Thread: Ive been told Interstim or cath
01-28-2007, 02:03 AM #1
- Join Date
- Nov 2006
Ive been told Interstim or cath
I know these boards are for IC, but this is the only board that I found that actually talks about the implant.
I had a hysto back in October of 2006 and have had complete retention since. I am self cathing now. I have been to see two uro/gyn's and both say to do the implant. I am a little hesitant though. Just seems like that is just what "they" want to do and be done with me. It feels like they are just trying to sell me car or something....sad...
Anyway....One of the doctors is a Mayo doctor and says he has implanted over 400 of these and 1/3 was for retention. He said he hasn't seen any migration either. He did say that infection could happen as all surgeries have that possible complication.
I have read alot of horror stories here as well. I just am not sure about this. Has anyone here done the implant for retention and if so, did it work for you? I know we are all different, but I need to make sure I am making the right choice.
01-28-2007, 02:15 AM #2
THere are alot of girls that have the stim for many different reasons, for me I mostly did it for the urgency. I have had great success. There are a few gals here that got it for rentention.
Do your home work on it, know that it is not for pain. Please read my sticky at the bottom of my page a clickable link, what you should know...
This is your choice and you should be the one to make it, don't let any one pursuede you either way. You also can go to www.interstim.com, you can have free info sent to you.'The will of God will never take you where the Grace of God will not protect you.'
01-28-2007, 03:30 AM #3
I am having the InterStim Stage 1 (trial) implanted on Friday of this week. I have both frequency and urgency as well as retention (it kind of alternates, although when I'm in a f/u stage I don't completely empty anyway).
I decided to do this because while medication has definitely helped, it has not gotten me to the point I would like - I have a tough job as a research scientist, and I have to give a lot of presentations that are an hour long (plus long experiments), and the sudden urge makes these things difficult.
Before I decided, I did a lot of research on the implant itself -- how it works, how the surgery is done, etc. I looked at patient stories and talked to actual patients about it -- and I heard both good and bad stories. I also talked at length with my doctor; however, I never felt that he was trying to "sell" anything. He just thought this would be a good thing to try and was willing to sit down with me and talk about both good and bad things.
I also did a lot of talking with family and a lot of soul-searching, and came up with the decision to at least try -- I feel I owe it to myself and my family to do this, to find out if it can help me in my quest for fewer symptoms.
I guess I'm just suggesting that you also do your own research and then make your own decision. Take all the time you need to do this. For me, the decision took months to make.
I hope everything goes well for you!!!****
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
01-28-2007, 03:39 AM #4
- Join Date
- Jan 2003
I agree do your homework, I got my stim for both urgency/frequency and like Sarojini retension problems also. IT has helped drastically. Please do your research on and off these boards. Talk to other Dr who do them. This has to be your choice not your Dr.'s
01-28-2007, 04:27 AM #5
You didn't mention it, so I will ask: Have you tried any of the medications that help those muscles relax so you can urinate? The ones that immediately come to my mind are cardura, hytrin, and flomax, but I know there are others.
You have a difficult decision to make and I also encourage you to do your research.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
http://www.icnshop.com for all others
Patient Help: http://www.ic-network.com/patientlinks.html
Diet list: http://www.ic-network.com/diet/2009icdietlist.pdf
You'll find my story at: http://www.ic-network.com/patientstories/donna.html
I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
Anyone who says something is foolproof hasn't met a determined fool
01-28-2007, 05:53 AM #6
- Join Date
- Nov 2006
I did try Flomax and eurocholine. I had to stop the Flomax because it was giving me severe nightmares. I was going to try it again because I still have some left, but a little nervous. Unfortunately, the doctor that prescribed them to me is no longer even seeing or talking to me. I have been told that I have non obstructive urinary dysfunction, urinary retention, non-neurogenic neurogenic bladder and a neurogenic bladder. Every doctor tells me something different. I think my surgeon made some sort of mistake during surgery and when he found that I didn't get any better, he chose not to see me anymore. I haven't heard of cardura or hytrin though. What do they do and do you think it would be something that I should ask my current doctor about? I want to try everything I can before doing this implant. It just seems like they all want to do the implant.
I am going to the Cleveland Clinic in 2 weeks hoping that they can give me some answers. I am going to go in there without my medical records as well. It seems doctors will read my urodynamic study and then just put it aside and say "cath or implant". I am not sure if I am ready to accept that though. I did have some contractions during the study, but they weren't where the doctor likes to see them (those were his words though). So I am not sure what is really going on. I went into a hysto and came out like this. I never had any kind of bladder issues prior to this surgery either...not even a UTI...ever. I wasn't even told that this could be a complication from a hysto.
Please let me know if you think I should ask about those other meds that you mentioned. I will try and look them up as well.
Thanks again for everyone's response.....it does help. Oh..and I have sent numerous requests to Medtronic about them sending me info and I haven't received anything yet....my first request was back in Nov. I might just have to call I guess.
Originally Posted by ICNDonna
02-02-2007, 10:41 AM #7
Interstim for Retention
I have severe retention as well and have to self cath. I have tried all kinds of medicines, including flomax and valium, and my current meds are elmiron, atarax, flexeril, lyrica, pyridium, resteril and morphine as well as physical therapy. I am having the first stage of interstim in two weeks. I am hoping that it will aid in my retention issues. Some doctors say that if you have chronic constipation (that is NOT caused by medicine), then your interstim could possibly help that as well.
If you are considering the interstim, go to the medtronics website and order their free information, talk to your doctor and research, research, research. Medtronics also has monthly teleconferences where you can listen to a doctor and also ask specific questions. The next ones are Feb 13, March 13, and April 10. You can call toll free 877-209-9919 and tell ther person you are there for the interstim teleconference. They start at 8:30 Eastern standard time each month.
Good luck with your decision. As everyone else has said, make sure you exhaust all other options before trying interstim. It should be a last resort, not your first or second thing to try. And, remember, while it MIGHT help some of your pain, it is NOT indicated for pain whatsoever.
02-02-2007, 11:02 AM #8
I agree with the others try everything before opting for this. It is consider as a last resort. I am one though that has had a migration problem and this is a possiblity that can happen. I had a car wreck that caused my leads to migrate. Best of luck to youGod grant me the serinity to withstand the days ahead!!!
My myspace link...
In Memory of My Father (Lawerence) 1/25/2007
Interstim Sept 2001
1st InterStim Removal May 2005
2nd Interstim Implanted May 2005
2nd InterStim Removed March 2007
Tubes Tied 1997
Me and my kids
Taylor (my daughter) Me and my daughter My son Cody and Taylor
02-03-2007, 03:11 AM #9
Oh yes, before you opt for surgery, you should try any and all medication combos..'The will of God will never take you where the Grace of God will not protect you.'
02-17-2007, 10:38 AM #10
I agree with Jen.
I like you feel that I am out of options..
I have a job I really love and yet cannot do because of frequency and pain... awful burning doubled over pain.
I have a home that I used to keep spotless and now it is difficult to do the simply chores regularly.
I have a precious gift from God and she is only 9 years old and she needs her mommy to be able to play, dance, shop, go for walks... not one that has to lie down and take meds all the time.
I have a renewed faith in God and I believe that the opportunity of the interstim, my family being supportive, and my employer making a way for me to take medical leave... it is all an answered prayer... the interstim will work for me... I am speaking it into existance just as the Bible tells us we must do.
I know for some it has not and I pray for them.
I have faith that it will work for me. Pray and do what you believe is best for you. As Olga said... we are all different and our cases our different... but we have the same God ... the same healing God.
You are in my prayers!
GeorgiaFaith is not believing God can; Faith is believing God will!
02-23-2007, 03:24 AM #11
Hi Julie ;
Well to let you know I am one that had severe retention so bad that it happen over night that I passed out with such awful pain and later to find out that my urethral tube had gone partly paralyzed and I stop peeing on my own I had to self-cath myself for over a two and half year span every four hours..
I also have PFD and I did exercise for this and biofeedback as well and urodynamic so the InterStim Implant was my last resort..
I also did all kind of meds and treatments as well for my urgency/frequency before I had my problem with the urethral tube.
I have had the InterStim Implant almost eight years and it has just been so wonderful..
I notice it the second day with the InterStim trial that I had wet my pants it was such a shock to me and just to know that I was able to pee again on my own..
I am now waiting to have the battery changed in my pace maker and I am having the new pace maker placed in as well and I notice that I am able to pee on my own as of yet with out the help of the InterStim, so all those years with the InterStim Implant I must have some life back in my urethral tube now..
So that is to tell you how much I have been helped with the InterStim Implant.
I wish you all the best on what decision you make you are the only one that know what is best for you Julie.
Hugs, DebbieThinking positive has got me through to another day!!
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