Interstim manuals, or lack thereof

[rjyoon]

For those of you with Interstim, what, if any, documentation did you receive? I got a patient programmer & a quick reference card. When I read the card closely & found a reference to a manual, I asked my uro for one. I happened to be talking to Medtronic about a question & mentioned that I had not received a manual. They said they'd send one out (I wasn't sure if the uro would come through, or how long it would be before I received it). I now have a patient programmer manual from the uro & an Interstim manual from Medtronic. Makes me wonder if I have everything now.

[ICchell]

Rjyoon,
Im sorry I dont have the answer to your question...but I was wondering how you were doing and how you made out with your sleep study?
Michelle

[yvette]

I'm pretty sure I have a manual (roughly 5.5wx8.5h) and that big gonkin' magnet and an attachmnet accessory (for what I don't know) and it all came in a box with my name typed on it. I have the box buried somewhere in the basement (with that magnet FAR away from me).

Let me take a look in the next couple days....I'll let you know what I can find. (???)
:confused: :confused: :confused:

[littlebear]

Hi Ryjoon, Here's what I received in my package (a grey flip-top box): a quick guide; a Medtronic declaration of conformity; a spiral bound patient manual with the title "You and Your Interstim Patient Programmer"; an antenna; and a carrying case for the remote. I hope this helps. I also hope that you've received some helpful results from your sleep study and that all is well with you. Best wishes, little bear

[rjyoon]

Thanks for asking about my sleep study. I've heard nothing, and it's been two weeks. I was supposed to know after a week. I'll be bugging the doctor today. I've been trying a cough medicine for my allergies (to thin mucus, not an antihistimine, I can't take them) since I learned from the sleep study that I'm having "respitory events" during the night where I'm struggling to breathe & partly waking up. I've been sleeping better, but I don't know if it's because I'm turning up the Interstim or if it's because of the cough medicine. I'm going to be unhappy if my sleep problem is due to my allergies & I did the Interstim unnecessarily. I've been hestiating to change what I'm doing at night (so that I can figure out which change is making me sleep better) because I'm enjoying the improved sleep so much.

[peiti]

Hi,

I have the patient manual (in Chinese) and also a letter written by Medtronic. I was asked by my rep to bring this letter with me to inform anyone who will treat me that I CANNOT have any software diathermy, microwave diathermy or therapeutic ultrasound diathermy.

[peiti]

Hi,

I forgot to mention that I also have the patient programmer stuff that I can tune the stimulation up and down or turn it on and off. I don't know what you call it. It looks like a computer mouse. I don't use a magnet to turn it on or off. Cause it is turned off by the Medtronic rep.

I also have a patient card that I put in my wallet. The card has Interstim information, my gyno-uro's name, the hospital he works at and his cell phone# which I insisted to be listed on my card. ;)

[littlebear]

Hi Ryjoon, Gee, those sleep study results take a long time! Good thing you were able to schedule the test itself as soon as you were. I'm so glad to hear that you are sleeping better, for whatever reason, though. Enjoy! Sending you all my best wishes, little bear

[Teri]

Geez~I feel cheated! I got one little info booklet, my control programmer and that's IT:eek: :eek: I sure did'nt get a magnet and I got to have the surgery 3 times!!!!

I'm really feeling hurt and rejected now:p :p

[rachelm]

Hi everyone. I've not been on here much lately because I was doing better with the trial and had gone back to work. We were hoping that the trial would be all I needed to jump start my bladder and that would be the end of it. Unfortunately despite my dr. efforts to avoid the permanent implant we have exhasted all other options. In the week I've had the temp. leads out I have spasms constantly causing cramping and severe pain as well as severe retention. At least I'm not back to cathing 100% of the time but I'm having to do it 75% just to empty it.

When I set up the procedure I asked for all the manuals etc. I was given 3 small books "Guide to the stage interstim, Guide to the interstim" but I noticed a reference in the little book about a patient programming manual. My nurse told me to contact my rep or medtronic to request the manual. I'm scheduled for stage 1 on 4/9 and stage 2 on 4/22. I hope I can manage on my morphine and self-cathing until then. Thanks for the heads up about the manual.

How long did the recovery take you from stage 1 and stage 2. My dr. said it is different for everybody but that most people are able to go back to work after 4 days or so. I'm trying to finish a grad. class, make up missed observation, finish plans for my June wedding, look for a new job and deal with my symptoms and recovery after the implant. Any advice? The first trial (the old kind) was a breeze and got me back to work again quickly. I know the stage trial and implant surgeries require more recovery because of the incisions. Please give me an idea of what to expect from a patients perspective.

Thanks,
Rachel

[littlebear]

Hi Rachel,

So sorry that your results weren't longlasting (but I'm still thrilled that you had some in the first place!). For me, it took about 4-5 days to bounce back from the trial (although as far as difficult, focused reading and writing went, I started doing some here and there the third day after the trial, but I wasn't all that confident about it until 10 days or so had passed). I didn't have any pain that an ice-pack didn't take care of on days 1-2 (but I tend to have a pretty high threshold for pain as a rule). The only minor surpises for me were that the anesthesia and antibiotics made me a naseous.

The implant, for me, was easier still (I had a little more pain on the day of the procedure and on the day afterward and took darvocet on those two days to deal with it). I was up and around the next day, but made sure to really pace myself overall based on my experience with the trial. I can't give you a good sense of how long it took me to bounce back completely because I caught the flu about 4-5 days after the procedure (and am still under the weather!). Also, you might want to make some mental space for the reprogramming process in case you need it (I'll probably be posting another message with about this either today or tommorow) .

Well, it sure sounds like you have a whole bunch of milestones ahead of you in the next few months! I'm so glad that you had some time feeling better (even if it was shorter than you would have liked) to help you rest up for it all. Best of luck with everything. Let us know how you're doing when you get a chance. Best wishes, little bear

[rachelm]

Thanks littlebear,
I'm hoping that I have great results as soon as I get another box turned on with the stage trial. I think knowing how much it helped me last time is keeping me positive while I deal with the retention and pain until the next trial. I'm reading up on everything to expect like revissions etc. and just praying that it all goes smoothly. Just as long as I bounce back within a few weeks I think I'll be able to manage all the other events in my life. I'm glad to hear that your trial and implant recovery was manageable. Wow all you needed was Darvocet! I can't take that any more because it doesn't do anything for my pain. I'm on morphine all the time for now. Thanks for posting. I'll keep in touch as I have time.

Rachel

[littlebear]

Hi Rachel,

I'm crossing my fingers for you. Sounds like you're doing a great job with your research, ect.

I don't want to be overbearing or anything, but I thought I'd list all the things that helped to make both the trial and the implant go pretty smoothly for me: 1) I had a really good surgeon (and your Dr. sounds really great too); 2) I prepared myself, my house, and my husband with the idea that I'd be down and out for at least a week each time; 3) I had done research, so I had a pretty good sense of the kinds of complications that could occur (so when they didn't in my case, I felt incredibly blessed and that made things seem really easy to me); 4) because of my research and because of reading the good and bad experiences of folks on the boards, I knew that, even in the best of cases, recovery and good responses to the interstim were a process and that my job was to keep an even keel when things went up and down (which they did); 5) I had the boards, which really helped me to keep perspective when things I didn't plan on happening happened (for instance, I had a killer headache--that I now think came from the rate button accidentally being increased drastically on my machine during the trial--that put me back in bed for a few days 4-5 days into the process).

Of course, it sounds like you've taken care of so much of these kinds of thing, but I want to be sure that I didn't paint too rosy of a picture for you (even though I feel like the trial and the implant were good experiences for me). You sound really on top of things and like you're used to handling a whole lot, though, so I'm sure that you'll take the trial, the surgery, and everything that goes along with them in stride.

Best of luck with it all! little bear

[rachelm]

Thanks little bear for that reminder. My fiance had a frank discussion with me this morning because he was concerned that I was setting my hopes so high that I might be dissapointed if things didn't go as smoothly as I planned. I reasured him that I know things may need to be adjusted and that I may have a longer recovery than anticipated but I'm still hopefull that it won't be more than a week each time. I've timed the surgery so that in the worst case scenario if I am down for a week it will be during spring break. If I'm o.k. then I will continue with my plans to do case study observations for my missed grad. classes. If I'm not O.K. then I may end up with an incomplete to be finished this summer. My prof. has already assured me that she will not fail me and I will still get my certification along with a high reccomendation. I hope that I am able to go shopping with my florist by the next Thursday but if not I'm letting my mom take over that task. I've already got friends and family lined up to help out with wedding invitaions and other tasks as they come up. Brian my fiance is wonderful about taking on the household duties while I'm sick so he will be here to run things and support me. I know that something may have to give and I've decided that it is more important for me to get credit for my grad. class rather than push myself to be at work everyday. I'm looking for a new district that has the program I'm finishing training in so it's important that I finish strong in this course.

Thank you for sharing both your story of recovery but also reminding me to be realistic. My nurse is always complimenting me on my positive outlook but at the same time warning me not to set myself up for dissapointment when something doesn't work.

Thanks again.

Rachel:hi:

[littlebear]

Hi Rachel, Once again, let me say that you are amazing!!! Best of luck with everything!!! Best wishes, little bear

[yvette]

And what would you do with that big magnet anyways?!?!?!?....if I find mine, I just may use it to hold my shopping list to the fridge as its useless sitting in a box somewhere in the basement :lmao: (you know that is the only reason I got Interstim -- the free magnet! :::wink, wink, nudge, nudge::::: )


RJYOON:
I'm sorry, rj yoon, I can't find the blasted box o' goodies....its a mess in the old basment :(

[rachelm]

Thanks so much little bear! I think I've decided that I need a break tomorrow. I'm in total spasm from my mid back down to my thighs and hips. I'm going to stay home from work tomorrow so that I can finish some data analysis and rest before my grad class tomorrow night. I had thought that I would stay up until the work was done tonight, go to work all day tomorrow and then attend my grad class that night. I just have hit my limit and I've got to choose one thing. I won't get paid since I'm out of sick days and only have long term days left but I just don't think I can do a 14 hour day in this much pain. Please keep me in your prayers. I'm trying not to overdo it but there's just so much on my plate right now. I'm learning how to let some things go and prioritize so my energy is focussed on the most important task at hand. :rolleyes:



Thanks for your support! What was the most difficult part of your recovery? Was the incision site sore or infected? Did it hurt deep into the muscle or where did you feel it the most? Can you see/feel the place where the implant is on your butt? I'm waiting on a call back from my rep so I can ask him some of my new questions.

Rachel :hi:

[littlebear]

Hi Rachel,

I'm so sorry to hear about your spasms. I'm so glad that you're staying home to deal with them and that you're prioritizing according to what's most important to you and I know that you said that your grad class is very, very important (plus, you're right, a 14 hour day in pain is not a good idea, especially if you can avoid it).

For me, the physical part of the recovery wasn't bad at all. Nothing you mentioned was a problem for me (I was fanatic about protecting the incision sites after the trial and the implant, though). I think the biggest difficulty, for me, came when I realized after the implant that, even though the trial went well, I wasn't feeling beneficial effects from the implanted device and that the process of programming/reprogramming it (without the meds that help to get me through the night) might well last a good while.

But, that's me. Talking to your rep, to your Dr., to folks on the boards, though, is a good idea. That kind of thing really helped me because knowing what could possibly happen meant that I was relieved when a whole bunch of things didn't happen and that I wasn't hit out of the blue when some things did.

Best of luck with your data analysis tonight and your class tommorow! Best wishes, little bear

[rachelm]

Little Bear,

Why couldn't you continue taking your meds that helped you? Did you have better results with the trial than you did with the permanent implant? I had another question that I thought of just now. During the trial I started having a little bit of discharge like the kind right at the beginning or end of your period. I'm on continuous active BC pills so I never have a period. This went on for the entire trial and my dr. said that's not uncommon because the stimulation increases blood flow to that area. He said it usually goes away after awhile and it's not a problem in the long run with the perm. implant. Did you experience this at all?

What was the difference between the trial and the perm. implant for you?

Thanks for all the help and support. I want to have a complete list of new questions for my dr. He doesn't seem to get tired of my constant lists of questions at every visit. He actually encourages Brian, my fiance, and I to sit down together and write out all of our concerns and questions. He is completely different from every other dr. I ever had.

Rachel:hi:

[littlebear]

Hi again Rachel,

I just realized I didn't answer one of your questions. Yes, I can feel where the device is under my scar (which the Dr. says won't be too visible). Other folks may have had different experiences with this and with the other issues you asked about in your posts, though . . .

Best of luck with everything! Best wishes, little bear

[littlebear]

Hi Rachel,

I had very good results with the trial (I felt the difference almost immediately, then I didn't for the first night, then I did for the rest of the trial--I went from voiding 28-30X a day to between 6-10X). After the implant, I still had the constant urge to void and my frequency was up to between 16-21X a day. I kept waiting for things to improve (and kept using my remote to increase the stimulation), but it didn't make a difference. When I went to have my incisions checked, my rep reprogrammed me (the Dr. said it could take up to two weeks to see if that would work). But, after a week, things really haven't improved. If I don't improve in the next few days, I'll go gack to get reprogrammed again.

Also my Dr. doesn't want me to take meds that interfere with my bladder's functioning (Ditropan, flexeris) while the reprogramming is taking place. He would rather find the best setting without meds (and then add them back, onlyif nesc). Of course, since frequency keeps me up at night, this is less than ideal in the short term, but best in the long term. My job is to handle the fact that I don't know how long the short term will be . . .

Finally, I have heard that the interstim can influence women's cycles (some women have their periods more frequently and heavily). If I'm remembering right, this often goes away (but I also remember it being a signficant negative side-effect in some cases too). If I can remember where I saw that info, I'll send it your way.

Best wishes, little bear

[tigger_gal]

I recieved my information packet, remote manual & directions, I received everything from my rep before my implant the day of my surgery. I recieved, a temp card from my doctor that day also. Two weeks after surgery I recieved my reg card that states I have a medical implant and who to call (his name) in case of an emergency. My rep was so imformative, and made sure I understood it was not for pain, and told me, all the good, bad and the ugly. If your dr and rep are not upfront.. I would be more willing to jump off the table and run like the dickens.
Cindy

[rachelm]

Cindy,

Were you addressing Rjyoon or me? My dr. has been very upfront about the risks, benefits, and other patients experiences. I have talked to some of those patients as well and feel quite confident in his ability to do this implant. He has performed hundreds of interstim implants but still tried everything, even a temp. trial in hopes that we wouldn't need to do a permanent implant. I realize that some of his ideas about using the trial as a theraputic means to end a flare is very unconventional but it was also less invasive and certainly worth a try at the time. He has explained to me that the implant is NOT for pain nor has he promised that I would have that benefit. My rep has discussed this at length with me as well and I've been able to reach him on his cell phone anytime I have a question. What they have told me is that SOME people have some pain relief benefit for a while and others have been able to cut down the number of drugs and instilations that they do after the surgery. I have spent a lot of time talking with his nurse as well, and she very much keeps me level headed about the possible complications that might arise. I'm glad that my rep will be sending me the manual before my surgery so I have plenty of time to look through it. I feel bad for those who have had inexperienced dr. make unrealistic promises about the interstim and then leave their patients with no help after its in. My dr. is in this for the long haul and if it needs to be removed later due to complications I know that he will do it. I think the most important thing people must look for is a dr. who is highly experienced in this (more than a dozen) and willing to listen to and follow up with his patients. I hope Rjyoon, that you are able to get more information soon.

Rachel

[Teri]

Rachel~sounds like you have got a great dr and rep.....I love the way your dr tried the "old" style trial on you to try to stop the flare.....if the future I think this could even up being a valuable treatment for alot of ICer's and I hope other dr's follow your dr's lead:thumbsup:

[rachelm]

Teri,

I agree! I'm going to ask him if he plans to write a med. journal article on the idea. I wish it had been all that I needed because it was such an easy procedure to go through with fewer risks than the implant and dramatic benefits. I know that he is doing this with other patients as well, and he said that some have been able to keep the wires in for up to 5 weeks as long as they didn't get irritated or move inside out of place. My orrigianal plan was to use it again next year at the beginning of a severe flare. My bad flares usually come in late winter. I hope that I'm doing the right thing with the permanent implant now that my symptoms have come back severely. I want to feel the way I felt in my trial again. I've never had releif from pressure in my bladder for as long as I remember. I started getting uti's at 4 and ever since have been aware of my bladder.


I want to spread the news of this approach because many ICers have seasonal flare as I do and could benefit from a less invasive temporary treatment.

Teri, you have the implant right? How was your recovery from each stage? Did you get the same result from the stage 2 as you did from the trial? Did you do the old trial or stage 1 trial? I'm just trying to prepare myself for the possible challenges that I may encounter as I move through the implant surgeries.

Thanks:thumbsup:

Rachel

[tigger_gal]

on no, Rach, not at all, just the doctors in general that have lack of knowledge of the interstim device... (and the reps that don't do there job well) I think all drs should be as well as informed as yours and mine, and who everelses out there :D
Brat

[rachelm]

I agree. I think that more dr. should be upfront with their patients about the risks and benefits. The strangest thing happened today when I called my insurance co. to notify them of my surgery. The woman taking the call told me that she had a friend who had the interstim for the past year and a half. She has IC and said that it has been a life changing miracle for her. She is now able to live a normal life wheras before she was going pee every 10 min. and on heavy pain drugs. She was one of the lucky ones who has pain releif from the interstim so she nolonger has to take pain meds except for brief flares. It was so encouraging to hear her story. I meant to bring up a point that my dr. made the last time I saw him. He explained that for some reason the higher frequency setting seemed to help patients who have severe pelvic pain more than the lower frequency. During my trial I had dramatic reduction in pain for 2 days and then it started coming back just a little bit. He gave me an additional box to try at 50 frequency and told me to switch between the two and see if I noticed a difference. After one full day on the 50 I noticed improvement again so I stuck with it until it quit working and he reprogrammed another one at 50 to replace it. The lower frequency one was at 30 I believe. He said that it works like a new song that you pay attention to at first but eventually you don't notice it as much. By changing the frequencys periodically he said we should be able to keep the maximum benefit possible.

I'm glad that he can reprogram me with the remote computer instead of having to dig it out in surgery every time we needed to make a change. How many times have you had reprogrammings and revissions? I'm just curious. I'm hoping that after it's in that I don't need anything else done in surgery until after my june wedding.

I was hired over the phone while in my pajamas today after a principal looked over my resume and spoke with a previous coworker who recommended me. She said she wanted to meet me in person later this week but that she had to have her recomendations for transfers in today. It was a relief! Now I have one less stressor to worry about. I will still be looking for a job as a reading specialist because my district cut the position, but at least for now I know where I will be transfered to in the event that nothing better comes along. Essentially I was looking for 2 jobs. One in my district so I can sign a contract now and one if I'm able to find a district looking for my specialized training. I just can't resign at this district until I have another job.

Anyway I'm sorry I'm so lenghty. My meds have my brain racing 100 miles a min. so I don't crash and stop funtioning. I'm sure that's why I misunderstood your last post. I'm a nut right now! Bare with me I promise I will gain my sanity as things settle down. Can we PM again? I would like to ask those of you who have the interstim some more questions as I think of them. Let me know.

Thank you all for everything!!!! I don't know what I would do without the support and information that this board has provided me. In fact, Brian, my fiance said that he enjoys watching me discuss things with my dr. because I can hold my own and caryy on a quite remarkably informed discussion because of my research. He thinks my dr. gets a kick out of it. God knows I'm assertive or I wouldn't have made it this far. Take care! Does anyone know how Jess is doing? I know she was going for a revission soon. If you talk to her please tell her I send her my prayers and thoughts.



Rachel

[peiti]

Rachel,

I will pray for you that your trial and permanent surgery go well.

My stage trial was on 10/22/2003 and the implant was on 10/31/2003. I was able to walk very slowly for half hour on the second day of my both surgeries. The surgery pain was not terrible, so I was able to walk and sit reading or watching TV. However, after my second surgery, it was hard for me to swtich positions when lying on bed. I am used to rotating positions when sleeping, so sleeping on my back can be a problem cause my IPG was implated under my waist line.

My suggestion is to take it slow.

I just came back from my fifteen reprogrammings. InterStim has helped a lot on my bladder pain/spasm than my frequency. I still need to go 15 times a day sometimes. but i guess it is better than 20 times a day.

Wish you the best.:hi:

[dyno]

Rachel,
I am praying all goes well, glad you got the news about the job. Good luck!:grouphug: