Uros office just called....want to do Interstim

[justdeb1]

Okay....just got a call from uro's office..new dr. just joined practice 2 weeks ago..want me to come in to discuss Interstim. HA! Okay...before anyone slams me...*laughing*....I already know all about the stim thing, so...here we go..my opinion is about to appear *waves her magic wand* POOF*:

NO WAY!! Told the nurse, first off, not a candidate for it..bladder capacity is 250cc or less under anesthesia...most they can get me to on last hydro in Feb of this year was 600cc. Interstim candiates, from what I've heard from Medtronics, must have a capacity of at LEAST 700cc or more without anesthsia and its not for pain, just frequency and urgency only. So.....she wants to pull my chart and let the new doc look it over. Thats fine I said, but....I'm not a candidate, pain is my major issue. I do have frequency and urgency all the time, but I can live with that right now, have been since my dx. So we'll see how things go. They're supposed to call me back.

Teri: what say you to this? Am i justified by denying??

Everyone else who's had it done....either recently *staged and permanent*...join in the fun here....your opinions matter and are welcome.

hugs
deb

[Teri]

You KNOW my mouth is going to be going....my max capacity with anasthsia was betweeen 600 and 750, depending on the time (I had MANY) that I had it done. So, I think you should talk to your dr.

As much as I am NOT AT ALL FOR the staged trial's, I'm going to go thru with it. There have been other girls who have been helped with pain. I'm thinking that if I have the staged, I might have some luck and be one of those. I have to have surgery again one way or the other. I'm wishing on my lucky star for this one

I will tell you, and I will tell everyone....if you are not at peace with it, or can't come to peace with it, I honestly don't recommend it. You are so sick deb that I think that I would at least talk to the new uro and see what he thinks....I know that once I got the urgency and frequency under control, the pain was so much easier to deal with.

xoxoxoxox~

[Carolyn B]

Hi Deb, I have a bladder capacity of 150cc.n 350 to 400 under anesthesia and I had the interstim done in April, 2000. Now I'm holding up to 500 ccs some days without much problem. Good luck with your decision. Carolyn B
P.S. I have know pain.

[marg54]

Dear Deb,
I underwent the trial phase on May 29th and
then the permanent Interstim placement on
June 14th. I was never aware that you require
a bladder capacity of 700cc or greater, while
undergoing hydrodistention. I have severe
spasms, urgency, frequency, and yes I do
have some pretty severe pain. My urologist
has been doing the Interstim since 97 and
never said anything about bladder capacity to
me. I am very thankful that he suggested this
surgery to me. I have had good relief from
all of my symptoms and have gone from voiding
30-50cc, to 300-500cc at a time. I no longer
have to get up during the night,either. I was
also told that my bladder could only hold about 250cc. Getting the Interstim might be
worth it for you. My pain is not 100% in
control, but 60-70% relief sure is better
than no relief at all! I still have flares
but they are no where near as bad or as long
lasting as before I had the Interstim put in.
If you decide to go for it, make sure your
urologist has experience putting the device
in and make sure he or she can answer all of
your questions and address all of your
concerns. You can also go to the Medtronic
web site and research the Interstim for
further info. Good luck! I hope you will be
able to enjoy some kind of relief from your
symptoms. I will keep you in my prayers.
Margaret B.

[justdeb1]

Okay all,

first off hugs to everyone for replies. I'm going to wait to hear back from the new doc before I decide anything. My biggest fear is I've already had SOOO many surgeries in the pelvic region, and its made everything worse. And with my back pain so severe, I'm wondering if I really want to be laid up for 6-8 weeks following the actual stim surgery, not just the trial. I spoke with Medtronics before about Interstim and they told me the same thing my uro did...I wasnt a candidate based on my bladder capacity.....but we'll see.

Appreciate all the input. Hey...and I do want to hear "good, bad and ugly" on this...thats why I post, to hear it all. Thats the kind of person I am. I dont want this to turn into a "debate" on how the Stim works, if you know what I mean. But feel free to post whatever you know or have gone through. This will help me in my decision in the end, to hear everyone's experiences with Interstim. Please...even if someone posts something thats "not so good" please please do not "debate" it okay? I'm asking for ME and me alone.

Thanks everyone!

hugs
deb

[Ruth N]

As you know from my previous posts I really believe the traditional test stimulation procedure is a good way to find out what interstim might do for you without having any surgery. That said, whereas some docs are experimenting with interstim for IC pain it has not been proven or approved for that. A few folks get lucky, others do not. My guess is that if their pain is mostly from pelvic floor problems it is more likely to help with pain than if the pain is really coming from your bladder lining.

As to bladder capacity mine was 500-600 with hydrodistention and I was peeing 25-75 pre-interstim with an occassional 100 thrown in. Now unless I am flaring 100 is the minimum I tend to hold during the day and overnight I hold considerably more.

Finally, it is interesting in reading posts over the years ( and please everyone I am not about to be making a judgemental statement) how different everyone's successful results are-or how success s defined. For example there are some gals wo can go 6 hours or hold 350 cc or more awake after interstim, I have never been able to do that.

When Teri had hers done and was able to go really long without peeing, only peeing 6 -7 times a day I did wonder whether perhaps I should be trying to get better and better results but I realized that for me cutting my frequency in half and sleeping through the night or at most up once towards morning has been enough to satisfy me and give me my life back. (Even though many days I do go every 2 hours during the day).My doctor also felt (and I agreed) that the electrodes were placed in the right place, were stimulating the right place but that this was as good as I was going to get.The last thing we wanted to do was "mess with success".

I guess what I am also trying to say is that you need to define for yourself what you would consider success for you. I guess I never expected to be normal and I am just happy to be able to work again, sit through a movie and especially to sleep.

Take all the time you need to decide what you want to do and only go forward with this if you are completely comfortable doing so (but of course a little anxiety and nervousness is normal.

[justdeb1]

Ruth,

thanks so much for taking the time to respond to me. As i said, I wanna hear good, bad, and ugly! I, like you, am not expecting miricles in anything related to my IC, as I've come to accept the pain since my dx over 4 years ago. Do my meds help? yes they do. Do they take my pain away to where I can function like I did before becoming ill? No, they dont. I'll never live my "previous" life again, but I've come to accept that, at times it really bites the big one, but eh - what can we do right? I appreciate your candor in your post. I will not go into this lightly, if at all, so all information is helpful to me. On average, I pee about 3 times an hour on a good day...on a bad day..sky's the limit, can be every 10 minutes. Of course, I also cannot drink like I"m supposed to because then I'm always peeing, so its half a dozen each way I go. I TRY to drink as much as I can, but theres a trade off on that, as we all know. But I drink enough to keep my hydrated.

Keep the info coming...I'm taking it all in and I appreciate everyone replying!

hugs to all
deb

[Kara23]

The Insterstim has nothing to do with capacity. My doctor had never even seen my bladder before he put the Insterstim in.
I can go up to 6.5 hours with out pain now. For me, it did help with some of the daily pain. I still have pain at night, but I knew that the Insterstim was not supposed to help with pain.

It's all about frequency and urgency. I said NO WAY at first but then I changed my mind. It's a hard descicion to make but I wouldn't deny it unitl you have all of the facts straight and talk it over fully with this doctor. It was the best decision I've ever made. I hope you find your answer and I hope your comfortable with it.

[Kathi]

Mestronics is supposed to come out with an interstim for pain within the year. Talk to your doc & see if he knows about it & whether it will help both pain & frequency. I sure hope so for so many people. Smiles,Kathi

[Amanda]

I have had an InterStim implant for a little over three months and my interstitial cystitis is much improved. My worst symptom was severe bladder pain (especially at night)--- I always felt like my bladder was overflowing even though it was empty. In had nights when I would go to bed at 10:00 pm and not get to sleep intil 7 or 8:00 am the next morning--- I have not had one of these nights in three months. I do still have some pain, though it is greatly reduced.

It is something that may work, and may not---though in my opinion it is worth a try.

Feel free to e-mail me if you have any questions.

Amanda
([email protected])

[Carlye Kirby]

Deb,
I agree with many of the opinions already stated. I was very scared to try interstim and fought it for months. I guess what changed my mind was that enverything else failed, what did I have to LOSE? My doctor said that the trial should not last more than 14 days because it compromises the wires. Had I known that my comfortable level would be greater with the permanent implant I would have felt more at ease. I as well went from dribbling 20 to 30 cc's to urinating 300-400cc's!!! For me the greates the frequency will get is 2-3 hours, but that beats every 20 minutes or straining every hour with no output. I am still very fresh and very sore, but functional. I have some urethral burning today so I am still taking pain meds, but the pain is NO where near what is was before. Interstim has reduced my pain at least 50%, maybe more when I heal from surgery. All in all I am glad I fought the fear and went ahead with it. My mother was dead against it and said I would be paralized, well I am not. What pushed me to do this was the intense pain although they say that is not what it is for, and it's helped. For whatever it's worth w/o debating interstim itself, what do you have to lose Deb? It will be alot faster than six weeks, and then you will know one way or the other. Good luck to you and whatever you decide. God bless you for having to go through this.