Thinkingn of insterm need sucess and failure stories

[auntiedeb]

Hi, nothing is working for me, not the meds. The uro and I talked today about the insterm. I told him to set up the insterim surgery. I need to hear sucess and fialure stories. He gave me some numbers to call and his patinets have been very happy with them excpet for one lady and she was elderly. He said my bladder is constanlty playing tug of war and spamsing. He said elerdly lady has different neverves than us younger people. Please pm me and post to me so I know.

How did it work you? Are you happy with the insterim? Can you sleep through the night without getting up to go pee?\

Going to do alot of reserach on this. Please I need some help. Thanks in advance.

[SheriG]

As I told you, I know nothing about the interstim and how it works. I know how upset you are, and wish I could help. Best wishes as you sort out the info. I will pray for you hun...Call me, or pm if you want to...I am here...Love Ya, Sheri grouphug

[whitebuffalo]

auntiedebbie,
hello there...I have had IC for sometime now..I also lived life with it and meds and lived life with interstim. Far too many reprogrammings and far too many surgeries to move the interstim from one side to the other. It never changed how my IC was and actually I was in more pain and up more to peeeeeeeeeeeeee. It is not for pain control and I hope that others have told you that.
I no longer have the interstim but suffer the consequences of it forever now. I would say just research it thoroughly on the boards here and beyond the boards..you can contact the FDA..you can log onto research from Stanford University and other large Universities for information on it and do as you are already doing..Keep Talking To Those Whom Have Had or Do Have It. In the end only you can make the decision but at least you will be able to say to yourself if something goes wrong that you researched it to the fullest of your ability.
Take care,
whitebuffalo hi

[ICNJess]

Hey Deb,

Well you already know how I feel about my Interstim. It's the best thing I've ever done for my IC, and I'd shout it from the roof tops if I wasn't afraid of heights. lmao

Anyway, I'm glad you are doing your research as it is not for everyone. My spasms are gone, and I am glad of that. My IC doesn't irritate me at night, but I do take Elavil still (for fibro and it still helps with IC).

If you have any questions, you know how to reach me! :D

Hugs and love,
Jess grouphug kissing

[auntiedeb]

Jess I sent you a pm. I know it is up to me have this done and the uro thinks it will help me greatly. we have trieds med to no avail. thanks for the quick reponses.

[SheriG]

Hi Deb... grouphug This really has nothing to do with interstim itself, but as I was reading your responses here, I got to thinking about when I was considering DMSO. So many people said it was horrible, and they would never do it again, a few said it wasn't that bad...I was scared and confused, but because my symptoms were so bad, I decided to try it and it did help. I guess what I am saying is that asking others about their experiences is good, but cannot be the only thing you consider when you make a decision...You know I am here and will stand behind you whatever you decide to do! grouphug kissing hi

[ICNJess]

I agree with Sheri, I didn't choose the surgery on anyone's opinion. I had to do it because I wanted to feel better. And it worked. So go with your gut! :)

[tigger_gal]

hi Deb
I posted to you on your uro post :) pm me or email me if you need info :)
Brat

[radstudent]

Debbie, I posted on your other post. Interstim has really changed my life. It realy helped the frequency and urgency. When my first one quit working because the lead had moved, I fought my doctor to get him to do a revision. I am so glad that I did because now I have relief again. I just had the new one put in on Dec 2 and I am still very sore. I cannot sit up straight at all. I have to mostly lay down. If I had it to do all over again I wouldn't change a thing. grouphug

[auntiedeb]

Thanks for your rrepsonses. I am praying. I am doing alot of reserach. I know this has to be my decesion alone. I want to feel better.

[tigger_gal]

Louise,
thats great :) I am so glad that you got a new one :) that works... I would do this all again too.. just having the urgency and frequuency cur in half has made life easier for me :)
sorry you are still in pain, sending you hugs :)
Brat

[auntiedeb]

Thankyou all for your support.

I have some questions for you all that have the insterim now since my brain is working lol.


Has it made your life better?

Has it cut down on the urgency and frequency?

Has it cut down on the utis?


Can I go to the airport and fly in a plane?

Can I still work once everything is implanted? The dr said yes.

How long did it take you to recover?

was your family and friends supportive?

[auntiedeb]

Thankyou all for your support.

I have some questions for you all that have the insterim now since my brain is working lol.


Has it made your life better?

Has it cut down on the urgency and frequency?

Has it cut down on the utis?


Can I go to the airport and fly in a plane?

Can I still work once everything is implanted? The dr said yes.

How long did it take you to recover?

was your family and friends supportive?

[tigger_gal]

Auntie debbie
Has it made your life better?
yes it has it has cut my frequency in half, and the urgency is more controlled. I can go places more at ease mentally, because I don't have to pee when I get 2 blocks form home.

Has it cut down on the urgency and frequency?
I went from 25 a day and up every hour at night to 10 to 12 a day

Has it cut down on the utis?
interstim will not help with utis. This one I cannot answer.

Can I go to the airport and fly in a plane?
sure :) you will recieve a medical card you tell the people you have a metwl device in you body, no need to say where, and you cannot go thru the security gates, have your card available.

Can I still work once everything is implanted? The dr said yes.
I am on ssd, but there are others with the interstim that do work.

How long did it take you to recover?
I had a two week stage implant about 3 days later I was feeling good but stll sat on my hip tail bone area hurt.. after the implant it took a good 2 week because of the insison on my cheek :)

was your family and friends supportive?
My Mom was she has IC, and my husband was supportive of my decsion, he just wanted me to be able to sleep and not pee so much.


He gets funny once in a while about it and when we talk to some friends he says I put lojack in her hahaha... (lojack is the anti car theft device)

Brat

[Teri]

Cindy, ask Dr Peters about the airport thing. He told me that with the ones they are using, you CAN go thru the metal dectors because there isn't any metal in them now. He did give me a letter incase I set off the detector but I never did.

deb~you already know my story with the implant. I don't think it can be stressed enough, make sure you try ALL other types of treatment first. This is a very serious procedure and you can end up with permanent damage that leaves you worse off than when you started.

I know that you want to hear both the positive and the negative but most people don't really want to hear the negative. Most of us feel like we've been pushed from this site and now we PM and I don't think that's fair to the girl who is using this surgery as a first coarse of treatment.

When I had my original one in Oct of 99 I was so desperate that I would have tried anything. Now, I am in a different frame of mind and I can stop a second and think, "this is my spine I'm dealing with." I think that the surgery still has a long way to go to prove itself as safe.

tons of hugs~

[auntiedeb]

Thankyou both. I know your story Teri, it is not something that I am jumping into. I have tried medications and my ic is progessing and I am still doing alot of reserach. surgery is a month a way. I appreciate what you had offer. I appreicaite the both of you. I know that I have support from the boards and that is my decesion only. the dr thinks it will help me and so do alot of others. I know there can be consquences and thisis something I have been thinking of for a long time. He upped the nerutoin the last time I was there and the imprane. He didn't want to up it any more cause I wouldn't be able to function and it would make me sleepy. I have written a few pms and haven't heard from anyone yet. I thought I would try the boards. Thanks again.

cindy- thanks so much for your fast answer.

[ICNJess]

Has it made your life better? Yes, it has. I don't pee 40 times a day anymore! And I don't get up that much at night. :)

Has it cut down on the urgency and frequency? Urgency and frequency are cut down greatly.

Has it cut down on the utis? Never had 'em.


Can I go to the airport and fly in a plane? I would think so.

Can I still work once everything is implanted? The dr said yes. You bet!

How long did it take you to recover? Ummm for the trial, I didn't do much of anything for the 2-3 weeks. After the implant the doc said I could go back to normal activity in one week.

was your family and friends supportive? Yep, my parents came to the surgery with me, and my hubby came home early from college for the trial to be with me and left work early to be with me for the implant. And I had all the support here. :)

[auntiedeb]

Thanks for the fast replies.

[Tami Stambaugh]

Debbie,

I to am scheduled for my trail inner-stem on March 1. I am going to be researhing as well. I would love to know what information you find out and I will tell you mine. I have some numbers of patients who have done it with great success, I just haven't called them yet. Feel Free to e-mail me anytime with any news you find out. My address is tamil38@bellsouth.net mailto:tamil38@bellsouth.nettamil38@bellsouth.net</a> hope to hear from you soon with great news!!!

hi kissing

[ICNJess]

Good luck, Tami! I hope everything turns out great and that it works well for you. :D

Hugs and love,
Jess

[tigger_gal]

Hi Tami,
I hope you have great success with your interstim. I love mine its the best thing I did... now to get rid of the pain...
Brat

[ICNJess]

I wonder why some docs say it IS for pain? That's just wrong.

[peiti]

Dear Debbie,
I hope my answer can help you.


Has it made your life better?
-- I think so. I don't have to take a lot of medications as I did before having interstim.

Has it cut down on the urgency and frequency?
-- It has cut down some frequency. I used to pee around 16-20 times a day and now around 10-12 times a day. I didn't have urgency.

Has it cut down on the utis?
-- I have had ic for 9 years and never had uti in the past 9 years.

Can I go to the airport and fly in a plane?
-- I guess so. But your probably need to wait till your incision is healed so you won't have a lot of trouble getting up from the small seat.

Can I still work once everything is implanted?
-- Yes. I work 3-4 days a week.

How long did it take you to recover?
My trial only last about a week. It took me about 6 weeks to feel no more pain at my implanted site. The day after my permenant implant, I was able to walk around in my neighborhood slowly for 30 minutes. The pain at my incision site was not severe when I sit or walk. However, I did have some problems lying on the bed. I had terrible pain when turning around trying to sleep on my right or left side.

was your family and friends supportive?
-- Yes, they are.

[auntiedeb]

Thankyou for your replies. so sorry it took me so long to get back to you. been real sick with a sore throat and the flu. Flu knocked me down. Thanks for your prayers and caring and support.

[Mimi-in-Chicagoland]

My story is already on the board. After my revision I can go through metal detectors without setting anything off--or a strip search. eek I've gone from 10-15 night bathroom visits to 1 or 2...3 or 4 if I'm in a flare...which are a lot more rare. I don't have painful bladder spasms anymore. The spasms from the bladder being full and then after its empty...the not being in pain is just a nice present. PM me if you have any other questions.

[auntiedeb]

Thankyou all. I canceled surgery for now. some personal reasons. I support anyone who is going for this. Let me know how it goes for you Tami.

[ICNJess]

Hi Deb,

You need to do what's best for you. :) If you happen to need in the future, we'll support you 100%. If not, that's great too, and we'll still support you 100%. Just do what you need to do. :)


Hugs and love,
Jess

[littlebear]

Hi Debbie and Tami, Debbie you are doing such a great job of researching, weighing the pros and cons, and listening to what your heart tells you. You really are a good model for us all! Tami, best of luck with your trial and your implant. Keep us posted and let us know how you're doing if you get a chance. Best wishes to you both, little bear