AWESOME RESULTS-Neuromodulation by Boston Scientifics

[sheilacoito]

Hi! Not sure where to post this- but I have had IC for 14 years, since i was 16!!!
I developed pelvic floor dysfunction also, so even when my IC is in remission, I have constant pelvic pain. That is, until I got a neuromodulator by boston scientifics. It is similar to the interstim but very different if that makes any sense. It works on many areas of the body. The trial was very hard but the permanent is AMAZING!!! I ma dissapointed in the lack of information on here, why? I would love to share my success story as I believe so many ppl could benefit- It helps my pelvic pain AND bladder/urethra pain!!! Dont know how I ever lived without it...
Praying for you guys!xo sheila

[Linda May]

i am glad you found something that works for you and thankyou for the info.

[bubbe1]

Neuromodulation

Hi! Not sure where to post this- but I have had IC for 14 years, since i was 16!!!
I developed pelvic floor dysfunction also, so even when my IC is in remission, I have constant pelvic pain. That is, until I got a neuromodulator by boston scientifics. It is similar to the interstim but very different if that makes any sense. It works on many areas of the body. The trial was very hard but the permanent is AMAZING!!! I ma dissapointed in the lack of information on here, why? I would love to share my success story as I believe so many ppl could benefit- It helps my pelvic pain AND bladder/urethra pain!!! Dont know how I ever lived without it...
Praying for you guys!xo sheila

Sheila,
What is the difference between interstim and what you have?
Thanks,
Laurie

[JKS]

I am interested in the difference too.

[sheilacoito]

The difference

The interstim, i believe, is only placed at s3 in the spinal column and mostly has effects on urgency, frequency, etc. The boston scientifics that i have can be placed many places (for arm, back, leg muscle pains). I believe the website is www.controlyourpain.com. I have more internal vaginal / pelvic floor pain rather than bladder urgency, so i tried it! AMAZING!!!! please feel free to ask me anything! Xo

[bubbe1]

the difference

Sheila,
Thanks so much. The web site is very informative and I plan to show it to my husband as well, since he has chronic, severe back pain.

I'm so glad you found something that is helping you! It's always great to hear the success stories.

Laurie

[ermkenne]

Hello,

I am going to be seeing a pain management specialist in one month, and thanks for posting this. I know that the office does this, but did not know if it worked for bladder/pelvic pain. That is my main problem. Depending if we cannot get medications to work, this may be something I look into.

Was it painful to have it done? How soon did you get results? Did you exhaust a lot of different medications while getting your IC treated?

Sorry for the questions, I was just really intrigued by this!

Erin

[Nuthatch]

Sheila,
Thank you so much for posting this news about the new neurostimulator!!!
I am scheduled for my Precision Plus install surgery next Friday and I am living on pain meds in the meanwhile!!

Last September my uro put in the Interstim and it did help the IC symptoms of urgency and frequency but it has not worked on the constant PFD spasms. About a month ago he told me that he wanted to go ahead with Precision Plus because he could use both of the implanted leads along both sides of my sacrum into the pelvic floor instead of relying on only one that the Interstim uses.

I have had abdominal and vaginal nerve block injections now for a year and the uro says that if the nerve blocks were really going to do everything I need done that I should be getting them only every three or four months, not every two weeks which is the current situation. There is nothing more excruciating for me than vaginal nerve block injections!!

Please keep us up to date on your progress, Sheila, and, again thank you for putting this information on here for our whole IC/PFD/CPP community.

Be gentle with your very kind self!
Nuthatch

[Mushmouth]

Just wondering if you have the Bion? I was implanted more than 5 years ago and it took away any pain...now they want to deactivate.

[Nuthatch]

Hi all!

Well, I had the Precision Plus surgery last Friday and it was as simple as I think anything could be in that region of the body. My uro was able to use the leads which he had implanted last year and just attach the new device after removing the old one.

I will go to see him this Thursday and he will decide if I've healed enough to activate the new device. It is amazing what can be done now.

Now it's up to me to do what I need to do to take care of myself and work very deliberately on my exercises and relaxing the pelvic floor so to cooperate with this terrific care I'm receiving.

Thanks again for starting this thread and be very good to yourself today!

Nuthatch

[lnoble]

This is very interesting. My daughter is the one with IC - we checked on the Boston Scientific earlier, but have not made the decision to go forward. She has been through so much; every time being told this is what will help - and then let down. We were afraid this is such an invasive thing that the results might be devastating. She had a hernia repair when this all began and it heightened all her pain. She is on so much medicine right now, going to physical therapy, ob-gyn, pain clinic - and all these are 2 hours away. That means 4 hours on the road every time.
It is very encouraging to know that you are getting relief. My daughter is so thin I just don't understand how this will work underneath her skin. The dr wanted to implant 2 - one in her abdomen and one in her hip area.......

[Nuthatch]

Hi, y'all!

I saw my uro--actually he's a neuro-uro (now that's a mouthful)! I had to get two nerve block injections yesterday, one in my abdomen and one into the vaginal area. Yuck and horrendous pain, but he assured me that once I have had the Precision Plus program tweeked to the perfect settings that I should need fewer nerve block injections. Can't wait for that.

Hi Inoble!

I'm glad that my experience can be of some use to you. I'm so sorry that your daughter is suffering so and I understanding just how discouraging this medical run around can be. You are smart to take your time and reach an educated decision, especially if your daughter has already had several medical traumas in the past. I had the Interstim implanted last September after the two leads and the test device were conducted for five weeks. The test phase of the device is very important to find out if the device is really viable. The lead placement surgery was by far the most difficult of the surgeries and you really have to plan on some down time and be serious about resting and not moving alot and doing crazy things while the leads get used to your body. The permanent implant surgery was much easier because my doc had already prepared the pocket where the permanent device would be placed under the skin. I don't think it will matter alot about your daughter's weight as these devices are quite small. Precision Plus is smaller than the Interstim. The real benefit of the Precision Plus over the Interstim is that Precision Plus can connect to both leads and therefore provide coverage to the nerve root and the nerve itself. My Pelvic Floor issues are more debilitating than the IC in many ways. Both devices have helped the IC--less urgency and frequency and I can lead a more normal life in that way but the pain is already being better controlled with the Precision Plus and I've only had it turned on for a little over a week. The Precision Plus staff out in the field have come to my doc's office and that is surely convenient and they are very knowledgeable and friendly. I still have lots to learn about my own care vis a vis this device and I have had to redouble my efforts to provide ample time for meditation each day and look to an exercise regimen that will strengthen but not stress my body. I am also trying to begin a much more consistent walking program.

Please let me know any other information that will help in your decision making process. I'll be happy to share my experience.

All my best,
Nuthatch

[ChrisNes]

I want to post about my doctor appointment and Interstim implant.

I have been put on a 3 month waiting list for a trial Interstim. The specialist I saw tells me that not only will it help with my IC pain, he said it would help with my chronic pelvic pain, my back pain and help my bowels. He said i am a good candidate for the device. He said it wold also help with my bladder leaking : )

The doctor at the Pelvic Floor Center in Minneapolis tells me basically I have nerves that are miss-firing and they are sending messages of pain to my brain. He says that these nerves some how start sending the wrong message.

I have PFD and CPP, my exam hurt but went fine.

I do not want to wait the 3 months if it will help me with all of these areas of pain.

The doctor tells me my Burch or what he called 'a bladder vault suspension' is still intact, he believes my bladder tack is also holding.. He doesnt want to go in and operate or remove the scar tissue. He says i am at the age where i should start menopause so when that happens the endometrosis will stop growing.

I had POP in 2002.

This doctor is going to try to set up some PFD pelvic floor PT : ) I live in Rural ND so this part may be difficult to get a PT with pelvic floor experience to come here. Diagnosed with PFD on 5/25/12.

I also had a bladder scope and the Dr. gave me some peridium s.p. to numb the bladder and an Rx of Tramadol...it seems to help some.

[sheilacoito]

lnoble-Wow! I'm so sorry to hear that she has so much pain I can totally understand the letdown that comes EVERY TIME u try something new. It's frustrating! I have some fluff on my hips so it goes unnoticed. I admit that the abdomen is more intimidating... What about just doing the trial? And has she tried an internal TENS stimulator? That's how I knew the SCS would probably be good for me. The internal tens unit is like the biofeedback unit and probe, but releases little electric impulses that fatigue the dysfunctional muscles out of spasm. I find this type of treatment helpful for my PFD. For the IC bladder irritation spots / ulcers/ urethra / vulva pain I like a combo of self cathed bladder instillS and the SCS. Are there any questions I can answer for her?
Nuthatch- So excited to meet another SCS for pelvic pain patient! I'm so thrilled w this product and the relief it gives! What do u think about interstim vs SCS for pelvic floor dysfunction?
ChrisNes- hi! I hope that u find what works for u!!! but if I understand correctly? U have more PFD than IC symptoms currently, right? I am the same. Luckily, I was close enough w my old uro that she told me the truth- that interstim is not so much for the pain of IC or for the muscles around the bladder, but for controlling the bladder. She sent me to a specialist who does the precision plus Spinal Cord Stimulator because it has MUCH GREATER capability. They ARE NOT THE SAME PRODUCT. I'm very passionate about this (helping ppl fight for their knowledge). And interstim works very differently, actually not helping the surrounding muscles at all. I really suggest that u learn about what each one does the same and differently before getting the interstim ( I want u to get the right procedure, the FIRST time. I'm curious to see what Nuthatch above thinks about the interstim vs SCS since she had to get both...BEST of luck to u... Pls keep us updated!

[sheilacoito]

Sheila,
Thanks so much. The web site is very informative and I plan to show it to my husband as well, since he has chronic, severe back pain.

I'm so glad you found something that is helping you! It's always great to hear the success stories.

Laurie

I am so sorry! I don't know why I never responded to these msgs of over 1 1/2 years ago?! I know it was a terrible time in my life, but.... I can't apologize enough! My 4 year old, then barely 3 year old has been going through some very hard illnesses over the last 2 years and I am preoccupied to say the least- but I'm hoping u are well? Blessings!!!