3rd revision.. can't do this anymore..need advice

[Bea]

Hi everyone...

Well here it goes.. I had a second surgery done.. cause the lead moved.. a 40 minute revision took over four hours.. and now I am still not working. My first surgery was 1 year ago.. anyway.. I was told my back and nerves are weird.. like things aren't in the right place.. well they want to do a third revision.. they actually are going to do a test stim first.. before going in again.. I am trying so hard to go through this, cause I know the interstim worked for me.... but at the same time .. how many more times are they going to have to cut me open,.. is this worth it.. I sure hope so.. I want so bad to feel they way I did when the implant was working for a while... gosh what am I going to do.. and to make things worse,. I am getting married in 2 mos.. and it seems like I keep planning for surgery instead of planning for my wedding.. I need advice.. I don't know what to do... why so many problems..

BEA

[Alisha]

HI BEA,
I am so sorry to hear that you have to have surgery again. I am happy that your Interstim did work for a while...at least you had a little relief. You are probably sick and tired of being cut open, but I think that you should stick it out because it could possibly really help your symptoms in the long hall. I can't believe that you are planning a wedding and dealing with all of your IC symptoms. That alone shows us all how strong you are. Like planning a wedding isn't stressful enough I don't know much about the Interstim becuase I don't have one, but I can be here to help you get through this. I hope someone else knows more and can offer more advice. Take care of yourself and I will be praying for you.

Love,
Alisha

[Ruth N]

Why not decide not to decide for awhile. Take a break, focus on your wedding and honeymoon and give yourself some time. You don't have to do a revision right now, or at all. If in the future you feel you want to try it again go for it, but if you have had enough that is okay too. I am sorry you are having such a tough time. There is no right answer. Ultimately you are the only one who should decide if and when to try again. Hugs. Ruth

[Teri]

I'm with Ruth 100% on this one....take a break. Plan your wedding, have some fun and try to put the implant on the back burner for awhile. Give your body and mind a rest.

I am sooooooooo sorry that you are having to go thru this but right now you should be having happy thoughts.

tons of hugs teri

[DebbieB]

Hi Bea:

As you know I had the InterStim Implant done over two years and everything was working just wonderful for me and as you know I just got over surgery as my lead wire crack and cause failure to my Implant and stop working for me and had to be replaced...
I was in shock when I found out that the InterStim Implant was not working but knowing how wonderful and good my urologist was in doing this procedure, I did not hesitate to do it again..
It will be a week tomorrow that I had it done, as for me my surgery took longer about 1 hour and half more then planned..

I know it is a very hard decision to make, but Bea was the InterStim working really good for you at one point??

I would just take more time now for your up coming wedding and honeymoon and just do what is best for you now, maybe this time away from all of this stuff, you will know in your heart what is best for you and then think about what is best for you Bea..

I know how you feel about being cut again, I did not look forward to this at all, but now that I did it over, you know it was really was not that bad at all, and if I had to do over again next year, I would not hesitate in a minute to do it over again ,because of how much this procedure changed my life it was well worth it for me anyhow !!!!

Do what is best for you and only you Bea !!!

~~Lots of Hugs~~ Debbie

[Kara23]

It must be so frustrating for you Bea.
My wedding is June 29th and it's so hard to have IC on top of it. I don't even want to go on a honeymoon b/c I can't have sex anymore. It's too painful. I do have the Interstim and it is working for me and I've only had it for 2 months. If mine were to malfunction or break, I'd go in to have it fixed but if it borke again I would strongly consider finding a doctor who was really experienced with the Interstim and even when doctors are experienced there are always others who may have a different approach to the sugery. Maybe you can find a doctor who has had this happen to one of his patients. Maybe there's a doc out there that has had this happen before and knows how to fix it. This research might take some time which would give you time for your wedding and honeymooon. The good news seems to be that it did work for awhile. That sounds encouraging. Can you find another doc? Or can you ask your doc if he can find another doc who has been through this to at least get some guidance on the matter?

Good Luck
Congrats on your upcomming wedding!!!!!


Kara

[Raven]

I am sorry about your troubles with Interstim. I too have had a similar nightmare. I fell down the stairs and my lead slipped. Thankfully that was the only thing that happened, but I just recently did the test again. The test procedure is now less tramatic than the 1st time, because they actually put you to sleep. It will be a week tomorrow and I feel pretty good. I have been married for a year trying to plan a wedding can be very stressful. Maybe you could do the test and leave the test in until after your wedding and some relief without the intense recovery. Just a thought. Good luck and remember this too will pass. Just ask yourself what you should do and the first response that comes to mind you should go with that. Take care..

[dedeash]

Hi
I am so sorry to hear of your difficulties with the implant. I can certainly understand your frustrations. I have had two trials and two surgeries and still have not found the right settings. I have been praying that they dont recommend a third surgery to me.
I sure dont know what the right answer is....Only time will tell for you what to do and what you feel you can handle. I guess I would have to agree that waiting till after the wedding would probably be a good plan. ALso it could buy you some more time to get other opinions or find out more about what is wrong.

I will add you to my prayers and hope that you can decide what to do without too much worry.

Take care and please feel free to email me and we can share revision stories

Dede
[email protected]

[pooh]

HI BEA,
I HAVE TO AGREE WITH RUTH & TERI. CONCENTRATE ON YOUR WEDDING. THIS IS SUPPOSE TO BE THE HAPPIEST DAY OF YOUR LIFE. SO TRY NOT TO LET IC INTERFER WITH IT. YOU SHOULD PLAN YOUR WEDDING & GO ON YOUR HONEYMOON. THEN WHEN YOU COME BACK YOU WILL BE REFRESHED & HAVE A CLEAR HEAD TO THINK ABOUT WHAT YOU REALLY WANT. THIS IS A VERY DIFFICULT DISEASE, TRY NOT TO LET IT RUIN YOUR DAY. I KNOW ITS EASIER SAID, THAN DONE. JUST REMEMBER WE ARE ALL HERE FOR YOU. YOUR FIANCE MUST BE A REALLY SPECIAL MAN. I SAY THAT, BECAUSE A MAN THAT MARRIES A WOMAN WITH IC, TRULY LOVES US. I KNOW BECAUSE MY HUBBY GOES THROUGH EVERYTHING I DO. WE ARE TRULY BLESSED. SO CLEAR YOUR MIND & PLAN THE HAPPIEST DAY OF YOUR LIFE. GOOD LUCK.
MONICA

[Sherron]

Hi, Bea

Don't give up! I had my first implant in 1989 and had two revisions after that, in 1991 and 1992. I was the first patient to get the stimulator at UCLA when it was still experimental (actually, it was Urosys rather than Medtronics back then). The first time the lead moved and the 2nd time it broke. While not being a fan of surgery either, it was (and is) definitely worth it! All I have to worry about now is when the battery runs down -- but it's been over 10 years & is still going strong!

I have been basically normal since my last revision -- I have resumed traveling, kayaking, surfing, and all those other things that IC made impossible. I am forever grateful to Drs. Schmidt & Tanago for the research they did at UCSF.

Believe me, if you had good results with the test stimulation and your first implant, you should have good results permanently. I have never regretted any of the surgeries.

Also, the revisions are not usually as bad as the first time. The only one that takes a real long time to heal is the one over the sacrum -- I had that done twice.

Keep your spirits up! It will get better.

Mahalo, Sherron

[Sandy]

Hi I agree with getting the revision done again I may possibly have to have a second wire put in as my bladder is still not emptying to that relieved feeling but even with the one it works and I have to cath more than I would like to but my life is much better than last year this time.
Yesterday was a tough one as I had a urodynamics done the day before and I also had a bladder infection which I KNOW the ant biotic was not working. I was in horrible urg/frq yesterday and went to emerg in a town where I went camping and they changed the antibiotic and I got a anti imflammatory paind shot and feel much better today than yesterday. I am a camping dy hard and won't let this get me down. I feel more relaxed away from home where I can just vegg when I flare and unstress.

[dedeash]

Hi Bea
I am wondering what are the reasons for your surgery revisions. I have had two also and now they are thinking of a third.
Wanted to compare notes with someone as I havent found anyone whose story is like mine.
Can you email me at [email protected]?

I just got word Thursday that they would like to do a 3rd , but this time do a staged implant trial for 2 weeks. Have you had the staged one?

I had my first trial in Nov 2000, surgery Jan 2001, then another trial in June, and then second surgery in August 2001.
Can you tell me when your implant did work and for how long? How many settings did they try? etc.,?
Thanks
Feeling like a failure and a freak
Dede