CallingAllAngels Posted November 12, 2009 Author Share Posted November 12, 2009 i'm so sorry you're suffering with this, it must be awful. I know lots of people that have used acupuncture for different things and has always helped in varying degrees, well worth a try xx Thanks for posting...I will look into this......it's very discouraging. Link to comment
lostandhurt Posted November 12, 2009 Share Posted November 12, 2009 I am very happy you decided to come back. It is heartwarming to see just how many here DO care about you and what you are going through. Welcome Back! As far as the insurance goes it sounds like you have a HMO. I have battled with insurance companies since my son was first diagnosed. I have won some and lost some. The medical director's favorite word is NO! I actually proved to them the treatment for my son was cheaper and safer in another state but they still denied it and we paid 30K out of pocket. The way it is run is not fair or logical so be prepared. You should be able to get a 24hr. appeal if the treatment is scheduled soon. Your doctor will need to write a letter stating that it is medically necessary to even have a chance. Read your HMO hand book or go to their web site and read the listing of covered procedures. The more info the better when battling them. If you are covered through work and you have a choice, you might want to consider switching to a PPO. It will cost more upfront but you will get better treatment. Please remember that we all have problems and are here for each other. Lost Link to comment
CallingAllAngels Posted November 12, 2009 Author Share Posted November 12, 2009 Thanks for the welcome back. Yes, it IS an HMO, and I am waiting for an expidited appeal. I'm just so discouraged that some man sitting behind a desk, who has never seen me examined me can make that determination. I am waiting for a call back from my Dr....they are still pushing to get this authorized. Unfortunately, I don't expect a positive answer. I am beginning to lose all hope...... Link to comment
metrogirl Posted November 12, 2009 Share Posted November 12, 2009 Thanks for the welcome back. Yes, it IS an HMO, and I am waiting for an expidited appeal. I'm just so discouraged that some man sitting behind a desk, who has never seen me examined me can make that determination. I am waiting for a call back from my Dr....they are still pushing to get this authorized. Unfortunately, I don't expect a positive answer. I am beginning to lose all hope...... And that is what fuels your depression.....You need to have it set in your mind that you are going to get things done even if it doesn't happen right now. You just keep fighting the good fight and if they say no then you keep doing what you are doing. Eventually someone is going to listen. They are going to listen and you are going to get the help you need. Don't let this bring you down further......It might be a setback but certainly not the end! Link to comment
Crazyaboutdogs Posted November 12, 2009 Share Posted November 12, 2009 Are there any women's advocacy groups you can take this to that will help you fight the suits at the HMO? Link to comment
CallingAllAngels Posted November 12, 2009 Author Share Posted November 12, 2009 Just wanted to give an update....after a MILLION phone calls the approved the Interstim trial for Monday. THANK GOD!!!!!!!!!!!!!!!!! Link to comment
metrogirl Posted November 12, 2009 Share Posted November 12, 2009 Just wanted to give an update....after a MILLION phone calls the approved the Interstim trial for Monday. THANK GOD!!!!!!!!!!!!!!!!! YAY!!!!!!!! I told you not to give up......... Always listen to Mama Metro..... Link to comment
CallingAllAngels Posted November 12, 2009 Author Share Posted November 12, 2009 YAY!!!!!!!! I told you not to give up......... Always listen to Mama Metro..... YOU have NEVER been wrong about ANYTHING!! Hugs girl! Link to comment
lostandhurt Posted November 12, 2009 Share Posted November 12, 2009 That is great! I hope it goes well. Lost Link to comment
CallingAllAngels Posted November 12, 2009 Author Share Posted November 12, 2009 That is great! I hope it goes well. Lost Thank you......I am nervous about it and scared that it won't work. But I have to keep the Faith...... Link to comment
Crazyaboutdogs Posted November 13, 2009 Share Posted November 13, 2009 Just wanted to give an update....after a MILLION phone calls the approved the Interstim trial for Monday. THANK GOD!!!!!!!!!!!!!!!!! Yay! Good luck with it. I hope it gives considerable improvement. Link to comment
Ellie2006 Posted November 13, 2009 Share Posted November 13, 2009 Thanks for the update! I hope it helps Keep your chin up, girlie! Link to comment
CallingAllAngels Posted November 13, 2009 Author Share Posted November 13, 2009 Yay! Good luck with it. I hope it gives considerable improvement. Thank you...I will let ya'll know! Link to comment
CallingAllAngels Posted November 13, 2009 Author Share Posted November 13, 2009 Thanks for the update! I hope it helps Keep your chin up, girlie! Thanks Ellie....I'm trying! *Keeps fingers crossed* Link to comment
SnowFox Posted November 14, 2009 Share Posted November 14, 2009 I'm sorry you're going through such a painful experience. I hope your trial is a success. This on-line booklet isn't specific to your condition, but it might have some useful info in it for you - its about living with intractable pain - link removed Link to comment
CallingAllAngels Posted November 14, 2009 Author Share Posted November 14, 2009 I'm sorry you're going through such a painful experience. I hope your trial is a success. This on-line booklet isn't specific to your condition, but it might have some useful info in it for you - its about living with intractable pain - link removed Thank you so much....I will definitely look into this. Link to comment
CallingAllAngels Posted November 16, 2009 Author Share Posted November 16, 2009 My Interstim Therapy Trial is tomorrow. I am NERVOUS about this. I have YET to read ONE POSITIVE thing about this device that has NOT come from the manufactuer's Web Site. I got on an Interstitial Cystisis support group forum and heard HORROR stories about this from woman who lost feeling in their legs, got electrical shocks from the metal detectors stores have, who have had to have surgery after surgery to get the device in the proper spot, etc etc etc. I am scared and defeated. I see no light at the end of this tunnel. And all this is doing is creating a strain on my relationship. I want my OLD LIFE BACK, and THAT wasn't even so great. Just my old life. Is that too much to ask? Probably too much venting and self pity here.... Link to comment
lostandhurt Posted November 16, 2009 Share Posted November 16, 2009 I hope it goes well today. Post later and let us all know how it went. Ask plenty of questions and understand what you are getting into. Do not trust the doctors to much. Verify everything they say! Remember most people remember bad things and tend to complain about them more than good things so don't be surprised that you are ready a lot of bad stuff about this procedure. Just like nuclear weapons......trust but verify! good luck Lost Link to comment
CallingAllAngels Posted November 16, 2009 Author Share Posted November 16, 2009 UPDATE: Went to the Dr...has the test procedure done. He inserted (after several failed attempts) a lead (wire) that is near the sacral nerve, the nerve that controls bladder function. I was able to feel the "stimulation" that you are supposed to feel. It hurt MUCH more than they said. When I got home, I sat down on the couch and now, I no longer feel the "stimulation" that I am supposed to feel. So, in essence, the lead in my back must have moved(common from what I have read on those web sites) SO THIS WAS ALL FOR NOTHING! I am so angry and disappointed and just fing pissed off I can't believe it. I called the Dr. and am waiting a call back for him to take these wires out of my back. I turned the unit off...I don't want it to stimulate some OTHER nerve. I hate this illness and I hate my life right now. I effing quit. Every day it's just one thing after another. FAIL. Link to comment
sidehop Posted November 16, 2009 Share Posted November 16, 2009 Don't give up, there's always hope for better treatment. I'm very sorry you're going through all this Link to comment
CallingAllAngels Posted November 16, 2009 Author Share Posted November 16, 2009 Don't give up, there's always hope for better treatment. I'm very sorry you're going through all this I just CANNOT believe this. I was supposed to wear this unit until Thursday and the lead moved already? I think this is a sign I should NOT have the perment surgery done. I guess I am not a good candidate. I guess I will just urinate (TMI) 50 times a day and night and just have to get used to it. FML........ Link to comment
CallingAllAngels Posted November 16, 2009 Author Share Posted November 16, 2009 Well, I RETURNED to the Dr's office to have these wires in my back removed, and he wouldn't remove them...said to wait until Thursday, that some people don't always "feel" anything but it still helps. Bullsheet...I think he must get a kick back from the manufactuer of this device, but I will PLAY ALONG since he is the best female urologist in my area, and I'm afraid if I DON'T, he will no longer see me as a patient... Can you IMAGIN how BAD this is gonna get if this health care bill passes????? Link to comment
CallingAllAngels Posted November 17, 2009 Author Share Posted November 17, 2009 Last night, around 7:30, I started developing numbness in both feet and my calves. I called the Dr. on his emergency number, and he told me to take the unit out. I am so discouraged and now scared. He was in my lower back, poking around...he's a urologist...does he really know what he's doing? Did he hit another nerve? This numbness is NOT going away. Oh God grant me some luck please. I am more discouraged by the day...... Link to comment
sidehop Posted November 17, 2009 Share Posted November 17, 2009 Have you checked around on the acupuncture? I'm so sorry you're going through this, I just know there is still a good chance it could help you aside from conventional methods. I wish you the very best. Link to comment
Catdancer Posted November 17, 2009 Share Posted November 17, 2009 Please be careful with trial drugs and gizmos. My mom's doctor's almost killed her twice with "a new drug". They even had her on cancer drugs that ate holes in her intestines. None of this helped her, it made her worse and almost killed her. She eventually learned to stay the hell away from anything that is a trial or new gizmo. They usually screwed her up worse. Link to comment
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