frustrated.. Interstim not working again.. so many questions

[Bea]

Hi lady's......

Its so hard for me to have the time to get on this board.. between wedding plans and work I am so busy.. and I hate it,,..its hard not to be in constant contact with all of you.. since you are the one's who have helped me so much....

Anyway.. I had the implant in August...and I have had so many adjustments... well it is not working again.. and I am so frustrated.. I just can't take it anymore..I am running to the bathroom constantly again.. here I go with the sleepness.. nights.. it really sucks.....besides that my pain is unbearable.. what can I do... since the interstim.. doc has taken me off all meds.. use to be on elmiron.. don't really think it worked that well though.. so what can I do.. what kind of meds should I be asking him for.. I need something else.. to help my swollen tummy.. and pain.. and .. all that wonderful stuff IC hits us with....

HELP....I can't take this anymore...

Love
BEA

[Kara23]

Bea,

Why would your doc take you off all meds? This puzzles me. I am getting the interstim implant March 9th but I am staying on all my meds plus the implant. The way my doc describes it to me is that each of my meds is like a band aid ( hides some of the pain and helps me sleep) and the Intersim implant will be another band aid ( not a cure) just another thing to help make IC more berable. Another friend of mine went of all of her meds and I am so confused as to why anyone would do this. I am taking Elmiron and Elavil both help with pain. I would never go off of them unless I get pregnant which I am not planning anytime soon. It took 8 months for the Elmiron to even start to work. I break each one into some cool aid because the capsules hurt my tummy and made me nauseated. I guess if meds are not helping anyway it would make sense to go off of them but my meds help tremendously. If I went off of them I would not be able to work.

I would try going back on some meds. Hang in there this is frustrating as hell!!! I am getting married in June the 29th and all I wanted to do was be able to stand in the recieving line and wear my contacts. I hope I will have the interstim fine tooned by that point!

I hope you feel better soon. You may want to try a different uro, one who knows how to take care of an interstim implant...maybe he or she can find the right adjustment for you. My thoughts and prayers are with you.


Kara

[dedeash]

Hi
I am so sorry you are having trouble with the implant. I had my first surgery in August too. The implant worked for about two weeks and stopped...we are not sure why. Then I went through 5 months of adjustments to no avail. It was thought that scar tissue moved the electrodes..but I also found out later that my doctor used nerve S2 in surgery and had used S3 in the trial. So then I had another trial in December and again it showed I got great results on S3. So I had surgery last Friday (they used S3..Thank God) and go to get it turned on Thursday to see the results.
During the period where I was having adjustments...they did many different things...changed the pulse rate, band width, nerves, turned two on and one off....all kinds of stuff so don't give up. They still may have a trick or two up their sleeves. Also they had me shut it off an hour each night, and then another time I shut off completely for 2 weeks. Hang in there My Bionic sister friend
Dede

[Carolyn B]

Hi Bea, I had my surgery last April and I'm still getting adjustments. I have good days and not so good days, but all my days are better than before the inplant. I'm still on medication - Heperin cocktail, tofranil, low dose valium and premarin vaginal cream. I also do pelvic floor exercises. I have my unit at 1.3. If I go any higher I get leg and foot stimulation. I shut mine off for one hour at night to let my nerves rest. I hope this helps. Good Luck, Carolyn

[Bea]

Thanks for the advice everyone...

I do turn it off just about everyday for a few hours.. I even tried turning it off for 3 days.. still no better.... as for the meds.. I will see the doctor on the 5th.. and see what he can do.. i just don't know what to say anymore at this point.. boy this thing sucks....

anyway.. thanks...

BEA

[Ruth N]

I also still take meds-elmiron,elavil and urised. the interstim takes care of frequency and the meds help pain. Interstim is not designed to treat pain. If your doctor thinks it is you need to consult a doctor who understands interstim and is willing to address your pain issues as well. I sure hope you find relief soon. Ruth

[Maureen]

Bea,
I had my interstim in August as well and my doctor will not do any more adjustments as he is convinced that it is the right location.
From that I have decided that I guess this is it. The bladder has improved slightly but it is not normal. I now can hold 100 ml. Before interstim I could hold 50ml. The doctor considers that a sucess because it is a 100% improvement. He has given me a script for detrol to use when I go out. I do not think I will ever sleep through the night again.
I do not know if you read the article at the site I posted earlier but it is interesting what doctors and medtronic call successful. I am not sure that it is the same goal patients have.
I guess what I am wondering is when do we know that we are getting the best we can out of the interstim? Any ideas out there?

[Teri]

Maureen~I'd be seeing another dr cuz that's a total bunch of B.S. You dr is being lazy. There is no excuse for you to have 1/2 assed results, geez that fired me up

Bea~have you had a rep from medtronics come and try to help in the fine tuning of your unit? If not, request it. As for your pain meds, your dr needs to spend a day with IC. Take some copies of letters from here from interstim patients who are still in pain. I have gotten off of the methadone~thank God! and am back on xanax and darvocest and probably will be until my dying day. I am in a remission but I still have bladder pain if it's touched or rubbed against....some of these letters might make you dr see the light!

sending you the bestest of wishes! teri

[Bea]

I have a very good rep here in New Jersey.. I am actually seeing him on Febuary 5th. I received a call from my doctor yesterday that they want to do an xray to make sure everything is still in place. One thing I do know is they will do anything they can to make sure this thing works.. thats great.. and I love that, but the pain,, ugg.. I take percocet when I am in absolute need, but I want something to take all the time as a constant releif... the percocet should only be used for emergencies... any suggestions out there....
Just a note to all... your doctor should do everything possible to make the interstim work to the fullest.. if he is not, then there is something wrong with him...call medtronics, and tell them the issue.. laziness is no EXCUSE....

BEA

[rhonda]

Bea, my doctor, Dr. Benson (one of the pioneers of the interstim) has a theory that makes sense. I am 'blessed' to be his only knowledge of a patient with the interstim who has kidney stones. He thinks that when the pain level gets higher than the stimulation that the pain takes control of those nerves. It makes sense because when I get relief the retention stops.

[dedeash]

One more comment or suggestion...I don't think you should settle for those results either.

I have been through this...and what I did to prove the electrodes were in the wrong spot was to redo the trial.

I had great results on the 1st trial in June
then with surgery no results in August
then in December I redid the trial and got the same great results.This is when they noticed the wrong sacral nerve was used. Something they never knew before but are making note of now....always use the same one as was used in the trial...no matter how wondeful the reflexes look during surgery.

So that is one way that is not too invasive to see if you can repeat the good results. believe me I didn't want to do it...but am glad I did because it gave me all the confidence in the world once we did it.maybe you could mention it to your uro.....and see if he would do it...otherwise I think I would try talking to someone else...or even medtronic.

Good Luck
Dede

[Bea]

I appreciate your advice. and I know I have a good doctor,, hopefully the xray on tuesday will help them figure out what is going on here. I know it is something.. and I hate it. Last night I was up every half an hour going to the bathroom.. and the pain was uncontrollable to.. and it does make sense that extreme pain can take over the nerve. Thanks,...

Anyway my doctor is Dr. Berger is west orange new jersey.. he is so wonderful.. I know he wil help me. I will fight this.

Thanks
trying to stay strong...

BEA

[Sandy]

I went for a tune up yesterday in Toronto and this is my third and he really moved things around and tried different "settings" and asked me where I felt the stimulation and I told him and he kept adjusting and it was high but now 24 hrs later I feel better plus I showed red blood in the dip from the emerg the other night so I am taking macrobid but have not heard results on the culture yet so my uro said to finish them as I have had to cath alot and he also did an xray. Maureen has he not done this with you. I find he is very thorough(sp) and explains thing well. Les was with me as I do not understand alot of the techy stuff and when you are on the"spot" getting an adjustment My mind is so much on looking for relief that I don't register everything he is saying so Les understands it and then explains it to me late when I have calmed down abit. Sometimes I find it takes up to a week to "settle" He said that there is 200 different ways to dovarious adjustments, and I think you like I have only had a couple so far. If you are still having trouble I would call him again and again. I do. I also understand that he was in on the design and development of this interstim so he would have as much knowledge as the medtronic rep. Anyhow I have found him quite patient and answers anything I ask. He must think I am nuts sometimes cause I take a list with me but like I said when you are not feeling well you do not think of everything or take everything in that is told to you.
Sandy