Announcement

Collapse
No announcement yet.

nerve stim being blackmailed into by pain dr., help

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • tigger_gal
    replied
    bcarroll I moved your post here http://www.ic-network.com/forum/show...122#post289122

    Leave a comment:


  • bcarroll
    replied
    Tens

    [are you saying that you have had the tens unit implant and it does not help with pain? i am talking to a dr. about this procedure. i do not want to have it done, i have been newly diagnosed with this problem and i do not feel as if they have tried all possible things.

    Leave a comment:


  • DonnaReagan
    replied
    Janice --

    How are you doing? I just read all the posts re: your pain doc & the interstim controversy. How did that work out?

    I'm asking not only because reading your posts made me angry at the power that these docs think they had over YOUR body! Sometimes..... stuff like that makes me want to scream.

    I just started seeing a pain doc. He has me on meds now but mentioned that he wanted to try some nerve blocks at my sacrum and then eventually do an interstim. I didn't say much about it at the time - because I have yet to do my own research. I have spoken to one person about her experience with interstim. She said it worked fine for a few months then it started shocking the crap out of her like it was an electric cattle prod.

    Just wondering what your outcome was...

    I'm wondering if I'll find myself in your "boat" before too long.

    Hope things are better for you now.

    Hugs & prayers,
    DonnaReagan

    Leave a comment:


  • Janice
    replied
    Dear DeDe YES!!!!!. This would be so much help to me. You probably can imagine how much. I truly would appreciate it. I am in a terrible position and you and others writing letters stateing that it has not helped your IC pain I think would go a long way in helping me convince my dr's that I should have the right to refuse to have this done to my body.. I do not want to have this done.I have the letter from Medtonic's stateing that it is not FDA approved for IC pain but I fear that will not be enough for my dr's, I feel I should be able to refuse to have this done. I feel trapped. I think this is so wrong what these dr's are doing to me and the help you have offered me is so great of you. I don't think I could ever thank you enough for doing this. I would love for you to write me a letter saying it has not helped your pain and also if anyone else would do this of couuse the more the better as far as convincing my dr.'s
    My email address is [email protected] If you would like me to write to you personally I would love to do that if you send me your email address. Whatever you need I will do. Thanks again DeDe. I will be looking forward to hearing from you. Thank you so much for doing this for me. Lots of Hugs, Janice
    [img]biggrin.gif[/img]

    Leave a comment:


  • dedeash
    replied
    Janice
    How about letters from people who have or have had the implant testifying that it did not help their pain? I would be willing to write one and I could put you in contact with about 30 other women....who could attest to this...and I am sure that you would get even more referrals from them.


    Hugs
    Dede

    Leave a comment:


  • Janice
    replied
    To all of my friends here on the icn. I received an email from Medtonics today. It was long and informative. The only problem is that it only has one line about IC pain and it was like an afterthought. It says" It does not have FDA approval for IC pain." That's refering to the interstim. I wonder if that will be enough for my dr. to be convinced that this is not the thing for me. I tend to think that all of these 3 dr's will still think I should try to have this done anyway even though I feel it is not the right thing for me. I have a lot of pain and that is what I want to deal with and have successfully up until the pain dr. would not treat the pain anymore. I started telling the pain dr. that the medcation was not working as well over a year ago but he just would not budge in his decision that he would not increase my medication or give me anything for breakthough pain. I just don't understand this because it had worked so well for me and I was living a life with the least amount of pain I had in many years. [img]confused.gif[/img] I am going to see the pain dr. that I had been seeing for the last 4 years tomorrow. I am going to give it one more try to see if he will be my pain dr. again. He has this interstim idea in his mind now and I don't know if I can get him to realize that this is not the right thing for me. He just does not seem to want me as his patient and I feel that this interstim idea is just his way of ridding himself of me. The problem is he has dragged my primary care dr. into it now and has also influenced the new pain dr. that my primary care dr. had referred me to that this interstim was this great answer for me and I do not know if I will be able to get any of them to see I am not a good candidate for this surgery. The pain dr. that my primary care dr. has referred me to will not be my pain dr. anyway because his rule is he will not treat anyone with pain medication unless they are on some kind of therapy and he feels the interstim is the therapy I should do. I don't believe he would be my pain dr in any case anyway so he is out of the running for being my pain dr. anyway. I think I will have to go out of my HMO network to find a pain dr. I am so frighted that this will never happen and I will be in this pain forever. Thanks to all who have written to me and have given me courage to try to stand up for my beliefs and thanks for the ideas you have given me to try to solve this problem. I will try some of the other things if I need to. Thanks again. You all are the best. [img]cool.gif[/img] Hugs, Janice

    Leave a comment:


  • buffy
    replied
    Janice,
    As a fellow IC'er with severe pain, I too have had nerve blocks and the interstim suggested as treatment for pain. This board has saved my butt, in more ways than one. I said no! The pain clinic agreed that they couldn't guarantee that either one would work. I now have a script for Norco 5/325, 4 per day. I had to sign a contract, saying if I developed tolerance, and needed to get my dosages increased, I am out of luck. I treat them like gold, and only take them when I think I am about to go insane. Great way to live, huh! I love Donna's idea! It would be a good idea to include information from Medtronics saying interstim is not for pain. The more information you have to back yourself up the better. Don't be bullied into having surgery that probably won't help you!

    Leave a comment:


  • lucia
    replied
    you are right Teri. Janice, I'm shure that there are a lot of dr's who are proffessional, and will work with you!!!!!!
    I don't have IC, I have urge incontinence and the interstim, but I had a doc who told me, I don't know what else can I do for you, you should seek someone who knows more about incontinence...
    Why did he waited almust 1 yr. to tell me this? !!!!

    Leave a comment:


  • Teri
    replied
    Hey Janice~~~~~~~~what does your uro think we are???????? WE ARE REAL LIVE PEOPLE who post on the internet and the reason they get mad is because they don't want us sticking our noses into our own treatment....god!!!!! that just pi$$es me off sooooooooooooooo bad!!!!!!!!!!!!
    You can give her my name, address and phone #, she can have my credit report if she wants if that will convince her that I'm a real live person, I'll even share my medical records and perscription information!!!!!!!!!!

    I do have some good news to share...on March 29th I did start getting some results with this new hookup on my interstim. My frequency is way down. Still holding my breath cuz it's taken so long to get any results this time but my pain is still off the charts [img]rolleyes.gif[/img]

    Leave a comment:


  • Janice
    replied
    Dear Donna,
    Thank you for your very informative post. Those are very good suggestions and I will try to do it. I will talk to my primary care dr. She has been telling me that this last pain dr. needs to say to her that he refuses to treat me. I think he pretty much has. He is saying he will not treat me and that I have to go have the interstim done. I will approach it from the prespective that you mentioned with her and see what she says. Thanks so much.
    Hugs,
    Janice

    Leave a comment:


  • Janice
    replied
    Dear Teri,
    Thanks for the grin you put on my face and the loud laughter that could be heard clear down my street. It has been a while since any laughter has been heard by the walls in my house. I wonder if my house will survive!!!!!!!
    I am going to print out your message and show it to my primary care dr. as well as the others that I received here. I won't have any names on them. I told my dr.I had things to show her and if she were going to be fair she would look at what information I have about this treatment also and not just listen to what the pain dr's and uro are saying. She replied that the things that I had were from the internet and that the pain dr. had real live people that were saying that their pain was helped. She did agree to look at what I want to show her. I look forward to what the uro. has to say about this when she calls him. I do not want to be forced into a surgical procedure that I had decided quite some time ago not to have done, I am glad if it has helped other patients but it is not for me.
    Are you going to have the interstim removed? It sounds like you have had a pretty rough time of it with this device. I am sorry you have been through so much pain and problems. When I said I laughed it was just how you put what you said not that I did not hear the pain and agony you have suffered.
    I better go. Thanks for your support in my efforts to convince my primary care dr. that this is not what I need to control the pain that I have. I will keep you all posted as to what happens. I promise. Thanks again!
    Hugs,
    Janice

    Leave a comment:


  • ICNDonna
    replied
    Janice, if the only pain specialists in your HMO are refusing to see you --- my suggestion would be to ask them to put it in writing! Then take that to your HMO to request approval for going outside the plan. You might also point out to your HMO that they are demanding that you have an interstim --- and point out the costs of doing that, compared to an outside referral which would not include surgery.

    Above all, remember that it is your body and you have a right to make decisions about treatments.

    Warm hugs,
    Donna

    Leave a comment:


  • Teri
    replied
    You need to get the letter from medtronics telling this bimbo that the interstim IS NOT FOR THE USE OF PAIN and you need to get your bimbo pain dr to SHOW you in WRITTING where it ever claims to be used for pain.
    Stick to your guns!!!! I have had the hockey puck in my fanny for almost 3 1/2 years now and NO!!!!!!!!!!!!!!! DAMN IT!!!!!!!!!!!!!!!!!!!!!! It has NOT HELPED MY PAIN!!!!!!!!!!!!!!!!!!!!!!

    I'm having a very high anger day today and this jerk just pushed me way over the line.....

    I sure do hope you are able to resolve this without putting too much added stress on yourself.

    tons and tons of hugs~

    Leave a comment:


  • Janice
    replied
    Dear Debbie, Thank you for posting to me. The information you gave me is very helpful. I also appreciate the sympathy and empathy, it goes a long ways when in such a horrible spot that I am in. Thank you so much. Hug, Janice

    Leave a comment:


  • DebbieB
    replied
    Hi Janice:

    The web sites to read about this is at www.interstim.com and the maker of the device is at www.Medtronic.com..

    This is a decision that only you can make,it is not up to a doctor to tell you to do this ok..

    I did all of treatments and medications for a long time and the InterStim Implant was the very last resort for me to do..
    I have had the InterStim Implant almost three years now and having wonderful results with it for my frequency and urgency!!

    As for the InterStim is does not help with pain as so many doctors are telling their patients.
    I was help with pain and alot others but it does not help every one with pain at all..
    There is a new procedure by Medtronic that help with pain it is on the web site to..

    First of all before doing the InterStim Implant ,you should do the InterStim trial this will let you know if the InterStim Implant is even going to help you at all !!

    I wish you all the best Janice and so sorry you are having so much to deal with your husband and IC.
    it is very hard for many people to understand what we deal with having IC and many other conditions that go along with it as well !!

    Janice you should get a second or even a third opinion from another doctor..
    As I did and I was the one that was lucky to find the right doctor as he was the third doctor I got an opinion from..


    ~~~Debbie~~~

    Leave a comment:

Working...
X