So how bad does the surgery hurt?

[ICLori]

I'm getting kind of freaked out now about stories I am hearing about the interstim surgeries. I am hearing people say it was absolute hell, the worst pain they've ever felt, screaming in pain.

I'm probably going to do the interstim, so I need to kind of mentally prepare myself for what to expect.

Please, can anyone share their surgery story - how much pain, what type of pain (sciatica pain?), how long I will be in pain, etc.?

Thank you all in advance for your help.

Blessings, Lori

[rjyoon]

As far as my experience, it was not that bad. Yes, I had a trouble sitting down & getting up afterwards. I did use a little Vicodin, but not much. I didn't have nerve pain, more like someone kicked me very hard in the butt. You can probably still find my posts about my surgery. I don't remember how long the pain lasted, but it wasn't outrageous.

[Teri]

I have had the surgery twice. With the first one, I was ready to get on the lawn mower and cut grass within the first week. The 2nd one was a nightmare and I ended up having to have the device removed. Go into it with a positive attitude and you should be ok in a week or two....remember, your dr will provide you with pain medication and probably something to help you sleep for a few days (that's what mine did)

wishing you the very ver best~

[ICLori]

Thank you, RJYoon and Teri! I appreciate both of your replies very much. Thank you for reassuring me. Hopefully I will get through the surgery.

Teri, I've read your story on the boards and I am just heartbroken for you. And to be honest, also terrified of trying the Interstim...although I am typical of most patients in that I think to myself "oh it won't happen to me, it hardly ever happens..."

It's just a sucky position to be in. I don't feel I can live with these symptoms, my life is being stolen from me, I can't tolerate pain meds or any other meds because of my bladder, nothing works. I am still going to look into trying to get a referral to try the Cyclosporin therapy first (which is in itself very risky really, immunosuppressants are nothing to fool with), but if that doesn't work, Interstim it is. And all I can do is cross my fingers and hope that what happened to you, won't happen to me, that I will be one of the lucky ones. I keep thinking, how must you feel when you see posts like mine, where people are considering the surgery that left you worse off than before? And I feel almost ashamed after reading your story, to say, yes, I'm scared, but I still want to try on the hopes that it will make me better not worse. A terrible gamble is what it is. But I want some chance of getting my life back - if I do nothing, I have no chance at all.

I wish more than anything, a doctor could help you, could stop the pain from your spine and the bladder symptoms also. After reading your story, part of me wanted to just do bladder removal instead of trying Interstim, but the Army docs aren't too happy about that idea at all. To be honest they seem to think there are just positives to Interstim and no negatives.

I know I am taking a terrible gamble, to be honest I am scared to death but I can't bear to live with the symptoms I currently have. I am in a flare almost all the time, peeing 40 times a day/night, etc. You understand the desperation I feel.

I feel so bad for you and wish so much there could be something done to help you.

Blessings, Lori

[Teri]

Lori~please remember that originally I had great results with the first surgery. I would never want some one to be afraid to try something just because it ended badly for me....you have to follow your heart~

[ICLori]

Thank you so much, Teri. I just don't know what to do - it's either Interstim or bladder removal, I'm not thrilled about either prospect to be honest.

Blessings, Lori

[Teri]

Lori~before having your bladder removed try the implant. If it doesn't work you will know that you've tried everything possible. With mine, after the 1st one quit working I had another revision trial.....the device did not work but I had the surgery completed because I had to know in my heart that I had tried everything possible. I am at peace with it now.....

Take things slow, go at your own pace and don't let a dr pressure you into a treatment you aren't ready for yet

hugs~

[ICLori]

Thank you so much, Teri. I wish I could get my husband to understand why I would be willing to have a risky surgery like this and get my bladder removed if it doesn't work...non IC'ers just don't "get it" I think.

Blessings, Lori

[Peggy Anne]

I'm just as scared as you Lori - I'm getting my temporary one done on 10/1 and the perm one (if it works) on the 8th. I met with the Medtronics rep for 2 hours drilling him with questions and repeating a lot of what I read here. I really wanted to talk one on one with someone that has it, but with the Hippa laws and such, they wouldnt let me. I felt much better about my decision to do this after talking to him. My husband doesn't understand either, but its not about him, its about me. I guess Im the "perfect" candidate for this as I don't have any pain, just frequency and urgency. My biggest fear is that this will "start" me having pain, and I will end up worse off. So far both the rep and my doctor have never heard of that happening so Im hopeful. If I had to decide to do this or have my bladder removed, it would definitely be the interstim. That is reversable. Anyway, I will post how I did after I get mine. I just have to be positive about it and so do you Lori.
Peggy

[Babs RN]

Peggy,
Which part of Las Vegas/Henderson do you live? We used to have an apartment up in Sunridge since my husband was due to deploy in July. Well, 3 days before our furniture was due to be picked up-they delayed the deployment until November so my 4 year old and moved back to CA. My hubby grew up in Vegas(Bishop Gorman 1989) and my brother-in-law graduated from Chapparal in 2000. Anyway, I am in Las Vegas all the time and we could go to lunch. My inlaws live in Las Vegas, over by Russell and Pecos. I hope you are well, PM me if you need some moral support.

Hugs and :kiss: ,
Barb

[Peggy Anne]

Hi Barb :hi: : I live up the street from Green Valley Ranch & the District, by Bob Miller Middle School - pretty close to your in-laws. We've been out here for 4 years now and love it, I would never want to move back to the Bay area. Please let me know the next time you are out here, I would love to go to lunch. In the time I've had IC, I have never met anyone that has it, except on this website. If you want to chat more, you can email me at peggy@roldaninc.com or PM me - I'm not too sure how thePM thing works but I'm sure I could figure it out! I just may need that support after I get my interstim :confused:
Peggy

[ICLori]

Thanks everyone...Peggy, good luck on the Interstim....keeping my fingers crossed for you that the trial will work well and not be too painful or hard!

Blessings, Lori

[Peggy Anne]

Thank you Lori - I just want to get it over with, the wondering and not knowing is driving me nuts! It's not like the other times when I went in for a Hydro or instillation, this time I'm coming away with something that will continually remind me that there is something wrong with my body. I don't think I am ready for that - It will definitely be wierd to have a remote control for my body :yikes:

[ad8123]

This may be silly, did anyone have hypogastric plexus block befor the interstim? Is that part of the trial? I am having one next week and it may lead to interstim, so does the block hurt? I am a bit scared too.

[tigger_gal]

If you read my patient story at the bottom, it has my interstim stage trial and implant... the stage was no big deal.. and the implant was ok... my bumtt cheek hurt a few days....
Brat

[Amanda]

My experience after my surgery was not too bad. The worst part if the whole thing was that I had a cathader in for the night ater surgery, which made me miserable. I was up all night and cried most of the time. I was lucky that I was only 17 and on the pediatric floor; therefore, my mom could stay with me. As for incisional pain, I hardly felt it. I remained on my regular pain medications other than when I was in the hospital and had the cathader in.

As for complications, I had one. A few days after surgery I felt something wet on my back and it was blood. My incision had opened less than an inch, but it was quite deep. I was horrified about the riskof infection. I called my surgeon and he said to come in the morning and see his associate. When I saw my urologist's associate, he said to clean it a four times a day with a Q Tip and hydrogen peroxide and let it close on its own, which it did.

[Peggy Anne]

Thanks for the repy, I'm getting more nervous by the minute, I get mine on Friday. I guess i will just have to wait and see what happens and hope for the best. I usually do good during surgerys, just not too well with pain meds and anesthesia.

[tigger_gal]

Peggy, 3 days after my surgery for the stage trial, that I had for 2 weeks.. I had a 3 ffot wire hanging out my butt.. and my husband goes and buys me a puppy.... got him home and went and got his brother... So I house brooke 2 pups like that.. not to mention the yard wasn't fenced at the time...
you will be fine.....
Hugs
Brat :thumbsup:

[Peggy Anne]

Oh how sweet, I bet that cheered you up but make you tired - i think I'm still training my Pom, he thinks he's a cat and the cat is trying his hardest be to a dog! Thanks for the encouragement, I'm being so optimistic about this I have shopping plans with my girls for Sunday! Do you ever fly? can you go through the normal security at airports or do you have to do something special? thanks!

[tigger_gal]

sorry don't fly. but you will get a card... stating you may set off there system.... I got reprogrammed several times at best buy...
Brat

[Peggy Anne]

The rep from Medtronics told me that only happens if your "magnets" are turned on and that they will not be putting any magnets in me, or if he does it will be turned off. The sole purpose for the magnets was to shut down the interstim in case of problems but the newer ones are programed to do that anyway. I do WAY to much shopping, I would be getting "reprogrammed" daily :lmao: I will keep you updated on how I do Friday, thanks for your help!
Peggy

[tigger_gal]

I have had mine in since April 2003 so a year and a half..... They shut off my magnets after a series of reprograms.. and on a cycling... on for 30 seconds and off for 10......
best wishes
Brat

[ICLori]

Hey, Peggy, just wanted to wish you good luck! I'll bet it won't be so bad! I asked the urogyn about the surgery and explained my fears, and he looked totally bewildered like, "why would anyone think this surgery is painful?" and he said it didn't carry any risks beyond the normal surgery risks, etc. So I felt really reassured after talking with him and I'm not afraid anymore.

Good luck, I'm keeping my fingers crossed for you and I'm looking forward to a post from you soon saying it was no big deal, didn't hurt much, and the stim is working great for you, etc!

Blessings, Lori

[Peggy Anne]

Thanks Lori - sorry it took me so long to get back to you. Well I've had my Temp Interstim for almost a week now and I'm not sure if its working. They re-programmed it once and it seems to be doing better. Not the 50% they are looking for but maybe about 30%, which if left up to me, is good. when I first woke up they kept asking me if I felt the "tapping sensation" - I agreed but then I would have agreed that I was a 2 foot green person if they had asked.... I mean I just woke up from being under :rolleyes:

I just don't feel that "tapping" they keep telling me that I should feel. If I turn it down I don’t feel anything, If I turn it up too far it hurts (like a sore muscle kind of hurt). When I sit down to go it feels like my bottom is vibrating - :toosh: And occasionally I feel a electric current go down my leg or arm like its numbing it or something. But today I have only gone 4 times so far and that is definitely more than 50%.

What did you feel Brat? I really want this to work, but I don't want to get it just because of what I WANT to be happening. I need to be honest and if its not working, deal with it. The medtronics rep gets so embarrassed when I ask him things thats it not too helpful and my messages to the doctor keep getting sent to her nurse, who hasn't a clue.

They are so adamant about that tapping feeling and I just don’t feel it. Tomorrow at 1:00 I go in to either get this damn wire taken out of my back for good or get the perm interstim put in. Big decision. Plus the insurance will only cover it if there is a 50% improvement over 3 days. I'm out of days, and spent 4 programmed wrong. So I have to lie just to get it covered. I honestly think its working, but I'm just not positive.

Also Lori, the discomfort is mainly where the stitches are - where they put the wires in - very sore - and the area where the wire comes out is also very sore and very, very creepy. This wire goes into a cylinder and a heavier wire comes out the other end of the cylinder. This has to be taped to my body and then hooked up to an old-fashion pager looking thingymajiger.... Very annoying to say the least. So I am looking forward to it being gone either way. Have you decided if you are going ahead with yours? Take care and I will update you guys on Monday. Thanks for the thoughts! Peggy :hi:

[tigger_gal]

Peggy,
I have had my interstim since April 2003, there are others who has had there's longer.. I personally love mine. ALL treatments vary from person to person.. my uro top ten in the us and internationally has had great sucess with putting in the interstim.. (http://www.birminghamurological.com/physicians.shtml#peters)
this site has acess to other sites ....
They should not have had your interstim on coming otu of surgery.... I and many others did not turn it on till the following day.. but .. different doctors do different things..
Rule of thumb.. you do not have to feel it to have it work.. I have mine on, but, I do not feel it at all... yes it hurts if its to high... tell your doctor about the numbing.. all that may be is needing to de set differently.. there are 6 leads to choose from.. (at least there is on mine.)
I was going 30 times a day and down to 15..... I was pleased.... so I went for the implant... My surgery did not hurt.. the site was painfull of course they cut my butt open... its going to hurt..... but it healed well and I sat on my left cheek for a few days... but a sore butt, was better then peeing ever 15 mins.... It my dr told me that it would only help my urgency I would have done it.....
ok ask your self.... am I happy going 4 times a day? if the frequency goes up to 10 would I be ok? How do I feel since I have had this trial.. happy.. sad.. felt morefree to do more without having to know where the potty is? Do I sleep better with it? tell your self.. this is my desison... not any onee elses....
I don't feel the box either... it did not mess with my periods.. except the first 2 because your body has been traumatized.. its ok... my bowls weren't outta wack from it.... Do not let him put it in your stomach....
ony get this if it is working for you! only get this if you are completely satisfied....
if they ask do you feel it say no I don't have it high enough to feel it and if I put it too hugh it hurts... Why only a 7 day trial??? I hade a 14 day trial... weird.. If you feel like its improved to you then go for it.. you know in your heart if its working.. don't go by what others say.. if I did I would have never gotten it....
when you have the device put in it will be on the oppisite side of where the wires are.. that will prevent any type of infection.... lol have to agree pretty creepy seeing wires hanging outta your butt..
in the end peggy.. this is your body... your descision... only you know if you have had improvement. and I am wising you the best of luck and stand behind your desicion either way..... keep me postedd
Brat

[Peggy Anne]

I do have IC, but my doctor is using this to treat my Frequency and Urgency. As I don't have the pain associated with IC, she thinks I am a perfect candidate. I cannot take meds, and I have tried everything else to no effect. It worth a try...