Sensing failure.

[tacy99]

Talking with my Dr. on the phone today I picked up a lot of cues she's preparing me for failure of the stim. I'm still voiding 30+ times per day. I don't have toe curl with the new lead on the other side, but my piriformis muscle is wracked with spasms when I turn it up, and my tailbone feels like someone is squezing it.

I was sort of annoyed with some of the Dr. comments today, for instance she asked if I had tried the tricyclics. Does she seriously think I would be as far as InterStim and NOT have tried them? The times voiding is not good for my PFD and she didn't get that at all. When I told her holding it means when I finally do get to go, I can't void without straining. She told me to be more patient, take the newspaper in with me. She thinks I am getting too anxious about voiding. JFC who wouldn't?

Sorry for the rant, I'm getting discouraged and irritated.

[tigger_gal]

so sorry that the stim is not working for you, diffently do not have the implant put in if you are not having any success.
sending you big hugs.

[tacy99]

I wouldn't consider having the permanent put in with these kinds of results. I think with trying the trial stim on both sides and still not having any reduction in frequency, it just isn't going to work for me. Who knew I have a flat sacrum which makes my sacral nerves all bunched together. *sigh* God! everything else on me is wide :-)

[DayTripper]

I'm sorry to hear you are having these results
I am not sure how long you have had your trial in.
I was allowed three full weeks for trial, but i knew earlier on it would be coming out, but i was thankful doc gave me the time, just in case it would prove the last setting we tried was the one. I remember it was a very trying time and exausting.

I do not have i.c. but have neuro disease. The surgery for implant trial was very difficult (over 2 1/2 hours) with 22 tries to find a spot that would remotely respond.
They taught me to self cath during that time, thinking just maybe the devise would respond with complete empty bladder.
With SO much time, money, energy and emotion put into it from everyone invovled, in a sence i felt i had let us all down. You begin the journey with high hopes and just want help
It took some time to overcome that.
I look back and i still and glad i tried.
Hang in there, and try to keep hope even til the last day that there may still be a setting that could work!

[tacy99]

Both of my implants procedures were that long. The Dr. said usual is 40 min. When I asked her several days after the second implant why my butt hurt so bad, she said too that she had to try more than 20 sticks to find something that sort of worked. The surgeries were 2 weeks apart and I hadn't really healed from the first.

I have done self-cathing for more than a year before it became impossible and I got the indwelling put in. I still have the catheter in but clamped off.

The feeling like I've let so many down is huge for me. So many people in my community know as I have a music teaching business and I had to explain why I needed time off. People have been so nice with meals, flowers etc. My GP is wonderful and has done so much for me I wanted this to be the end of my trials!

Today my one daughter wanted to go shopping for some outfits for her senior pictures. My older daughter went out the door with her. I said, "Oh why are you going?" She said, "Gabrielle said she needed somebody to come along and be the mom." I immediately lost it and she said she didn't mean it like it sounded but it's true. I have not been able to be there for my kids so many times because of my problems just peeing! Today I just hate my body for betraying me.

[jen74]

Hi Tacy.
I am sorry you are feeling so rotten , and I cant blame you after all you have been through. I have not been able to do all the things I would of liked to do with my son either due to all my illnesses, and it is upsetting.
Does your doctor have any other plans if the stim does not work? I know this would be a drastic move, but has she ever mentioned bladder removal in the later future? The only reason I ask is because you say you cannot void at all on your own, and have to have a cath in at all times. I can imagine this is very painful. Did she say why you are unable to void, is it a neurogenic problem?
I have a friend who's mom had her bladder removed, but it was because she had cancer. My friend said it was a rough time getting use to things, but she said it gave her her life back and she is able to work full time now. Of course, I would not rush into any surgery ever, but I just wondered if your doc ever mentioned it.
I am sorry you are dealing with all this, as it has to be awful. Sending Big Hugs your way.
Jen

[tacy99]

I can void on my own some, but I go like every 15 min. with residual everytime. Eventually my bladder gets distended from not ever emptying and then I go into total retention and my sphincter just clamps shut and not a drop will come out. My bladder pressures are so huge when that happens it causes reflux to my kidneys. That's why I have the cath. all the time. After 20 ER visits to get a cath/ put in temporary we finally went to indwellng. It's a supra-pubic and it doesn't hurt at all. The one in my urethra for 8 months, not that hurt!

I wouldn't consider removal. thanks for the feedback though.

[AnnieMac]

Hi Tacy,

I was finally able to get on here and check to see how you were doing. I've been thinking about you every day. I'm so sorry that things are not working out as you had hoped. But at least you still have the suprapubic in and you don't have to go through that again. That is one thing I made sure of with my doctor, "Do not take out the suprapubic catheter". It is my friend. That's the only way I would try the interstim. I go in next Monday. I hope my doctor's hand is healed really well. I think I'll call him up and order take-out for him this time. LOL. Keep your chin up, Tacy. You're in my prayers.

Annie

[tacy99]

The Medtronic rep. is not being helpful at all. After just not showing for the first surgery and never talking to me that first two week trial. The second trial he was in the OR then gone before I woke up. This whole week we've spoke twice. I had the trial put in last Mon. He called me Thurs. and made a change in the settings. That setting caused so much pain I've taken the unit off. He said he'd call Sat. (but said he was moving and had to go to a wedding. What does that have to do with me?) He never called Sat., or Sun. He called today when I wasnt available, I called him back, got his voice mail and left a message early afternoon. NO call back.

I have a stim that isn't working and I've had ONE reprogram in this whole week. I'm just mad at this guy. I don't think he's doing his job and I feel like calling Medtronic and telling them I want a new rep!

My family dr. wanted to know how things were going. When I told him about the rep. he said the company needed to kick his a**. I agree!

[tigger_gal]

you really need to call and report this.