Does anyone have surges that double them over?

[ibtracy]

Ever once in a while if I bend over to lift something or walk up the stairs or get up from a chair I get this surge from my Interstim that goes down my bum and all the way into my leg. It's starting to happen more and more lately. I hate the idea of calling my uro who put it is because his staff is so rude to me and they won't let me talk directly to him. I had surgery on December 27th and he doesn't even want to see me for 6 months. No post op check. I personally think this guy doesn't know what he's doing.

I just wondered if this happened to anyone else with the Interstim and if so what can be done to make it stop?

Also when I put my remote on my back to turn it up or down it feels like my skin is burning inside. My pocket feels like jello is in there, it's got lots of fluid surrounding my implant, I just know something isn't right.

Something isn't right with alot of things in my life right now. :(

Tracy K.

[dancemomof2]

Yes tracy I have had that surge,nothing big you just have it turned up to high for bending over.

[ibtracy]

I've almost gotten thing turned completely off because of this problem. So I'm thinking it's needs to be reset but am scared to call the uro's office again after how I was treated last time. The nurse basically said I was just calling to get narcotics. I think my accident messed something up, because all of this started after that....

Tracy K.

[codyryonwoodward]

Tracy what kind of surge's are you having? After having back to back rear end collision's I started having problems with my interstim shocking me to the point I would have to turn the unit off. Say for instance I had to have a BM (sorry but this is how it would happen) and I was sitting down my unit would start shocking me in my vaginal area (which is where I feel my stimulant) all the way down my left leg and I would not be able to move b/c it hurt to bad and I would have to turn it off. Which if my remote was in the kitchen and I was in the living room talk about a problem. But before the accident I was having other problems to. When I found another dr who had experience with it, b/c the uro who did it all told me the problems I was having including the shocking was normal, which by the way according to Medtronic's is NOT NORMAL..anyways we tried reprogramming and so forth and it did not help it. So he figures the car accident slightly moved the leads and thats why its not working like it should. To make it stop the medtronic rep tried several different reprograms from spaceing out the waves to turning the pulsing way down. If the surging you are describing is like the shocking sensation this is not normal. I have never had surging will bending either.

I don't no understand why your urologist did not want to see you after you had the unit put in. He should have exam you after the surgery and several times the first year you have the unit in. It's like he was pushing the unit to get the $$$ and let you deal with the problems afterwards. Mine did that after I lost my insurance he did not want to fix the problem or anything I was his 4th patient which bothered me. I was having problems with mine before the accident major toe curling on the left foot, all my toes curl under except my pinky toe b/c its to little. When the unit is off they dont curl. Also all my freq and urgency went back to pre interstim. I dont like the idea that there feels as though there is still fluid in the pocket you should not have that in there. If you doctor will not help you call Medtronic that is what I did they need to be aware of this and that the dr will not help you. I know how hard it is to find a doctor that has experience with the interstim and I am not so sure that going to say a urgent care center now will help if there is fluid in the pocket since its been so long. Is there another dr in the area or some where close that has experience with the unit? I dont understand why these dr will put this unit in someone then NOT help the patient after it is said an done. I feel as though mine was pushed on me. I wish you luck

[ibtracy]

Hey Patricia. That's what I was thinking that maybe it has something to do with my recent car accident that I was in a couple weeks ago. I was hit on the drivers side door and felt myself shift in the seat into the middle console and my Interstim hasn't been the same since. I'm scared to call my uro's office because I don't want to have to talk or deal with that nasty and rude nurse. I used to always get the nice one and she fully understands IC and is always willing to help me out with things but even when I ask for her specifically I get the crappy nurse. :cussing: Heck, when I called and told them that I had busted out stictches and my incision was bleeding quite a bit, the uro himself said it's nothing to worry about - whatever and then proceeded to tell me he didn't need to see for 6 months. No wonder he's driving a 2005 Porshe and I'm driving a car with over 87,000 miles that's falling apart here and there. :biglaugh: Finally a smile and a laugh today. I hardly ever smile - too much anymore - just way too much on my plate at the momento! Do ya'll think I should call that god-for-saken office and try to ask for an appointment or just keep trying to put upwith it. :help: :help:

[ldgb4]

I have pains that are in my right side where my ovary use to be I don't have to be doing anything at all sometimes and I will have the pain and it does double me over. I'm not sure if it is due to having IC or not. I have alot to learn on IC. Lisa

[codyryonwoodward]

Tracy I would call and try to get an appointment with the idiot dr. Just to say you have exhausted all options with him. If he still does not want to help or treat you I would call Medtronic and try to find another dr close by, or as close as can be, and go see them. I was told by my new uro that even the slightest movement of the lead can make the unit not work properly. And I do believe that. I am waiting on my insurance through SSD so I can go see the urologist at his regular practice. I was having to go to the charity hospital an 1 away and he was only there 1 day a week. Thank god Louisiana does at least have that. But can you believe that this is a teaching hospital for residents and so forth and before the new gyno/urologist got there not 1 person could help with my IC. They would come in and I would tell them I had IC and go through all that then they would go look in a book of meds to take. Well duh I have the Interstim b/c the meds didnt work to begin with. I would not even talk to the nurse unless I just had to. They form opions and like b***'s everyone has one. My sister-in-law is a nurse who thinks she knows everything. I babysit her kids after school and my littlest one is sick with a sinus infection, real bad infection in his throat, and a bronchial infection. So she comes in and tells him he has bronchitis. Which he does not have but like I said she thinks she knows everything about illiness and stuff.

I can understand about the car. It makes me so sick to think of the porshe driving around. UGH. My car like yours has 120,000 miles. The door handle on the passenger side is broke off paint coming off. That is one thing I am going to get when I get my SSD back $$$ is a new car...well not brand new but it will be new to me.

[ibtracy]

Well my urologist himself called me this morning and said sorry i've been in pain for the past 2 weeks but if he called in any narcotics this late after surgery the state police would come after him, does he really think i'm this stupid?

As far as the problems with my Interstim, he said he'd try to reach my medtronic rep and within the next FEW weeks, they should be able to see me. I told him I still have fluid in that pocket and that there's still brusing 2 inches all the way around this pocket. He just said I'm sorry and I hope you get to feeling better :mad: . I was about speechless. This guy talked me into this, charged my insurance $37,000 to implant this and this is the after care I get. He never even wanted to see me post-op and said no visit necessary for 6 months. :cussing:

Don't you think he should be concerned about the bladder pain I've been in for 2 months and the fact that my bladder is bleeding, I can see the blood in my urine? I'm shocked to say the least!

Wow, what a day! :headbang:

Tracy K.

[codyryonwoodward]

OMG your urologist just really irrates (sorry for the sp) me and I dont even know him. He does not even care about you does he. :cussing: :cussing: .
I really dont think the police are going to come and arrest him for calling in some pain meds for you. My gyno does this once a month for me. I dont even have to go into see him. If he is treating you I would think he could do this. I would just call medtronics myself. He seems as though he does not even want to fix or look at what he has done. I would love to tell him it is not normal to still have fluid in the pocket and the bruises should be gone by now. I firmly believe he is a total dumb a** who does not fully understand the Interstim process. I assume he knows about your car accident to huh. DUMB DUMB DUMB DUMB. I am so sorry you are having so much problems dealing with him. I think I would try and find someone else now. But if you are like me I had problems finding another doctor who new anything about the stim. I hate this for you. I know life will get better for you I just know it will. Here is a cyber :grouphug: I know its not as good as the real deal but know we are here for you.

[Dusty]

I guess I don't know how to do this "Thread" business on here. It is new to me.
You will have to explain to me how to do it. I tried and it didn't work.
Dusty

[codyryonwoodward]

Dusty yes is really gets hot here in the summer. Our winters have been screwed up the last few years. 75 degrees one day then 20 the next so stupid to say the least.

I agree totally with the interstim thing. I try to be unpartial with the interstim and not to dash peoples hope with the unit. But I also tell people to not only look at the sort term but also look at the long timers and see if they are still happy or not with there unit. When I first got mine I could not believe how great it was, wished I had gotten it sooner etc, etc and so on. Mine worked well for maybe 1 yr. Then my symptoms kept getting worse and came back. No matter how many reprograms I had. And at first my big toe on my left foot would curl under, then all my toes did. Then I started having problems with my bowels and it shocking me to the point where I could not move my leg without turning it off. I am not sure how much is related to the car accident and so forth. But I was having problems before the accident occured. What upset me the most was I had a default unit that would not work and had no doctor anywhere that could help me. I had a forgein unit in my body and no one cared about me and that it did not work. It took 8 months for the dr to get to LSU hospital in Shreveport. All of this b/c I had no insurance. The doctor that did the surgery would not help me and told me all the problems I had were normal. I want people to think about this and what would happen if they lose there insurance what then. What if your unit quit working what would you do, who could handle it for you. I dont think people think about these things, I know I did not and I went through h*** with this thing. Hind sight I would not do this over even a year of it working has not helped the fact that I am sitting here with something that does not work and has not for years. I also lost alot of weight since I had the interstim put in and now it stick way out on my hip area. It is very uncomfortable and ugly to look at. I feel very self con. about it.

I am always thankful when this works for someone. And I pray for them that is continues to bring them happiness and joy. But there are plenty of us out there that are not happy with it. I felt as though I was push to do this. I know it was my choice in the end but from the time I step foot in his office he push this on me. And I cant blame anyone but my self for getting this. I also reported my problems to the FDA's MAUDE watch site. Which is where people need to report there problems to. Best of luck to you Dusty. My problems are no where compared to yours and I hope the best for you.