Interstim Trial Surgery Scheduled - Scared But Wish Me Luck And Now's The Time To...

[ibtracy]

:) Hi everyone. I have both the trial and actual implant surgery scheduled. I go in December 13th for the trial and December 27th for the actual implant surgery if I have great success from the trial implant.

Now is the time to tell me any horror stories or simple tips that might help me know what to expect or how to take care of things afterwards. I will end up having the trial during and through Christmas and then the actual implant right after Christmas.

Please I'm scared but optimistic, I want to hear both good and bad so let me hear from you, please!

Thanks
Tracy

[rjyoon]

Sort of hard to tell where to start. The person who drove me to the hospital had me adjust the car seat to the most comfortable position, so when I got back in afterwards, it would minimize pain. I thought she was pretty smart to think of that. I bought very loose clothes that didn't touch the incision areas so I could dress comfortably. If you live somewhere where it's cold right now & the furnace is on so the humidity is low, you might consider something to help with static electricity. I had problems with static electricity turning off my trial box, so sprayed my clothes with a static guard spray so that my trial would be valid. I arranged things I would need while in bed recuperating on a TV tray next to the bed (e.g., water, medicine). I thought I'd have trouble lying down comfortably, and I was wrong. I had more trouble getting in & out of a chair comfortably. It still wasn't bad, but just wasn't what I was expecting. I didn't want to reach for things on the floor, so picked up a lot of things with my toes. I made up some meals ahead of time & froze them so I could just heat them up. I actually had no problem cooking afterwards, but it still was nice. I spent a lot of time sleeping, so wasn't awake & doing things around the house like I thought I might. These are just some random thoughts.

[ibtracy]

rjyoon;
I just wanted to thank you for the advice. Was this all that you did for your trial or for the actual surgery? How painful is the implant surgery? I talked to the medtronic rep last week for over an hour drilling him with every ? I could think of, he was so nice and patient with me. I'm nervous about the actual surgery though. Did you stay overnight? I've heard so many have and my uro is just making it same day surgery???? The nurse did say if I wasn't up to driving the 100+ miles home then he might let me stay over if I wasn't feeling too well. Please be honest and tell me how bad the pain really is. I need to know. I'm the type of person that deals better with things if I'm mentally prepared so please, you or anyone else that may post BE HONEST it won't scare me - I just need to know, ok?

Thanks to you and for anyone else that may reply to my thread!
Tracy K.

[ICNJess]

My 'round trip was 140 miles, and I came home that day...it's okay, because you just doze in and out of consciousness from the sedation, the trip will go by fast, if you decide to go home after. The things I did to make myself comfortable were: if you don't have loose clothing, get some! Get used to sleeping on your stomach; have pain meds nearby...gosh the whole thing is such a blur to me now.

I guess the best advice I can give, is try to make yourself as comfortable as possible. I am sure you will do just fine!

[Dixiefireball]

Tracy,
i'm very concern for you right now. PLEASE NOTE THIS ISN'T FOR PAIN.
I don't know much about it but do know you haven't thought about this long enough and done the reseach these other girls done before having this put in.
this is something you need to really reseach before putting into your body.
i'm not against it by no means i just want you to know what your getting into fully and no all the outs and ins on the subject before jumping into.
just because your inc. is paid up for the year isn't a good enough reason to jump into this please talk to jill, donna about this.
listen to all these ladies too.
but i bet you each and everyone of these ladies will tell you they did there reseach.
I'm really scared that you are jumping into the water and dont know how deep it is.
Your friend
Rhonda

[Jean12]

I have no experience with Interstim, but I want to wish you luck.

Jean

[rjyoon]

It actually didn't hurt that much. While I had some Vicodin for pain, I took very little of it. I mostly just took acetominaphen. I went home the same day from all three surgeries. I had to have a revision between the trial & the permanent implant. I probably did other things for my surgeries, but it's hard to remember without something to prompt me. While I've had some pain afterwards (like Sat., when I bumped my fanny while getting into the car), I iced it, took some acetominaphen & limped for a little while. Compared to other pain I've been in, this is not bad. I know it's different for everyone.

I was fortunate & had friends with me for the first day/night after each surgery, so that helped with not overdoing it too soon. When I had the permanent implant, I had to send someone out for the gauze that I needed for bandages. I reacted to the sticky monitor things they put on you for surgery, and had to have help getting all the goop off of me & putting on medicated cream to stop the incredible irritation. Most people don't have that problem, it's just that I'm allergic to adhesive.

I was off work for a month, and went back to work a week after my last surgery. The idea that I couldn't predict when I'd be able to come back to work was difficult to manage at work, so it was easier to just be gone. I actually could've worked a little, but probably not full time, as I was sleeping a lot.

I managed to fall in love, get engaged, plan a wedding & get a wedding dress while off from work for the surgeries, so you can tell it wasn't all-consuming for me. A bit tricky to find a dress when my butt was still bandaged, though.

[ibtracy]

:) Hi there. I know some of you don't think I've done my homework on this but I have. I feel comfortable with my decision to try the Interstim. I've talked to all my doctors, the Medtronic Representative and drilled him for an hour, my husband and my family and they're all supporting me in my decision. It's just 2 weeks out of my life to "try" it and if it doesnt work then out it comes and I know that I've tried almost everything out there and this disease is something I'll just eventually learn to cope with. I want peace of mind and I feel trying this will help me figure out if it's worth having a permanent implant placed in me. I know there's risks and I know it's not for PAIN THERAPY. But what the medtronic rep told me is the past 2 surgeries he's been there for, these 2 particular IC patients have had some reduction in the amount of pain they have with their IC - so there is a chance that it may help slightly with pain. I would like the support of my friends here on the ICN as well as my family and I thank anyone :kissing: that was willing to send me a PM or take the time to reply to my post. You're all so special to me on the boards and I love being a part of the ICN family.

Keep the notes coming, I want to hear about the bad experiences too - it won't scare me off but if things didn't work for you, then let me hear that as well. If it's the greatest thing you've ever done, I'd also like to hear those stories too.

I'm very nervous, only because I don't know what to expect but I've received a DVD from Medtronic and lots of brochures with patient stories and feel a little less apprehensive about this procedure but still want to hear more from all of you....this helps me so keep replying. :help:

Thanks
Tracy

[work it]

Hey Tracy...I can't help with the surgery part because I have no clue what it is, but I do want to say that I wish you the best of luck and I truely hope everything works out for the best. Keep me posted and please if you need anything I am not that far away. Give me a call or email me or I am on Yahoo and MSN...I am fairly easy to get a hold of. :)

[ICLori]

Keeping my fingers crossed for you - I know it's a scary decision to make - I will probably end up trying Interstim too at one point or another. I hope it works well for you and doesn't stop working after a week or a month or anything.

Blessings, Lori

[ICNDonna]

If you're looking for the "negatives" you can go to the Nerve Stimulation: Surgical or device failures, then scroll down and change "from the last month" to "from the beginning" --- click on "show threads." You'll find many of the potential problems there.

I know there are some who post regularly who have this device --- some have found it highly successful, others have had some real problems. I think you are wise to be looking at both sides. It does sound like you have pretty well made your decision. I hope it works out well for you.

Please be sure to keep us informed.

Sending encouraging hugs,
Donna

[Peggy Anne]

Hi Tracy: I just got my interstim put in in October. The trial was the worst because of the inconvenience of having a wire sticking out of my back, a "supersized" pager like device hanging on my pants, and sticky tape residue all over my butt cheek and lower back :) The pain was minimal, they don't go deep enough for it to be very painful - you get used to it and learn how to sit, lay down, walk, etc. Just watch out for doorknobs, etc that can snag the wire. The worst pain I felt was laying on my side in bed, and I had to do that due to sinus issues. And it wasn't bad pain, just irritating. Actually now its bothering me more thank the incisions, the area is constantly sore and just plain gives me the willies. I'm told that could be due to the scar tissue still forming, and the cold weather. It only hurts when I push on it, or hit it on something. I don't have much of a butt so it sticks out enough that its just "there". My family swears they can't see it through my clothes, so I will have to believe them. I got the interstim for freq/urgency and so far the trail was more sucessful than the final one. I've only had one reprogram and it hasn't worked. They changed me to cycling - so every 10 secs or so my lower back and butt feel like they are vibrating. I think I'm going to call soon and get reprogrammed again as its not working. But as people keep saying, it takes time to get it right, and I'm willing to keep trying. I mean the thing is in there, It would be a waste to not keep trying. I just don't want to be a pesky patient and bug the heck out of the Medtronics rep so that he starts to avoid me. I kind of wish it was my Doctor reprogramming it, as I am much more comfortable with her. But I wanted to tell you good luck, and don't worry - I spent so much time worrying and it was so much better than I had imagined. Talking to "Brat" really helped, she gave me a very detailed description of what to expect. Good luck!! Pegg

[rjyoon]

I wore the trial unit on a belt, on my body (not on my clothes). This way, I could keep the wires underneath my clothes, and it helped me avoid catching the wires on things. Also, that way, when I had to move or change clothes (e.g., going to the bathroom), I wasn't dealing with moving the box around. Did it look weird to have a box under my jumper? Yes. Did I care? No, better safe than sorry for me.

[ibtracy]

:) I appreciate any and all replies to this thread. I'm still considering whether or not to have it done especially after reading that post about the new medtronic device designed for pain - maybe I should wait til that comes out on the market???? I've got til 12/13 to decide! :hmm: It's so difficult to know what to do but I guess the 2 week trial will give me the answers I'm looking for ya know?

Tracy

[rjyoon]

To be blunt, if you cancel the surgery, you may have great difficulty getting it later. I did cancel last year, and my doctor held it against me, although he didn't say much at the time. When I scheduled it for this year, I was interrogated for a long time as they didn't want to "waste" a surgery slot on someone who would cancel.

While I waited from '87 to '04 to have the surgery (obviously, I'm talking about devices pre-Interstim), I didn't postpone it for the device as much as how long I thought I could make it without it. When I thought I'd have to quit work if I didn't do it, then I went ahead.

[ICNJess]

Hi Tracy,

InterStim did help with painful bladder spasms for me. As for that burning god awful feeling I have often, it did nothing for. But, I void only 10 times a day now, maybe only once or twice a night now.

I would say that if you aren't totally sure that you want this device, you should really give it some thought. Be totally 100% sure that you want to do this. I am not lecturing, sorry if it sounds like it LOL, but it's just such a huge decision, and one not to take lightly.

I am a big fan of the implant, as it has really changed things for me, but I wouldn't recommend it if you are looking for pain relief. I read above that you understand the risks and understand it's not for pain, but this sentence in particular jumps out at me...


"I'm still considering whether or not to have it done especially after reading that post about the new medtronic device designed for pain - maybe I should wait til that comes out on the market????"

Well whatever you decide, we'll all be behind you 1,000,000%!!! :) I know, this is one of the most difficult decisions to make. I had my trial on September 11, 2003 and had the implant on October 1, 2003. I was pretty sore afterwards...like an achey feeling around the implant where they had cut me open, but it dissipated after a few days.

As for the trial, LOL, it was interesting, you become very cautious of your wires and your box. Before the trial, I researched like a mad woman, talking to patients who had failures, those who had positives, talking to the uro, the rep, just about anyone I could get my hands on who knew what they were talking about.

Good luck, I know this is a hard one. :grouphug:

Jess

[ICLori]

I wish you the best of luck. I hope that the device works great for you and gives you back a good life.

Blessings, Lori

[BLOORE74]

I have an interstim & it helps soooooooomuch for frequency & urgency. So far mine hasn't helped my pain. The sugery goes by so fast. The sedation they give u makes the surgery seem like it lasts only a few minutes. They will load u up w/pain meds be4 u go home. Make sure u get your pain meds right away. I spent most of the time laying on my side. When they turn on your unit for the frst time it is the strangest feeling in the world. It feels like a hearbeat. U get used 2 it quickly, now I sometimes 4get sbout it. Be careful when u go shopping, though. The magnetic fields they have at the cash registers,keep your distance. Twice I had my machine turned off at best buy by the magnetic fields. U should be fine. It will be a breeze. :kiss:

[SusanB]

Hi Tracey,
I had mine done in the summer, and like Jess said it is a big blur right now. I wish you all the luck in the world. I did mine for frequency and urgency, which I see alot of difference. I was peeing up to the high 30's and I am down to less than half that. It's the best thing I ever did for myself. I still have the flares and pain. But not as bad.
Only you and your family can decide about this surgery along with Medtronics and the dr. Jess, and Brat helped me soooo much. This si the 1st time I have written on the board about it. I also wore the trial box on a belt and put the wires in my panties.
Please research everything you can on this . This si so much on the computer.
Not taking a shower and washing your hair is the pits, but you will survive. I did.
Hugs and Good luck
Susan B

[SaraJ]

Does your doc only deal with medtronic? ANS has a system called the Genesis that works on both the pain & freq/urge. I have multiple pain issues and most of them are neuropathic. All pelvic. I had a perepherial neurostimulator (PNS) put in. It connects to sacral nerves 2,3 & 4. It has been a big help. Trial hurt a lot worse than the actual surgery. It was uncomfortable from the wires all over the place. I hung over the edge of the sofa with two big pillows under my stomach. My trial was 50% successful. Then I ended up getting a laparotomy instead of my neurostimulator. I was transfered from one hospital to another. I had to have massive amounts of adhesions and cysts removed from my abdomen. They rescheduled my PNS surgery for three weeks after I got out of the hosp. If you have significant bladder pain and pelvic pain, you may want to find out about a different system. I have a lot of muscle spasms in my pelvic floor, bladder spasms, and urethral spasms. The system I had put in has been extremely helpful in the pain area. Plus my IC is not really acting up alot. Even though I feel great - I have to remember that I still have IC & all my other conditions, I can still cause a flare, I need to go to the bathroom regularly and most of all follow up with my doc if I have any decrease in effectiveness or increased pain - if the machine becomes less than 50% effective. 50% to 70% is the magic number, but I am telling you the trial seems like it doesn't work that well especially with your backside being so sore. The real surgery is not so bad and the pain has diminshed alot over the last 4 weeks. They say by 8 weeks - you should be able to get back to more normal activities, than you really get to test it. Hope this has been helpful. My docs are using me as their spokesperson for the implant. Just call your doc and ask about your other options. It can't hurt. Worse case is he may send you to someone who does work with PNS systems but I would think your doc should use these systems, too. Especially if they do chronic back pain work there. It is the same one that they use for back pain. Be blessed!!!

[Shana1234]

Hi, I'm also scheduled for an Interstim trial. My trial is on 12/21 and my perm. is on 12/28.

I'm getting Interstim for retention only (I have to self-cath every time I go to the bathroom or I can't really go at all). So I'm hoping this works for me.

I'm just as nervous as you are. These boards are so helpful and I'm so thankful for everyone who has responded to me.

Please let me know how your trial goes. There are so many good stories and bad stories out there, but all we can do is try for ourselves.

My thoughts and prayers are with you.

[Shana1234]

Jess - I just realized you posted your thread about 3 years ago! Wow, I feel dumb. Anyway, if I haven't talked to you already, please let me know how your surgeries went. Like I said, I'm very nervous.

Thanks!

[SharonA]

Shana...I reposed your post so you would get more support.

[bahhumbug941]

Hi, I posted this is another forum, but since I'm getting the surgery done tomorrow, I decided to repost it here to see if I could get extra advice. Thanks ladies!!!



Hi everyone!

I'm getting the Interstim test implant tomorrow afternoon. Does anyone have advice on the kinds of materials I should get ahead of time (type of bandages I'll need, Neosporin?, antibacterial wipes, etc)? Also, what should I make sure I have handy in the bedroom and master-bath (where I'll be recovering). I've all ready put things like my toothbrush, floss, nail clippers, facewash, etc. in there, and I'm going to keep my laptop and a pad of paper and some pens and books as well. Any advice on how I should prepare for when I come home would be much appreciated! I want to do everything right and avoid infection at all costs. THANKS SO MUCH!

[barb 1]

Dear All,

I would be very interested in hearing from anyone who has experienced any complications with their implant.

My first implant in 2001 was a great success and everything worked out until I had the misfortune to be given diathermy after a wrist surgery.

he device then malfunctioned and I have had terrible problems ever since.

I was not told about diathermy until after the fact, in the olld book from Medtronic there was no warning.

Medtronic sent one of their nurses to assess the device, took the printed report away with them for their tech's to look at and they said they would get back to me.

Of course the hospital records have dissappeared and Medtronic never did get back to me.

Now I have read a lot of imformation on the internet, especially about others who have suffered from problems with this device.

I also learned that the FDA did not approve the leads until after I had my surgery.

I was never warned or told by anyone including the surgeon of any dangers involved with this device.

A year after Medtronic did their tests I was given a new battery, this was May 2007, the device was never reset after this surgery, the box with the hand control was thrown on the hospital bed and I was told to start it when I got on the plane to go home!

On May 6th this year I had a complete new device put in and it seemed to be working but not the way the original did!

It has been a horrific fight since 1996 to this day, I have had to fight every inch of the way for my medical and now have had to fight just to get the 6 week follow up after surgery!

It felt like the surgeon was trying to get rid of me.

After the diathermy there was no feeling, my first toe on the left foot twitched all day and all night, the whole foot became so swollen from , I assume, rubbing on my feet at work and then walking with it at work!

The chronic cramps in the calf were also another mystery.

Prior to the surgery in May 07 to put in the new battery I did tell the surgeon about the foot, this was ignored but the twitching did stop after the surgery.

The chronic cramps in the calves have not.

I did not know that any of this could be related to the device until I read an article from the Beaumont Hospitals in the States that this could be so.

Medtronic will not answer my questions, they give all kinds of excuses, the surgeon certainly will not say anything.

I have finally been given permission to return for my six week check up and am taking my daughter with me to this visit.

After the surgery on May 6th. 2008 when I was in recovery on the ward the doctor stated that he had left the old wires behind as it would take major surgery to revoe them and he did not want to do this.

[I], of course, did not hear any of this as I was too out of it.

The next day the surgeon came back with an assistant and they started the new device.

He later came back and told me that he wanted to see me in six weeks and again in six months.

He told me that he had clipped the old wires and that they were "curled up"!

I was still too out of it to ask questions even though I wanted to but was not worried as I would be coming back for my check up.

Yet when I telephoned his secretary to book the follow up appointment she told me that I was not supposed to get the discharge package and that I was not allowed to come back for the follow up six week check up.

I was told by the surgeon that the Ministry had told him that I could get the programing done at the local hospital that had butchered my body in 1996, that I was not allowed to go back to him.

I told him that I would never go back to a hospital that could so butcher a patient. All I went in for was a simple bladder repair, came out with a hysterectomy and found out five years later, quite by mistake that they had also taken the ovaries and tubes! (they just forgot to put in on the surgery report)!

After the surgery I could never pee on my own again, I had no bowel control and a couple of months after surgery the back wall of the vagina fell out and I then was told that I had a rectocele!

This meant I had to put my hand in the vagina, push the stools up and back into the rectum to pass them

Fortunately I had a really good surgeon who stitched me back together but he could not fix the damage.

After watching a television show on another set of horror stories I informed our Minister of Health and I was sent to TO for the implant.

From the time the twitching started in the toe to the cramps I have had terrible problems with my legs and knees and have not been able to work since last November.

My worst thought is that it could be nerve damage.

I have talked to Medtronic until I am blue in the face from the top guy down.

The surgeon will be the next challenge.

I had a very serious conversation with Health Canada and was told they had never heard of any problems, but they gave me a telephone number to contact to report my complaint.

They also said that they could help me get a copy of the report that Medtronic refused to give me.

They said that they will investigate!

It leaves me feeling traumatised thinking that something is horribly wrong.

What would the terrible results be if the leads were removed and what will happen is they are left behind!

I would not feel like this if only I could get answers from anyone.

It made me feel so much better to read that I was not alone.

I just want my device to work again.

I do not wanty to wear a leg back and have a colostomy for the rest of my life!

If there is anyone there with any imformation I would really love to hear from them

Thank you

Barb 1:angel: :) I have great faith that all will be well and great friends to support me

[SharonA]

barb 1... This is a very old thread. I have reposted your post in hopes that you will receive more support in those forums. :)

[barb 1]

Dear Sharon,

Thank you.

I did receive two replies, that was good. I thought I was going crazy until I found your site.

I don't know what I did but I see I posted the story 3 times!

Any idea as to how to take two off?

Thanks so much.

Keep up the great work and I will keep you posted on the replies from Health Canada, the FDA and Medtronic!

barb 1 (pat):angel:

[SharonA]

I have deleted 2 of the 3. I am so sorry I did not post which boards I reposted to. That's what happens when I am in too big of a hurry. :)

[ICNDonna]

I just closed this thread. It is very old.

Donna