Good information from Medtronic, wish I'd had it earlier

[rjyoon]

While talking with a Medtronic rep on the telephone about my many questions on life with Interstim, she offered to send me a Medtronic Pain Therapies Neurostimulation Patient Information booklet. (Repeat after me: Interstim is not for pain.) I ignored the part about pain. The part that describes the implanted system, neurostim system FAQs, implant procedure FAQs, post-surgery FAQs, activities FAQs, electrical device FAQs & medical procedures FAQs had great information that I would've like before starting the trial. I learned what to expect as scar tissue forms around the implant, precautions for hot tub/steam room/sauna, scuba dive limitations (33 feet - any lower than that and the unit can deform!), arc welding concerns, electric substation precautions, and more.

I don't know if Medtronic would be willing to send this booklet out to people scheduled for Interstim trial or those considering it, but it's probably worth asking. I found it to be very informative & will now take care in some situations I hadn't yet considered otherwise.

[Teri]

Thanks for that great info Rjyoon:D It really says alot. In my opinion, any uro who is doing this surgery should have ALL of the literature that medtronics puts out in his/her office at ALL times so that if he/she suggests this form of treatment, you can get the whole picture instead of bits and pieces.

I am very good at making notes before my dr's appts.....I walk in with a trail of post-it-notes and there are still times that I still forget to ask a question. If you were given these forms from Medtronics immediately, it could save alot of heartache and pain. (My uro loves my notes cuz he just copies them from mine notes to my file:D) I know that when they first started doing these surgeries there was also a video avaliable.....people should check on that too.

IT"S YOUR BODY!!!!!!! BE AS INFORMED AS POSSIBLE........

tons of hugs to all~

[littlebear]

Thanks so much Ryjoon and Teri. Best wishes to you both, little bear

[Mimi-in-Chicagoland]

The things you learn on this board! I'm glad I didn't try scuba diving sometime. :eek:

[Dixiefireball]

i don't think that information could ever get old that is a very important fact that people who are thinking about the stim needs to know about a year ago i almost went for the stim because the pain clinic i was going to try to tell me it would help my pain. I didn't do to much research on the subject because i decided that wasnt what was right for me, but i do know this is an important fact everyone needs to know.
hugs and prayers sent to you all
Rhonda

[Snuph]

I am interested in what it says about scuba diving, hot tubs etc. I went to the medtronic website and I could not find any information about that. I have had the implant for 4 years and I regularly use our hot tub and have scuba dived. No one told me any different
Thanks

[Mimi-in-Chicagoland]

I love hot tubs...what does it say about them??

[Teri]

when I had my device I asked my dr about tanning beds and he said it would be just fine so I don't see any harm in a hot tub. I do think I would ask my dr about the scuba diving tho......better to be safe than sorry. He may want you to turn it off while you are going it.

good luck:blink:

[Mimi-in-Chicagoland]

The book said don't go below 33 feet or you risk warping the device. That's pretty much just snorkeling. I guess I can scratch getting my scuba rating off my to do list.

I was wondering what that same book said about hot tubs. The doctors never said anything about scuba diving, either. OR offered this book. I didn't know it existed, and I read EVERYTHING on the website and all the info they gave me. Thank you again for telling us, Rjyoon.

[rjyoon]

From the above-mentioned booklet:
A: Yes, but if you should feel any localized heat sensation around your neurostimulator, get out of the hot tub, steam room, or sauna. Elevated temperatures may cause a slight reduction in battery life of the neurostimulator.

[peiti]

Hi,

Just curios if I can play golf. I will ask my doctor soon, but would like to hear your feedback.

Is it ok to twist a lot?
Thanks, Peiti. ;)

[rjyoon]

...you should talk to your doctor if you perform any excessive or repetitive activities that may damage your neurostimulator or lead(s).

Q: What can cause a lead fracture or dislodgement?
A: ... Leads become dislodged primarily because of certain motions or sudden or repetitive movements. Exercise and other activities should be approached with caution. Excessive or repetitive bending, twisting, bouncing, or stretching can move or break the lead. ...seemingly harmlesss or repetitive movements can cause unseen damage over time, eventually causing the lead to fracture. This damage may require surgery to repair or replace the lead.

[littlebear]

Thanks so much for sharing this, Ryjoon. After reading your posts, I have no doubt in my mind that I have to get ahold of this handbook. Best wishes (and thanks again), little bear

[rachelm]

O.K. Thanks rjyoon. I called medtronic today to make sure I had all the materials before my surgery. They told me that the manual comes in a package with the device, patient programer and magnet. She said most of the book is about operating the generator etc. but that there are a few frequently asked questions covered. She went over them with me and said that I would recieve the book before surgery next week. She also urged me to direct procedure questions to the dr. and that the reps are for technical support for the dr. but sometimes allow patients to contact them. She said that I don't need to ask medical questions of my rep only operating instructions and warnings for the device.

As far as the comment about medtronics neurostims for pain they also make 2 stimulators specifically for pain. I have discussed them with both my pain dr. and my urogyno and decided to first try interstim. If I do not get enough results by decreasing the spasms which is where most of my pain comes from then I will consider the other more invasive spinal neurostimulators. If you go to the medtronic site you can find information on all of their products. As far as the response from the medronic operator I'm sure that some of their publications on neurostimulators are general in nature and address the pain stims as well as the interstim. The examples you give however, are directly out of the InterStim product patient manual. Thanks for updating us on the added precautions. I am like you I am knocking on all knowledgeable sources for as much info as I can get ahold of before going through with this surgery.

Rachel

[rjyoon]

I did not get an Interstim product patient manual with the information I typed in earlier posts, so I'm a bit puzzled. I only found the information in the generic implant manual. I only got the patient programmer & quick reference card right -- no manual, no magnet, when I had surgery, so even if Medtronic packages them together, they don't always make it to the patient. Sounds like things are not very consistent from doctor to doctor from a patient perspective.

[rachelm]

Maybe its possible that the same questions and answers are in both the manual and smaller booklets. I think its terrible that you didn't get the whole package that is for patients when you got your stimulator. I talked to my rep today and he has sent me 2 more manuals. One for the lead wires and one for the device. That was the first I had heard of one about the wires. I have all of the booklets written for patients but I wanted more specific details about the workings of the device and wire. I had a long talk with my rep today and he said I ask good questions that 99% of patients don't ever think of. It was good to get some added info about how dr. handle removing devices and wires when needed such as after an accident. I was relieved to hear him say that in his experience with 10 dr. and hundreds of implants he has never had a dr. that was unable to remove the wires due to scar tissue. Again he made the point that the expericnce level of the dr. is critical when looking at success rates and the ability to correct problems.

Can you contact your rep to request this manual? I wish there was more consistency from dr. to dr. and rep to rep because there are a lot of patients out there who are not given the whole pictutre. My rep also said that he will not offering training to some dr. if he feels like they are salesmen for a product. He has a few pain dr. that want to get trained on it because they think that some of their patients will benefit from the less invasive procedure. He refussed to help them because 1 that is giving patients a false hope because it is not proven to be useful for pain. 2 They aren't urologists or urogynocologists and this product is for the nerves that control the bladder. In his oppinion while they may be capable of placing the implant correctly he doesn't specialize in the field needed to monitor bladder patients. I thought that was great because from what I'm hearing some people post about their dr. it sounds like they are pushing a product rather than treating a patient.

I hope that you are able to find someone who will be more upfront with you and give you the info needed. I will post more after I get my manuals.

I can see now why people fly from out of state to see my dr. It is really hard for people to find good treatment for their I.C.

The part about the booklet discussing treatment for pain I'm sure was for the products that are for pain not the interstim. That's all I meant by the refernce to their other products.

Are you havning relief from your interstim now? How many revissions did it take before you had some success. I was also wondering if your dr. had you semi-concious to respond to where you felt the sensation. My rep says a lot of dr. put the patients out and rely on exray and motor response from the foot. My dr. says that where the patient feels the stimulation is more important than the motor response so he puts me almost completely out so that all I remember from it was feeling the buzz and telling where it was. It wasn't painful at all.

Thank you so mush ryjoon for bringing new things to think about and ask questions of before my surgery. It has been so helpful to get info from all of you so I know what questions to ask.

Have a good day!

Rachel:hi: