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My experience with InterStim

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  • My experience with InterStim

    I want to share my experience of InterStim with you. Not about how my doctor did the procedure or if I am a success. It is about my emotional up and down and struggle in the past 4 months.
    As some of you know that I am in the InterStim clinical trial here. I am not as lucky as some of you who can ask the doctors how many patients he/she has done. My doctor has never done InterStim before. But the Medtronic rep told me my doctor has finished the training program. Besides, I had checked with a neuro doctor in my church. He said my doctor is an experienced surgeon and I can trust him. My first surgery was done on 10/22/2003. It was a staged trial which required a surgery and overnight stay at the hospital upon my doctor’s request. My husband said he was in the waiting room for 5 hours (from 6 pm to 11pm). I didn’t know anything about the surgery because they gave me a full anesthesia. I woke up feeling sore in my back. I was so tired and scared because my eyes were hurt so much that I couldn’t open them. After the eye doctor checked my eyes, I was sent to the regular patient’s room where I cried out asking my hubby to take me home. The next morning, I felt better from the side effect of anesthesia. My doctor and the Medtronic rep came and told me and my hubby the surgery was successful. Then I was sent home with a box hooked on my back.

    During the one-week test period, the Medtronic rep called me every day to see if I was doing OK. Actually my doctor called me twice at home asking me to continue the antibiotic treatment for the surgery. He was very nice to me and said a lot of encouragements. I personally think the support from a physician is also important in InterStim treatment.

    My frequency went down from 18-20 times a day to 11-12 during the trial. I didn’t think it was a big improvement because I was able to go below 12 times in good days before InterStim trial (though my good days were about 4-6 days a month). I had to admit that I hesitated when it was time for the permanent implant. I was only allowed to have a week’s trial so not given enough time to think about it before the second surgery. Both my doctor and the rep thought the trial was a success. They didn’t persuade me to have the permanent implant, but I felt I did so to meet their expectation.
    My second surgery was on 10/31, about 10 days after the first surgery. It is not easy for anyone to have two “open” surgeries in such a short time. When the doctor injected the anesthesia into my arm, it was too painful and I couldn’t take it so I cried out. The doctors and nurses were shocked by my response, fortunately the anesthesia kicked in in a few seconds and then I fell asleep again.

    The second time I woke up with more pain on my back. I was sent home the next day. My stimulator was turned on the same day. I guess Medtronic wanted to see the results as soon as possible. My recovery was not bad because I was able to take a train to work after 10 days. However, I didn’t see any improvements for my frequency. I still peed a lot, sometimes up to 30 times a day. I was starting to wonder if it had made my frequency worse. I was so nervous and anxious cause every day if I went twice in an hour, I thought it was not helping. My parents called asking if I did better after the surgery. I didn’t want to lie to them but didn’t want them to worry about me so I just told them I was OK. This kind of stress came not only came from my parents and spouse, but also from my doctor and the rep. I knew that I had to be a success so they could get InterStim the permission to be imported to my country. I had a lot of stress and didn’t know how or where to relieve them. It was such a big burden for me because every day I was thinking if I made the right choice. I kept asking myself I did the right choice. My friends told me if it was not working, I had nothing to lose. I didn’t pay anything for the surgery or the device. However, the emotional stress was as much as the financial part if I had to pay.

    I know some people with success said they would definitely do it again without a second thought. If I know it would turn out to be a success, of course I would sure do it again. However, InterStim is something that you have to try yourself or you won’t know if it is going to work on you (seems like every treatment is the same, right?). I just want to suggest those who want to try this treatment. When you are doing the research of InterStim, also ask yourself if you can take it when it turns out to be a failure. I know we all want it to work so badly. In fact, I even told my doctor and the rep that I wanted it to work more than they did. I am sorry for those who are not helped by InterStim. I know how you feel because I went through 4 months without seeing any improvement. I wish you the best in finding the answer to your problem.
    Sorry for the length of this article. Just want to respond to Jess' post, more experiences, less opinions.

  • #2
    Peiti,

    Thank you for your very HEARTFELT story. You've made some very good points.

    It bothers me that you felt pressured to accept the full implant because that's something that I've heard from the earliest days of neuromodulation. In fact, in one case, a patient told me that she lied on her voiding diary not to keep the implant, but to keep her doctor happy. That she was part of an approval study though was huge. She falsely reported data that may have been used during the approval process and could have jeopardized many more patients.

    Shortly after that, I personally called the FDA about that and they said that it happened in all research studies and that there was no way to prevent it. I was very disappointed.

    I don't think that you, or any patient, should feel pressured to do anything. If anyone does try to pressure you (especially a company rep), I hope that you will file a complaint with the company and/or government.

    Thanks again for your story. BTW.. I'm going to move this to the considering it board if it's still active. I don't remember if I shut it down or not.

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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    • #3
      Peiti,
      I also wanted to say thanks for your story. I think it is so important for every story to be told. This is a big decision for people and they need to read everything they can.

      Hugs,
      Jolene

      "Life is what happens when you are making other plans" John Lennon

      IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

      Information for Patients can be found here.
      http://www.ic-network.com/patientlinks.html


      Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




      Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

      "IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."

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      • #4
        NOPE I don't think you should feel pressured, I read Peti's post and did not see were anyone pressured her (hugs peti) I think she wanted it to work so bad she didn't know what to say.. peti I hope I am correct and apoligize deeply if I am wrong..
        OK back to being pressured... NO ONE has any right to pressure any one about anything, I was talked to by someone that was pressured into not doing the interstim..... thats wrong.... I know who they were and it was wrong, just wrong.... When you pressure someone, you cause stress, aggervation, and hurt feelings... that stress turns into doubt, fear, and ends up causeing a flare.... The people who done this really are not friends or supportive.
        Brat

        Peti I read you post in success interstim stories. I am so glad you got it programmed right.. if you every need any one to talk to I am here.
        'The will of God will never take you where the Grace of God will not protect you.'

        Comment


        • #5
          Peiti,

          I am agreeing, more experience. I am a bit drugged this morning yet, but I think that's what I said in my other post? The only way you can learn through interstim is through experience and research? I don't think anyone gets a true sense of the InterStim unless they have gone through it themselves.

          I am sorry that everything didn't go smoothly, but you were the first patient, so I'm sure that was expected to have ups and downs. Not to say that it's right, no surgeon should practice unless he truly knows what he is doing!!! Responsibility lies on that of the doctors.

          Anyway, I can just tell by reading, the very big difference between our surgeries. I went home the same day on both surgeries, and everything went smoothly. The right doctor and rep make the world.

          My rep is terrific, and so is my uro, they didn't want to go through with the implant until I had a great improvement. They wanted at the very least 60%, and even then it was going to be iffy.

          Ok point to my rambling you may ask? Experience. Everyone's different, every uro is different, every rep is different. It is not the product or the patient that fails, it is the uro. The product is a great idea, but there are just no guarantees in life. We're all on the InterStim journey for a reason: traditional IC treatments have failed us (I'm not sure what you have over there for treatment, but personally for me DMSO, Elmiron...all failed me, and yet they are highly praised). So let's stick together, make the difference in the lives of people who are gonna try the Interstim.

          You can really learn a lot from experience...the reason I am against the surveys, is because what if you get people who never had it signing up for it? Granted, I know nothing of how it will be done, I just worry that it will be unfair to those who are considering it. If there can be a way where only those who had it done are assured they will be doing the survey, then bring it on!!!

          Have a great day everyone,
          Jess
          Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

          Comment


          • #6
            I thoguht this would be a great post to bring back up ... I haven't seen peti post in a long time.. has any one hear from her.
            Brat
            'The will of God will never take you where the Grace of God will not protect you.'

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            • #7
              I went to see a new urologist today. I was excited and thrilled, that possibly she May have some new ideas for me. Well, she did in a way, the interstem. That was all she could talk about. She didnt listen to how I felt about things and told mie it was hardly risky at all and very easy to do etc. etc. Although pain is my main complaint she said she had a patient get better with it and she just had pain. I have alsayw sbeen a little weary of puting something in my body like that. I felt she was sugarcoating it to an extent. Where can I get research info on it? I would like to be able to talk with her from both sides of things. By the way I also have to vent about something: WHY CAN'T DOCTORS TAKE THE NECESSARY TIME WITH US AND NOT ALWAYS BE ON THERI WAY OUT THE DOOR??? AHHHH, IT MAKES ME SO MAD THAT??? hOW DO SOME OF YOU MANAGE THIS??

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              • #8
                interstim is not for pain at all.. please go here.. www.interstim.com you can request info and a dvd/video to be sent to your home.. This is your decision not hers, I researched almost 2 years before I went back to my doc and said lets do it. A doctor that don't want to listen to you just isn't understanding enough to consider how you feel. My doc told me about it, and I researched it, he never brought it up again until I asked him. You have to want to do this and understand there are things you no longer can do, like an mri, heat therapy.. there are pros and cons.. research and take your time..
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  To Cherie...

                  I have experienced doctors like that with their hand on the door, and I know how it is. Now when I go to the uro I am ready to whiz out the door and he is the chit chattey one. If they are running out the door...just say the important words, "I have some concerns about...." This will stop them in their tracks.

                  Comment


                  • #10
                    Hi, I haven't been here for a long time. I read the message and found out the first one was written almost two years ago.

                    I want to report my current situation here. First of all, hi everyone. I am doing great. I just celebrate my 2 year anniversery of the interstim implant two months ago. In the first and half years, I needed to have a reprogramming every 2-3 month. I didn't know why it just stopped to work. My representative was not happy because I called her often. This june, she set bi-polar combinations for me (I got two stimulations from just one IPG). Since then I have been doing great. It's been six months, and I don't need any reprogramming.

                    I am so glad I can have my life back. Everytime, I looked back to the past 10 years, living in a difficult life, i was so grateful.

                    I am not on any oral medication now. I know I am not supposed to say that interstim helps relieve the pain here. But it does help me a lot on pain. Just think of that, if the lead is connected to the nerve that controls the bladder on frequency issue, it should be able to control the pain too. I know it is a complex issue, because the pain may have different causes.

                    I still have flares sometimes. probably once a week. Usually it was frequency. But it went away in half day.

                    Wish everyone have a peaceful Christmas.

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                    • #11
                      back Peiti! Thanks for the update!
                      Faith, Hope, and Love,
                      Katrina


                      I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                      IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                      or find me on facebook http://www.facebook.com/kat671?ref=profile
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                      [email protected] please contact me...I am here to help!

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