Update on my Bion

[ICLori]

Still doing very well on my Bion. I do have some pain at night, do still need to use the Percocet quite often in order to get to sleep, but I am getting better I think, slowly. I am comfortable almost all the time now during the day, and my urgency/frequency is way down, probably a bit less than half of what it was.

In fact I just recently filled out my first post-Bion-activation 5-day voiding diary, and I remember what my entries were in my pre-Bion voiding diary, and I can tell you that I'm voiding roughly only half as often or less as I was before. Right now, I'm voiding between about 9-11 times in 24 hours. Before, I would void anywhere from about 22 times per 24 hours (my best days) to over 40 times in 24 hours (my bad days). Since normal voiding is about 7-8 per day for most people, I am delighted to think that I am "almost" normal in my voiding habits now.

My husband especially noticed the difference on a recent long car trip we took. We are moving to Ohio from the Northern Virginia area in June, and recently drove there to look for place to live.

Normally, on car trips, either I have to take a Percocet to shut my bladder up (and even then it only works just so well, it doesn't make me like a normal person exactly) or I have to hit every single rest stop (every 15-30 minutes).

This time, my husband was amazed and shocked at how long I was going between stops. He said, "I have to go to the bathroom more often than you do, now!" And it was true that at one point, he had to go and I didn't feel any need to go. So that was kind of amazing. My husband thinks I'm pretty much cured right now, because of this device. I wouldn't go that far, but I know that my voiding is very normal now. The only thing is, I do still have some nocturia (going at night) that is maybe more than average. That's where those extra couple of voids per day come in, I think. I void like a normal person now during the day, but at night when I should be sleeping I still have to go to the bathroom 2-4 times. But that's not so bad, I mean it used to be I'd have to go 9-10 times on my good nights and much more than that on my bad nights. I can live with 2-4.

Oh, and I noticed my bladder can hold a lot more now. Twice as much, or pretty close to it. Before, my biggest void was one or two voids where I managed to hold 4 ounces (generally after waking up after taking Percocet). Now, I had quite a few voids that were 7 or 7 1/2 ounces, and most of my average voids were 3 3/4 ounces to 4 1/2 ounces, whereas before the normal was maybe 1 1/2 ounces.

The only part that isn't perfect just yet is that my bladder still gets irritated around my periods, if I eat or drink the wrong thing or take the wrong medicines, and at night. So I do still count on Percocet to help me during those times, for sleeping at night. But I no longer need it during the day, and I find that often, half a tablet of Percocet works just fine. So I can see that the Bion has helped a good bit with the irritability factor/pain factor, although it has not eliminated it entirely 100% yet. (Actually they told me, not to expect it to help any with the pain, as it's for urgency/frequency rather than pain, but of course we were all hoping against hope it would help some with the pain, and I really do believe it has helped me some. And maybe it will help me more as time goes by.)

I was thinking today, that if all IC patients have pretty much the same experience as I have (I know, I know, I'm just one patient, don't know how others will respond) then this device could be a really great tool for helping with IC, especially since the surgery isn't as bad as for the Interstim and since there are fewer side effects.

I wonder if I should have put this post under success stories? I hesitate though because this is an experimental device, I'm really happy so far but I don't know what will happen down the road. So I'm still kind of just...taking it one day at a time and trying to let you guys know how it's going so that in case you get a chance to try a Bion, there will be information here from people who have undergone the trial. I hope more people will write and give lots of details so it will help everyone if they have a decision to make about the Bion.

Thanks for letting me give you guys an update on how the Bion is working. I am now approximately 45 days out from when the Bion was first activated.

Blessings, Lori

[dancemomof2]

So thrilled to hear about your so far success. I know car trips aren't as rough on me either since my Interstim.

[tigger_gal]

Thanks for updating us on your success.. I am so happy for you.
hugs
brat

[rubjen]

I Am So Happy To Hear The Bion Is Working For You. An I Do Hope It Will Be A Good Thing The Ic'ers Too .we Need As Many New Things As We Can Get,i Sure Would Like To Hear Of Something That Helps With The Pain.i Have Wanted To Post But Can Not Seem To Be Able Too,guess I Will Just Keep On Answering Like This.i Am Having Some Problems ,but Don't Think It Is All From My New Inter Stim. Lol Wishing All Good Things For You.
Ruby Jean

[Sarojini]

YAY... so glad to hear that your frequency is definitely reduced !!! :) :D

[ICLori]

Thanks, you guys!

I should say, too, that I'm not noticing any bad side effects or anything. In fact, unless I am consciously trying to "feel" my Bion working, I don't feel it at all anymore, it's just background stuff I guess.

Blessings, Lori

[SharonA]

Lori...I am so happy this is working for you and I so hope it continues. I remember when you first came here and how you were suffering. I am so glad things are turning around for you. :kissing:

[Katrina]

:woohoo::woohoo: I am so happy it is helping you so much! Thank you so much for sharing! After all that you have been through you really deserve some continued success! :grouphug:

[Annie2]

Lori,

I am so thrilled for you!!! :woohoo: :woohoo: :woohoo:

So you are going to become a buckeye? What part of Ohio? I am in the Dayton area and am wondering if you might be transferring to WPAFB. My hubby retired from there in Jan. We will be moving back to my hubby's home state of NH within the next year and are getting ready to put the house on the market. Hmmm........ :idea: Lori, I know this great house in Ohio that is going to be available and is already adapted to IC...lots of potties and all with comfy padded seats ;) Seriously, though, welcome to Ohio!



I know how difficult your IC has been and am so happy the bion is working so well for you!!!

:grouphug:
Annie

[mom_in_ma]

Lori,
I'm thrilled to hear about your success with the bion. Woo hoo!!!

[Babs RN]

Lori,
I'm thrilled the Bion is working for you. Good luck with your move to Ohio.

Hugs,
Barb :grouphug:

[ICLori]

Hi, Annie, yup, my hubby is going to be stationed at Wright-Patt! He's Army, but will be teaching Physics at AFIT. They pull instructors from all the branches of service.

We already bought a place in Beaver Creek, LOL, or I'd take a look at the home :) The one we got has 3 toilets, that's important, LOL! It was kind of a whirlwind thing, we got there and said to our real estate helper lady, "we have two days to buy a home..." We looked at fifteen places and found one we both loved.

We just hope the housing bubble in this country doesn't pop just when it's time for us to move again in three years and re-sell....

Thanks again to everyone for the well-wishes. I just wish they'd invent something that works for urgency/frequency AND pain. I mean, this is helping me some, I'm sure of it because I no longer spend day after day in pain, the pain comes only mostly at night and sometimes around my period, but still...I wish the pain would go away entirely. I hate, hate, hate having to ask doctors for narcotics, I hate it so much. It's so humiliating. And I know what they think. Well, I will cross my fingers that I will find a compassionate doc at Wright-Patt. Who knows.

I hope they find a cure for this soon. I'm seeing more and more people diagnosed with this, you know? I don't think it's just that the doctors are catching it more often - although that is happening now more too which is good - but I think it's just in general becoming more common. We need a cure so badly.

Blessings, Lori

[rubjen]

Lori, Be Sure To Keep Us Posted On How You Are Doing. I'v Told My Uro About The Bion And He Was Interstied On About It. He Does A Lot Of Inter Stims,but Is Always Looking For New Things With The Ic. Good Luck On Your Move .and I Shall Pay That You Will Find A Good Doctor.
Ruby Jean

[Bianchi]

:loco: Um, I hate to be ignorant, but I dont know what a Bion is? Is it similar to the interstim?
Just wondering and happy it's working for you.
Bianchi

[curlycue]

Lori
I am so glad that you are doing GREAT. I hope that the bion is the new thing for us ICERS with the frequency issues like myself. Keep us posted. Good Luck on the move.

[ICLori]

Hi, Bianchi, yes it is somewhat similar to the Interstim. They are both neuromodulation devices. The Bion is a brand-new device, just being tested now, not yet FDA-approved. They are running trials for it here in the U.S. If you use the search function on these message boards, you will find dozens of posts about the Bion.

Blessings, Lori

P.S. Thanks, Rubjen and Curlycue

[Annie2]

Lori,

Welcome to the area!!! Quite familiar with AFIT. We lived in Beavercreek long ago. Now we are in the southern burbs. Still, I am only a 15-20 minute drive from the "creek" and know it well. We'll have to get together for lunch once you are in and settled! For a while there I was wondering if you were going to be my new neighbor. The house across the street from us went on the market, had 12 showings in six days, had multiple offers and is under contract for more than the asking price. The market here is really hot. I am praying it will continue for awhile until we are ready to sell!

Unfortunately, we have had a very difficult day today. My husband's 97 year-old father (lives in NH) had a bad stroke this afternoon and is in the hospital. Things are not looking good. We may be going to NH but are waiting for more info from the doctors. Anyway, feel free to PM me and we can chat off the boards...but please understand if it takes me awhile to respond.

Again, I am so happy to hear the Bion is working so well for you!

Annie

[ICLori]

Oh, Annie, I'm so sorry about your father-in-law. Sending prayers for him and your family.

Sounds like the real estate market there is doing very well - I think you will have no problems selling your home, I wish you the best of luck!

:)

I'd love to get together for lunch once I get moved in a bit, thank you so much for the offer, it will be fun!

Blessings, Lori

[Babs RN]

Lori,
They have some great docs for pelvic pain at Wright-Patt. I have heard awesome things about their hospital. I have always had better luck with the Air Force docs anyway.

Hugs,
Barb :grouphug: :kissing:

[patricia1]

Hi Lori...I am so happy that the Bion seems to be working well for you. I :pray: that this will be an easier answer to the surgical procedure that the Interstim. I had my revision surgery this past Thursday and I would have to say this has been harder than the trial and the implantation done the first time. I have not been happy with mine for a long time and after the revision I am still not statisifed. So to hear this about the Bion is so encouraging

[ICLori]

Thanks, Barb! I hope I will have good luck with the Air Force docs. If I can just get 30 percocet per month, I know I can get by. That's not so much to ask for, is it? It doesn't seem like too much, when I have pain almost every night and can't sleep without the Percocet.

Hi, Patricia1, I'm so sorry you are having so many problems with the Interstim, to be honest I have heard many horror stories about the Interstim and that's part of what convinced me to be in the trial for the Bion instead. I hope that this revision surgery will be a success and you will be feeling much better soon.

And for all of us I pray fervently every single day for a cure to come soon, or at least some very very very effective remedies that work for at least nearly all of us.

Blessings, Lori

[ICLori]

You know, the nurse coordinator had suggested I turn up the stimulation on the Bion whenever I was experiencing pain. I had tried that once or twice at night, and it didn't stop the pain (my pain was too great at that point I think.) I couldn't turn it any further up because it was painful in and of itself to go too high.

Anyway, though, I was having mild (3-4 level) pain because of my period, my bladder always acts up some during or before my period, and I thought - well, it didn't work at night, but maybe I'll try again - so I turned it up as high as I could stand it (hurt at first but my body adjusted after about half an hour and it's okay now) and lo and behold, bladder pain went away. Cool! I'm glad she told me about that, and I'm glad I tried it again after she told me about it. I mean, I had already tried it at night, but I guess my pain level was just too high then for it to work, maybe.

Well, anyhow, maybe this means I won't need to use as many Percocet. I'm still just desperate for some way of not having to use percocet. Maybe if I can just kind of force my body to get used to a higher stimulation level, I can get it high enough that it will stop the pain at night, too. That would be nice. I will have to work on it and see what happens.

Just muttering to myself here...in case another Bion user stumbles across this message. There might be some others out there. Plus there might be some in the future. Everything I learn about my Bion, I'll put right here and maybe it will be of some use to someone someday.


Blessings, Lori

[wolfaleena]

lori do you still have the bion and if so how is it going for you?

[ICLori]

Hi, Wolfaleena, I still have the Bion. It's currently turned off (it gets turned off for 45 days as part of the medical trial I am in.)

As near as I can figure, the Bion was helping me a bit with pain (I was not in pain as many hours per day, with the Bion on, as I was with it off) and quite a bit with urgency/frequency (I think it cut the number of bathroom trips I made in about half...)

Are you considering the Bion? I am still looking for something that will completely get rid of my bladder pain. My urgency/frequency is no longer a problem, but the bladder pain or feeling of bladder pressure/always having to go, is a big problem and I got an okay from my doctor recently to try Cyclosporine-A, which I will do. I hope it will help me. I expect to start it in about three weeks, when this part of the Bion trial is over (I don't want to take the med and mess up the trial results.)

Blessings,
Lori

[wolfaleena]

thanks for getting back to me.. what is Cyclosporine-A?

[ICLori]

Hi, Wolfaleena, it's an immunosuppressant drug that is used (in high doses) to help patients who have transplanted organs to not reject their transplanted organs. In low doses, it is used in many diseases such as Crohn's disease, ocular rosacea (a very small dose is put in eye drops) and other inflammatory and/or autoimmune conditions.

Some small studies have shown promising results when treating IC patients with Cyclosporine-A, and some urologists now are suggesting Cyclosporine-A treatment for patients, especially if they have been refractory to other, more standard treatments for IC.

I've tried and failed every other treatment for IC, so this is kind of my last hope.

I will let everyone know how I do on Cyclosporine-A.

Blessings,
Lori

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J Urol. 1996 May;155(5):1591-3. Related Articles, Links


Cyclosporine in severe interstitial cystitis.

Forsell T, Ruutu M, Isoniemi H, Ahonen J, Alfthan O.

Fourth Department of Surgery, Helsinki University Central Hospital, Finland.

PURPOSE: Cyclosporine is a widely used immunosuppressive drug in organ transplantation and recently it has been used in several autoimmune disorders with good results. Because interstitial cystitis may have an autoimmune etiology, we wished to determine whether cyclosporine has any effect on symptoms in patients with severe interstitial cystitis. MATERIALS AND METHODS: A total of 11 patients, who fulfilled the criteria for interstitial cystitis according to an international accrual form, received cyclosporine for 3 to 6 months at an initial dose of 2.5 to 5 mg./kg. daily and a maintenance dose of 1.5 to 3 mg./kg. daily. Blood pressure, serum creatinine and cyclosporine concentrations were monitored regularly. The patients completed frequency-volume charts at 2-week intervals. RESULTS: The frequency-volume charts showed favorable effects. Micturition frequency decreased (p<0.01), and mean and maximum voided volumes increased significantly (p<0.001 and p<0.01, respectively). Bladder pain decreased or disappeared in 10 patients, allowing for storage of large urine volumes. Serum creatinine did not change with the dosages used. Mild hypertension occurred in 2 patients and resolved after the cyclosporine dose was lowered. After cessation of treatment symptoms recurred in the majority of patients. CONCLUSIONS: The findings revive the concept of interstitial cystitis as an autoimmune disease.

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1: J Urol. 2004 Jun;171(6 Pt 1):2138-41. Related Articles, Links


Long-term outcome of patients with interstitial cystitis treated with low dose cyclosporine A.

Sairanen J, Forsell T, Ruutu M.

Department of Urology, Helsinki University Hospital, Helsinki, Finland.

PURPOSE: We evaluated patients with interstitial cystitis who had been on cyclosporine A treatment for at least a year. Symptom improvement on micturition charts and subjective expression of bladder pain were recorded. Side effects and safety of medication were evaluated. MATERIALS AND METHODS: A total of 23 patients (20 females and 3 males) fulfilling National Institute for Diabetes and Digestive and Kidney Diseases criteria of interstitial cystitis were included in this study. Age of patients at followup was 65.7 +/- 7.6 years (mean +/- SD). Mean followup was 60.8 +/- 35.7 months. Before starting cyclosporine A treatment multiple first line therapies had been tried without clinical help. RESULTS: The number of voidings in 24 hours was 20.8 +/- 6.3 before treatment. After a year of cyclosporine A treatment it was decreased to 10.2 +/- 3.8 (p < 0.001). Maximal bladder capacity increased from 161.8 +/- 74.6 to 360.7 +/- 99.3 ml in a year (p < 0.001). Mean voided volume increased from 101.4 +/- 42.7 to 246.4 +/- 97.9 ml (p < 0.001). The effect was maintained throughout followup. Of 23 total patients 20 reported no bladder pain on cyclosporine A treatment and 11 patients stopped treatment due to a good clinical effect. In 9 patients symptoms recurred within months but disappeared again after cyclosporine A treatment was restarted. Side effects of medication were infrequent. CONCLUSIONS: Cyclosporine A treatment was safe and effective in treating interstitial cystitis. The achieved therapeutic effect was maintained in the long term. Cessation of medication led to recurrence of symptoms in most cases.

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Cyclosporine A and pentosan polysulfate sodium for the treatment of interstitial cystitis: a randomized comparative study.

Sairanen J, Tammela TL, Leppilahti M, Multanen M, Paananen I, Lehtoranta K, Ruutu M.

Department of Urology, Helsinki University Hospital, 00029 HUS, Helsinki, Finland. jukka.sairanen@hus.fi

PURPOSE: In a previous retrospective analysis, cyclosporine A (CyA) was highly efficient in treating patients with interstitial cystitis. A prospective randomized study with this immunosuppressive agent was warranted. We compared CyA to pentosan polysulfate sodium (PPS) in patients with interstitial cystitis.

MATERIALS AND METHODS: A total of 64 patients with interstitial cystitis meeting the National Institute of Diabetes and Digestive and Kidney Diseases criteria were enrolled in a randomized prospective study. Patients were randomized in a 1:1 ratio to 1.5 mg/kg CyA twice daily (27 women, 5 men) or 100 mg PPS 3 times daily (26 women, 6 men) for a period of 6 months. The primary end point was daily micturition frequency, and secondary end points were mean and maximal voided volume, number of nocturia episodes, O'Leary-Sant symptom and problem indexes, visual analogue scale for pain, and subjective global response assessment.

RESULTS: CyA was superior to PPS in all clinical outcome parameters measured at 6 months. Micturition frequency in 24 hours was significantly reduced in the CyA arm compared to the PPS arm (-6.7 +/- 4.7 vs -2.0 +/- 5.1 times). The clinical response rate (according to global response assessment) was 75% for CyA compared to 19% for PPS (p <0.001). Although there were more adverse events in the CyA arm than in the PPS arm, 29 patients completed the 6-month followup in both groups.

CONCLUSIONS: CyA is more effective than PPS in interstitial cystitis.

[wolfaleena]

when will you find out if you can be on it? do you have other auto immune diseases.
. this study sounds familiar to me.
i may have come across it before..
i have lupus as well as ic..

i am on narcotics for pain and it makes me feel sick!
i wish you all the luck in the world!!! we all need that right?

[ICLori]

Actually, my doctor has already given me the "go ahead" - he made sure with a blood test that I was healthy enough to begin treatment with it.

So, in a few weeks, I will make an appointment with him and start the medicine...I'm just waiting until I do the five-day voiding diary for the Bion, which I will do in about two weeks.

Blessings,
Lori

P.S. thanks for the good wishes...I'm not sure if I have any other autoimmune disease or not...have a positive ANA but it's not rheu. arth. and it's not Lupus so who knows....might have Sjogren's, I have a positive Schirmer test...

[Mrs. Burschman]

Lori,

Thanks for posting the studies. It looks quite promising! I especially like the reduction of pain part!

Amy (Mrs. B) :bunny:

[patricia1]

Hey Lori can you give me any info on where I can find stuff on the Bion. Trying to see where the trials are going on for it. Thanks if you can:smile tee

[ICLori]

Tried to post this earlier, the site froze up on me...trying again. This is an old message, these places may no longer be recruiting for the FDA trial. As you can see, there aren't many places to begin with to get this done...

And the place in DC, you can only get in the trial if you are a military dependent, so that leaves that place out for you....so the only places you could get this done are in Colorado or in California, and I'm not sure they are open anymore for this study..but you could call and ask, no harm in trying....

Blessings,
Lori

An Implantable Microstimulator for the Chronic Treatment of Refractory Urinary Urge Incontinence

This study is currently recruiting patients.

Sponsored by: Advanced Bionics
Information provided by: Advanced Bionics


Purpose


Millions in the United States suffer from embarrassing and frustrating bladder control problems such as urinary urge incontinence. Urinary urge incontinence is typically defined as strong and sudden urges to urinate followed by sudden losses (leaks) of urine. Conservative therapies such as Kegel exercises, behavioral therapy and medications work well for many patients, but some remain refractory (or have not received benefit from these conservative therapies).

This clinical trial is being conducted to investigate the safety and effectiveness of a new device designed to treat urinary urge incontinence in those patients who have tried and failed two or more conservative therapies. The device, weighing less than 0.03 ounces and measuring 1.0” x 0.1”, stimulates a nerve located in the pelvic region, called the pudendal nerve. It is hoped that stimulation of this nerve can reduce urge and unwanted urination.


Condition Treatment or Intervention Phase
Urinary Incontinence
Device: battery powered bion microstimulator
Phase III


MedlinePlus related topics: Urinary Incontinence


Study Type: Interventional
Study Design: Treatment, Randomized, Single Blind, Placebo Control, Crossover Assignment, Safety/Efficacy Study

Official Title: Battery Powered Bion Clinical Investigation: An Implantable Microstimulator for the Chronic Treatment of Refractory Urinary Urge Incontinence

Further Study Details:

Expected Total Enrollment: 110
Study start: June 2003


Eligibility

Ages Eligible for Study: 18 Years and above, Genders Eligible for Study: Both

Criteria

Participation in this study will be approximately one year of clinic follow-up visits and annual telephone follow-ups for 4 years.

Location and Contact Information


California
The Department of Urology, Stanford University Medical Center, Stanford, California, 94305-5118, United States; Recruiting
Christine Chan, MD 650-498-4240 cac411@stanford.edu
Rodney U Anderson, MD, Principal Investigator
Chris Payne, MD, Sub-Investigator


Colorado
Urogynecology Associates of Colorado, Denver, Colorado, 80220, United States; Recruiting
Mary Doyle 303-322-0500 mdoyle@viawest.net
Oscar Aguirre, MD, Principal Investigator


District of Columbia
Walter Reed Army Medical Center, Division of Pelvic Medicine and Reconstructive Surgery, Washington, District of Columbia, 20307-5001, United States; Recruiting
Kathleen Noel, RN, MS 202-782-8456 kathleen.noel@na.amedd.army.mil
Jerome Buller, MD, Principal Investigator


Kansas
The Urogynecology Center, Overland Park Regional Medical Center, Overland Park, Kansas, 66215, United States; No longer recruiting
More Information

[patricia1]

Thanks Lori, just wondering. Having more problems with my new Interstim now, I am thinking of getting the whole stupid thing removed. Thanks again.

[ICLori]

So many people have had problems with the Interstim...I hope so much the Bion or other similar devices are approved soon so that maybe there will be devices that won't have so many side effects.

I'm really sorry the Interstim isn't working out so well for you. Please don't give up hope though, there are new treatments coming out all the time for IC...I'm going to be trying that cyclosporine-A soon, everyone thinks I'm crazy, but I've tried everything else and nothing has worked, and the studies look good on this, so I figure, I'll take my chances...

Blessings,
Lori

[wolfaleena]

Ic lori:
i am so hopeful for you for this cyclosporin a.. i really think it sounds great.. according to the studies...
i wonder why it has not gotten more attention..
i wish you the best.. i know you will keep us all updated on it..
will you have to go off of other drugs, if you are on any?
Good Luck

[wolfaleena]

lori
Before you had the bion in place, did you have retention as well as frequency and urgency and is the bion helping you? percentage wise how much do you think it is helping.. how long have you had it? are you pleased with the results so far. any problems with it?

[ICLori]

Hi, Wolfaleena, I'm not aware that I have to go off any drugs while I'm on Cyclosporine-A. I know I can't use any OTC pain relievers while I am on it, but I never use those these days anyways because they kill my bladder. Maybe I will learn more when I go see the doctor and get my prescription - I will also ask the pharmacist if it's okay for me to stay on the drugs I am currently on - birth control pills and high blood pressure meds. I'll let everyone know if I can't take those two with the Cyclosporine-A.

I think part of the reason CyA hasn't gotten more attention prior to this is that it's riskier than other IC drugs. Any immunosuppressive drugs are risky. But from what I've been reading, in studies and also in people who use these drugs for other autoimmune conditions like lupus, RA, Crohn's, etc. the main risks are temporary kidney failure (reversible when you stop the meds) and hypertension (again reversible.) So I will be monitored weekly to watch for those things...probably for the first few months until they are sure I will be okay. And not everyone gets those side effects, of course. In the studies done for IC, the only side effects noted were two patients who developed hypertension (high blood pressure) and they went back to normal once the dose was reduced (but they kept the relief of symptoms even at the lower dose.)

I'm very excited too about being able to try this drug, and I'm really not worried about the side effects.

About the Bion---I didn't have any retention at all, either before the bion or now. I've never had retention.

I would say it decreased my number of voids per day by about half - so it really did work well for the urgency/frequency part. Not so great for the pain. I think it did help with the pain somewhat - maybe 10 or 25%? Hard to tell. But it doesn't help me nearly enough.

It's better than nothing, of course, but I was hoping for something that would leave me 100% normal, no bladder pain at all, and it didn't do that for me.

I've had it a little over a year now. The battery lasts about five years.

It's still in FDA trial - is not available to the general public, so this isn't a device you can go and ask for at your doctor, yet. Maybe in a few years, if it is approved by the FDA...

Blessings,
Lori

[ICLori]

Just wanted to update the update. My Bion has been turned off for 45 days now as part of the trial. I did a voiding diary, and found that my voids increased by only one void per day on average - not a significant difference.

I'm not sure why there was not a significant difference - maybe I'm just in a semi-remission or something - but for now, I am not so certain the Bion helped me...I don't know what to think.

Blessings,
Lori

[liz25]

Lori,

I am so happy to hear that you are doing so well!:woohoo: I have my year visit with my bion on June 15th. This is my 2nd one and I think they may have finally got all the kinks out. Mine hasn't helped much with my pain, but I do notice a big difference in my urgency/frequency. I have to sart a voiding diary tomarrow, but I really think my bladder is holding alot more. The only problem I have just started having is retention and I am straining to go sometimes. It is like the muscles won't work to allow me to get a stream going or to empty completely, so I am a bit worried about that. I still have to take pain meds and ended up in the hospital in March because my pain was so bad, but I still have hope that maybe when I use it at a higher setting it will help more with my pain. Keep me posted!

[ICLori]

Hi, Liz, since the Bion really didn't help me at all, I think I will just leave it turned off forever - no sense in wasting time charging the thing since it's not helping me anyway.

My next hope is that the Cyclosporine-A I was just prescribed will work.

I'm sorry to hear you aren't doing so well pain-wise - I hope things get better for you.

Blessings,
Lori

[WIMESHE]

My mother has been diagnosed with IC and I've been reading the postings about neurostimulators. Her doctor mentioned Medtronic, but not Bion. Is Bion available nationwide? I live in a rural area, maybe that's the problem.