Thread: Bion Microstimulator
08-15-2006, 04:26 PM #1
I went down to NYC today to meet with the research team for a trial of the Bion Microstimulator by Advanced Bionics. The team at their urogynocology dept was great. I felt very comfortable and relaxed with them. This was my first trip to NYC so the whole train/taxi and back again was a little distressing. I come from a rural area and the train station was nothing more than a platform and there was no bathroom, so an hour drive to the train, 1/2hour wait at the platform, two more hours on the train, 1/2 hour standing in the taxi line at Grand Central before finally arriving at the hospital - a little late. Thankfully by the time I finally found my way to the office suite the first thing they asked was if I needed to use the bathroom. God Bless them. Of course I did the reverse coming home went straight to work with not stops in-between. I'm flaring more than usually but I'm upbeat.
After an extensive interview and medical/social history I passed this phase. So far nothing to exclude me from the trial. The next step is to keep a five day voiding diary. I'm waiting until I come back from vacation because I want to manage my symptoms so I don't have a miserable vacation. Once the voiding diary is reviewed I will be called if I meet the criteria - twelve voids a day. I don't think that will be a problem - I double that easily now without going off any meds. If I pass that phase then I have to undergo some urodynamic testing. Stress incontenence disqualifies you, so if they can't force you to leak you make it through that level (gotta read up on urodynamic testing as I've never had that done before). If all goes well to this point the next step is some trial stimulation to see if they get any responses. There is some predictablilty about not feeling the stimulation and the actual implant not being able to stimulate the nerve. From here if I'm still hanging in with them, the implant can be done and the study can last up to five years. The good thing about this trial is that half of the group may not have their stimulators turned on in the beginning but everyone will get a trial with the stimulator both off and on. Not like some of the other studies I've investigated where you either are in the treated group or untreated group. At least I will know that at some point in the trial my stimulaor will be turned on.
After all the disappointing news with the sacral stimulator and them not wanting to take me into the new program - this was a much needed boost.
I'd like to hear from anyone who has already had the stimulator inmplanted and what they think of the process and procedure so far.
08-15-2006, 05:13 PM #2
You'll want to speak with ICLori - she's had this done and knows all the ins and outs.Kim
Diagnosed August 2001
Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)
Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)
My IC story: http://www.ic-network.com/patientstories/kim.html It's very outdated now. I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.
“We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl
“You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy
08-16-2006, 03:34 AM #3
Hi, Jean, good for you, I hope everything goes well! There are several of us on the boards who have the Bion and are in the trial (I've been in the trial a little over a year now) and if you do a search on the boards for the word "Bion" you will see a few hundred posts about it, everything from the beginning stages as you are in now, to current results, etc.
In order to do a search, you have to go up to the blue bar at the top of the message boards - the one that on the left says "User CP" See the bar? Now go to the right hand side and there is "search." Click on "search" with your mouse and a box will drop down where you can type "Bion" in. Then you will see about 4 pages worth of threads about the Bion. Those 4 pages of threads will most likely answer any questions you might have, but if you have some questions after reading through all of that, I'll be glad to help!
Blessings, and good luck,
P.S. I hope your researchers told you that the Bion is not for pain - only for frequency/urgency - it did not help me one bit with pain, only with frequency And pain was really my worst symptom, not the frequency.
08-16-2006, 04:23 PM #4
I've been on this site for quite some time and just don't remember the Bion but maybe that is because there was no one close enough for me to travel to. Or brave enough to travel to the big city. I'll have to take a look and see what the threads have to say. It is exciting to have made it this far. Yes, the researchers were very clear about this not being for the pain, but I'll take relief of any sort. I actually have the pain pretty much under control so I think if I can get some relief from the pressure/frequency/urgency I'll be happy.
08-16-2006, 04:37 PM #5
Hi, Jean, yeah the posts about the Bion were easy to ignore, especially if you weren't interested in the Bion at that time...you wouldn't have had any reason to click on them! But there are hundreds of posts about the Bion, from the...3 or 4 of us I think...who have had the device implanted.
Just to let you know - that feeling of pressure is considered a type of pain and it's the main type of pain I have. The Bion did not help me one bit with that. To be honest, although it helped initially with the frequency, I found at the one year mark when it was turned off for 45 days, that my voiding diary was the same as it had been - in other words at the one year mark, my symptoms were the same whether it was on or off - so I decided to just keep it turned off, and that's how it is for me now.
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