think twice before allowing interstim

[aliciacaldwell]

hello my name is alicia and i am quite interested in this post i had my trial and my 2nd placement done in october of 09, my main problem always was pain and not frequency it was the complete opposit i could not pee ever!!! my uro demanded i get the stim said it was the only thing she would give me for help never explained a thing to me and the trial was te worst thing i ever went through i swear, i went in for the trial and they decided to tell me i couldnt be in twilight they said they needed me awake and just numb all the research i had done never said anything like that, my fiance said he could hear me screaming from down the hall!! it was so bad that i remember the nurses and my uro pushing my shoulders back down to the table b/c i was movig after they had made th incisions they then decided it was too much on me and put me out!! a 2 hour thing at the hospital quickly camee to an 8 and a half my fiane was so frantic when i woke up and so happy to finally see me, i woke up in extreme pain and vomiting severly they say from the stress for those 2 weeks i was stll not able to move called my uro everyday bawling she said iwas fine it was normal i then emailed her one night i just couldnt move my legs and i had small amounts of puss on my incision on the right side she said you will be fine i will evaluate at your next visit,i couldnt take it so my fiance took me to the closest er the next morning, i had an infection and a hematoma on my spine they then put me in a peramedic and sent me down to the hospital where my uro was and said they would have to fix it since they did the surgery, well my uro came and saw me then said to go home and sh'd see me in 2 days for the final stage that the er i went to lied and there was no infection that she could see, i went and got my final on oct 28 of 09 and i was sent home with nothing for pain at all she said id be fine well i call almost everyday crying of the pain i still have,my toes curl on me constantly, my left side and down my leg is excrusiating, i must have lost weight as well because now the boxs and the wires are both very visible on my left the wire is sticking up so far that i can put my finger underneath it and the skin it is under i have begged my uro to see me and help and she has told me and my pain therapist that i am a drug seeker and she did the implant right and advised me she would no longer give me perscriptions nor will she have a visit with me untill july, even when a bm is about to come about since i also have ibs i get shocked in th rectom area i dont know what else to do but i do advise anyone who is even considering this surgery think very very hard first i regret that decision everyday i took for granted the small amounts of pain i had for the years before the stim for now i can no longer move i now sleep o a futon in my living room cause i cant walk up my stairs i am only 23 and i cant move and be normal please consider all aspects before you get this done to you

[Snowden1]

Oh, my goodness, what a horrible ordeal. Can you go to another urologist to take this thing out? I cannot believe how this uro has treated you - how horrible. There has do be someone (look into uros who do interstim) who will take this out for you. Unfortunately, I have been hearing more bad then good things about these things. Can you at least get it shut off? I would actually consider getting a lawyer on this one. I would call her office and DEMAND that she speak to you. I would tell her that you are NOT going to ACCEPT the way she has treated you and you are seeking legal counsel. Tell her you want it shut off "immediately." I would actually still get a lawyer - I don't say that often, but I think you have a malpractice suit. I would contact another Uro - research the best to get that removed. Then get a statement from them. Also, get all your records from E.R. and have ALL your records from her office sent to you. You have the right to get them, but you may have to pay a small fee for copies. Tell them you want them all, films, pictures whatever is in there. Then find a good lawyer and they'll do the rest.

[kadi]

Hi Alicia,
I'm so sorry for what you're going through. I would also seek legal advice as to what to do next. Definitely get a copy of your medical records, preferably without telling them first you are going to see a lawyer. Then I think Theresa's suggestions make a lot of sense. I hope that you will find some help & relief very soon,

[Julie B]

If you go the legal route, talk to the attorney first. Have them supeona the records. If you ask for them, who knows what will happen. If you decide to do this, don't wait. You will want everyone's memory as fresh as possible.

I am so sorry you are going through this............

[aliciacaldwell]

thank you so muchto all od you for reading my post and replying, it is so nice to see that i am not the only one going through all of hese problems, i actually went to the er last night because i was getting shocked so bad and couldnt move the doctors gave me some pain meds and also told me that i need to get this removed asap that the wires were slippin so they even said that i need a new uro and they said that they couldnt believe how badly those leads were showing h was actually able to slip his finger underneath the skin and wire it sticks up that far so i think i am deffinently going to get those messages to her and i have been doing research on docs around the pa area and im not sue but if anyone can think of one around thi area it would be greatly appreciated thank you for all the support you are rendering to me

[kadi]

Hi Alicia,

I just talked with Jill Osborne, ICN President. She has done Interstim support for over 10 years. Her number is 707-538-9442.

What you are going through is abnormal and needs to be reported to the company immediately. Here is the number for Medtronic patient services. Please call them immediately & tell them what is happening. They will intercede on your behalf to your doctor. 1-800-510-6735 (toll free), Monday-Friday 8am to 5pm Central Time.

Wishing you relief soon,

[Elaine64]

OMG hon...I am so sorry.

I am in the middle of a Stage two Interstim Trial, and I have the wires sticking out of my back too.

Mine was put in for frequency, but since I have had it installed, I have urinary hesitancy, more frequency, etc etc etc. My Dr. said it may take 3 weeks to work but I talked to my Metronics rep on the phone today who said that the longer you go without it working, the less likely it will work. I also have a lot of urinary hesitancy, and he said that will most likely not go away.

My Dr. wants me to give this a 3rd week. I am WRACKED with anxiety that even my xanax cannot control. I just want to stop urinating.

I'm so very sorry for your suffering.

This disease may not kill us physically, but it certainly kills our joy.

Wishing you all the best...

Cathy

[some_guy]

Wow horrible, I agree with most other replies, get an attorney and put a stop to this kind of treatment.

[Elaine64]

hello my name is alicia and i am quite interested in this post i had my trial and my 2nd placement done in october of 09, my main problem always was pain and not frequency it was the complete opposit i could not pee ever!!! my uro demanded i get the stim said it was the only thing she would give me for help never explained a thing to me and the trial was te worst thing i ever went through i swear, i went in for the trial and they decided to tell me i couldnt be in twilight they said they needed me awake and just numb all the research i had done never said anything like that, my fiance said he could hear me screaming from down the hall!! it was so bad that i remember the nurses and my uro pushing my shoulders back down to the table b/c i was movig after they had made th incisions they then decided it was too much on me and put me out!! a 2 hour thing at the hospital quickly camee to an 8 and a half my fiane was so frantic when i woke up and so happy to finally see me, i woke up in extreme pain and vomiting severly they say from the stress for those 2 weeks i was stll not able to move called my uro everyday bawling she said iwas fine it was normal i then emailed her one night i just couldnt move my legs and i had small amounts of puss on my incision on the right side she said you will be fine i will evaluate at your next visit,i couldnt take it so my fiance took me to the closest er the next morning, i had an infection and a hematoma on my spine they then put me in a peramedic and sent me down to the hospital where my uro was and said they would have to fix it since they did the surgery, well my uro came and saw me then said to go home and sh'd see me in 2 days for the final stage that the er i went to lied and there was no infection that she could see, i went and got my final on oct 28 of 09 and i was sent home with nothing for pain at all she said id be fine well i call almost everyday crying of the pain i still have,my toes curl on me constantly, my left side and down my leg is excrusiating, i must have lost weight as well because now the boxs and the wires are both very visible on my left the wire is sticking up so far that i can put my finger underneath it and the skin it is under i have begged my uro to see me and help and she has told me and my pain therapist that i am a drug seeker and she did the implant right and advised me she would no longer give me perscriptions nor will she have a visit with me untill july, even when a bm is about to come about since i also have ibs i get shocked in th rectom area i dont know what else to do but i do advise anyone who is even considering this surgery think very very hard first i regret that decision everyday i took for granted the small amounts of pain i had for the years before the stim for now i can no longer move i now sleep o a futon in my living room cause i cant walk up my stairs i am only 23 and i cant move and be normal please consider all aspects before you get this done to you

Why is your Uro not seeing you until July? Is THAT how long she wants you to do the trial? I was told it was a 2 or 3 week ordeal.....:confused:

[aliciacaldwell]

no i already had my trial and the whole shabam its just they are saying the wires slipped inside but my uro wont see me till sumer she said she should only have to see me every six months, i hate having to live my life like this and im happy all of you can understand that, i always thought i was too young for anything to happen to me like this but i know now it can try to defeat any of us but im trying my hardest to prevail, i think i really need a new uro for that to happen

[kadi]

Have you called Medtronic yet? I'm hoping they will help you, especially since you now have the ER records saying you should not wait until summer. Please call them!
Hoping things will get better soon for you,

[Snowden1]

alicia,
Please do call the company. Or try call Jill, maybe she can help be the go between in your situation. You need to get some help. Don't wait, please.