Anyone hear from Tami and LittleBear?

[ICNJess]

They were both scheduled for their trial on Monday. Anyone hear from them?

[littlebear]

Hi Jess,

Thanks so much for checking in. Yes, I had my trial on Mon. Everything has been going pretty smoothly so far. The procedure itself went very smoothly and I've had very little post-surgical pain since then (thank heavens!). In fact, thanks to all the info I gathered from the boards and from my other research, the only little surprise was that the anesthesia made me feel nauseous in recovery and during the following day (but, in the big picture, it was really nothing--the fear of throwing up right after surgery was worse than actually feeling queasy--and I hear that, like everything else, everyone responds to the anesthesia differently). So, thanks, everyone for all of your questions, for all of your answers, and for sharing your personal experiences (good, bad, and otherwise). They all are incredibly helpful to those of us who decide to proceed with the trial (and, I'm betting, to those who decide not to as well).

I'm just starting day three and am feeling pretty good about things. I've gone from voiding 28-30X a day to 9-12X (hoorah!). But, I know that this is a process and that things could change for better or worse at any time, so I'm trying to hold back a bit and to wait and see what happens while my body readjusts during the next few days . . .

I've got a question, though. During the procedure, the Dr. stimulated several nerves that just didn't respond at all (and it sounded like he thought that was odd). I'm wondering if anyone has a sense of what that might mean (I know that Brat might have had something similar, but it sounds like it was a lot more serious because my Dr. didn't have to use X-rays or anything to complete the procedure)? I'll ask my Dr. the next time I meet with him, but I'm interested in hearing if you all have had any similar symptoms and how they were related to your experiences with the interstim.

Well, thanks again to everyone for being here before (and during!) the trial. I hope that you all are doing well and that you know I am sending you all my very best wishes, little bear

PS Tami, I am so sorry to hear that your funding didn't go through. Best of luck with the appeal! We're all rooting for you!

[ICNJess]

Hi Littlebear!

I am glad to hear that things went smoothly and that you are doing well. I'll keep my fingers crossed that things keep going well for you. About the nerves, all mine responded, but I know Brat did have a similar problem. I'm sure she'll be along to respond cuz I have no idea what that could mean. I do hope you find out. And best of luck with the rest of your trial!!

Hugs and love,
Jess

[tigger_gal]

littlebear,
so glad things went well.. my nerves would not respond either(from my story in the success story post: My muscles and my nerves did not respond (even with the device turned up to the highest level) and, they had to end up putting the leads in by x-ray. My uro was upset by this and only had the hopes that I would respond to the interstim after surgery.) I am a success interstimer
wishing you lots of success and sending you hugs.
Brat

[peiti]

Littlebear,

That is also my question, too. I have doubted how the doctor chose the right nerve to be stimulated.
I was put to sleep during the surgery. They used an X-ray and another machine to see if my vagina and anus contracted instead of asking me how I felt. My rep told me they finally decided the nerve because it required the least stimulation to show the response.

I probably have ased this question before, but I really want to make sure I understand it clearly. For those who are helped by InterStim, Where do you feel the stimulation? Is it on the buttom of your spine? Do you have a pull feeling at your vagina/anus area?

Thanks so much for your response. I don't know what I would do without you. grouphug

[tigger_gal]

I feel my stimulation in the preanial area... in other words (I didn't know either at one point) the space between the vagina and the rectum.
and if I put it up too high i feel in on my butt cheek lmao
hugs
brat

[peiti]

Cindy,

Thanks for writing back so quickly. I feel like I am the pain in the *** cause I still have lots of questions.

I know some of your still have flares even with InterStim. I just wonder if the InterStim really helped me or it was just my good days (I had good and bad days before InterStim). Usually, a week before my period, I peed up to 25 times a day without InterStim. Now with InterStim, I still peed around 25 times before period. Is InterStim supposed to work on my good and bad days?

Thanks, Peiti.

[tigger_gal]

PEti, can you still turn up your interstim and be comfortable? If so try that.. when I flare and I have the interstim I can and will pee 25 times a day I just did a diary..
hugs brat

[rachelm]

Little Bear,
I'm so happy for you!!! I'm sorry I haven't responded sooner. I went back to work on Wed after being out for a month. I hope you continue to have success! Mine has really reduced my pain, frequency, and retention. Sometimes I have to sit for several min. waiting to start the stream but it always comes and sometimes it seems to help when I turn up the box. I feel the stimulation on the inside of my but just about in the crack area. I feel it down my leg some too but my dr. said that happens in trials sometimes but not usually in stages or perm. I'll check in with you tomorrow.

Rachel

[peiti]

Cindy,

yes, I always have my InterStim on. BTW, I find I have constipation as a side effect from this device. I take stool softner every other day to solve this problem.

My magnet is off. They don't give me a magnet to turn my device on or off. Only the small mouse-like stuff to turn myself on or off. toilet

[ICNJess]

Rachel,

When I felt that I hadn't completed emptying my bladder, I turned my box up and then a minute or less later the stream came out. I love InterStim!

Peiti,

Are you on any narcotic pain meds? Those cause constipation as a side effect. High doses of vicodin, percocet, morphine--all cause that. You could buy a stool softener or laxative to help things along? Also, I feel the stim in my vagina, my toes, and my butt around the implant.
The rep calls it the "bicycle seat" when he reprograms me. Maybe you could use a reprogramming? Also, I pee a lot more around my period and during my period. I think it's because we retain so much water.

Hugs and love,
Jess

LittleBear, I am so happy for you!

[littlebear]

Hi Jess, Peiti, Brat, and Rachel,

Thanks so much to you all for your support!
Things continue to go well (knock wood). My only problem is that I forget to turn the interstim up when I stop feeling the sensations, so sometimes I'm reminded by the fact that I have to void (and I think I might have avoided having to if I'd turned the machine up earlier!).

Rachel, I'm so glad that your trial is working for you and that you've gotten some relief from your pain, frequency, and retention. Also, I'm glad to hear that you were able to go back to work feeling good! How did that go for you? Marvelously, I hope.

Peiti, You are certainly not a pain! I wish I had enough experience to answer all of your questions! Also, your questions help everyone else who either is going through the procedure or is thinking about it. I feel my stimulation in the front on the left side of my vagina (and sometimes inside too). When I turn the machine on, I can feel the sensation move from my anus through the "bicycle seat" to the front.

Jess and Brat, I know that things have been rough for you both lately. I know that you will both make it through your recent stress, losses, and setbacks. We're all behind you and so grateful for your presence on the boards.

Sending you all my best wishes, little bear

[ICNJess]

((((((((LittleBear)))))))

I am just so glad that things are going well for you! It is kind of hard to get used to having that thing in you, I know when I got home I had to get used to my toes twitching and this box next to me. Eventually I ended up turning my box up to 6, then 7. That's where it was comfortable and voiding became easier and easier. What a great invention...

Hugs and love,
Jess

[peiti]

Jess:

I am not on any pain medications. It must be the stimulation that causes constipation. I take stool softner every other day to help bowel movement.

[tigger_gal]

Peti,
no you are not a pian at all ask questtions any time. I had slight constipation for about 3 months and then everything seemed to fall back into place..
I am so gald you all are doing well with your new implants/trials.. I am thrilled you have relief.
hugs
Brat