anyone with interstim.....help??

[gloriabono68]

My uro........has just about exhausted all other options for me about my IC>.....she has suggested several times that i might have to do the interstim.........but i am not sure what all that would entail......i know its surgery but like what kind of surgery....how serious and painful is it?? what is the recovery time of that ? and also.....how soon does it begin working? do u have to stay in the hospital long?? she leaves out alot of detail.....
just keeps telling me they have to do the test version first.....which apparently is also some kind of surgery...i am not sure how the test version works either........but all i do is pee so she keeps thinking this might be my best option.......but i am scared to go thru all of that and then it stops working or doesnt work at all or it makes me worse??
i want to hear all the details good and bad.......so share some stories if you don't mind........anyone and everyone please??
thanks
gloriabono

[littlebear]

Hi Gloria,

There's information about the interstim on this website (I think I listed where it was in an earlier post). Also, medtronic has a page http://www.medtronic.com/neuro/interstim/ that might be helpful too.

As for answering your specific questions, everyone is different--so my answers might not apply to you. But I know that feedback can be very helpful, so here goes! The first thing I'd say is that if you have a Dr. who is not communicating with you well about the procedure--think twice right away. Even when there is a positive result, this can be a long and frustrating process.

Stage I is the trial. For me, it was outpatient surgery. I was nauseous afterward from the anesthesia, but other than that wasn't uncomfortable (I didn't have to take any mediations, but I have an incredibly high tolerance for pain). The trial went very well for me (although having wires sticking out of your body and attached to an external device is a bit strange). I saw a 50 percent improvement almost over night and within three or four days my frequency had improved 50 percent more than that. I also really took it easy (in part, because I was incredibly sleep deprived going into the surgery) and was very careful for the entire two week trial. I've heard that other folks have shorter recoveries (3 days in one case) and much longer recoveries too.

Stage II. My implant also went smoothly--pretty much like the trial did. It was outpatient surgery too. But, I didn't get the same kind of results. I've been reprogrammed many times over the last four months and I saw some improvement about two weeks ago, but the latest reprogramming that wasn't as successfull. Apparently it can take six, even nine, months or so before some patients get results (and my Dr. has asked me not to use the medications that helped my symptoms a bit before because they will mask the effects of the implant).

So, all in all, I'm an inbetween story. I loved the implant during the trial (and was nearly as happy when it started to work better a few weeks ago), but have been working on being very patient with it since March.

Also, there are things that I could do before that I just can't do now (lifting things, activities that risk falling--someone wrote in about not ice-skating any more and I thought, "Oh yeah, that's something I really shouldn't do either"). The medtronic information should include a list of guidelines about that sort of thing. It also should include information about potential problems the implant can cause (but they won't give you as many specifics as folks who've actually had problems will on the boards). On the other hand, because I'm still in an in between stage, I also can't give you the kind of detailed information that folks who've had success will either.

The only thing that I will say without hesitation is that I'd suggest you continue to research this and give your decision lots and lots of time and thought before you make the decision that you feel is best for you. Best of luck with this! Best wishes, little bear

[gloriabono68]

Thanks for responding..........i really appreciate you taking the time to do so........
I have done a little research on my own already but i really just wanted to hear from people who have had it done and all of that stuff........
shes also talking to me about the hydrodistention and being put under to have that done........but she says that usually helps people more with the just mostly pain end of IC instead of the urgency frequency end.......and of course she keeps mentioning the interstim as something to really consider......shes just giving me general info right now......i am sure if it comes down to the wire of actually trying it she will over whelm me with details......
she did say that luckily most of the people they have treated with the interstim do fairly well and have few problems......but knowing how my luck runs........it might back fire..........i am just a confused mess right now.......
I am tired of being overly medicated and tired of having bladder cocktails that don't seem to help a whole lot.........all its doing it wearing my car out cause i have to drive 40 miunutes to get to their office.......
If the interstim would work and work fairly well then , it would be a damn miracle for me..........i could finally semi live a normal life and get out and do some things.....like travel........without a lot of problems......I am not a real physical person anyway.........i mostly just walk.......so i think i might would be ok with just that.....but i never get to take a vacation anymore...........i never get to go out of town for a weekend or a week or anything........I am tired of being a prisoner in my own home........
But i do know its getting time to do something.........i just don;t know if it will be hydrodistention or interstim.........and i am afraid that if i do either it will make me worse and i cannot handle getting any worse than i am right now.........I need help and lots of prayer or something to help me make the right decisions........
BUT i really appreciate you being so honest with me and all of that stuff..........i really do.......thank u again.......and if theres anything you ever want to tell me about it .......gloriabono@yahoo.com........i would love to hear more.......
thanks again
kristi ( gloriabono)

[peiti]

Hi, Kristi

What kind of conventional treatments have you tried? I won't ask you not to try InterStim, I personally don't think it should be the last resort cause I know suffering from frequency was terrible enough. But if you only tried a few traditional treatments, I will think better ask your dr if there are other less invasive options.

When I first read the success story of InterStim patients, I thought it was a quick fix. I only needed two small surgries and then my frequency would be gone. It was not like that. I started seeing the positive result 6 months after the surgery. I really don't remember how many reprogrammings I had in the six months. I was so frustrated and blamed myself for making the decision to have this surgery. In the past half year, the emotional distress was so overwhelming that I regreted sometimes to have this implant.

It is a very important decision, please research more and ask questions.

:pray:

[IcyAngel22]

Gloria-

I have an Interstim and I had it put in Aug 8, 2003. It worked well for me for several months but did in fact stop working for me. The device was fine but my urge and freq. came back. I've tried everything the interstim was one of the first things I did. The reason for that is because I go to school out of state and wanted a quick low maintence solution. Ask your docotr about boxtox injections because my doc says that uros are using that treatment before the Interstim. It is less invassive. There really ins't a long recovery time mine was an outpatient surgery. That night with pain killers was out at my brother's graduation party having fun. You won't be able to lift heavy things for six weeks. With the Interstim there are two surgeries. First a test pack to see if it working for you. The test pack is outside your body but a wire(the call it a lead) is in your scarum pokes out to connect to the pack. It looks like a beeper. If that works for you then they will put it in a natural pocket in your butt cheek. You can feel it but you can see it or a difference form the skin. The pocket will be sore but nothing too bad. Two weeks you should be perfect. I had to wear baggy pants so it wouldn't bother my wound. I was back in jeans and fun clothes in two weeks. I did it so I wouldn't get an infection. Anything else you need to know private message me or e-mail me PhelanKristinE@ambrose.sau.edu.
To tell you the truth I would do the Interstim all over again even if I knew that it would stop being effective. I don't know why mine stopped working. I had a few falls that could have played a part or not. An Interstim is a big step and really think about it. Eveyone is different you can try the test pack with little or no problem. If it works then you have your answer. I hope my long reply helps

Kristin

[dyno]

Gloria,

This is like every treatment in that you have to do your research and really talk to family members as to what impact this could have on your life, good or bad.

Interstim is considered a last resort treatment by the FDA. They say it should be considered only when the patient has tired and failed other more conservative treatments, like oral medications, installs etc.

It is a surgery that can have major complications and/or benefits. For those who have good outcomes it is a real help for their IC. You have to realize there are failures also and they have further complications due to the Interstim. Make sure you can live with further complications other than the IC you are dealing with now if you were to try it and it didn't work and those complications happen.

Here is the link for MedWatch, you can go in there and look up Interstim also.
http://www.fda.gov/medwatch/

No one can make this decision for you, that is why you have to really do the research on this and decide for yourself. I wish you the very best and hope you can find something to help you.:grouphug:

[littlebear]

Hi Kristi,
My pleasure. I'm so glad to hear that you and your Dr. work well together (to me, this is the most important thing of all no matter what treatment you end up choosing). It sure sounds like you are doing the right thing by researching this and hearing about the experiences (good and bad) of folks who have gone throught the procedure already. Best of luck with all of your efforts. Best wishes, little bear

[gloriabono68]

Thanks little bear......... i am still over whelmed with having the interstim and all the it entails.......but i hoping that the doctor can shed some light on the whole thing when i actually talk to him. Hes the only one that does it in their office i think and he has done alot of them. My uro said hes very very good at doing them. And out of all the people they have had them done on they have had little problems.......and all of them felt better........so i am hoping that if i do indeed have it done ......i will get better also.........i am just so confused........and scared to death it might make it worse and i cannot handle it getting any worse than its been right now.........i know i can't ......IC is the most frustrating illness i have ever seen.........I feel like i am danged if i do and danged if i don';t most days..........and i just want to find some relief ya know........i just need a break........
I thank u so much for caring and understanding........i wouldnt know what to do without this message board............
take care
kristi ( gloriabono) :thumbsup:

[ICNDonna]

You mentioned hydrodistention in your original post on this thread so I will respond to that. Hydrodistention has been a major treatment for me for all of my 29 years with IC and for me it helps with pain and with frequency. One thing I notice when I need a hydro (the pain and frequency tell me when) is that when I urinate, I just sit there and dribble and dribble and dribble instead of any kind of a stream. The hydrodistention corrects that for at least six months. This time I have gone a full year and am scheduled for a hydro on July 28th.

You might want to consider this option along with considering the interstim.

Warm hugs,
Donna

[gloriabono68]

Thanks...........i talked with her about that the other day and she is still recommending the interstim........so i don't know.........i have to talk to the doctor that does the interstim stuff week after next........so i will also ask him about this as well.........And then maybe decide which one i should try and go from there.........thank you for all the information........
kristi ( gloriabono)

[janetm]

I was peeing 26 times a day for almost 2 years when I had implant. Sleep deprivation was biggest problem. Have had constant burning pain since implant. Am peeing less now due to pain meds I am being given for nerve pain. Why didn't they give me meds before, instead of experimental surgery? Is implant less morally repugnant then pain medication? I would say be asssertive about addressing pain first. But this is just based one one person's experience. I have heard implant helps some people. I will look for your future messages on the board.

[Teri]

Gloria~I had the surgery done twice. With the first implant, it was heaven. Worked immediately. THe only problem I had was that the big to on my right foot curled. But, I was only peeing 3 or 4 times a day so it was worth it. After 18 Months the curling in my toe moved up my leg and all of a sudden I was peeing 20+ times a day. The device had quit working. And, my dr dropped me, left me hanging with a device in me that didn't work and even after medtronics had worked on me for 1 1/2 hours, they couldn't even get it working. He refused to return my calls and after 6 months I asked the secretary what was going on and she said he told her to ask me "what do you expect me to do about it?" That was after 6 months of calling him. So, I found another dr.

I was not so lucky that second time around. I ended up having to have the device taken out. There is no rock solid proof of this but my Neuro believed that my body was trying to reject the implant, I was soooooooooooo sick. Within a day of having the device removed, so many of my symptoms got better so for me, I also choose to believe that the implant was being rejected by my body.

Neither times did the device help with my pain.
I am now "just" a pain patient and will be happy doing that for as long as possible. I am no longer in a hurry to have some object that they have no clue what is going to do to you in the long run put into my body. Yes, there have been short "studies" where 20 people have been helped.....well, what about the other 20 people that were probably in the study too. We don't hear about them and that angers me.

I have been at peace since I had mine taken out. Going thru the whole thing of acceptance again but I dould no longer live with the extra pain that the device was doing to me and getting no positive benefit at all.

I think the biggest lesson I learned was that when I sign my next surgical release I am going to real ALL the things that can go wrong and remember that on that second surgery, many of them DID go wrong.

wishing you the very very best

[janetm]

Teri brought up something that happened to me too. My doctor would not help me wth the pain that started during the phase 1 implant and has continued today. It makes me feel like there's a lot more bad news about the implant out there, that we're not hearing. I was told there was a 70% success rate with the implant and that there's has never been a single case of any lasting nerve damage from the device. But if cases like mine and Teri's are ignored these numbers are not accurate. I have been in pain for 10 months.
So, Gloria, I would say it is important to talk with your doctor about what happens if you have pain/problems with the implant. Ask the tough questions. Get another doctor if you don't feel that your doctor is going to take care of you.
A doctor who would address the problems (if they occur) right away and not deny them would make a big difference.

[BLOORE74]

The first stage is surgery & they implant a lead or wire in the sacral nerve of your spine. They run a wire outside your body, from your back that's connected 2 a little box that looks like a beeper. It turns the stimulation on or off & up & down. The stimularion feels like a tapping or fluttering usually in the bicycle seat area. Thats what your box does. If it works then they implant it permanently. Mine worked for about 8 months w/ my pain. Then the lead inside my body broke! I was so ccareful, too! I have no idea how it happened. But that cost another$54,000!! The test procedure costs about the same. It's a very expensive procedure. Since I had it replaced it hasen't helped the pain much. I haven't been able 2 work for almost a year, cuz of the pain. And I still haven't paid the doc bills, I'll never be able 2 pay them. They're really crazy. They also charge for reprogramming. My doc used 2 charge $974.00. My current doc charges $427.00. Just know all the facts before u do the surgery. This procedure took me 4 months be4 we could get my ins 2 pay 4 some of it! Thats cuz its so expensive! And theres 2 surgeries, not one. The interstim should only be used as a last resort. I wish u the best of luck, hope this helped.

[Rowena]

OK, I may be late but I'll jump in here.

I have had the interstem experience. I still have it and do not intend to have it removed. I turn it on every now and then to see if it still works. They told me to turn it off when I'm not in pain and since getting on Algonot, I'M NOT IN PAIN! Kinda wish I had known about Algonot before I got the interstem.

It does work for me when I need it so, I guess I'll keep it and if the Algonot, quits working, I'll turn the thing back on. It was sure expensive enough and I went through enough pain to get it inserted. I kinda hate not using it. But if I wear out the battery, then they have to cut me again and replace the battery. Unfortunately, prior to getting the interstem implanted, I had had so many controlled pain meds, they could not anesthetize me, and I was awake for the whole ordeal. Believe me they knew I was awake and in pain but they told me afterwards that I had enough anesthetic to put five men under. I was just so pain med tollerant. Algonot is letting me get off those serious pain meds though and I am so excited about that.

Would I do it again? Probably, I was desperate. I have a 3 oz bladder capacity on a good day and pain with every step I take. Even with the methadone,fentanyl, neurontin, clonazipam, celexa, and lodine I still hurt. They could not get me to where I could even function in real public so I was rather a hermit. I keep singing the praises of Algonot and my Lord. I know that all healing comes from Him.

[gloriabono68]

thanks..........for everyones input.......i will keep all of these in mind before i make any final decisions...........i am peeing so much that i am afraid i am going to lose my mind literally...........i just can't keep living like this..........

[Peggy Anne]

Can someone describe what "pain" you had from the interstim? Not the pain you have from IC, but the new pain from the interstim. Thanks!

[Rowena]

Peggy Anne,
Are you talking about the surgery pain? My first one was no more than bladder distentions that I have had. That was the test. The real one was about the same. Because the lead on the left side moved, I had to have the procedure done again. I take methadone and fentanyl, two very serious opioids, the anesthesiolagist had real trouble putting me to "sleep" the third time. I had serious pain for about two hours after the surgery this time but then, after I finally fell asleep, when I awoke I had nothing but a little soreness. I hope this is what your are asking. If not, I have not pain with mine now that the initial pain is over. There is a undescribable tingling sensation in the area where the IC would make me hurt when I have it turned on now.

Rowena

[Peggy Anne]

Thanks for the reply! Actually I was asking about the pain during the surgery and the pain caused because of the interstim, the re-occuring pain on a day to day basis due to having the interstim in your body. I don't have pain in the bladder area now, so I didnt want to do something that will give me that pain. So I was wondering exactly what type of pain people were getting from having the interstim.

[Rowena]

Why is your dr. prescribing the interstem. Mine was for pain control and it does work. I don't have any pain from having it in. I even forget about it. My dr. told me that if I'm not hurting, don't turn it on, to save the battery. So I only use it when I hurt.

[Peggy Anne]

My Dr. is recommending it for frequency and urgency. I don't have any pain so I am very leary of doing something that might make my IC progressive and start the pain.

[Rowena]

Mine works for that too....frequency and urgency.

[gloriabono68]

Well they want to put one in me for the urgency and frequency.........but now my medicaid will not pay for it..........so i am screwed and fallen thru the cracks yet again. I sometimes think i am just DOOMED to SUFFER and live in IC misery for the rest of my life. They think they can get me in , at the winston salem hospital which is like two or a little over two hours from here. TO get it done..........because they have a different program that does work with my medicaid.........i just hate having to drive that far to have something done ......especially as much as i am peeing these days......i took my diary back to the one URO that was going to do my interstim and he just kept saying.....bless your heart..........somedays its been over 30 times aday.
He has now added detrol la to my two ditrapan;s a day to see if it will help.........talk about cotton mouth.........man o man...........it just never ends.......
i am so frustrated people i do not know where to go , what to do anymore........
kristi ( gloriabono)

[janetm]

I want to say something to you, but I don't know what. I feel so bad about everything you are going through. I want to help. All I can do is share my own experience. After years of trying IC treatments and learning relaxation methods and meditation I have finally accepted the fact that I need medication to help me sleep. My uro said (after a urodynamics test) that I have sensory urgency. This is a form of pain, The bladder lining is "shot" and I feel every little bit of pee and have to go over and over.
You have to be careful with sleep meds because your body gets used to them and then they don't work. So I vary what I take and how much. Sometimes I have to go without for a few days to get something to work for me again.
Have you asked your doctor for something to help you sleep? Sometimes a GP or OB/Gyn is more willing to help with this kind of med than a urologist.
Don't know why. We all need sleep. Sleep deprivation is used to break people down and get info out of them when they are captured in wars. You have a right to "sleep relief" .

[gloriabono68]

janetm,
I don't know if you were addressing that to me or not.......but i don't sleep much......i feel like i never really acheive rem sleep because i probably am not.......i know i am not........even if i manage to sleep i still wake up every hour on the hour.....sometimes
sooner.....so i really don't know..........the uro gave me hydroxine to try and my family doctor put me on tranzene to help keep me calmer at night........and even that doesn't KEEP asleep........sometimes i wish they could just knock me out for a few days.......or until a cure is found or something is found that will actually CURE all the symptoms of IC........
I am also getting more and more depressed.......which i try and hide.........from everyone and everything........probably not a good thing either.......she has suggested i start taking so kind of anti depressant but i have tried all the ones she has already named......the side effects are almost worse than the depression......i gained alot of weight after i took paxil for almost four years and i still have been unable to get rid of it......so i am very reluctant to get back on them.........not to mention the various other side effects........
I am taking way way way too much medication right now......its not even funny.......
i feel like crap 24/7.........its not fair........i cry all the time at home.......i am about to lose my home anyway......i will have to uproot everyone and everything i have and move to my parents house.......not good........i don't know why its such a big deal but it is........i just don't know what to do anymore.....

[SusanC]

Dear Gloriabono,
I am so very sorry to hear that you are having trouble with your home as well as with this @#$#-ed IC. We know how you feel about the meds, side effects, and difficult surgical decisions, but to have other worries too? it's just not fair.

But, perhaps at your folks house you can get some financial relief. Sometimes we just have to do what we have to do at the time. You'll be able to get out on your own again, I just know it......even tho' it probably doesn't feel like that now.

Many of us here take lots and lots of meds....they're supposed to help us to function, but lots of times the side effects don't even allow us to function....many here, me included, have said that they don't drive at all any more 'cause of the meds. But finally, you will, as nearly all of us have, you will find the right combination of medications, treatments, and procedures that work for you.

Have faith....sending a :grouphug: and some :angel: :angel: to be on your shoulders for a while, too help you thru' this.

Meanwhile, we are here for you...let us help, OK?

[gloriabono68]

[B] Thanks susan.......i really appreciate the kind words.........it means alot to me. I hope that someday soon......really soon....all of us won't have to deal with the many many complications that having IC involves .....because it spills over into everything and everyone elses lives involved wtih us as well. we have a program here called vocational rehabilitation i just recently found out about.....i called them today and she said it does indeed sound like something they can help me with.....as far as staying in my own home and finding work or help with getting disability.....but she couldnt get me an appointment until sept 27th........she said if i was approved that they could help get the interstim implant as well........but of course i have to go thru the application process.....which gives me some small measure of hope........if they cannot help me .....then i am doomed to move out and in with my parents.......which is really complicated and if u want to know more u can email me gloriabono@yahoo.com........but i don't know what i would do with this website......i really don't .. and i thank each and everyone of you that replies and understands what i am dealing with.......i just love all of u........
gloriabono ( kristi)

[CathyKi]

I had a pretty bad rash all over my rear on the side where they did the surgery on the 11th. I thought maybe it was the tape or something but it is still there a week later and it oozes clear liquid and is spreading. Has anyone had anything like this happen and what should I do?

[Sarojini]

You need to see your doctor - it could be an allergic reaction to something used during the surgery, which should be pretty easy to clear up. However, it could also be an infection of the skin and connective tissue known as cellulitis, or any number of other things. You really need to speak with your doctor and let him/her take a look at it so you can get an official diagnosis and proper treatment. Good luck!

[bob04951]

OK
Hub has IC, pretty severe case. I never see my hub cry in the past, but do now. Pain is severe. Have plenty of meds, patch, oxycodone, etc., but he is uncontrolled. Maybe 1 or 2 good days a month.
OK here we are with the interstim controversy. Doc tried to talk us into it back in June 2010 when hub got Medicare disability, he had never mentioned it before (aha he'd get paid even tho it's not approved for IC ???). After research, we declined, and the office staff was appalled, but doc had just gotten back from conference where it was being pushed pretty strongly. Doc basically told us to hit the road, not in those words, but did dismiss us because we refused.
Fast forward to November 2010. Received a phone call from doc's office today, wanting to know how hub was doing on Elmiron (doc took him off in June did not work and it was in his records) and did he want to have the interstim. I asked why? It would help him. He's in horrible pain, I said, and I knew doc was going to do his first 3 interstims ever when he first mentioned it to us. Well, they were not as bad as your hub, she said. So what's the point? Well, it may help him. How? Decrease frequency.
Well if she looked at records she would see doc took him off the Elmiron 6 months ago, and that he suffers from fluid retention and has to take water pills which only aggravate his bladder more, and what good would reducing his urination do, it could kill him with fluid retention. So...doc obviously told her to call to drum up business for the interstim and that ticks me off. I kindly told her no thank you and have half a mind to report him.
This is contraindicated for my hub who also has a clotting disorder and COPD so anaesthesia is risky. HELLO!!!
So happy for those of you this is working for and good luck to you. Just venting so angry with this doc I could scream. Just a warning to always beware.