Got my Bion turned on today :)

[ICLori]

So far so good. It does seem to have moved a slight bit, so the stimulation is not quite in the place I expected it to be, but I think it's still just fine and working.

It's kind of early to tell if it's going to work or not, I should give it at least a couple of weeks to really see, and kind of keep track of my symptoms, but so far so good, in that there are no side effects that I can tell, and everything seems okey dokey.

I'm very very excited and happy to have this Bion in and working! :) I sure hope to see a decrease in my urgency/frequency.

I will let everybody know in a week or two how it's going . I hope so much this device will help other IC'ers. The operation itself was so easy, no big deal at all - not like what I've heard people go through with Interstim. I like the Bion just for that alone, LOL!

Blessings, Lori

[ICLori]

Hmmm...really wondering if it will still work right, even though I'm not feeling the stimulation in the exact place I'm supposed to. Not really sure...

I have an appointment in two more weeks, hopefully I will see my doctor then and I will be able to ask him.

The hard part about being one of the first people to try something is, you don't have a lot of people to ask questions of and compare experiences...

Blessings, Lori

[rubjen]

good luck with the bion, i will say a prayer that it works for you. keep us updated on what is happening. this may be a new help for ic. have you saw a decease in freq & URGENCY YET? was this going to help with pain also? i know the inter stim is mostly for the freq & urgency. lots of luck
ruby

[ICLori]

Thank you so much, Ruby.

I feel like an idiot, but I honestly can't tell at this point if it's helping me or not.

For the past week and a half, I've felt almost normal during the day (without the Bion turned on I mean) and at night, I got irritation from my bladder that made it harder to sleep. You know, the usual IC kind of stuff, worse at night.

Well, yesterday I felt fine with the Bion turned on (but I felt fine BEFORE the Bion was turned on, too) and last night, I had the irritation again of the bladder, found it very difficult to sleep.

The only thing is, I don't know if that irritated feeling is pain, or frequency/urgency. Because I shouldn't expect it to deal with pain. So if that's what it is, I'm stuck with it. But...at this point I just don't know if I'm being helped at all. I guess I will probably learn more as time goes on and I complete some voiding diaries. Maybe then I will get a better grasp on whether or not this is helping me.

The problem is, the Bion is no longer where Dr. B. placed it in me. I can tell, because the spot where I was expected to feel the stimulation, is no longer the spot in which I'm feeling the stimulation.

I don't want to get graphic, but I was supposed to feel stimulation in spot X. When Dr. B. placed the Bion initially, that's exactly where I felt the stimulation. He came close to spot X several times, but did not give up until he got the stimulation to spot X, so I assume it was pretty important to him that the placement be exact, and that I feel stimulation in an exact spot.

Now, the stimulation is not on Spot X anymore. The stimulation has moved about an inch, inch and a half. If he were placing the Bion and I reported where I am feeling the stimulation, he would reach up and move the thing into the correct spot.

So it's no longer in the spot he put it in. It has moved.

What I don't know is how significant that is - and if it will still work even though the device has migrated from its original placement.

Because so far I'm not getting the results I had hoped for - and I don't know if it's because I expected too much out of the device, or if it's because the device is no longer in the right spot and it won't work right because it's not in the right spot.

Blessings, Lori

[patricia1]

Hi Lori wanted to say I hope the Bion works good for you. Of course I have not experience with the Bion, but I do with the Interstim unfort. though. I am going to have to it revised here in the very near future. Long story with that though. But I wanted to say that with the Interstim if the lead wire migrates even the slightest of a bit it can cause the interstim not to work properly. Even just 1/4 of inch can cause havoc. This is the problem with mine. It has moved after having two rear end collision in the same day. Now I know the Bion is completely different but they sound the same with having to be in that certain spot. Make sure you tell the Dr during your follow up you are not feeling it in the same spot. I hope things go as you plan.

[ICNDonna]

I encourage you to telephone your doctor and ask your question today. You shouldn't need to wait two weeks for an answer.

Sending gentle hugs,
Donna

[ICLori]

Thank you, Patricia. I am so sorry you are having go undergo a revision surgery, I hope that it goes well and you never have to have another surgery again.

I did report to them yesterday where I was feeling it. The doctor was never satisfied with the placement until I was reporting stimulation in spot "X" I will call it. The Bion rep asked me specifically yesterday, are you feeling stimulation in spot X (of course he called the spot by its proper name, I'm just trying to be delicate here)? And I had to say, "I don't think so."

Now that I've had the Bion on longer, I can tell better exactly where the stimulation is, and it definitely is not on spot X where they wanted it to be.

I just sent a quick e-mail to the research coordinator for this, who is my point of contact. She was there yesterday, and after I reported the sensation not being in the place where we expected it, she mentioned how sometimes patients form scar tissue that moves the device slightly out of place. I did not think at that time to ask if the device would still function or not when that happened.

Anyway, I sent her an e-mail with my concerns and asked specifically if I can expect the device to work anyway, given that its no longer in the spot where Dr. B. placed it, and, if there is little to no chance of it working properly where it is placed, what the plan is - leave it there anyway and say "oh well" or go back in and explant/re-imlant? (I hope the latter, of course.)

Thank you so much - good luck with your revision surgery, I hope it goes very well and you don't have pain or anything afterwards.

I will let you guys know what happens with this.

Blessings, Lori

[ICLori]

P.S. Thank you so much, ICNDonna, I just sent an e-mail to the research coordinator (I can't call the doctor directly, but the nurse research coordinator is absolutely wonderful and will do whatever is necessary the minute she sees my e-mail. I am sure she will inform the doctor.)

Whoo boy, that was one of my fears, going in to this. They had such a terribly hard time finding the "sweet spot" with the electrodes during the testing, and if I so much as breathed heavy, the needle moved ever so slightly and we lost the sweet spot. The stimulation changed, and they no longer saw on the screen the signal they wanted to see, and had to move the electrode again to regain the sweet spot. The nurse said she'd never seen any patient like that before -with most patients you can move the thing all over the place and still have it be in the "right" place. With me, apparently, even the slightest movement caused the electrode to no longer be in the right place.

Well, I will let you guys know if I hear anything. If I need to get it explanted and implanted again, no problem, that is what I will do. What I don't want is to simply leave it in the wrong spot, with no hope of it working properly. That would just be silly.

But maybe my impression is wrong, maybe it doesn't have to be in the exact spot to work. I just don't know. I hope the medical people will mull this over and will know what is best to do. This is such a new device, I wonder if all the answers are known...or not...

Blessings, Lori

[1tuffcookie]

Lori,
I'm glad you contacted the research coordinator about this! Keep us posted. My prayers are with you.

Andrea

[ICLori]

Thank you Andrea! I'm sure if it's anything to worry about, I'll get a phone call or they will address it when I come in for my appointment in two weeks. If I have to get operated on again, oh, well. Just wish I could figure out a way to keep this from happening again - it's not stitched in place, just free-floating and they hope it stays in place....maybe they can use that surgical super-glue to glue the thing in place? If they have to reoperate on me I will ask about that idea...

Thank you all so much for letting me worry out loud. It helps sometimes.

Blessings, Lori

[curlycue]

Lori, I wish you the best of luck with the Bion and hopes it works for you. I was not able to get on it at this time. I will keep you in my prayers. You GO Girl.

[ICLori]

Hi, Ruth, I'm so sorry you weren't able to participate in the trials at this time. I hope that something will come along soon though to help you be comfortable once more and make the symptoms go away.

Talked to another Bion patient, apparently my stim is okay, can be anywhere in the general area and it works okay. So I am feeling relieved about this. As usual, I'm worrying about nothing, LOL.

I wonder why the doc was so insistent on me reporting stimulation in a certain area though...hmm...well if I ever see him again (not sure if Dr. B. will ever be part of my follow-ups or not) I will ask him.

Thank you all so much for the well wishes and everything! :)

Blessings, Lori

[Babs RN]

Lori,
Sorry I am bringing up the rear here--I just hope the Bion turns out to be a good treatment for you. I will keep you in my prayer sweetie.

Hugs,
Barb :kissing: :love:

[ICLori]

Thank you so much, Barb! :) You're in my prayers, too.

I just hope more than anything that this Bion device will be a helpful thing for IC'ers, without the drawbacks that we've seen with the Interstim.

Blessings, Lori

[ICLori]

Just an update - I'd say I'm comfortable a good 80 percent of the time, maybe more, so far with this Bion, and they say it works better and better the longer it's in, and does take time to reach peak effectiveness, so I can hope to be comfortable even more of the time, after another month or two.

It's making a big difference in my life - I'm able to sleep much better at night, the bladder pain that does remain is handled pretty easily by a combo of supplements and TUMS and water, and I've just discovered a surprising side effect that I did not expect with this device - I apparently no longer have menstrual cramps.

Go figure. I've had horrible cramps my whole life that would start even before my period would start. I'm having my period right now and not one single cramp, not even a hint of a cramp. This is the first time in my menstruating life I've ever not had cramps, so I figure it must be the Bion. Thank you, Bion, LOL!

Only bad news is, my remote control apparently has a short in it, it keeps eating up batteries (a battery a day or every other day) so they are going to get me a new remote right away. No big deal, I can change the stimulation with the charging station, it's just that I liked the remote because it was more convenient. Well, I will soon have a working remote, anyway. Just as long as my Bion doesn't develop a short, that wouldn't be good, LOL!

Blessings, Lori

[ICNDonna]

I'm so happy for you. I hope you continue to improve.

:grouphug:
Donna

[rubjen]

what great news!!!!!!!!! keep us updated. it is great to know that there are new things being discovered. to help us with ic.
RUBY

[curlycue]

I am so Happy for you. I hope it works like that all your life. Keep us updated.

[vm]

So glad to hear it is helping you!!!!!!!!! That is great news, Lori! :) :) :) :) :) I know you have been uncomfortable for a long time and searching for something to help. :kissing:

[ICLori]

Thank you all so much! I was a bit uncomfortable last night for awhile, but my period was starting, and that's always when I am horribly bad, so...I figure, this doesn't work (yet) 100%, but it sure makes me a lot better than I was, so that's good enough.

Plus...this is weird - my cramps aren't nearly as bad as normal, either - menstrual cramps I mean. They are only about 25% as bad as they are normally. The Bion must be helping with that somehow, too.

Blessings, Lori

[ICLori]

Just trying to give more info about my experience with the Bion as I go along. I want to record kind of every step of the way because it might help others if they get involved in the trials for this device, too.

I'm gradually turning the stimulation up higher and higher, as my pudendal nerve becomes less sensitive and more used to the stimulation.

At the level of stimulation I'm at now, I can feel the muscles on the left side of my vagina tensing with the stimulation, but it's not anything that bothers me.

I haven't had any shocks whatsoever (sometimes people report shocking sensations with the Interstim)....no shocks when having a BM, when passing through store security devices, or when moving around in various ways or exercising.

In general, no problems so far. No unpleasant sensations.

For sure it is helping me a great deal with urgency/frequency, but it doesn't seem to be (yet) eliminating 100% of the irritation (I guess that falls under pain) - that "UTI-feeling" as I think of it.

I do still have hopes that it will help me with that feeling, the longer I have the stimulation on. I am told this device works better and better the longer you leave it on.

So far I am very happy that I made the decision to take part in this trial.

Blessings, Lori

[ICLori]

Had a bad night last night. Apparently when it comes to the pain portion of IC, I'm still on my own.

And I don't know what to do about it because every med that I try increases my bladder pain instead of decreasing it. This sucks. :(

I guess I will try Cyclosporin A next if I can get in to see Dr. S. and if the Bion study people will allow me to try that med.

Blessings, Lori

[rubjen]

Sorry You Are Having Pain Today. I Hope You Will Be Able To Get Some Relief,i Know How Much You Want This To Work.is This Like The Inter-stim,itdoes't Work On Pain? You Are In My Thoughts Daily.
Ruby

[ICLori]

Hi, Ruby, thanks. Yup, before they implanted this, they warned me not to expect any help with the pain.

But the thing was - I wasn't sure if that irritated bladder/UTI feeling was pain or if it was part of urgency/frequency. So I thought - well, let's give the Bion a try.

And I'm still glad I did it, because I feel like my voiding has been cut way back - maybe 1/3 of what it was. I don't void much more often than a normal person now. So that in itself is a good benefit.

And I don't spend as many hours in pain as I did before - I think maybe only 2/3 as much time as before - so that helps some too.

Plus there are still some supplement I haven't tried out there, I just got some artichoke extract capsules today and am going to give those a try.

Blessings, Lori

[TexasHoney]

Lori, I hope your condition continues to improve.

Take Care and Best Wishes
TexasHoney

[ICLori]

Thank you so much, TexasHoney. I actually tried aspirin for the first time last night to help stop my bladder pain - and - jaw drops to the floor - it actually worked.

I never tried aspirin before because I thought the acid would make my bladder flare worse, and because I tried all the other pain relievers - naproxen sodium, ibuprofen, tylenol - and they didn't help me.

Strange. Anyway, from now on, when I get bladder pain, aspirin will be the first med I will reach for.

Blessings, Lori