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  • cbsummer
    replied
    Thanks for your reply. Yes the doctor is very experienced. It won't be my uro doing it. As far as removing when I say so I don't worry about that. Anything I want I seemed to get from the doctors. They give me my options then ask what do you want to do. Sometimes I wish they would just say this is your problem we are going to do this and you will be ok. Not what is bothering you what form of treatment will work this time. I quess I have been at this for so long the doctors respect that I know what might work and what I know won't work thanks again I'll let you know when I make up my mind.

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  • Teri
    replied
    Welcome to the ICN <img src="graemlins/hi.gif" border="0" alt="[hi]" />
    I have some unwanted, unneeded side effects from my surgery but as a whole, the device is definately doing it's job. As long as you are having the surgery done for urgency/frequency....this device DOES NOT HELP THE PAIN!!!!!! There have been a couple of gals who have been helped as far as pain is concerned but if you are going into this thinking you will be pain free after, you are probably setting yourself up for a great heartache.

    There are girls who had there surgery after I had my original one in 1999 and they are off living 'normal' lives. They just don't post anymore. There has been alot of negative talk lately but I think that ALL aspects should be looked at before you go into this. When I did it in 1999, I didn't give two hoots about anything that could go wrong. My life was at a complete standstill and I was housebound. It didn't matter to me what 'could' go wrong. I knew that if something didn't change I was gona be checking out [img]frown.gif[/img]

    PLEASE make sure the your uro has done several of these surgeries. Ask him/her if he/she will remove the device should you want it removed down the road. Ask your dr if he/she does the adjustments or a medtronics rep. And, above all, if your trial is not sucessful.....think long and hard before you go into the permanent part of the surgery.

    wishing U the very very best~

    Leave a comment:


  • cbsummer
    replied
    I looking for courage to make the phone call to go talk. I have treid everything else. I kept IC in the backseat for 20 years just letting it out on occasion well it has been back for 2 years now nonstop. Like I said i have tried everything else that worked before plus others. My uro is suggesting i try it.(said it just might work for me and it is worth a temporary try ) Are you still having succuss?

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  • Teri
    replied
    Bonnie~I have the interstim and as far as the device working, I have no complaints. I am at least 50% improved as far as frequency and urgency goes. BUT, it took me 6 or 7 adjustments to get there. Just when I was ready to tell them to take the *$^% thing out, it started working [img]rolleyes.gif[/img] This one is my second surgery. The first one worked immediately and helped 100% but it quit after 1 1/2 years. So, since the 1st one quit for no apparent reason, we have every reason to believe that this one will too, kinda scarey <img src="graemlins/eek.gif" border="0" alt="[eek]" />

    NEITHER of my surgeries helped for pain, infact, after the second one I've been left with even more pain and more doctoring.

    Would I have done it again? Knowing me and the hard head I am I'd have to say probably because there would have always been that little voice inside of me wondering......If this one quits will I have it redone??????? NO! I can not take another round of this, emotionally OR physically.

    tons of hugs~

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  • BonnieK
    replied
    Are you guys still doing great with your interstim? I have a different one than the Medtronics one (that one didn't work for me). Apparently, no one has heard of the one I have (it's called "Genesis Model 3850" by ANS). So far, no help but it's only been since July 11th. I'm really interested in how you are doing now.
    I pray it's really good.
    Thanks!
    BonnieK <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

    Leave a comment:


  • Teri
    replied
    Alot of my friends are experiencing the same thing....where they are sure that the lead is in too deep. I am praying for them and for ALL who are having a problem that this will be the answer you need <img src="graemlins/blink.gif" border="0" alt="[blink]" /> . In the right hands and with the right dr, this is such a fantastic tool. It will be so great when the bugs get worked out and the revisions are no longer necessary <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

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  • mary a
    replied
    I have an appointment in a few days, my doc will revise my interstim with a new machine (to see how the nerves of my bladder are receiving the impulses) and if it is not in the right spot (the lead) I will need a second surgery. The rep. and my doc thinks that it may be too deep and that it should be moved a little bit, anyway it will be a new surgery, general anesthesia, etc ...
    I hope they can find the right placement soon, so I can feel as a normal person!

    Leave a comment:


  • Nina37865
    replied
    Mary, I dont limit my fluid intake, I just make sure I empty my bladder before I go to bed. And when I pee in the morning I am shocked at how much I can hold now, Its wonderful not to have the horrible urgency all the time, I am still bad in flares but in between, I am much better! Hope you find the right treatment that helps you too! Hugs, Nina <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

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  • mary a
    replied
    I hope I will get good results with mine someday!!!!!!!, How much do you drink at night to be able to hold for so long?

    Leave a comment:


  • Nina37865
    replied
    Thanks guys! It REALLY feels great to sleep 6 or 7 hours at a time! No-one but you guys would understand how significant that is! Hugs! Nina [img]biggrin.gif[/img]

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  • Teri
    replied
    [img]biggrin.gif[/img] Nina [img]biggrin.gif[/img] I am sooooooooooo glad for YOU!!!!!! Your dr is right....this can be a great tool in IC if the patient is selected carefully!

    Praying for continued sucess <img src="graemlins/jester.gif" border="0" alt="[jester]" />

    Leave a comment:


  • chantal nicole
    replied
    Incredible feeling ins't it. i had mine in almost 1 month ago and i'm doing well. Like you, i also have some issues with certain chairs, tight clothes (like jeans) and I can't lay on my back yet because my butt hurts me. My other butt cheek is also sore from always being on that side. I've put on a swim suit and i feel ok even though one butt cheek seems to hang lower, has a flat part to it and I get a signigicant dent when I sit, but it's all worth it. Since my implant, I've only had one evening and night of major pain and frequency but that's it. I think I messed up my diet that day. I agree with you with the pain not coming so often. Yesterday I went to a movie 2hr15min and I had to pee half way through. It was a good movie and i didn't want to go. I was having a little pain by the end of the movie but the urgency wasn't nearly as bad. When I went, it seemed to go on forever and i was amazed at the fact that although it was a long one, I had a lot of pee in there, not just a long one because it was coming out one drop at a time like before the interstim. about 60% of the time i don't get up to pee at night and the rest only once. Anyway, I can understand your joy and i'm glad you are doing well. I fully agree with you that patients need to be screened for it. I'm glad i had a trial to know if this would work. It's not open-heart surgery or anything but for me it was significant, I had a lot of pain for 2 weeks and that first week was hell.

    Leave a comment:


  • Nina37865
    started a topic Its working!!!!!

    Its working!!!!!

    OK guys, at first I was leary to post since I was sure that as soon as I did, my symptoms would worsen. But, here goes,......................... I had mine done on April 27th of this year and it has been almost 2 months. The pain on the site is still there if I bump it, or some chairs that have the wrap around arms cause pain. I havent been brave enough to wear tight clothes cause they rub it too. But with that said, I can finally sleep all night long! When I first started noticing this,I was on the potty first thing in the morning and I was amazed at how much urine my bladder can hold now! It has been a miracle. I do still have pain, burning etc, on occasion, but you know, It hasnt been as bad or as often, maybe since I am not peeing as much?
    All I know is, I am glad I had it done , and I wanted others to know that it CAN work. My doctor stated to me once that if you select the patients carefully, you have a higher success rate. I do NOT agree with the docs who are recomending it to patients who were just diagnosed. There are many treatments to try first,as this is a MAJOR
    surgery! Hugs to all! ICNNINA
    <img src="graemlins/baby.gif" border="0" alt="[baby]" /> ( I just love this one!!!!!)
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