spinal cord stimulation

[brandi28]

My doctor gave me a video to watch about this. I am getting nerve blocks in three rounds in march. And then I see a new urologist. I just wonder how successful this is for IC. She said the interstim only works for urgency not pain. Of course, she said I would need to find out what my new urologist could do for me. But, the spinal cord stimulation is suppose to help pain.

Brandi

[Michelle in KC]

I use a TENS unit almost daily. It sends electrical stimulation to my low back and also my bladder. I don't know if it's the same as what you are talking about but it sounds the same to me. It is a life saver. If it's the same, I'd recommend you try one first. Ask your doctor if it similar. :) Michelle.

[Claredale]

No, it's not the same as the Tens Unit. It's surgerically implanted. I have been reading info about it and know of a couple people that have had the spinal cord stimulation done and are having it removed since it isn't helping. The interstim quit working for them too, so again we are all different, so it's definitely worth the research, good or bad! I am still researching it just in case I ever have to make a change. I am very familiar with the rollercoaster of meds and treatments since IC has effected most of my adult life. I have been told a number of times that they don't know many people that the interstim kept working, which I wasn't familiar about that. Mine is still doing great! The spinal cord stimulator seems to be more for back pain, but I haven't talked to my prior doctor that did my interstim or my current doctor to get their take on it yet.

Brandi, read alot about the spinal cord stimulator, okay? I had the interstim knowing that it helped with freq/urg but was not a cure for pain, but for some patients it helped with pain per several of my doctor's patients. I have severe IC, diagnosed in 98 and after going through many other treatments, including the tens unit which worked for only 3 months or so, and talking to patients that had the implant. Several of the patients that I talked to said that their pain decreased from the implant and they lives were had improved so much. I gave it a try and found the same results. Since my bladder finally wasn't so irritated from the constant freq/urg (usually every 15 to 20 minutes a day) and I had to be knocked with strong meds at night to just get a couple hours of sleep, I was did the research and prayed for the best. Shortly after my interstim, I noticed that my freq/urg was about every 2 hours and my pain was so much easier to manage. Not nearly as many flares. I have had my interstim for 6 years now and with my current combo of meds which I hope will continue to work, plus I am even decreasing each month, I am practically normal with my freq/urg and have decreased my pain meds to just at night. Big difference since I used to eat Lortabs like they were M&Ms for relief. I haven't had an actual "flare" since Sept and that was actually due to the fact that I forgot to get my quarterly depo shot in August, and I had started to ovulate. Two days after the shot, my flare was a memory.

T83

[mlzippy7]

Brandi,
My pain dr wanted to do the spinal cord stimulator for me. We had it all scheduled and then I decided it was not for me at the time. I decided to go with the Interstim first and the pain dr said they could put the spinal cord stimulator in as well. At this point I have decided to just wait as the Interstim has given me enough to deal with so far.
Feel free to email with questions.

[buddie]

I have had three rounds of nevrve blocks. They started on September 11 and my last one was October 31. After the last nerve block I had no pain at all until December 28 when the medication wore off. Now I have been in pain again since then. I am sceduled to have my nervers burned off with some kind of an alcohol substance next Wednesday. I hope that works as well. I have been on a pain patch 75 mg, gabapentin 300mg,amitriptyline,elmiron,hydomorphone,and temazepam30mg. since September and they have not helped my pain. Only the nerve blocks have helped so far.I haven,t had instills yet so I don,t know about them.
Buddie

[brandi28]

Yea, I am quite nervous with all of this coming at me all at once. I just now starting taking 2 pain meds a day which is hydrocodeine also with my tramdol. I have great relief with just 2 to 3 pain meds a day. My guess is my pain doctor doesn't wanting me to stay on these meds? I have a big problem with urgency and pelvic pain down there. This all seems so scary to me. Should said there would be a trial period for it. I am thinking long term. What happens if I lose my insurance 10 years down the road. Who will take this out of me. How much will this cost me. IMO, right now 2 pain pills a day is alot lot better than having any thing surgical implanted in me. But, I guess she give me the pills just to last until I do all of this. Next time I am going to ask her if for right now I can continue to take pain pills only 2 day for now. And when that stops working then move on. My guess this lady isn't to big on pain pills, but I wasn't either until I had severe pain everyday. I used to judge people on pain pills, but I learn the lesson the hard way. You just don't know how bad things are until you walk in that person's shoes. My guess the pain doctors make more money on blocks, and implants? I will do all the research because I will let no doctor make this decision for me. Because in the end it is all about money.

Brandi

[Claredale]

I truly don't believe that Dr. Doggweiler (who is on the list on this forum) was in it for the money. Even though I been treated by a regular uro for several years before I went from moderate IC to severe IC, she still didn't talk about the interstim until we tried a number of other meds and treatments over a couple of years. Once we tried everything with no success is when we started talking about the insterstim. And she made sure I was fully educated about it before I had the surgery. I know there are people that it didn't help, but I am so grateful that it was able to help me. Prior to my interstim, she told me I would probably be on pain meds for the rest of my life since my bladder was so damaged. When I told her I was down to 1 1/2 to 2 Lortabs (Hydrocodones) at night only, she was amazed. Just last summer, I was still taking them every 4 to 6 hours pretty much every day. My goal was to stay off long acting meds since Lortab took at least the majority of my pain away unless I was in a major flare.

T83

[Dreamlove15]

I'm really interested in learning more about this. I would like to know if this is like an implant like the interstim or is it just a procedure that can performed on the nerves as needed?

[Claredale]

It's implanted much like the interstim but more for back pain but is implanted normally in the front or side. It has a remote to change the settings as well. Jerry Lewis (former actor, now does the Labor Day Telethon for Muscular Distrophy) has had one for years due to his back pain.

T83

[mlzippy7]

The interstim works with your sacral nerves. The spinal cord stimulator is connected to your spinal cord. If you want more information please let me know. My pain doctor went through the spinal cord stimulator in great detail with me.