Interstim stage 1

I had the stage one put in at the office with and I am in quite a bit of pain Unit seems to be working but I cannot tell much since the tailbone pain is so overwhelming. Anyone can share with me their experience or advise?

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Hi do you have a box that you can turn the frequency down? If you have try it at a low setting and see if it improves. It may also be a bit bruised from the insertion site. If it does not settle tell somebody. Glad its working tho.

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The setting is on 4.5. Don't really feel it. Symptoms are well controlled. I went shopping to three stores and never had to run to the potty. Tail bone pain has settled down a great deal compared to the day I got it done. That pain was so intense I would have rather wet myself forever than deal with this thing. Putting the trial in an in office setting is crueling How long have you had one and do you like it?

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Hi glad your pain settled I had mine removed due to pain the trial 1st stage one was great tho. I do not envy you having it put in at the office I was in the operating theatre and numb from the waist down. I live in the UK. Good luck.

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I certainly am discouraged about trying the Interstim. It seems as if there are more negatives than positives! I don't read much on this site about successful botox treatments which seem less invasive.

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Sorry I am a little late in replying but a good thing for the pain is Ice. I kept ice packs on my tailbone for the first week, rotating them out 24/7 and did not have the pain I had when they put in my Trial or my first leads.

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Wow. I believe UK medical care better than what we have here. I like the results of the Stage 1 no bladder urges like I have had. But the discomfort I felt at first almost wanted me to deal with it for the rest of my life LOL. Thank you the tip to adjust the frequency.

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What are you results and satisfaction on the Interstim?

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I am satisfied with my results and experience with InterStim. That being said, it wasn't perfect from the get go but I now have almost 100% bladder control without pain or discomfort from the device. Will be gald to answer any specific questions if you have any.

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Glad you are feeling better. I am very satisfied with my interstim device.

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hi although the device did not work for me it has in fact damaged me, I know it works for others. I am lucky to be in the UK where cost is not an issue but you have fab drs in the USA. Thank you for your support on this site.

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Not all drs are that fab. And insurance is a major pain in the butt.... my support to you and others

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Hey everyone,

I am scheduled to have my implant procedure this Friday. I have to admit, I purposely stopped logging on to this site because the things that I was reading just scared me. I was thankful for a few ppl on this site, like RockabyeBailey who was very informative about her experience.

Unfortunately for the most part, I seem to be reading more negatives than postives but don't know what an alternative might be. I have decided that tonight (the final appointment before the surgery) I'm going to talk to my Dr. and discuss my fears. I'll judge by his reactions if I should delay it or not.

Also @ LisaLLP, it's possible you have the unit up too high. I personally found relief when it was on 2. If your having pain in your tailbone, it sounds like possibly the wire has moved. With the test unit the wires are basically held in place by tape and can be moved out of place very easily. I wish you the best of luck, and will keep all who inquire up on my decision to go thru with the procedure.

-NJBROWNGIRL

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you are being smart talking with your doctor.. i just hope you don't keep putting it off. i am having a very good e. plxperience with my interstim. you are right about the negativity of the implant. i hope you go forward with the surgery and be your own judge. my thoughts and prayers are with you please keep us posted

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My thoughts are with you as you make this decision. Please let me know what you decide and I wish the best for you no matter what you choose.

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I,m having phase i today.. was it painful and what couldn,t you do??
What painmeds work best

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I'm scheduled to have phase one today at noon.. i was ok until reading this site
Any info you can share that will help ease my mind

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They will give you pain meds to go home with. I used ice packs 24/7 for the first week on my third surgery and did not have any pain or issues. Also, you need to severely limit your activity for the first week and then don't do anything that involves twisting or severe bending for the next couple of months or until the tissue around the device and leads have healed. Doing that will usually prevent some of the issues you have read about where someone's leads or device moved. I have sent you a friend request and will be happy to answer any specifice questions you may have about how my experience went as I am one of the lucky ones on this site where it is working for me.

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Thanks for getting back so soon..I wasn't scared until i started reading comments..I'm one if those patients who doctors want to pull their hair out..
What condition do you have?? And has this procedure helped??Do you mind if I ask how old are you??
It's almost time to go and I,'m shaking like a leaf
I might be in touch with you over the weekend if you don't mind..
When did you have it done??
Thanks
Sheila

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I have severe Overactive Bladder and I am 57. Yes the procedure has helped immensely but I can't say that I am 100% cured or back where I was before all this started back in 1997 when I had my first sling surgery that caused all of this. However, I do consider my life "normal" again and I am no longer controlled by my Bladder or worry about being able to find a bathroom in time. I had my Trial put in on August 3, 2011 and had the permenant device put in on Auguest 24th. Unfortunately we discovered that I was too far under the Anesthesia to be able to correctly provide information about what I was feeling and we believe the leads were in the wrong place. I asked my doctor to go back in without me being under any Anesthesia and place the leads in a different place. Yes, I had it done with no Anesthesia and only a small amount of Morphine to "take the edge off" and yes it was very painful but it was the right decision FOR ME and may not be something others would consider. So on September 9th I had new leads placed fully conscious and we discovered that we made the correct decision. Next came a very long Trial and Error Phase where we tried to perfect the settings but seemed to be getting nowhere. I had a new bladder sling placed in February 2011 and we finally decided that there were issues surrounding that surgery that were affecting how my body was responding to the InterStim Therapy. In February 2012 a new specialist went in to do a revision of the sling and graft that was placed a year ago and he discovered that the sling had created a band around my urethra which was causing a new and different type of Overactive Bladder. He cut the sling and did a few other things and that caused the "band" to dissappear. After a few weeks as my body healed from the surgery and gradually returned to "normal", we discovered that I was finally responding to the InterStim in the correct manner. I can thankfully say that although it took over 6 months to get where I am now after multiple, multiple, multiple re-programming attempts my doctor had to make, I am finally able to live what I consider to be a normal life. I see my regular GYN next Monday and he may try Botox to see if that will take care of the last few issues I am having and then perhaps I can give up the pads/diapers I have lived with for over 15 years.

The one piece of advice I can give you is to not get discouraged if the device does not begin working immediately after you get home from the hospital. It will require a stubborn determination on both your, your doctor and/or whoever is responsible for the follow-up and programming of your device to get to where you have success. I am not saying that some of the negative issues you read about on this site were caused sorely by incorrect programing or even because they (or their doctor) did not want to keep returning for multiple repeat visits for device problems but it is a definite possiblity. I count myself one of the lucky ones because my doctor has been so supportive in whatever I asked her including undergoing major surgery without Anesthesia (told me to my face I was crazy but she would do it if that is what I chose) and even cried with me when re-programming attempts proved unsuccessful until we reached that magic setting (after the revision surgery) that seemed to work. At my last appointment we both cried because she finally decided to share with me that when I first came to her almost a year ago that due to the severity of my condition she was not sure that InterStim would help me. Because I was so desperate for relief of any type no matter how small, she decided to accept me as a patient and proceed and I am so thankful that she did. While my heart goes out to all on this site that have had horrendous experiences with this device whether it can be attributed to the device itself or the skill (or lack of) the surgeon who implanted it, there are definitely enough persons who have been helped by the device. Each person needs to make the decision about whether their current quality of life is so poor that they are willing to try "whatever" to have a chance at being normal again then they also must be willing to assume the chance of being one of the unlucky ones that may be damaged or that the device does not work. Again, if there are people on the site that have the device and it isn't working for them, they need to demand that their physician keep trying new settings until they find the correct one. I truly believe that no relief means it is either implanted in the wrong nerve or is not set correctly. Again, that is just my opinion.

I wish you well and I will try to check over the weekend for messages or posts from you.

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Omg!! I got home around 2 pm today from the surgery,, i have been on an ice pack sknce. I can't believe how much pressure and pain i have in the vaginal area .
It feels like i had an epeesiodmy.... did you experience that??
I hope i feel better tomorrow
Txs
Sheila

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