interstim trial begins soon

[scarlette]

I have the first of the two stage procedure scheduled for one week from now. I am so worried. I had had complete retention at times but this past week has not been very bad with that particular sypmtom. I wonder if a flare-up is over, will the trial really give me the answers that I need?

Also, I am really going into this with hopes that I can get some pain relief. I unerstand the surgery is not for pain, but some people get the huge benefit fo pain as a side effect of everythign else. I have so much pain externally aroudn my urethra that sitting upright is difficult and relationships seem like a complete impossibility. I'm at that point where I don't know what value my life has if it goes on like this. I figure doing the trial for two weeks will give me an indication of whether or not this coudl help with my pain, along with my urinary symptoms. But I am not sure I am doing the right thing. I think the trial is the only way to get the answers I need to make a decision. However, I am not sure relief of my urinary symptoms, as bad as they are at times, is enough to want to have a COMPUTER in my backside.

Also, because I cannot sit directly upright, putting pressure on my pelvic floor, I am afraid that having a computer will only cause greater difficulty. For those who have the implant, can you slouch back and sit on it? Does that get painful? I don't have a whole lot of fat too cushion it if I sit on it all the time. Is this a realistic fear?

Thanks. Scarlette

[littlebear]

Hi Scarlette,
I haven't had the prodecure yet myself. But, I'm scheduled for my trial on the same day that you are (and, if I'm remembering correctly, I think that Tami is too), so I just wanted to pop in and say hello!

I'm sorry to hear that you're not feeling good right now. Has your Dr. asked you to keep a voiding journal the week before your trial and during your trial as well? If not, you might want to think about it because it may help you to get a sense of how much improvement you'll have with frequency and urgency. Also, if you look back at some of the old threads too, I think some people have written that the interstim helps with pelvic floor stuff.

Even if the interstim doesn't help with your pain, and with most folks it doesn't, it might still be worth it if it helps with the other issues. I'm sure that some of the other girls can give you a sense of all the pros and cons they've experienced (and, I'm sure they'll all be really helpful too). But, please be careful if you're just going to try it for pain. I'd hate to see you go through all this and then feel even more let down than you do now.

No matter what, though, we're all here for you and, one way or another, I'm sure that you will find a way to deal with your IC and enjoy life again. Sending you all my best wishes, little bear

[rachelm]

Scarlett,
I'm with you, I think the trial is at least worth a shot at getting some relief. I'm scheduled to have the trial on Tu. this week. I'm a little different though than most because my dr. and I are going into this planning on it being a temporary procedure that we will take out in a few weeks. We're hoping that the trial will be just enough to stop the retention and relieve the spasms. Since I get much better when I'm not flaring and I only flare for 4 months out of the year we don't want to make the interstim permanent. I haven't heard of anyone else using it this way but I trust my dr. and as far as I'm concerned it's worth a try and if it doesn't work out at least I know I tried. I'm not commiting to anything long term at this point so I'm not as nervous as I would be if I were having the perm. implant.

Good luck on your trials ladies. Take it easy until then.

Rachel wink

[Tami Stambaugh]

Well, I just thougt I would let you know that I am still waiting on BCBS to approve it. they said sometimes they don'give them the approval until the day before which in my case would be Friday (27). I am having a stressful week worrying about it. I am having a colonscopy done on Wed. So tomorrow I will have to be drinking that nasty junk that will throw me into a huge flare. I am supposed to do the trail Mon. March 1. Pray that they get it approved so I won't have to go through this decesion again. It is making me a nervous wreck as well as depressed.

Tami hi angel kissing

[Teri]

Scarlette~your post really bothered me. It sounds like that little guy inside of you is yelling to be heard, do ya think???????

I had my original implant done in 1999. IT worked for 18month and quit. I had a revision done 6 months later and the whold time that little voice inside of me was saying "don't do this Teri, don't do it." Well, even tho the trial was a bust and I had zero results, I went against that inter voice and ended up with an implant that did not work and I ended up in twice as much pain and I was before the surgery. After 2 year I had the unit removed a few months ago and NO MORE INVASIVE SURGERY FOR THIS GIRL cussing

I too suffer from severe retention at times. The original device did help with that, infact, the 18 months it worked for was a dream. IT did NOT help any of my pain at all but it was sure great peeing 4 or 5 times a day.

In the end, you have to make your own decision. I do know that coming soon is a much smaller device and the surgery will be a little easier so maybe if you listened to that voice, by the time you are sure, they will be offering the new unit.

wishing you the very very best blink

[rachelm]

Tami,
I go tomorrow to have the trial interstim put in. I'm looking at this as temporrary. For us at this point we can try it out, if it helps we can consider our options and make an informed decision based on the experience with the trial. If we don't like it we can have them take it right out no harm done. In my case we're not planning on it leading to a permanent implant we want to give my bladder a jump start to stop the retention and spasms and hopefully when we take it out I will be through the worst part of the flare and I won't need the interstim perm. We will wait and see what happens one step at a time.

Everyone has to make this decision for themself. I think it's always important to understand all possibilities and what make an informed decision. Ultimately we must always be comfortable about our decisions. I am not too nervous at this point because I know it can come out. I'm sure if this were the night before the perm. implant I might be a bit more nervous. That's why I think the trial is good. It gives us a taste of what it might do for us personally. Good luck in your decision. If it's meant to be I hope that your ins. approves it in time and that you most of all feel good about it.

Please let us know what happens. I'll be back on the boards as soon as I can after surgery. I'm sure it will be at least wed. I'll keep you posted on my experience and maybe it can help you know what to expect.

Take Care.
hi Rachel

[littlebear]

Hi again Scarlett,

I thought I'd drop you another line to say hello again and to bump up your post (I don't think your question about sitting/slouching was answered).

Also, it sounds like, even apart from the interstim question, you're feeling pretty bad right now. It sounds like things are very tough for you too. I hope that you have gotten a sense from the boards that, although figuring out what works for you can be a bumpy process, many of the veterans around here have built really wonderful lives for themselves (not to put Donna on the spot, but she is a great example of this, I think).

But, I know that you have to start with alleviating your pain. Other folks have more experience with the kind of pain you have than I do. Maybe they can give you some sense of what they've experienced.

I hope that you know that we're all here for you. I also hope that you're able to find some relief very soon. Keep us posted and let us know how you're doing if you get a chance.

Best wishes, little bear

We're all here for you

[peiti]

scarlette,

I didn't have any problems sitting or standing during my one-week trial or right after the permanent implant. Actually the device and the lead were placed a little bit under the waist. However, I did feel a lot of pain on my incision site when lying on the bed and trying to move my body.


BTW, InterStim has helped a lot on my bladder pain and spasm. I am able to have sex without pain afterwards.

Good luck.

[scarlette]

Thanks for your responses. I have my pre-op appointment in a few hours and am supposed to do the surgery March 1. I'm just getting such mixed messages on the pain issue. I am having the two-stage implant, so it does involve 3 small incisions even if it doesn't work out - but it is supposed to be more indicative of the final result the implant would give than the less invasive trial. I guess what my doctors are syaing is that my external pain around my urethra (severe!) is the place all the pelvic floor muscles cross over each other and meet. Therefore, if I have pelvic floor spasms, this is a likely referral point for the pain. The Interstim does relax the pelvic floor - that is how it gets rid of retention for those of us with that problem. But my understanding is that if I have another problem with nerves misfiring, that it will not help that?

For those who have foudn a way to manage this kind of pain, how have you done it? I am completely unable to take any anticholinergics (that includes amitryptiline etc. - all anti-depressants) because they relax the bladder muscles and thus, I cannot urinate. I tried Neurontin and it only gave me double vision without helping me. What other options are there? I use lidocaine all the time but with only minimal help.

I feel like I'm doing this trial for the wrong reasons, but I have not been given any other hope for pain relief. One doctor actual told me there were no medical options available to me. I know that's not true even if narcotics are all he knows and he disagrees with prescribing them. But what is life with this pain? It interferes with every moment of my life and makes dating/relationships impossible. Not trying to share my frustration here - I just want to know if anyone has other options or suggestions for pain management if Interstim is not going to work for me? Thanks for your support - Scarlette

[rachelm]

Scarlett,

I understand your concerns all too well. I just had the trial interstim placed on Tu. So far I've had dramatic results. 30 min. after they turned me on I went on my own for the 1st time in 3 weeks. I consider pain my biggest problem until the retention and still it was the worst of the two. I was told by my dr. that most of his patients felt a reduction in pain stemming from the bladder spasms. It's hard to know where the source of the pain is all the time but I decided to give the interstim a shot. Sure enough I've had a lot less pain in the last 2 days since the surgery.

I didn't do the stage trial because my dr. is still planning on taking out the leads in hopes that it got me through the flare. I'm usually a lot better when I'm not flaring but then I'm in excrutiating pain during the flare season. For me it's late winter early spring. When summer rolls around I am fine and can hardly believe there's anything wrong with me. However, if he takes the trial leads out and my symptoms return I will not hesitate to ask for a stage trial because I've had such great results so far!

As far as pain not helped by the interstim I think it's important to continue managing pain with meds and pf therapy as long as you need it. I'm still taking my morphine but today instead of taking 2 at a time (30mg) I'm taking 1 (15mg) each dose to see if I can do o.k. I'm still having some pelvic pain when I sit for a period of time at the computer but its sooo much better than before.

I would think about it some more and talk to your dr. about your concerns. If you're uncomfortable going thru with the procedure wait until your ready or decide against it. My dr. told me I could change my mind at any time but for me I needed to try something because what I was doing kept me from living. There are other treatments that you could look into so think about it. I thought it would be harder than it was. I'm very pleased that I've had such good results.

Rachel hi

[Mimi-in-Chicagoland]

rachelm--I am so glad you have relief with your implant!

Scarlette--my implant isn't painful to lean back on or sit on...its not that far down in your bottom. Once it heals, its fine. I have noticed that the implant generator can get rubbed by chair backs, etc. but you can control that. Its not painful, just annoying. You learn to sit to accomodate it...and its worth it if it works. You'll notice immediately if the implant makes a difference for you. Have you ever considered pelvic floor dysfuncion physical therapy? There are physical therapists that specialist in this. They use biofeedback to teach you to relax your pelvic floor muscles. (its a weird treatment, but I've had it and it helped a lot) They also teach you stretching exercises. I was referred to a therapist through a pain management doctor who specialized in pelvic pain. It works for some people. I'm sorry that you had a doctor that said nothing could be done for you. I have been told that, and I have a working interstim that controls my symptoms...something that I didn't think was possible. I hope that you can find a pelvic pain doctor that can get you into therapy or you can try the implant. Perhaps therapy first. Your insurance will tell you how many visits you have per year...I didn't require nearly as many as I had to use...and the visits per year are PER INJURY/ILLNESS usually. I wish you the best.

[rachelm]

PF therapy was helpfull for me too. My urogyno has someone that does the biofeedback in his office. They have me insert a tampon size thing in my vagina and it sends little impulses that strengthens the pelvic floor muscles and teaches you how to control relaxing and tensing these muscles.

I have also gone for occupational therapy that taught me stretching and does lymphatic work and strain cross counter strain where she holds my legs and helps relax the pelvic and hip muscles. It definitely requires commitment to relax and do deep breathing as she works on my as well as keeping up with the assigned exercises. Unfortunately it's sometimes not enough to stop the pain cycle but it certainly helps manage it some. She also had me buy an exercise balance ball to sit on and do some pelvic tilts to stretch my lower back and pelvic muscles.

I can't do any therapy now while I'm doing this interstim trial but I plan on doing the PF biofeedback again when I'm over the worst of this flare and finished with the trial. Unfortunately my O.T has moved so I will be in the market for a new therapist.

I hope this was helpful. I still have had to take pain meds since the trial and while I was doing therapy. But at least all that I've tried seems to be helping me manage the pain better.

Rachel