How many people are happy they had their surgery done?

[Teri]

How many people are glad that they have tried the interstim....even if months down the road it turned bad, are you still glad that you gave it your all? Were you well informed by your uro before the surgery was performed? Were you told that if your main symptom was pain that the device would take care of the pain? IF you worked with a medtronics rep, you you feel he gave his all with you to try to resolve problems?

We have been doing nothing but negative post and I KNOW that there are positives out there because I am one of them. PLEASE, give this some thought. I will see my uro on Tues and plan to take some of the negative articles to my uro and sure would like some positives to take with me too......

thankx to all <img src="graemlins/kissing.gif" border="0" alt="[kissing]" />

[codyryonwoodward]

Teri I am also very HAPPY with my Interstim. I had mine put in Sept 2001. I had a very good URO he never once mentioned this was for pain. Although my main problems were with urgency frequency and buring. I got a video from him, and all kinds of info before I even had the testing done. I also did lots of research and visted this site often to see what people had to say about it. Even though there was negative and postive response's I decided to go ahead with it. I had nothing to lose and everything to gain if it worked. I was going to the bathroom 42 x a day and know I go around 10 to 12 times.
I believe having a good uro who knows what he is doing and doing research on your own is very beneficial to people. I had tried everything from diet to medicine and nothing worked. So yes I am very happy.

Also my local newspaper is doing a article on the interstim. They called to get my advise on it. They all so talked to my Uro his aide and one other patient. So I am very glad to see this in the news. The girl that did the interview had never heard of IC until now. So hopefully this will help others.

Thanks Patricia [img]biggrin.gif[/img] [img]biggrin.gif[/img] <img src="graemlins/toilet.gif" border="0" alt="[toilet]" /> <img src="graemlins/toilet.gif" border="0" alt="[toilet]" />

[deborah b.]

Patrtica can you post the article on the message board? I would really like to see it. If you can't put on the message board could you send me a copy of it or e-mail it to me. [email protected] Thanks!!

[Maureen]

The answer to your question Teri is that I am glad I had the interstim implanted. My bladder used to hold 35-50 mls. It now holds 125-150 mls. It has not eliminated the pain but it does help me with the bladder pain. However, it was replaced with minor back and implant site pains. Surgery is surgery and their are risks every time you consent to it. I know all to well because I developed IC after an surgery error when the doctor sewed through my bladder. I am glad that I do not live in the washroom any longer. It has improved my quality of life.

[DebbieB]

<img src="graemlins/hi.gif" border="0" alt="[hi]" /> Teri..

Long time don't chat and e-mail each other..
Yes, I would agree there has been awful lot of negative posting on the boards lately..
They are lots of ones with great success around but I know some of them just have gone on with their lives and never post back !!
I am doing wonderful with my Implant and it has been over three years since my surgery..and also over a year since the second surgery to..
The last adjustment has been working so well that when I was back for my six month check up he did not have to do an adjustment..

Yes as in every kind of procedure we are all so different in how our body will handle the Implant..
Also from day one before I did the InterStim I was told it was not for pain at all..
I have had no pain since my surgery either!!
I would have to say it all depends on the doctor that is doing it and how much experience in doing this procedure is the biggest thing of it all !!!

I miss everyone on the boards and thought I would drop over to share my good news of having the InterStim..

Yes Chady , our Ontario Health Insurance only allow up to 12 people a year to do this procedure and you are put on a waiting list depending on how bad your case is to and also we "only have one doctor in Ontario" doing this procedure as well, so he is well trained and has lots of experience...

I am very happy with my InterStim and it has been the best thing ever to happen to me to..
I could not work and I am back working part time and I have my life back to..

As I have told people I would never have known unless I had try it , what did I have to lose at the time...but am I ever glad I did it now... [img]biggrin.gif[/img]

<img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" /> DebbieB

[positive-tude]

My story is not a success but wanted to say - I have given the interstim a 100% chance to work for me - I was not mis-informed - I love my uro and my rep
I did have pain but mostly just frequency and urgency. Now after 2 1/2 years and 6 revision surgeries - I have to have it removed.
Like I said my case is not a success but I have remain as positive as I can through it all. I do not regret giving the interstim a try - nor to I regret the 6 revisions to try to get it positioned right.
The interstim is just not for everyone - unfortunatly it is not really something you know until you try it. So... I just wanted to let you know that though mine was not a wonder worker - it help for about 3 months after the intial implant and I will take those 3 months and remember them instead on concentrating the bad. I am convinced ( in my case ) that it is because my weight fluxuates so bad that they just cannot get it to stay positioned. That is just my opionion and my Uro agrees with me. So like I said it is just not for everyone.

I wish everyone luck in finding a happy medium with IC, Fibro, IBS and all the other related conditions that we fight on a daily basis.
My Motto now is - HAVE FAITH !

<img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[mary a]

Positive Tube:
I'm on a diet, and I will have a revision in 2 weeks. Do you think that if I continue to loose weight after the surgery my lead can move?
Where from Texas are you from? I will have my surgery in Houston

[positive-tude]

Mary,
It is something that you should maybe bring up with you Dr. - I do not know proof positive that my weight fluxuation is what made the leads move - but it is the only thing that we can figure at this point. My weight fluxuates between 10-15 lbs. The day of my first surgery I weighed 143 - my last revision I weighed like 128 or less.
So we started looking back and looking at my weight at the times of surgery and how long it was before I noticed that the stimulation was not in the right position. I do not know for sure what is going on with this but my Drs and I feel that we have exhausted all efforts to get this right. I cannot have revisions on this every 3-6 months. That is not good for my body organs to have surgery after surgery like that so....

I wish you luck and please talk it over with your dr. - It cannot hurt. But you know as well as I do that all drs have different opinions - I would like to know what he thinks..

Good luck Mary - I know the interstim can be a good thing and even though I have had a bad experinece (per say ) I do not talk bad about the interstim. I does help alot of people - just not for me.
Oh, I live in the DFW area.

Take care and let me know what you dr. says if you talk to him about this. ok
<img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Ruth N]

I thought long and hard before deciding to actually post my success story on these boards because so many people have had bad experiences.I don't want someone to hear my story and blithely go forward with the interstim procedure and be harmed. There are always risks with new procedures and devices and anyone considering this must really understand that and go in with eyes wide open. But beyond that clearly there are good surgeons and bad surgeons, honest ones and dishonest ones,etc. They do things differently. Some follow the protocols and some don't.
I have no control over that. I can only tell my story. But honestly at this point the only people I feel comfortable encouraging are people who go to my doctor. Not because he is the only good doctor but because he is the only good interstim doctor I know ( not that I personally know any bad ones).

One thing I feel very strongly about is the proper way to have the test stimulation. NEVER EVER go with a staged trial unless there is a super dan reason to do so (and even then, get a second opinion first). Yes, with the older version of the test stim the wire can move, but many of us have had successful trials the old fashioned way. In adddition if the posts on the Challenge Boards are any indication implanted leads sure seem to move too.

Also, if you look carefully at all the posts over time you will discover that removing an implanted wire is alot harder and potentially damaging and painful than removing the test stim wire that is not sewed in. Why would you want to do that when there is a simpler and safer alternative? I have had my implant for over 3 years now. recently I asked my doc if he now does the staged implant. He does not for the above reasonas and many others. But this doc has always followed the protocols and put his patients welfare first and foremost.

Finally the Interstim IS NOT FOR PAIN, no matter what anyone else tells you.

I apologize for this lengthy intro but it is the only way I feel comfortable posting my success story...so here goes.

Whereas with hindsite I probably always peed more often than most I never thought much about it until it really got out of hand. I was peeing as often as every half hour by day and 4-6 times at night. I always felt like I had to pee, even when I had just gotten off of the toilet. I had some mild pain and discomfort but mostly I was exhausted. I already had rheumatological problems and the lack of sleep just made me sicker. I couldn't work anymore,etc.

None of the usual IC treatments work, nor did biofeedback and electrical stimulation(which by the way is also supposed to be tried and fail before considering the interstim.

Then my doctor offered me the chance to have a test stimulation. He was just learning the interstim procedure and in fact I was one of his very first interstim patients. I thought long and hard about being a guinea pig for the technology and the doctor. But I checked the doctor out and other doctors and surgeons attested to his surgical skills. He was not a new doctor, just new to the procedure.He was being trained by an IC expert, Dr. Whitmore. In fact she was present at my test stim. I can't explain why I felt comfortable going ahead but I did.

The day of the test stim came. I drove to the office myself( I was told I could) and was fully able to drive myself back home after. yes, there were a few moments of brief intense pain as the needle was being placed near the nerve repeatedly until the correct spot/responses were found. But that was it. My back was a little sore or stiff but at no time did I require any medicine.

During the trial I avoided bending from the waist or getting it wet. I had 1 test wire on each side and I tried one for a few days and then turned that one off and turned the other one on. One side definitely worked better than the other. It cut my frequency in half and let me sleep 5 hrs straight at night. The other wire stim did not feel like it was in the right place and didn't do much. Oh, the wire that worked did slip a little after 2 days but I had clear objective proof (voiding logs) that it worked before it started to slop.

I went back to the doctor and all he did was tug on the wire and pull it out. Real quick and did not hurt at all. No surgery. No incisions.

then the hard part came. I had seen and experienced relief and had to wait months for insurance to approve what at that time had just come off the experimental list. I think it is much easier to get the approvals now.

Finally, April 26,1999 I had the interstim implanted. As surgeries go (and I have had many) I found it pretty easy. I only took pain meds (toradol) for 2 days, and honestly if I hadn't had my period and menstrual cramps I don't think I would have needed the meds on the second day. Don't get me wrong, my back was sore and I was tired from the surgery, ansthesia etc but it was much better than I expected. For me the worst part was how sick to my stomach I got from the anesthesia. Between that and the IV fluids and my constant need to pee (my interstim was not on yet) I had a horrible first night with little sleep-but little pain. The next A.M. I was still sick to my stomach so I stayed a second night. My doc decided to turn on the interstim very very low since it was so soon in hopes that it would work a little and let me sleep. It did. Not a dramatic improvement but enough to get a few hours at a time. I went home the next morning.

I had numerous adjustments over the next 4 months. My doctor was pretty available so I could see him every couple of weeks when I needed to. basically we experimented with each electrode individually and in various combinations, with me keeping voiding logs for an objective record. Ultimately we found that I did best with a specific 3 of the 4 electrodes on and cycling 8 sec on and 3 sec off. The 4th electrode made my urgency worse so it is always off. By the end of the month I was going at least 6 hours a night and at least 2 hours apart during the day. Very gradually and without any adjustments I found that I often could sleep all the way through the night. Or I would realize I had been at work all morning (I can work again) and not gone to the bathroom. In gneral I still notice slight improvements. I am still not normal. Most days I still pee every 2 hours more often than going 3 or 4 but hey, its enough to have a life.

I still have IC and I still have flares. When I flare I do wake up once at night-once-and that's a bad day and may pee more frequently than every 2 hours, but not for long.

After the first 4 months we stopped reprogramming,feeling we had gotten it as good as it was going to get.At that time Teri and Debbie B actually had better, amazing ,results than me. But I trusted my doc when he said I think we should stop now and lets see how it runs for the long haul. Once I had a bad flare and really wanted it reprogrammed and he said it would be a mistake to change it from what works. The flare would pass. A t the time I was frustrated, but he was right.

I should also say that evenonce we stopped reprogramming I had a fair amount of IC discomfort. For the first year I still did bladder instillations about every 4 months, but I haven't needed any in the last 2 years. I went to see Dr. Moldwin who said I had PFD. I had myofascial release therapy and warm baths twice a day. My pain and discomfort went away. My PFD has never come back. Maybe it is because we broke the cycle that had built up pre-interstim, maybe(this is my own theory) it is because the interstim stimulation for me feels like very very gentle kegels-tightening & releasing-which of course is a type of therapy in and of itself, but one my pelvic floor muscles couldn't do on its own and certainly not 24/7. Maybe I just got lucky and my luck will change tomorrow.

I still take elmiron (afraid to stop it incase I need it since it takes so long to quit working. Recently I did decide to try stopping my urised-since that works quickly. I seem to be okay without it. A year and a half ago I tried stopping it and my bladder discomfort came back. I guess things change. Is the interstim causing further improvement or is it coincidence, who knows?

The interstim is not perfect, even for me. Lately the area where my battery is implanted hurts more. I think it is because I changed my exercise routine to accomodate other medical problems unrelated to all of this. The exercises I do now (in water) work the upper buttocks more than walking 2 miles a day (which I can no longer do for other reasons). It may strain or put pressure on the muscles around the battery, muscles that may be compromised by the implant. Maybe I will learn to live with it, maybe I will have to modify or reduce my exercise, maybe it will have to be moved.aybe the whole darn thing will break tomorrow.

In the meantime, I am grateful for the 3 years of life that I have had. And I love it that when we go on a trip my hubby needs a pit stop before me!!!

[cbsummer]

Ruth thanks for taking time to tell your story very good information from someone who has "been there and done that" Gave me some good food for thought as I try to decide what to do.

[deborah b.]

Postive tube where do you live in DFW area. My sister use to live in Flower Mound. I do have the interstim in. You have 6 revision done, where do they keeping taking lead out put it in another spot.. How did the doctor know that the lead moved? I had my put in last April 2001 and had revision done in Aug 2001. Know I am having cramping in my legs, fett and toes plus tingley in my feet. I had an x-ray done on my back back in May. My cramping started about 5 weeks ago so I asked if it could have moved so we are going to have another x-rayed done on my back. I'm going to have it done tommorrow after I see my primary doctor and going to discuss it with her and to see maybe it is coming from something else. If it can not give me answer why I'm going for a second opion with another doctor in Pittsburgh,PA. <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[yvette]

I'm glad I did it even tho its not working as well as I'd like it to. I did get one day where I dodn't have to go for 7 hours!!!!


So I know its capaable of working [for me].

MY MEDTRONIC REPRESENTATIVE told me first thing and upfront: [quote] If you are looking for pain relief, you need to look elsewhere because Interstim is NOT for pain.

If you have urgency and frequency, yes we can help with that. <hr></blockquote>

I feel that I was informed every step of the way. I feel the information I received was honest truthful and much more accurate than what some other girls across the country recieved. It was a very pleasant and succesful experience.

But some of that success was my doing: I can't stress enough that We as Paitents need to do our homework. Push push push for those answers you need. Listen to your gut and intuition...Don't ever think the Doctors/Medical community will do it all for you. No One will care for you body, mind and health like you will.

So yes I am happy I made the choice to have it implanted, I previously had exhausted ALL venues of treatment. This was the only one left.

y. [img]smile.gif[/img]