nerve stim being blackmailed into by pain dr., help

[Janice]

Help. My pain dr.has decided he does not want to be my dr. anymore and has told me to go get the intrastim. I have done my reserch on having this done and had already decided it was not something that I wanted to try long before he ever mentioned to me that he wanted me to go have this done. I know several people personally that have not had good results and also I just do not want this type of invasive procedure done on myself, It seems all things that I have tried I get more problems from then I had before I had the treatment or procedure done and I am just not wanting anything such as the intrastim done to me. I have more pain then anything else and what I would like to know from anyone here that can tell me, where can I find the information that says that the intrastim is for frequency and urgency and not meant to relieve pain? I need to have a official report type document to show to my dr's. I am being told that this is what I have to have done. I do not feel that anyone should be forced to have something done to there own body. I feel if I do not agree to have this done that I will lose the pain management medication that I have been taking for the last 3 to 4 years. I have been so upset because the pain dr. that I have been seeing that has perscribed this medication all of a sudden decided he did not want to treat me anymore and sprang this intrastim demand on me at my last appointment with him when he told me he was firing himself as my pain dr. He gave me another pain dr's name to call to go to see but the other pain dr. would not see me until he saw my records from the first pain dr. After he saw my records he said he would not see me and had his help call me and tell me this and that he recommended that I go have the intrastim implanted. I just spoke with my primary care dr., who is doing her best to try to get this new pain dr., to see me and she said that he is insisting that I have the intrastim done and will not treat my pain. My primary care dr. has agreed to write my pain medication persciptions until I find a new pain dr. but at this rate I feel that I am in a losing battle. My primary care dr., says there is no other pain management dr. in my hmo and that I will have to be refused to be treated by this other pain dr. in order to even try to get my hmo to consider letting me find a pain dr. out of the network. If this new pain dr. is telling me to have this intrastim done and I refuse I am afraid the hmo will refuse to allow me to go out of the network to find a pain dr. that will continue to treat the pain the way it has been treated for the last few year.s (which has worked very well by the way) I do need to have it tirated up for I have been at the same dosage for 2 years and the doseage that I am at is not working as well anymore and my pain is returning. I am having IC flares on a regular basis every week or 2 that last anywhere from 1 to 2 weeks at a time. I also have vulvadynia and fibromyalgia and chronic pelvic pain that is thought to be adhesions and neropathic, I have siatic nerve problems that runs from my back down the front and backs of my legs and carpal tunnal and gyon tunnal which is on the opposite side of the hand from carpal tunnal.Both of my shoulders are almost frozen because it hurts so much to move them. I have had in the past injections in my shoulders but it is only temporary and sometimes it does not help at all and it causes me such pain after that I don't think it is worth having it done at times. I have polyarthritis and been told I probabaly have mast cell and that I do have thyroid disease with clusters of nodules on my thyroid and have been horse for over a year now with all sorts of horrible symtoms that I have been living with that problem. There are other problems but the main problem is that I am in pain and am frightened that I am losing my pain managenment medication and there is nothing I can do about it. Even if I have the intrastim done I think I will still lose my pain medication and I don't believe life would be worth much for me to be back in the chronic pain again with my bladder and fibro. and IBS and all the other things that I have. I guess I did not realize what a miracle I had with the pain management medication until now that it is slowly stopping to work and I am being tortured with thinking that it will be taken from me evey month when it comes time for me to get my new perscriptions and I do not know if I will get it or not. I think I will end up insane if this keeps up. I know what it is like to have the pain eased and now I am going to have to go back to it and I don't think I can do it. On top of all of this I have had one terrible year with my husband abandoning me and telling me he wants a divorce. I cried every day for 6 months. He asked me to try to work things out at Christmas time but he has not made any effort whatsoever and continues to ignore me. I feel as though I am losing my entire life. He took my name off of our house. We are still leagally separated because I am afraid to drop the agreement for fear he will tell me again that he does not want to stay married to me. It took alot to get the agreement worked out and alot of money to lawyers and I could not go through that again. I got a settlement as far as he would give me maintence money to live on but I would not be able to live the way I have being married to him the last 22 years. I would have to worry all the time if I would make it or not and if I could afford the medical insurance. I would have been moving out of the area that we live so I would lose my chance to keep the health insurance through his employer for the next 3 years. It is a long story and a mess and I have written too much already. I should not have made this so long. If anyone can point me to a site of article that states that the intrastim is not for pain but for urenary freqency I would appreciate it very much. Thanks you very much for any help you can give. Lots of hugs, Janice [img]confused.gif[/img]

[DebbieB]

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~~~

[Janice]

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

[Teri]

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~

[ICNDonna]

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

[Janice]

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

[Janice]

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

[Teri]

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]

[lucia]

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? !!!!

[darlene]

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!

[Janice]

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

[dedeash]

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

[Janice]

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]

[DonnaReagan]

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

[bcarroll]

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.