INTERSTIM IMPLANT

I am getting the Interstim implant on January 8th and I would like to find out if anyone has it and how long was it before you could feel it was working? How long was recovery?
Frances

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Maggie, would love to send you an invite, but would need an email address for you in order to do that...you can send it to my personal email if you want and then I will get you an invite. I think you will find loads of support there with IC, Interstim, etc. I sure have...so good to know I am not alone and have found loads of info too! My email is: lovesunrae@yahoo.com
The site is I_shine and is part of Yahoo Groups. Hope to chat with you over there!
Raelyn

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Hi there
I was reading you story and now I am thankfull the interstim didn't work for my husband. Anyway is there anyone on your yahoo support site that has found something else that helped with retention? If you think there may be could you please invite me. my e-mail address is cleofet@hotmail.com Thanks and keep strong and God bless you and everyone with bladder retention.

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Hi cloefet,
I and Raelynn are sidekicks. I have extremely serious interstim damage that has taken most of life for me away as far as doing anything that requires walking,etc. It left me with a spinal cord injury. There are some things that help with retention.
I know she is trying to get you to the site as well.
My husband has issues as well and goes back and forth on his bladder. I have IC with Hunner Ulcers and my interstim was put in long ago. I could not walk before it was finally taken out and have a severe permanent spinal cord injury from it. So I am glad too about your hubby.
you can try this to and see if you can get in.
I_shine-subscribe@yahoogroups.com

I don't know how much your hubby is retaining. A real good vitamin for that is B6 as it helps eliminate fluid.
My hubby takes it as well. I don't know what he has been diagnosed with or what he has but there are some helps. I cath and maybe he does too.
All the best to you,
Sharrylynn

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Hi Raelyn,
I am having a burning sensation where the implant is. Did you ever feel that way? When did you get the interstim and how long before you started having complications.
God Bless You and take care,
Anne

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Hi All!
Sharrylynn, Like you I have horror stories although not as bad but I fear it may get to that point. I have had nothing but problems since two implants. I have shocks, tingles, pain and jolts in my legs and feet and can't stand shoes anymore. Back aches, low grade fevers, shingles and blisters on the sites of the implants and wires, and sleep disorder. The physician assistant of the doctor who implanted the devices said it seemed I was having auto immune problems from the devices and she would talk to the doctor and get back to me. 7 weeks went by with no word. Ultimately I was dropped by the doctor with no where to go! She didn't even refer me to someone else. Every surgeons office I called regarding interstim removal says the same thing, go back to the doctor who implanted them. I've sent letters and made phone calls to all the neurosurgeons in my area and can't find anyone to help! Medtronic....well, you can speak to a phone rep, sales rep or use their web site to find a physician. In other words, forget any help from them. I asked to speak to someone higher up and the rep said he was it. Unbelievable!!!!
If anyone knows of a doctor who is willing to help with removing these devices...PLEASE let me know!!!
I'm past desperate. My symptoms are worsening with time.

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Hello, I came across this site looking for info about Interstim implant. I am scheduled to start the test phase next week and still kinda ify about it? I already have ALOT of health issues and do not want to add to them. I have been putting this off for several months hoping different meds would help, no luck with them. When I came across your response I am really worried now and should be. I see that I have a very big decision to make. Thank you for informing all of us that had not realized the severity of this procedure.I am so sorry you and your friend have been through so much. My heart and Prayers go out to both of you
LisaKO.

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I have just gotten approval from my insuarance provider to see a doctor to discuss interstim. I got online to review everything. It seems that most people are unhappy with interstim. That scares me.

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Oh my goodness! You poor thing! I just "heard" about this device today, you just scared the heck out of me about it. I am taking Elmiron and really watching my diet (I mean obsessively--otherwise you pay, you know!) Did you take Elmiron? I find some relief with Oxycodone and Librax. I read about the Librax from someone else, and it really works! I forgot to ask you if you suffer from IC or OAB? I have IC. Thanks for reading and responding if you can.

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Hello, I am so sorry to hear you too are going through this horrible pain and disruption of life!! Did you take Elmiron? If so, for how long? No relief? The drug Librax and pain killer Oxycodone are my life savers. I really watch my diet and it helps. If I eat anything off the list, I really pay. I still can't give up that cup of coffee in the morning, so I probably would be a lot better if I did that. I think this interstim thing is TOO SCARY for me. I think I would rather take pain pills my whole life before I risked my whole life. I wonder what you decided to do about the interstim? Thanks, and God Bless you.

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I had the device permanently implanted in July. With weeks I started having bowel problems and soon after stopped having any feeling that I had to go and could not go without tons of medication. I turned it off on May 5th and I still have the problems. I ended up in the ER and was hospitalised for 5 days but all they did was get things moving with medication. I still cannot go normally and no doctor will address it. My uro insisted it was narcotized vowel but I went off all narcotics for some time and nothing resolved. I looked on the FDA website (MAUDE) but obviously did not know how to search it and found nothing. Could someone help me with that?

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I had my interstim placed last year and it works fine for me. The recovery is not that long I was sore more with the first procedure but the second the recovery was easier. I was back to work after a week after the actual implant. I think the worst part is when you go for the trial because they tunnel to where there going to place the leads so you are sore from that. when you do have the interstim placed I found that the level I had the battery on was not the same as when I had implant. I put the implant on the same level as the battery and had alot of pain because it was up to high. once I turned it done I was fine. also the novelty of it takes a while to wear off before you don't even know you have it. for me I had avery good experience and still do with the implant. I wish you the best of luck. go in being positive. and remember each person is different so if you heatr good or bad you won't know till you have yours. best of luck and start of at low level .

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I am having problems with my Interstim since Sep. 2009 (Impalnt was July 2009) and my doctor and medtronics just abandoned me. I would love to have an invite. I feel very alone. I still have it in and saw another doc but now I am thinking it might be best to have it out. My old doc denied any problem and the new one says he sees it often!

tiggy3342

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I haven't been here in ages but just read your post. How was your surgery and has the interstim worked for you? It did not work for my husband and he is still self catherterizing four to five times a day. We are praying for Divine intervention. Please e-mail me if you get a chance cleofet@hotmail.com.
Take care and God bless.\
Mary

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Hello Dawn,
I had disasterous effects from interstim! The short version, after two implants, many reprogramings, botox, internal massage, heath deterioration, financial loss, mental and physical pain only to be dropped by the dr. who implanted them. It sound unbelievable but if you decide to go through with it, have the doctor put in writing that he/she will remove them if you decide!
It's been a long grueling road and if I can shorten any one elses It would be satisfying. Without focusing too much on the past negative experiences I can offer what helped me personally, immensely. There are some healing tones called the Solfeggio frequencies and I recommend you check them out, specifically 528 hz. You tube has many choices. I found the ones with binary beats and without back ground music worked better for me. When you immediately start feeling better it will lead you to a more positive existence!
Be Well!
kar

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The recovery for 1st stage was longer than the 2nd just a couple of weeks. I started to notice a difference soon after can remeber exactly when but I love the implant it works great for me. I forget that I have it alot of times. becarefull not to put it up too high because it is different from the battery one. I made that mistake I put it on the same level that I had the battery on and cause me pain. if you have pain turn it down. Well my thoughts and prayers are with you, I hope you are as happy as I am. E

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