Happy with Interstim.

[annette1639]

Hi I know how difficult it is for some of you to deal with your interstim. I went for my first adjustment this week. I came home in pain. I would never want to return to my life before my implant and for those whos are unsucessful there are many out there who this has worked miracles and don't post.
I am not saying its a answer for everyone, but for many of us it is. I thank god and technology for mine every day.
Take Care

[DebbieB]

(((((((((((((((((((((Annette))))))))))))))))

I am just so happy that you having great results with the InterStim!!
How are managing your pain , do you take some meds for it???

I thank god everyday for my InterStim and I would not know where I would be without it to...

This procedure is wonderful for some and others , it does not help, we are all so different in any kind of treatments for IC and we all react different to the InterStim... confused.gif

Keep in touch my friend!!!!

Hugs: Debbie biggrin.gif

[lucia]

I'm very happy for you!!!!!!, I really hope that my doc and the representative will find the right stimulation for me. I won't quit trying!, It is a major and expensive surgery. I think that a lot of people get frustrated very soon, and are thinking to have it removed, NOT ME!
I have to travel in airplane to visit my doc., but anyway, I will still try and PRAY that this will help me!.

[EW1]

Annette1639!

Thank you so much for your post. It's good to hear that Interstim is working for you. My doctor is looking into the procedure for me, and I'll be speaking with him about it next week. After trying various pills and DMSO, I'm ready to move on to the Interstim trial. I hope it will work for me, as it has for you. I wish you further success with the implant.

smile.gif Erica

[Bee]

Hi all, haven't been here in awhile....missed yall!!! I am in the process of getting a temporary interstim implanted for my IC sypmtoms. This comes after trying just about every med and taking too much pain medication. I want a life without pills and pain...so I am going to try the interstim after many months of debating. I am scared, weary, doubtful, but hopeful. I have read all the negative and positive responses from all of you. This seems to be my last resort, but it is worth a try. It's a 50/50 chance. If I have good rresults from the temp, then the permanant one will be implanted. Is it painful having it implanted? Did yall have to stay in the hospital a night or two? Can you feel or see it under your skin? Do you get use to it after awhile? For those who have had good results, does it stop the urgency and frequency? Do you have to take anymore meds now? I know these are alot of questions, but I really need answers before I do this....so any response would be appreciated!! Thankyou all so much....although I would never wish this disease upon everyone, it's nice to know there are others out there who understand what I am going through. Take care!!

[DebbieB]

Hi Bee:

Welcome to the ICNetwork Nerve Stimulation Success Stories Bee!!!!!

As I said above I have wonderful results with my InterStim Implant!!
As of every procedures , yes there is alot of negative and positive responses to it, but we are so different in this procedure as to one's self how we will react to this procedure...

There are lots of us out there with the InterStim Implant doing just wonderful and living a normal life to...

I sended you a private message to tell you about my story...
If you do not get it, please let me know ok Bee!!!

I wish you well on what you decide to do Bee!!

Hugs: Debbie

[Amity1]

Bee...Please help me understand. In your post you said you "came home in pain". Did you mean that it helped the frequency and not the pain or did you mean that it was painful when you came home and then the pain went away. My doctor suggested interstim but my main complaint is pain. So I am curious how it works for pain.
Hugs to you.

[DebbieB]

Hi Marjorie:

The InterStim Implant does not help you with your pain, this is misleading information if you doctor told you it's for pain!!!
The InterStim Implant is only for frequency and urgency and retention!!!
The web site is www.interstim.com (http://www.interstim.com)
Please read all you can on this procedure and ask if your doctor has done lots of these procedure and how much experience he has ok..

I am one who was helped with the pain and others to, but many that have the InterStim Implant still have pain and take meds for it....

They is another procedure that is being done by the same company that made the InterStim , is coming out with a device for pain,you can read this on the web site www.Medtronic.com (http://www.Medtronic.com)

I hope this has answered your questions Marjorie!!

~~~Debbie~~~~

[sheryl]

Chandra, Hope you get this message I try to send you a priv. message back ,you are not taking them? I`m so happy with my interstim. It has given me aot of relief with frequency and some help with pain.I`ve had the instim for about 2 years. But had a revision done the lead had move away from the nerve.That is rare to happen.I hope & pray you get help.I`m from Michigan and have a great uro. best to you,Sheryl

[DebbieB]

Hi Chandra,
I can not send you a private message either, so I can not answer your questions!!!

If you would like to send me your e-mail address by private message like you did with you message, then I will be happy to e-mail you about the InterStim Implant ok!!!!

~~~Debbie~~~~

[annette1639]

Hi Its me agian. This has been a painful weekend but I am doing better tonight. Chandra I got your message and I would encourage you to try the trial of the interstim. You have to pass the trial and make sure its going to work before they impant anything.
I havn't tried acupuncture but I know relaxation exercises and my heating pad are of great benefit to me.
I also live for my nightly soak in the tub. If your bladder capacity is shrinking you may still have to have hydrodistensions to increase your capacity please ask your doc about that.
I know that my interstim helps my symptoms but its not a cure for the disease itself.
Take care all. cool.gif

[dedeash]

Bee
what is a temporary interstim? do you mean you are having the trial?

Dede

[SisPain]

ANyone....everyone....someone....please help me make up my mind!! I have been to the UAB urologist in B'ham, AL, and he wants to do the intristim....but I am afraid! I am scared out of my mind to go through with this! I was suppose to have it done in January....and have just been ignoring this doctor and his advice. I dont know if I am just a "chicken" or a part of me thinks this procedure is for incontinence....I can hold mine in some....that dont seem to be my problem. Is this just for those who cant control their bladder? Or is it for IC too. He said it "might" help IC too, but he couldnt tell me if I had IC. I dont want to be a pincushion or guinea pig!! Does this hurt? HOw long? Did you stay in the hospital? Was it outpatient? Is it noticable? Please tell me what it does. I am so scared to have anything done to any nerves in my back!! I hate back pain!! mad.gif eek.gif
Please email me at: bert334@hotmail.com reply soon. Thanks ya'll!
Roberta wink.gif

[ICman]

Roberta,
Perhaps I have a high tolerance for stuff like srgery, but I had the interstim put in and I am about to have surgery again to move the lead due to poor placement the first time. Like you no one is really sure if I have IC as I have frequency but no other symptoms. Additionly, I have some symtoms that I have never heard other males express as part of IC (my doctor seems to ignore me when I mention this). I don't think you would be a guinea pig because, even though my results have not been great, some people do have great results. The system is proven and the easiest form of the trial is really not that invasive. So I would think that if you feel anything like me then you owe it to yourself to give the trail a shot. The trail (not the staged trail) is outpatient and takes about and hour or so. If you have the full implant done you usually will have to stay in the hospital overnight if there are no complications. Perhaps my surgeon was better then most, but I had a little pain and mostly just soreness. Within two weeks I was back to normal, but my activites (such as skiing) were limited for up to a month. I can be visable depending on your body type. Skinny people such as myself do have a small bump, but I would consider that a small price to pay for getting my life back under control. It is not noticable with clothes on. As for nerves there is nothing that does any long term damage by trying the system. Most of all you should ask these questions to your Dr. and if you need reassurance get a second opinion. Last you should only do it once you are convinced in your mind that it worth a try.

[SisPain]

Still thinking about the Interstim procedure....I am a big chicken on this one!!! I have had lots of surgeries....but am scared to death to do this one!! I'm thinking about trying the trial though....insurance has approved already....was suppose to do it January, but backed out. I will make a decision soon. I am going to a new uro next month. I will decide after that visit. Wish me luck and that I'll make the right decision.

Thanks!! rolleyes.gif
Bert

[annette1639]

Hi for anyone who is pulling their hair out wondering if they should try the interstim. I would encourage the trial it has made a incredible impact in my life. I do still have pain but I am able to sleep through the night and only go occasionally during the day and that is worth all the worrying in the world. There is nothing permanent about this. If its not right for you then you can reverse it. I will never regret mine.
Annette

[Teri]

Annette~which trial did you have done before your final surgery? Did you have the old type trial or did you have the surgical trial?

I have had both and the surgical trial IS surgery.

This is a huge decision to make now. When I had the first trial in 1999 you were awake. Given a couple shots of lidocaine and your sacral nerve was poked at until the 'spot' was hit. For some of the girls that took 4 horrific hours. I was lucky and for me it was only 40 minutes. I had taken a couple of ativan before I went so I was good and relaxed.....the STAGED trial, which has been FDA approved now IS SURGERY!!!!!!!!!!!!!!!!

For people considering this.....get ALL the information from your uro's. Ask exactly what he/she plans on doing. Ask how many incisions you are going to have. Ask how long these incisions are going to be? Remember, if the test fails, you will be stuck with these scars, they won't disappear! Ask about the availability of getting ahold of the dr or rep day to day if need be. I by no means consider myself a sissy but the staged trial damn near did me in.

My trial was a failure but since everything was already in there from my original surgery we decided to give it a try....took 5 months and I am finally having good results....would I do it again??????????????????

[lucia]

for me the trial and surgery were not that bad, I have not found the right stimulation for mine. I wont stop trying!, but I suggest that you should try the trial, is not that bad (at least for me). BUT MAKE SURE THAT YOUR URO IS REALLY REALLY THE BEST AT THIS. SEARCH FOR THE ONE THAT HAS DONE A LOT OF PROCEDURES WITH GOOD OUTCOMES!

[Teri]

lucia~WHICH trial did you have done?????????????
There is SUCH a difference. When people post it would help soooooooooooooooooo much if they would be specific and say "I had the original trial done" or "I had the staged trial done". There is SUCH a difference and it's so important that those considering this know what they are in for.

[lucia]

TERI:
YOU ARE RIGHT, I FORGOT TO TELL WICH ONE I HAD. I HAD THE NORMAL ONE (IN MY DOCTOR'S OFFICE), IT TOOK MORE OR LESS 30 TO 45 MIN., THE FIRST TIME THE WIRES MOVED (I HAD 2 WIRES LEFT THERE, ONE IN THE LEFT SIDE AND ONE IN THE RIGHT SIDE). IN THE SECOND TRIAL, THE SAME AS THE FIRST ONE, I HAD JUST ONE WIRE. AND IT HELPED WITH MY URGENCY.
Right NOW i'm waiting to find good results. I'll have an adjustment this week. I HOPE THIS ONE WORKS
My surgery was in october of last yr.

[annette1639]

Hi
I had the surgical trial done I don't think the other one is recomended any longer. The procedure is so new i think things are still evolving.
keep your chins up eek.gif

[lecuruk]

I just wanted to get some opinions on the Interstim. I am 25 years old and thinking of getting the implant. My frequency and urgency is controlling my life. I know that it may sound vain but I am extremly worried what the scars are going to look like and how my clothes is going to lay. After the surgery what was your recovery time. Do any of you have accidents at night, did this help?

I would appreciate all the feedback you can give. My doctor also mention doing the Botox injections, but that is 10K and only lasts for 6-9 months. If only that would last longer or insurance would cover it!

Thanks in advance!

[mlzippy7]

Hello and welcome!
I am sorry IC is controlling your life. I can relate!
I have had two Interstims surgeries.
Yes you will have a scar but pending on your surgeon how big of a scar.
The recovery time is different for everyone. You have to take the first couple weeks really easy so the implant does not move.
If you have more questions feel free to ask!!
It is a major hard decision to do this.
Good Luck!!



I just wanted to get some opinions on the Interstim. I am 25 years old and thinking of getting the implant. My frequency and urgency is controlling my life. I know that it may sound vain but I am extremly worried what the scars are going to look like and how my clothes is going to lay. After the surgery what was your recovery time. Do any of you have accidents at night, did this help?

I would appreciate all the feedback you can give. My doctor also mention doing the Botox injections, but that is 10K and only lasts for 6-9 months. If only that would last longer or insurance would cover it!

Thanks in advance!