice. Helps me when I speak to docs tomorrow.

[dyno]

Tracey,
I guess this is one way to look at this. If you decide this is a treatment you want to try, a neurologist messing with nerves and your spine is more practical to me than a urologist whose specialty is the urinary track. I personally would feel better with someone whose specialty was working in that area.

Good luck I know this is a tough decision.:kiss:

Oh and one more thing, don't let anyone railroad you into this if you don't feel comfortable trying it for pain relief. If they don't want to listen to you and you aren't comfortable with it, try to figure out another avenue for your treatment. You know your body and what is going on. :grouphug:

[rachelm]

Tracey,

The good thing about the old trial is that if it doesn't work you just won't do the permanent one. It took my dr. about 45 min. the first time to place the wires. It was a bit longer for the trial stim because of incisions and he had to make sure that none of my leg muscles were being stimulated as they were in the first trial. I haven't heard of it taking hours. I believe that for some this is a viable treatment for pain but it isn't for everyone. The company will always tell you that it isn't for pain and every dr. I have discussed this with has also reiterated it is not for pain but many patients do have relief particulary if your pain is stemmed from spasms. I didn't really know that the spasms were actually causing the intence pain and inflamation. I was exactly like you pain is my primary symptom but I have retention very bad too.

My dr readjusted my stage 1 box today and so far I'm emptying much better. I have a decrease in pain on the right side that's being stimulated but my left hip/pelvis is still in pain. I will go back Fri. and he will reassess my need for reprograming. He did tell me that we have many options this time for reprograming and he would not do the permanent stim until we get the right setting and it works well for a few days. He does the old trial to make sure its a valid therapy for me. Then does the staged trial because it gives him an opportunity to change settings after stage 1 is put in so that when the final stage implant is put in there is less of a chance that he will have to do a revission. If the wires aren't stimulating in the right place this is the time to fix it- during the staged trial. For the final stage 2 the wires are letf in place and attached to the internal unit.

My dr. said he trusts my Neurologist with my life and I know in the future if I decide that the InterStim isn't helping my pain I will look into other neruostimulators that are attached at the spine for pain. My urogyno said this was a very delicate procedure that he does not do but said he has had some patients that did the surgery after other measures had failed. This more invasive stimulation must be done by a neurologis. I think your in good hands.

Remember what Jolene said. This is your decision and your dr. shouldn't be trying to push it on you. My dr. told my family in convidence after looking at my nerve during the first trial that he felt I would end up needing the perm. one. He insisted though that they not tell me because he wanted me to make that decision on my own. I love him for that!

I'll post how I'm doing later. I hope that the improvement in retention lasts tonight and tomorrow. Keep up the faith and know there are lot's of us out here routing you on!:thumbsup:

Rachel

[MakinIT]

Thanks much. I talked to my uro today and she agrees with the pain doc too.
She says she's done all that is in her professional ability to do, and thinks, because of the pain pattern I have, an Interstim would be good. (also, I peed 3 times while discussing this with her so she at least I could decrease that little problem) She did say, however, that it was ridiculous I wasn't sedated better and said she would talk to him and make sure he understood the stress that was placing on me....And I have to talk to my Psychologist tomorrow. The pain doc won't do it unless the psych ok's it because A) it is so traumatic for me B) I'm so medicated he wanted to make sure I'm making the decision "sanely". (They all have worried about my decision making ability..But I've had one of my meds removed and that has lifted some of my fogginess...so I've had three docs in less than a week tell me how much "brighter" I look...I just wonder if I was drooling before!)

Anyway...you have gone beyond my wildest hope in giving me some patient insight, Rachel...I really appreciate it. :D

[rachelm]

Tracey,

I'm so glad that I could help by sharing my recent experience with the InterStim trials. I'm glad your uro will back you up about the sedation. There's no reason why they shouldn't be able to sedate you to the point where you're barely aware. If it still isn't enough then I would ask for a general anestesia and hope that the wire is placed in the right spot. Hopefully though, they will find a way to get you comfortable but yet able to respond. Please let us know how your doing. This is all very fresh on my mind becasue I'm still going through the stage implant procedures.

I will be praying for you as you make this decision. I'm glad you've got good support from both your dr. Another thing I remembered my nurse telling me is that this isn't a quick fix as nothing about the treatment of IC seems to be quick. It may take a few times to get the wire in just the right spot or a few reprogrammings (like I'm doing now) Whatever happens know that if you don't have improvement during the trial the permanent one will not usually work. Some dr. ask their patients to go on with the implant but I would recommend reprogramming the tiral until you get the right combination setting. You will also need to have a good working relationship with your dr. office and staff because you will need to get in to see him without a lot of notice at times especially durring the trial. I've seen my dr. once this week and I go again Fri. to check on the settings and decide if they need to be reset. I am able to call my dr. office and get worked in that day. If he is in surgery then I have to wait for a while but he makes it a point to tell his staff that they are to work his IC patients in for bladder washes and interstim issues.

Enough said. Have a good week. I hope that in the meantime while your considering your options you will get some pain relief. Are you taking anything for pain?

Prayers and thoughts headed your way.:pray: :kiss: :thumbsup:

Rachel

[MakinIT]

Oh Yeah..got me on MS contin 30 mgs 3x/day, valium 15-20 mgs day, lots of yoga, meditation training, PT including Pelvic Floor Therapy. BTW..Saw my shrink today...he and my pain doc work closely and he agreed that the interstim would be good. He did say he would spend the next few sessions with me doing some "de-sensitatazation cognitive retraining.....(psycho babble for self hynosis under stressful situations) We've discovered I'm good with guided imaginary, and easy to hynotize so this is what we are focusing on. Getting over my phobia of medical procedures. He is also going to speak very sternly with the pain doc about how I need more sedation due to my valium intake.

thanks///

Tracey

[rachelm]

Tracey,

Bravo to your dr.s I'm so glad you've got a few dr. who are willing to fight for your rights as a patient. It seems that sometimes a word from another physician goes over better than from the patient even if it's the same thing said. Anyway, I'm glad to hear that your on meds. As long as you feel comfortable with this procedure I think you could benefit from it. Please, please know that it isn't a quick fix!!!!! I met with a support group in my area and the leader has 2 interstims. The first one helped tremendously with urgency/frequency and retention but only a little for the pain. The dr. put in another one on the left side and she didn't notice much improvement that time. She does notice a differnce when she turns it off because her pain gets much worse. She still needs to be on heavy pain drugs but her quality of life is a little better most of the time and sometimes it's a lot better.

I think more important than anything, you believe in yourself to make the right decision and you have a good team of dr. who will see you through the ups and downs and reprogramings required for this treatment.

Have you decided yet or are you still thinking. I hope your dr.'s aren't trying to rush you into a decision because it's important that it's in YOUR time.

Let us know how you do!

Rachel :hi:

[MakinIT]

I've decided to do it, so they are trying to get it through my insurance, first. It will be a while before the procedure, I think. My psych wants to do some desensitazation training first, as well....I just wish I wasn't so freaked out about it. And maybe that I wouldn't have had to have so much pain relief in the past that the drugs don't work during surgery. AAARgh...We'll see if insurance will pay first.

Tracey

[rachelm]

I think you've got a good plan. Your smart to go through the desensitivity training with your pysch. Hopefully the anestisiologist will have better sedation for you. You should ask them to make sure your not in pain or aware of things before they start the procedure.

I will help with any questions you have along the way. I know each step I've had more questions arise and it's been helpful to chat with others on the board who have gone before me.

I'm still praying that you get some relief in the meantime.

Rachel

[littlebear]

Hi Tracey, Best of luck with everything! We're all rooting for you and sending you our very best wishes, little bear

[dyno]

Tracey, just take one day at a time and step by step it sounds like your Dr.s will get you ready for this. I hope all goes well.:)

Rachel, I hope your stim process will continue to help you too. You have been through a lot with this. I feel so lucky that it sounds like we have one of the better Insterstim Dr.s right here in our area for those who need it. Good Luck.:)

[MakinIT]

You guys are awesome!!:bow:

It's so hard to find REAL advice about this (like people who have gone through this before and aren't a company mouthpiece.)

Ughh...belly hurts today, and I'm peeing like a crazy woman. also had to take my cat back into the vet today. He did a major number on himself about 6 weeks ago, sliced his right arm from shoulder to wrist. (We think he was crawling under a cyclone fence and got caught) His skin, at that time, peeled all the way back from 2 sides and you could see all the muscles, tendons, etc...like a dissection. (Which I've done before on cats and humans during college years) So..that initial surgery cost $300. Then the elbow area wouldn't heal...it stayed open no matter what I did so I took him back in 2 weeks later and they put 5 staples in that area. (I could hear him howling from the backroom) That was another $100.They told me to come back in 3 weeks to remove the staples, I did and they said it still wasn't healed. Give him one more week. So, I came back today...said it still wasn't healed so they are going to have to do more surgery...clean the wound edges, restitch and put him under, run some tests as to why he won't heal..(suspect kitty FIV/ or luekemia which apparently, he can be healthy with..just have to be careful) This another 240 bucks!!!! Crap. We've only had him since December 26th, he's about a year old...Great cat, wonderful personality but holy smokes. Oh well..what are you gonna do? good thing I saved one of my credit cards. It is specifically for medical expenses.

Now...I've earned the massage I'm going in for today.

Bye now...thanks again for all the support and caring.

[sunshineandhope]

I like to get on this message board every few months or so to see how many I.C. patience have the Synergy neurostem for pain used for their I.C. pain. I have had the Synergy neurostem for a year and a half. It is great and helps with my I.C. pain. It seems like some I.C. patients with the interstem have a difficult time believing that the synergy neurostem is being done on I.C. patients and is used for pain. I do realise that this is somewhat new for I.C. because I was one of my doctors first I.C. patients to use this device. I needed more pain control than anything for my I.C. I was happy that my Pain Doctor has a huge practice and decided to include I.C. in his neurostem practice. I love having my synergy neurostem and hope others choosing these devices realise that medtronics does have a device that can be used for I.C. pain. It is also great for the urgency and all the other problems we can have with I.C. When atleast sixty to sometimes ninety percent of your pain is gone and you have no urgency to deal with life becomes so much easier. I am thankful.

[MakinIT]

yes...I've read extensively about that..I had the reg. interstim stuck in my head, and after reading about the synergy stimulator I realized that was what my doc was referring to doing with me.

Ok...bye...thanks much!!!!
You're awesome..thanks for checking in on the boards every so often. It gives me some peace of mind.

Tracey

[rachelm]

I too have heard that the synergy stimulator has helped many with IC and other types of pain. Both my pain dr. who does use several different stimulators and my urogynocologist felt that for me even with my biggest symptom of pain that I should at least try the trial InterStim before considering more invasive measures. I don't know why it helps some with their pain and not others but for me it was very dramatic very quickly. Basically I have come to understand that my bladder and tissue nerves surrounding it were in constant spasms which caused the unrelenting pain and eventually total retention. I went into it hoping that a temp. trial was all I needed to kick start my bladder back into listening to the right nerves so that I was able to pee on my own again. I knew that the device was not approved for IC nor pain but that many people had found that as an added benefit. The Interstim trial was not a very invasive procedure so I did it. Unfortunately when the wires were pulled after 31/2 weeks my symptoms of pain and then retention came back within 6 days. I was begging for the device at that point because both my symptom improvement and then subsequent worsening were dramatic and directly related to when I did and did not have the stimulation.

I did get my permanent interstim and am 2 days off of my morphine that prior to the device I took 8-10 15 mg doses per day for pain. Since getting my interstim I spoke with my pain dr. he said by targetting the direct cause the nerves to the bladder, I was fixing the root of my problem. Unfortunately with this disease there are so many overlapping conditions that it is not that simple and there is no one right way for every IC patient. I guess you just have to keep trying different things until you find what works for you. My pain dr. said if I crash with the interstim and the pain comes back he doesn't think that more leads on the spinal cord with the Synergy will be of much more help for me instead I would need to consider a pain pump. Hopefully it won't come to that. I always thought if the interstim stopped helping me than I could try the synergy but it doesn't sound like my pain dr. agrees. I'm very hopefull though that I will not need any other more invasive interventions to lead a fairly normal life with my IC. I know that I'm not cured and I will still have ups and downs but for now my symptoms are under control with meds and my beloved Interstim. I am glad there are more pain dr., that are venturing out to treat IC pain with other neurostimulators.

After watching the oprah show the day before my final implant, about the medtronic devices used for turets and parkinson disease it became evident that there are so many more options out there with these technologies. On the show they showed 2 men who's lives had stopped due to the constant ticks and tremors. 25 sec. after the deep brain stimulator (device looks just like interstim or pacemaker but is put in the brain) was turned on one man became still for the first time in 20 years. He is now living a normal life except that he has bilateral stimulators implanted in his chest wall that control the leads into his deep brain tissue. It was considered a medical miracle and I think it was a wonderful outward view of what my bladder and pelvic muscles look like when they are in constant spasms. I guess for me by stopping the spasms it has helped my pain for now. I've learned to take the good in each day and deal with the rest as it comes. Thank you all so much for your support as I've toiled over my decisons in this process.

Rachel

[sunshineandhope]

Dear Rachelm and MakinIt,
Thank you so much for responding on the Synergy Neurostem. I have been talking about this device for almost a year now and nobody seemed to understand that this was differant then the interstem. I am also in a study to help with the new neurostems that will be coming out. They will be rechargable and lots of good things. I know sometimes patients use two devices(interstem) so if you need more coverage in the future that maybe possible. I did have a lead move and it required another surgery, and my pain control was restored. My leads are in my back and not butt. I do get stimulation on both sides of my pelvic floor and up into the neck of my bladder. It does cover a larger area than the interstem. My device is larger, about three inches and is above my left hip. My doctor is working with Medtronics on which device is best for I.C. ,Interstem or Synergy Neurostem. He is working to have the Synergy Neurostem approved by the FDA for I.C. He is having better than seventy five percent with positive outcomes after the implant. I am just so happy that more I.C. suffers can make a choice what they would like. I was to worried that I would need more covarge than the interstem could do for myself. I still have I.C. of course, but it is just so much easier to deal with now. I did have a UTI a couple of weeks ago and it took a few days to notice just what was wrong. After medication I felt much better and back to my busy days. Again thanks for sharing, I was really wondering if anyone would believe me. I felt almost guilty that I had this device and nobody seemed to know what I was talking about. I am excited that more doctors are trying to help I.C. suffers as well. My pain Doctor a year and a half ago told me that he didn't know much about I.C. but he believed in this device and I had the type of nerve pain that could respond to this device. Praise God it did. A year and a half ago life was very hard and I Knew at that time I wouldn't beable to continue working any more and do the things I loved doing. So I am excited medicine is moving forward and knew things come out every day. Thanks Deborah

[dyno]

Thanks for sharing Deborah. It is nice to see that you are getting relief and for those that need it, this option is available.:)

[MakinIT]

I am FRUSTRATED!!! I keep waiting and waiting and waiting for my docs office to decide on a date to do this. There has been a big upheaval in office personel since we decided to do this. I call, everyother day, to try and figure out when they are going to do this. The procedure nurse always says "you're on the top of my list of people toget scheduled...meanwhile...its been a month, I don't have a date yet, and I have to go to school starting June 21. I am really unhappy about this. GRRRRRRRR~. Anyway, my GP got me restarted on something for my migraine pain...Yippee. And percocet for breakthrough pain...(FINALLY...something for breakthrough pain) I'm sure I'll be all doped up from the new migraine med. Obviously the percocet really throws ya for a loop. I want off all these meds. (Morphinine, valium, Zenagran, percocet, atarax...AAAAAAAGHGHHHH. I feel like I'm 90 with my little pill divider)

Thanks for listening to me vent.

Tracey