Still having trouble deciding

[tlacey]

:help: They've scheduled the test Interstim for Dec. 1, but I still haven't decided. My husband is sure this is going to work and I'm not so sure. I don't think I could handle another let down. I'm having a pretty good day today, so I'm trying to get ahead of my wifely duties; laundry, dishes, cleaning). I've looked at the FDA's Maude site and have seen the reports; the majority of them are about staph infections. I don't want to let my husband or my uro down or for that matter myself. This could be it. :help:

[emilyrose197377]

I know your nervous . I wish you well on your surgery . I am also seeing an interstim specialist for a consult for surgery on Friday. You are in my thoughts and prayers.

[tlacey]

Emily Rose,

Thank you. I hope everything goes well for you also and I'll add you to my prayer list.

[patricia1]

Try not to set yourself up for disappointment. If you go into the trial looking for something to go wrong and little thing you will nit pick on. Try to be postive and think this will work for me. All you can do is try. Should something go wrong you will have to handle it. With this treatment there could be problems that come up and should you know in your mind what they could be I think you can handle it better.

I will keep positive thoughts that things are going to go soomthly and everything will work out fine....

[Dixiefireball]

I wish you lots of luck and I pray it works for you.
sending you hugs and prayers
Rhonda

[ibtracy]

:grouphug: Sending you a good luck hug and pray that this works for you. I agree about not setting your hopes up high and take it day by day.

My best advice is to research this and know that this isn't designed for relief from IC pain and know both sides of the Interstim. I didn't research it enough when I chose to have mine inserted and wish I would of done more before I had gotten mine. That's my advice to you. Alot of people have had wonderful success from the unit and others not so good luck. I was one of the unfortunate ones that had the post surgical infections that you read about and had to have it removed. But that doesn't mean it will happen to you and there are alot of people on here that will swear by their success stories. It's getting so that alot of people don't want to talk about their success or their non-successful stories because it upsets so many people.

I pray you have wonderful success with yours and that all goes well with the trial surgery and the implant surgery as well if you elect to have the permanent implant put in.

I hope I didn't offend anyone with my reply.... :confused:
~Tracy K.

[ICNDonna]

If you need more time to make a decision, you have every right to take that time. This is a huge step to take and you really need to go into it with adequate preparation.

Sending warm encouraging hugs,
Donna

[tigger_gal]

hi tlacey,
if you haven't decided yet, maybe because you are just not comfortable with the idea.. whay don't you wait until after the holidays, this way you can have time to think more about it, and do more research.. I researched and talked to patients for over a year.
I love my interstim, and would do it again.. but, from the time my doctor told me about it, to the time I decided it was 19 months... If you have any unsetteling thoughts bout going thru this, then cancel it...

What ever you choose to do know we are all here for your support...

[tlacey]

I would love to wait until the holidays are over. But, the insurance company that handles my disability from work is really pushing for me to return to work. They only approved the disability through to Nov. 23rd. The uro is trying to get them to extend it until after the surgeries. It sounds like they're going to but, I don't know for how much longer. I never realized that I paid for this disability insurance and that they could still deny my claim.

[patricia1]

This is something I have never understood. You have doctors and stuff saying you are disabled, cant work, but then you have some person who is not a doctor choosing and dec. when you need to come back to work. Makes no sense. It took me almost 2 1/2 yrs to get my SSD. You look fine on the outside and people just dont understand.

I would suggest should you have any apprehnsion what so ever about this you might need more time. The best thing you can do for youself and your IC is to go into with the full mind and body that this is absoult. what you want to try. If you go into half-hearted it might not work well. I was told when I got my first one the mind of the patient is what is most important. He had some that were not sure and therefore, I dont know if it actually did not work for them or their mind did not want to let it, it did not work out for them. Not sure if I am making myself clear. This procedure should not be taken lightly. If you have any misgivings take your time. Dont let them push you into this. Fight them for your disability, but do not let them force you into something you might not quite be ready for. It will be there down the line....I wish you well.

[Imustpee]

I wish you all the luck in the world... :kiss: ....I to was in the same position 6 weeks ago. I have tried everything but interstim...I got the DVD showing all the happy happy smiling people , I read the booklet showing all the happy happy smiling people. I talked to 3 uros and called Medtronics twice..I read everything I could find here and other sites..I just never felt "Right" about it...I always felt I was being forced to do it...I was also told I would not receive any referals for bladder removal drs unless I did try it. I refused that treatment and went out on my own to find a removal dr at UCLA...I will have surgery Dec 23rd... :woohoo:

[patricia1]

Imustpee this is really not funny (really its not) but with all the trouble I have had the last couple of years with mine, reading that you watch the DVD with all the "happy smiling people", the phaphlet with "happy smiling people". I seriously have not smiled about mine in years. I wish you luck with your bladder removal. I know you fought so hard for it you deserve it.

[Imustpee]

Patrica...that's one of the main things that made me not want interstim...the happy happy smiling people were phoney models....not real people like us...I didn't believe any of it for even a minute. Can you have yours removed? What about removal? Is that an option for you?

[Imustpee]

When the uro ( The one that said he doesn't think I have I.C. but a "Voiding Dysfunction"...Never mind that I had 7 other uros say I have I.C. as far back as 1976....AND he said "Lesa, you seem depressed...I think you need to talk to someone".... :loco: ...Did I mention I never went back to that uro and he was the one that wanted to do interstim...) He did a pelvic exam and when he touched my bladder I went off the table because it hurt so bad..I asked him " Well doc, what does that tell you"? ...and he said " That because you have pain you are a PRIME candidate for interstim" I knew that wasn't true, but he was wanting me to schedule the surgery right away....I asked him" What happens to the temp interstim wires that will be hanging from my butt if it doesn't work for me"? He said " No problem you just come in the office and I will pull them right out...takes about 5 seconds"...

[sweetpea2555]

Before I got my interstim, I went to a Medtronic web site and requested information to see if interstim was right for me, they sent me a video and some papers that were very helpful. It's your body and don't let anyone push you to do something you don't want to do. It may help you then again it may not. I'll pray for you. Keep doing research and asking questions and do it only if you are ready and if you want to try it.
Imustpee-all I can say is Quack Quack!! Glad to hear you got away from that doctor!!

[patricia1]

Imustpee. I am sure I can have it removed. I have had 2 the first in 2001 and the revision in May. I did have to find another doctor to do the revision, because the doc who did the original surgery told me my problems were normal. So he refused to help me. This I believe was due to the fact I had lost my health insurance. The charity hospital we have in Louisiana finally got a IC specialist doc and was expereienced in the Interstim. That in itself took 8 months. This is a teaching hospital and I was their first Interstim surgery done there ever. Not sure if that is good or not. But my case had to go before the board of directors there just to be approved. I opted for the revision in May wanting to do the less invasive thing to my body. HAH. They had to remove the old one, remove the old wires, reimplant in different part of the body and reattach the new wires. This surgery was by far the worse I have ever endure. Something I was not expecting. I have now found out that with my new one out of 4 wires only 2 work. The ones implanted in the deepest. Right now I am just tired of dealing with it. The last 2 1/2 3 yrs have been a total pain and I am just tired. Tired that the 2nd one is no better than the first.

But I am postive that my new doc would remove it if I asked him to he is great and I believe was god send to me.