Questions about interstim

[scarlette]

I am supposed to have the interstim test implant March 1 and if it works, the second stage full implant a week or two later. I keep obsessing about it and coming up with more and more questions. Maybe some of you who have the device can help me.

I know the computer is not small. What does your backside feel like after the surgery? Is it a hard lump? Is there a lot of scarring (4 inch line?). How deep in the fat does it go? My doctor was saying that I shouldn't lose weight after i'ts in b/c there won't be enough fat to cushion it.

If the test doesn't work and the doctor removes the lead, is this a big process? I read about the barbs on it now and am wondering if just agreeing to the trial could leave me scarred inside or other complications?

How long does it take to recover from teh actual implant surgery? How long before you can go back to work/school? When woudl I be able to start exercising again?

I am unable to have sex because of pain around the outside aroudn my urethra adn pressing up against it. I know the interstim is not for pain, but I know it causes reduced electrical activity in the pelvic floor. If it relaxes those muscles, it could help this (or does in some people at least). I wondered if anyone who was unable to have sex before because fo the pain found it easier after the surgery?

Thanks so much - Scarlette

[ICNJess]

Hi Scarlette,

I'm 21 years old and would like to share my experience with you.

I had the trial Sept. 11, 2003. Those three weeks were a little difficult in the way of bathing, wearing clothes, moving around because you have wires coming out of your back into a box. BUT, I had cut my frequency down 70% or so! So I had my implant done Oct. 1, 2003.

My sex life is so much better! I have PFD, and it has really helped with those muscles. I no longer have urge incontinence, I urinate 4-10 times a day, and my urgency is gone. No more bladder spasms unless I go into a nasty flare.

The scar on my backside is 2 inches long. and it's in line with my panties. (Not the granny panties but low cut, TMI right?? :o lmao )

At first, the scar hurt and everything after the surgery, but that's normal. Now, I don't even know it's there. But I have lost 16 pounds so it sticks out when I sit in a position. But before the weight loss I didn't even notice it.

I am going to be starting yoga, and that was recommended for exercise by my docs. Also, stationary bikes are okay too.

My doctor said I could go back to normal activity a week after the implant. If you have any more questions about the Interstim and what not, you can email me at [email protected]

Good luck,
Jess

[tigger_gal]

I returned you email if you need any more help please email me
brat

[littlebear]

Hi Scarlette, It's a good thing to have questions (and an even better thing to have these boards to ask them on--everyone is so helpful and supportive)! I've just scheduled my trial and I wanted to thank you for posting your questions because you've included some that I haven't thought about myself. Also I wanted to wish you good luck with your trial. Best wishes, little bear

[peiti]

Scarlette:

I don't know all the answers to your questions. But hope what I know or have experienced can help you.

What does your backside feel like after the surgery? Is it a hard lump? Is there a lot of scarring (4 inch line?). How deep in the fat does it go?
-- I had staged trial on 10/22 and the permenant implant was performed on 10/31/2003. Of course, I had pain at the implant and lead sites right after the surger, but it was bearable. Actually I was able to walk about 30 minutes to the supermarket the next day of my device implant. The device is under my waistline and covered by my skin. I can feel it if I put my finger right on it. It is like a lump when you touch it, but you can't see it from outsite. My scar is about 3 inches long.

If the test doesn't work and the doctor removes the lead, is this a big process? I read about the barbs on it now and am wondering if just agreeing to the trial could leave me scarred inside or other complications?
-- It depends what kind of test you have. What I had was staged trial which mean my dr opened a small spot on my butt and place the permenant lead in. If the test doesn't work out, there will be another surgery to take the lead out. I know a lady who wasn't helped during the staged trial and had it taken out. She doesn't have any other complications.

How long does it take to recover from teh actual implant surgery? How long before you can go back to work/school? When woudl I be able to start exercising again?
-- It says about 6 weeks in Medtronic pamphlet. For me, the pain from the surgery became less after the first week. I started going back to work after 10 days. I didn't have trouble standing or walking. There were some postures that bothered me. I had to sit on the bedside first and let my right side of body to go down slowly to the bed and turn around to lie on the bed. When I got up, the above movements were in reverse order. I was not able to fully use the muscle around my waist cause it really hurt. The other problem was when I was lying on the bed and tried to move my body to get a more comfortable postion to sleep. The incision site was hurt when I tried to turn around or move my butt. I guess when I lied down on the bed, the device kind of pressed on my skin (incision site) so of course I hurt a lot on the spot.
I started to work out after one month. I walked slowly but pretty long distance.

One thing that I want to mention about going back to school or work is you have to be very careful to avoid being pushed from behind. When I walked on the street with my hubby, he walked on my left side where the device was implanted to protect me from the crowd.

Sending postive thoughts and best regards.

[scarlette]

Thanks for responding. One more question. Have any of you with implants been told that you have to turn it off whenever you drive? The interestim website mentions this, but I haven't heard it from anyone withthe surgery. Are there other lifestyle changes? Does anyone have to carry their remote around with them or any other issues? Thanks - Scarlette

[peiti]

I didn't turn my InterStim off when I drove. Actually I forgot and I didn't feel anything was wrong.

I carry my remote control with me whenever going out. I don't have the magnet thing to turn on or off the stimulation. It is a little bothersome cause the remote control is a little bigger than the mouse. Regarding life change, there is one for me now. It's been unnormally cold here (not usual in a pacific island) and we don't have heater here. I used to sleep on electronical blanket and now I can't do that anymore. Last night, my hubby put the electronical blanket on his side only (I sleep next to him). In the middle night, I could feel the stimulation was stronger but I was too tired to get up. In the morning, I woke up shocked cause I couldn't feel the stimulation in my back. I used the remote control to try if it was on and off. It was on but the stimulation was so weak. I called my Medtronic rep and will go next week to check. I don't know if my stimulation was affected by the electronic blanket, but I will never sleep close to one in the future.

[carly]

I had my interstim trial in Oct. It did not work, I had it removed 3 weeks later. I was totally out for the removal, so it was no problem at all. Hopefull, your's will work and you won't need it removed. Good luck!

[tigger_gal]

Title: AUA: Sacral nerve stimulation provides long-term bladder control
URL: http://www.pslgroup.com/dg/1CF5E2.htm
Doctor's Guide
May 2, 2000


ATLANTA, GA -- May 2, 2000 -- A study presented at the American Urological Association annual meeting suggests that sacral nerve stimulation should be considered earlier as a treatment option for patients suffering from the bladder control problems of urge incontinence, significant symptoms of urgency-frequency, and non-obstructive urinary retention.

Conducted by an international team of urologists, the three-year study concluded that Medtronic InterStim(R) Therapy for Urinary Control provides long-term benefit to patients whose condition resists adequate improvement with drug therapy, pelvic floor exercises, biofeedback and surgery.

"Our study suggests that physicians should consider Medtronic InterStim Therapy for Urinary Control earlier in the treatment ladder for patients with severe bladder control problems in order to minimize the use of ineffective treatments and to deliver improved clinical outcomes for their patients," said David A. Rivas, M.D., of Thomas Jefferson University Hospital in Philadelphia.

According to Dr. Rivas, who reported the study findings, many refractory patients responded dramatically to sacral nerve stimulation therapy, resulting in a reduction in pharmacotherapeutic intervention and further surgeries unrelated to sacral nerve stimulation.

Of the 112 patients in the study, 41 suffered from urge incontinence, 42 from urgency-frequency and 29 from urinary retention. Before the start of the study, 93 percent of the patients had not experienced relief with drug therapy, 46 percent had not responded to behavioral therapy, and 58 percent had not been helped by surgery.

Urge incontinence is characterized by the sudden, strong urge to urinate, followed by the involuntary loss of urine, or leaking. Symptoms of urgency-frequency include the urgent need to urinate -- in severe cases, as many as 40 times per day. Urinary retention describes an inability to empty the bladder completely or at all.

After treatment with InterStim Therapy, all three patient groups in the study showed significant improvement in their symptoms.

-- Urge incontinence: The 41 patients with urge incontinence reduced the average number of leaking episodes per day by more than half, from 11.6 to 5.0 events; 24 (59 percent) of the urge-incontinent patients reduced leaking by 50 percent, and 46 percent were completely dry. In addition, heavy leaking episodes decreased from an average of 3.6 to 1.3 events per day, with 65 percent eliminating heavy leaking events altogether.

-- Urgency-frequency: The 29 patients with urgency-frequency reduced the number of voids, or urinating episodes, by 40 percent, from 17.7 to 10.6 voids per day. Voided volumes per void increased by nearly 70 percent, from 132.5 ml to 225 ml. Sixteen (56 percent) of the urgency-frequency patients showed a 50 percent reduction in the average number of voids per day, including 32 percent who returned to a normal range of 4-7 voids per day. In addition, 20 patients in this group (69 percent) showed improvement in the degree of urgency prior to voiding.

-- Urinary Retention: The 42 retention patients experienced a nearly 75 percent reduction in the volume of urine remaining in their bladder after voiding, from 343 ml to 91 ml. In addition, 58 percent of the group no longer required catheterization to empty the bladder.

The Agency for Healthcare Research and Quality (formerly the Agency for Health Care Policy and Research) estimates that there are 13 million incontinent adults in the United States. Urge incontinence, urgency-frequency and urinary retention are among the most common and serious voiding dysfunctions. Five million Americans suffer from urge incontinence, more than 1.2 million from urgency-frequency and more than 1.7 million from urinary retention.

InterStim Therapy is a treatment option for consideration by people whose bladder control problems have not responded well to drug, diet, exercise or biofeedback therapies and who seek a less invasive treatment option than irreversible surgeries. It uses neurostimulation to send mild electrical pulses to the sacral nerves in the lower back that control bladder function. A stopwatch-sized neurostimulator, placed under the skin of the abdomen, generates mild pulses that are carried via a thin implanted lead, or wire, to the sacral nerves.

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I am still researching... and taking vicodine..
ggggrrrrr
brat

[Teri]

Cindy~the only question I have about that is what happens to the patients who did not get helped and then were dropped by their uro's? That's what the first one did to me. So, in that study, where do I fall
I've always been so confused by that and probably always will banghead banghead

[tigger_gal]

(((((Teri)))))
give me a call and we will go beat him up really good.. lmao
Thats really mean of your doctor to do that Teri and I am upset that they do treat us that way. I am glad you have "dr. god" now and he can help you....
I wish I had the answers to your question.
There are some that just don't respond to the interstim and I send hugs to them...
I also wish that the failed devices were sent to the fda to better them for future patients. I also would like to see that ALL doctors that perform the interstim take a course on how to do a trial and implant correctly... we both know that peters can do it blind folded and asleep too bad we all didn't have a dr like him..
sending you hugs and wishing you fell better
Cindy

[ICNJess]

I agree, the doctors that do these surgeries need to be held accountable for failures. My doctor is great, and anytime I need him he's there, as well as my medtronics rep. I always get a phone call back the same day that I called. I think the right doctor and rep make all the difference in the world. I am so lucky in that aspect.

I don't blame Medtronics or Interstim Therapy for the failures--I blame the doctors who are not competent enough to do these surgeries and follow through with their patients. cussing The device itself is a miracle--and hooking it up and making it work is up to the doctor.

It's like anything else, if you move into a house and the plumbing doesn't work, are you going to blame the parts or the plumber?

[Mimi-in-Chicagoland]

My interstim failure story is on the other post. When I went in for my revision, I asked my new competent doctor to move my generator since he was having to take it out to inspect it. The first doctor had put it up where my jeans pantline was and it got rubbed constantly...and it was right on the surface...one edge was showing. Also, I needed to lose 50lbs...gained weight when I first got IC. So, he put my implant in a deep pocket in my butt cheek an inch or two lower more towards the center. Its doesn't rub as much on the car seat or chairs. You can sort of tell your doctor where you want it---some men don't know that the outer hip isn't a good place. Its not comfortable to roll over on it. It doesn't hurt, it just feels weird. I have two cuts on the same place and it still healed well.