PTNS - Starts 22 June 2011

[passion4life]

My doctor has suggested PTNS. This is scheduled to start on 22 June 2011. I just finished 6 rescue instillations and can see some improvement. After describing my symptoms, the dr. suggested we start a once week for 12 weeks PTNS. He also gave me a brochure!

Not quite sure if it will work but I am still willing to try all that is suggested.

Thanks to all the members. Your love, encouragement, and warmth continues to provide strength for the journey.

Praying for the cure :pray::pray::pray:

[KathiB]

I just wanted to tell you - good luck! I hope it's helpful. Keep us posted.

[ICNDonna]

I hope it works for you.

:grouphug:
Donna

[adm]

I have had the first two of the twleve nerve stimulations; don't know yet, but my fingers are crossed. Good luck!

[Linda May]

Hope all works out for you.:grouphug:

[adm]

Thanks, Linda!

[passion4life]

Unfortunately, my health insurance (FED BC/BS) will not pay for PTNS. However, they are willing to pay for Interstim Therapy.


So tired.....


I am a recovering addict and PTNS is the most logical for my IC and my recover. I spoke with a BC/BS rep and was instructed on how to submit a pre-determination packet to obtain waiver. Uuugh!!!:headbang:

[QueenMellyBee]

Passion 4 Life......curious what happened in your situation here. My husband has Federal BCBS, and has asked me about switching from my regular BCBS (through my job) to his insurance, since my BCBS has the worst Rx coverage EVER! I swear everything I get prescribed is $50-180
But if you're saying that Fed BCBS doesn't cover PTNS, than I don't know that switching will be worth it to me on yet again another level.

Did yyou get a waiver afterall? Did you seek other treatment? I personaly would LOVE to be off my litany of meds, and do something else too. Interstim is not a route I want to go. Just curious what happened in your situation. Hope you share :)

[passion4life]

Hi QueenMellyBee :smile tee


I did not get a waiver. I did not have the energy to fight another battle. Instead I opted for the Interstim Therapy. Personally, I am grateful for the Interstim Therapy. It was not without some inconveniences but today I am much better than I was last year at the same time. The device has been turned up four times!!! But I do feel better. My meds and diet remain the same but my frequency/urgency has returned to a more normal state. My mornings are still better than my evenings but it is what it is....

I am able to work more and enjoy some semblance of a normal life.


Pray everything works for you!:pray:

[bamagirl]

Passion for life,
I have had and Interstim for 8 years now. I turned mine off after about 1 year because I just got irritated because I didn't think it was working. I went back to the doctor that put in my Interstim who is 3 hours away. She wanted me to give it another try. My problem now is that if I turn it up enough to get relief for my bladder the stimulator affects my bowels. I turned it back down for now. Did you have to go up on the stimulation slowly or did you just move it up a few notches and have no problems?

[Madi's Granny]

I've found that it is much easier to go up slowly. I tried going up several notches at a time and it cause me pain. I went back down to where I was and went up slowly and had very little if any pain. I don't think my sacral nerve like being hit with high stimulation at one time. I even turn one side up at a time. Usually give it 2 or 3 days between.

[passion4life]

I turned up the device; however, I still did not get the results I expected. I returned to the doctor, and thankfully, the company rep was in the office. He broadened my signal across the nerve bundle. Now the new program and the setting appears to give me better days. I still have IC therefore I have to watch my diet, relax as much as I can, and take the prescribed meds. But all in all I am much better today than I was a year ago this time. The company reps said that the company considers the device a success if there is a fifty percent reduction in symptoms. My symptoms have reduced by at least fifty percent.


I pray everything works out for you!:smile tee

[bamagirl]

I have one of the first Interstim's so I can't do as much as you can with the stimulator. I wish I had more choices but all I can do is go up or down.

[Madi's Granny]

I have an older interstim too. Mine was placed in 2007. I can only turn mine up, down, on or off. The reprogrammer at your doctor's office can do what passion4life's reprogrammer did to hers. My reprogrammer has done it to mine. I can hardly wait until I can have mine changed over to one of new ones. They have 4 programs you can try. My reprogrammer says that they are so much easier to program than these old ones are.

[bamagirl]

I have an older interstim too. Mine was placed in 2007. I can only turn mine up, down, on or off. The reprogrammer at your doctor's office can do what passion4life's reprogrammer did to hers. My reprogrammer has done it to mine. I can hardly wait until I can have mine changed over to one of new ones. They have 4 programs you can try. My reprogrammer says that they are so much easier to program than these old ones are.
I got mine in 2002. I have a new remote but not the ability to changed anything. I won't have the new capabilities until I get a new battery. The good thing about the new one's is that they are smaller and resemble a cell phone. I love the new remote but I just wish I could change from the 1st lead 1-4 electrodes and the 2nd lead1-4 electrodes. I have 2 leads just like you but I can't change from left lead to right lead or vs. Maybe I understood that part wrong.

[Madi's Granny]

You can't use both of your leads at the same time? I have stimulation on my left sacral nerve and right sacral nerve at the same time. My leads both have 4 electrodes on them. I have a total of 8 electrodes. But only 7 can be used. One doesn't fire right. My uro says stimulation on both sacral nerves at the same times usually gives better results. I can't change whick electrode is firing. My reprogrammer has to do that.

[bamagirl]

You can't use both of your leads at the same time? I have stimulation on my left sacral nerve and right sacral nerve at the same time. My leads both have 4 electrodes on them. I have a total of 8 electrodes. But only 7 can be used. One doesn't fire right. My uro says stimulation on both sacral nerves at the same times usually gives better results. I can't change whick electrode is firing. My reprogrammer has to do that.
That is how mine is right now but once they put in a new battery then we will have control over all of it. That will be nice. My doctor is 3 hours away. My battery is 10 years old. I had previously stated 8 somewhere on here but I had it turned off for 8 years. My battery could die any day now. I hope it does because I am ready to be able to have full control over the leads and electrodes.

[Madi's Granny]

I know what you mean about being ready for your battery to die. So am I. Mine willl be 5 years old in April. I think my reprogrammer is ready for it to die too. I didn't have to have a single reprogramming until November of 2010 and now that's all we seem to do. I think we're about to get it programmed. The right is up to 3.7 and that's pretty high and it's been on all the time since 2007 so we'll have to wait and see. The new ones look so much easier to use. My reprogrammer says they are easier to program too.

[bamagirl]

I know what you mean about being ready for your battery to die. So am I. Mine willl be 5 years old in April. I think my reprogrammer is ready for it to die too. I didn't have to have a single reprogramming until November of 2010 and now that's all we seem to do. I think we're about to get it programmed. The right is up to 3.7 and that's pretty high and it's been on all the time since 2007 so we'll have to wait and see. The new ones look so much easier to use. My reprogrammer says they are easier to program too.
I was told that the battery usually only lasts 5 to 7 years. Wow your's is up pretty high compared to mine. Mine is 1.8 (i think). I am having to get use to mine all over again though so I will probably go up more in time. The Interstim does cut down on my frequency and urgency. I still have to self cath about 1 or 2 times a day. Sorry it took me a while to get back to you. I went to my pain management doctor to get refills today. My daughter was out of school so she took me. I really don't like to drive being on my pain meds and the Interstim. I guess I am just weird like that. LOL!!!

[Madi's Granny]

I just went back to the reprogrammer this afternoon and he is concerned that my battery may soon go dead. For the first 3 1/2 years my settings were lower on the right 1.5, We have yet to figure out why all of a sudden this setting was way to low. The left one has always been around 2.2. The battery as of today is OK. He says the batteries last longer thd lower you have them set. Maybe I can get 1 more year from it since I had the right set so low for so long. I just hope it doesn't just die all of a sudden with not warning .

[bamagirl]

I just went back to the reprogrammer this afternoon and he is concerned that my battery may soon go dead. For the first 3 1/2 years my settings were lower on the right 1.5, We have yet to figure out why all of a sudden this setting was way to low. The left one has always been around 2.2. The battery as of today is OK. He says the batteries last longer thd lower you have them set. Maybe I can get 1 more year from it since I had the right set so low for so long. I just hope it doesn't just die all of a sudden with not warning .
It would be nice if our remote could tell us how much battery life is left on it. It is time for me to go to bed. I am fighting to keep my eyes open now. Hope you have a good night!!

[bjcov]

just a question because I have no idea about the interstem. Can you feel it? And if you do, what does it feel like?

[Madi's Granny]

Yes you can feel it. It feels to me like vibrations down there. You don't want it to hurt thought. If it hurts is is up too high. It really doesn't hurt if it is not too high for you.

[bamagirl]

Yes you can feel it. It feels to me like vibrations down there. You don't want it to hurt thought. If it hurts is is up too high. It really doesn't hurt if it is not too high for you.
Mine feels like a steady thumping in my lower butt and sometimes a pulling but I have never felt anything down there as far as Vjayjay. Do you think you should? The Dr.s PA told me I should feel it in my butt.

[Madi's Granny]

I feel mine in my rectum. I had it set to feel it in the Vjayjay once and it about drove my crazy. When I felt the stimulation in the Vjayjay it felt like I had alot of pressure and I felt like everything was being pulled down. We changed the stimulation back to be felt in the rectum and that pressure and being pulled down feeling left. I only like it when I feel it in the rectum. And we seem to be close to finding the right stimulation for me. Hope this all works until the battery gives out. But hopefully the reprogrammer will keep a watchful on the battery life so we can know before it gives completely out and get me scheduled to have it changed.