HELP!!!INTERSTIM & PAIN

[Phoebe]

Anyone who knows anything about me knows that my life is filled with pain. Not just little cramps, pain that doesn't go away even with a heavy load of narcotics. I have tried everything, nothing is working. I have been waiting to hear from a gyn in Calgary. I got the letter today. In it was brochures about Interstim. It sounds like that is what they want to try for me as a last resort before a bladder removal. I am 26! I have had IC for 11 months (of pain), 9 months since my diagnosis. I have heard that interstim does not help for pain. Is this true? The booklets that came with the letter did not talk about helping with the pain, only frequency and urgency. These are not my symptoms. Is there any hope for me? Please, if any of you have had success with interstim and pain, please let me know. I don't know what to do now, but cry and wait and pray and hope. Should I make the appointment? Should I give it a try? Is ther anything else they can do for me? As it is now, even the drugs don't help much.

Anxious for answers. Phoebe

[yvette]

Phoebe,
Interstim is NOT for pain. There are people who have been helped with Interstim and their pain has decreased or gone away. Those are very LUCKY people. But to count on your pain being "cured" thru Interstim, its a good way to set yourself up for dissapointment and great sadness.

Even if you CALL Medtronic they will also tell you it is not for pain. Interstim is for frequency, urgency and urge incontience.

I will repost the articles regarding the devices for PAIN--the product is called SYNERGY and it is meant for pain.

Please research this thouroghly, I have Interstim and love it!! But I would never endorse it as a means for pain management.

I wish you the very best Phoebe and hope you find pain relief soon!
y. [img]smile.gif[/img]

Thread on Articles on Nerve Stim for Pain
http://www.ic-network.com/cgi-bin/ub...&f=74&t=000042

[icnmgrjill]

Phoebe,

I also was a pain patient but am doing so much better now. There are other therapies that are worth considering.. such as hydroxyzine, elavil and a number of other things. In Canada, there are number of bladder instillations not even available here in the USA.. such as Cystistat and Uracyst. There are also alternative medications worth considering.. like Algonot, Cystoprotek and CystaQ. It's REALLY important to learn about all of the options out there... from both medications to some of the self help strategies that can greatly reduce symptoms

What really saddens me are patients who are newly diagnosed who are never told about diet. If you're drinking coffees, teas, sodas or fruit juices every day that could be one reason why you're having such horrible pain. Diet DOES make a huge difference. I was in agony drinking cranberry juice and coffee for a year. But, once I stopped that, I really did start to improve.

Have you gone through all the therapies in the IC survival guide??? Is there any chance that some of your pain is coming from your pelvic floor muscles??? Call me if you can. I'd like to help.

Jill

[lotsofgirls]

Pheobe, I am in Calgary,

can you tell me more about what you are waiting for? What have you tried so far?

I am battling with a constant painful flare myself, but I am finding that approaching IC on all fronts, pain management, diet, medication, instillations, pelvic floor therapy may make a difference.

If you want to email me please do, I know most of the pain management services and uros/treatments in Calgary.

Cath

[littlebear]

Hi Pheobe, I am so sorry to hear about your pain. From what I've read and heard the interstim is not for pain. I hope that the other suggestions you receive from Yvette, Jill, Cath, and others can help you to find some relief asap. Don't give up hope. There are so many caring and knowledgeable people here and they're all behind you 100% Best wishes, little bear

[rachelm]

Phoebe,
I'm sorry your in such a painful flare. I definitely would suggest as others have trying every option for management before an invasive procedure. I tried Hydroxydine (and increased it for a month to 100mg.), Elavil, Neurnontin, Elmiron, Zanaflax, Lortab 10, Skelaxin, Morphine, Zoloft, pyridium, nerve blocks (3 in a year) and physical therapy. I was desperate for some relief and my dr. explained that he thought a temp. trial would get me through the flare. I mostly deal with urgency/retention and sometimes frequency (15-20x a day) I had read that most people that benefit from the stim. have really bad frequency so I didn't think it was the best option for me. I only consented because the trial was fairly simple and could be stopped at any time. My dr. explained that most people have a reduction in pain especially if they experience constant debilitating spasms as I did. Within a day of having it turned on I was ready to start decreasing my pain meds. I now am completely off all narcotics after 3 weeks. My dr. nor I wants to do the perm. implant because he feels that we can manage my severe flares that seem to be once a year with a less invasive trial interstim for as long as the leads stay in place. I may just be one of the Lucky ones, and I might experience problems that it won't help latter on but I'm thankful for the relief I'm having now and so glad that my dr. tries the least invasive methods first.

He said some people only nead a few points of stimulation as in the interstim further down the nerve while others need the more invasive pain stimulators that only neurologist can perform in which there are my points of stimulation. You might want to research other stimulators used for pain. There is a post on here about them and you can learn more by going to painconnection.com

I also want to include that my dr. told me that the interstim was not meant for pain, no conclusive results were out that it helps pain and that the FDA has not approved it for pain. He added though that most of his patients (not all) have experienced some reduction in pain. I hope you are able to start finding a treatment that will work. I certainly understand your pain and the feeling of helplessness that it brings. Let us know how you do! Remember that researching every option and finding a dr. that will work with you until you find something that works is important. This is a very individual disease with very individual results.

Rachel

[Mimi-in-Chicagoland]

I am all for trying EVERYTHING before interstim. It is not a walk in the park...but its better than having your bladder removed (which I had been tempted to perform in the kitchen with a knife and a ziplock a time or two :eek: ) I had two kinds of pain--achy flare pain...like a headache. I got that when I ate or drank something I shouldn't. The thing that was driving me completely crazy and kept me from sleeping or walking around was this cramping, squeezing, horrendous pain when my bladder would fill and then right after it would empty--my doctor called them spasms. I tried everything. Valium didn't help--I was horrendously allergic to it. The other drugs helped with flares, not spasms. In passing one day, my doctor said "interstim" and urgency/frequency. I thought, well, maybe if I peed less, I would hurt less. I can't tell you how much it hurt just to lay on my bladder on the operating table. The minute they turned the implant on I could feel a difference. I did well until my implant failed. I don't think it was the fault of the implant itself--it was the connection. I had a lot of fluid oozing and I also have a clotting problem I wasn't aware of--and having an implant is like having electrical wiring in the walls--its hard to keep it waterproof. I had to go back and get them to reconnect everything to keep it from shorting out. I have not had to reprogram it or anything since. I have almost no cramping pain. My flares have decreased and I pee about 2/3rds less. I went from 10 to 15 times a night to 1 or 2. During the day I might go 5 or 6...instead of 2 or 3 times and hour. I feel normal. My doctor does a lot of report reviews for medical journals. A lot of studies say that the implants are helping with pain. You try the implant during the trial. If you don't feel a difference during that week or two--don't get the implant because if it doesn't work at first its not going to. I think some reps try to say it will--but it doesn't.

[lotsofgirls]

Hey Mimi,
I think we should hide the knives on you

Cath

[DebbieB]

Hi Phoebe,

Well I am one of the "lucky Ones" that is pain free with the InterStim Implant and have been since I had the Implant placed in April 20th , 1999...
I was told right up front from my doctor it was NOT FOR"PAIN"

I also know a lot of people that also have no pain and some with very little pain with the InterStim..

I really think it has a lot to do with the doctor doing this procedure and how your body will accept the device ..
Everyone is so different in this procedure..

I understand your pain as I had live with pain for over 18 years and have passed out from very bad pain....

I wish you all the best but please understand that the doctor should tell you right up front that is NOT FOR PAIN ..

All the best Phoebe!!!

Debbie

[peiti]

InterStim helps my pain

I know Interstim is not for pain. guess I am just lucky.
Bladder pain is not my major complaint, but sometimes it can be unbearable if I eat something wrong or under a lot of stress.
Before Interstim, I had to take 25mg Elavil every day. Now I don't need anything for pain. I still watch my diet strictly and use Prelief if needed.
I used to have terrible bladder spasm/pelvic muscle pain. Now it is under control with the stimulation.
I am not an advocate of InterStim, even I have one now in my body and it works for me. I don't think anyone wants to go this route, but I was left without many choices. One thing good about the Interstim procedure is that you can have a test to see if it is going to help you or not. I personally don't agree with the stage trial (though it is what I had), it is invasive. I really don't understand why they think the stage trial is better than the old trial.
This is just my opinion.

[tigger_gal]

I am sorry you are in pain..... can we please get a fireing squard out for doctors that say it is??? ok just kidding..
I am so glad to see people who normally don't post on this subject, posting....Interstim is not for pain
"Y" posted a great post she added the link to for pain therapy devices..
No knifes for mimi....
I am a pain patient also.... I do have the interstim... it hasn't helped me my pain.....
Debbie and Peti I am glad that got the added perk hoorraayy
I am thrilled....
hugs
Brat

[Teri]

Phoebe~when you say tempory trial what do you mean? Can you describe the procedure???

thankx~

[rachelm]

Petit,

My dr. explained that he likes to do the old trial first because its less invasive and can be removed in the office. If it is successful and the decision is made for a perm one then he does the stage1 trial to make sure the leads are all placed correctly and leaves it in for a week or so then he implants the device in the but/hip. In my case we decided to just do the old trial and see if it gets me through the flarel. My dr. said he could do it for me once a year if I need it to get back on my feet.

My lead moved a bit and the place where it went into my back started bugging me a little so after almost 4 weeks with the trial I decided that I had probably gotten as much out of it as I could because I felt it mostly in my leg today. I went to the dr. and his nurse was able to pull the left wire out but the right side was stuck. It hurt quite a bit when she pulled on it but so she stopped and I waited for my dr. to get out of surgery. He was able to quickly pull it out and while it smarted really bad it settled down by the time I got to the car. So far so good. I'm just praying that it did the trick this time and I'm through the worst part of it. I manage most of the time with diet, drugs, and PT but when I flare in the winter it completely stops my life and I'm unable to walk without pain and have severe retention. I knew that the pain benefit would be a bonus and I'm glad it helped but I knew I had to do something to make my bladder start working again. I'm completely off pain meds for the time being but if I need them there available. The pain meds and some muscle relaxers cause my retention to be worse so it makes a vicious cycle. Last year my flare started in November and worsended until April. I wasn't normal until late May. I hope after being in treatment and trying all the interventions that I'm able to stay on top of things for the rest of the season.

[rachelm]

Teri,

My dr. used the old trial for as long as the leads stayed in place to get me through the worst of the flare. It worked like a charm and so far so good without the wires. This is the trial where under "twilight" anethesia he placed the wires thriough a needle and asked where I felt the stimulation. Then he taped the excess wire to my back and I hooked up to an external unit used in all trials. It's the same thing that people do to test it out and see if it works except we left it in a lot longer than most people during the trial. I had no complications and the sites where the leads entered stayed infection free. I hope it really did get me over the worst and not just for a short time.

Rachel