# Botox/Sacral nerve stimulation



## 18091 (Dec 26, 2006)

Hi, can anyone please tell me more about botox injections?? I just spent 4 weeks at Mayo (two of biofeedback) and still suffer..I only go once a week with an enema. Otherwise I wouldn't go at all. I asked the Doc at mayo about sacral nerve stimulation and botox and he (well...his nurse) said that isn't approved for constipation. They have given me no answers and not helped at all. I apparently have colonic inertia with also some pelvic floor dysfunction. Please...any additional info I can get is much appreciated!! Where can I go for botox or to try other things??? We have spent over $7000 out of pocket already trying to make this better! Please help!!Ann


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## SpAsMaN* (May 11, 2002)

Here:Initial North American experience with botulinum toxin type a for treatment of anismus http://www.springerlink.com/content/l633p45688175l62/http://findarticles.com/p/articles/mi_m0CY...39/ai_113754611http://www.springerlink.com/content/378012x135357l52/


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## s_teo (Aug 14, 2006)

Hi, I was diagnosed with non-relaxing puborectalis or anismus. I tried twice botox injections and it did NOT help me at all.Also I tried 3 times biofeedback (each 3 months, once a week) with very little improvement.Right I am using glycerin suppositories every day, dulcolax, stool softeners and senokot from time to time.I also tried IBS Audioprogram100, no improvement there either.Spasman, I think you have the same problem, what are you doing every day about this?s_teo


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## Darklight00 (Jun 2, 2007)

As far as I know they are not doing sacral nerve stimulation for constipation in the USA. Everything I have been able to find on the subject says they are doing the test in the UK (I know that sucks.) I really wish they were doing it here because I am ready to try something that will alleviate my constipation. I can't understand if they are using it for urinary retention and incontinence as well as fecal incontinence why can't they just try it for constipation....


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## SpAsMaN* (May 11, 2002)

s_teo,sorry about the Botox failure.Did you have a double side injection?Where did you got that done?Rigth now i'm thinking of reducing my pubic discomfort(urologist) and constipation(worst symptoms).


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## s_teo (Aug 14, 2006)

Yes I had the injections at 9 o'clock and 3 o'clock 20 units of botox each session.First time I had botox at University Southern California Medical Center in 2003, the second time at St Joseph Hospital, Orange California.Spasman, thanks for the personal message.s_teo


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## 16522 (Apr 6, 2005)

I am from long Island, New York. I have left sided colonic inertia, IBS and pelvic floor dysfunction. I always have a lot of pain and the pain is the worst after a bowel movement. It is excruciating. I do take pain med which is bad because I suffer fromn constipation, which I think has gotten worse. At one time things like Milk of Magnesia and Miralax worked and now they don't. in my desperation I started seeing an accupunturist a year ago. She was an M.D. in China, but not in this country. She gave me something called Dr. Schultze's Intestinal Formula One which is pretty strong It has senna, aloe and cascara in it. In the beginning it was great, it cleaned me out but now after a year I think I'm getting used to it and taking it all the time, I believe makes my pain worse. She claimed the accupunture would make my motility better and I could switch to a fiber supplement, but that never happened because the accupuncture never worked. Anyway my bladder was really bothering me and I went to a different doctor who is a uro-gynecologist. He said I was very constipated. He was kind of quick and blunt, but told me that the only thing he could do for me was try the Interstim. It would help my bladder symptoms, which I don't have all the time and my G.I. issues are much worse. He said they found that when using this for bladder problems, it has been reported that it improved constipation and he was one of the few doctors that was approved to use it for this purpose. I don't know how much it would help somebody with colonic inertia and really severe constipation. He said there was another doctor in Boston who was also approved to do this. I think I found this doctor's name when I came across an article about the use of sacral nerve stimulation for idiopathic constipation that came from England. I came across a few articles about this all from England and they were all pretty recent. The doctor from Long Island told me that first you wear it externally outside your body for five days to see how it works before they permanently implant it. I don't know if we are allowed to print doctor's names or not. Somebody, let me know or e-mail me. I also found an article about spinal cord stimulation as an effective treatment for chronic intractable pelvic pain of abdominal origin. This article which is from the pain management clinic at the Cleveland Clinic in Ohio which doesn't say anything about constipation. I also found, which I can't find and have to look for is another article from the Cleveland Clinic in Florida. I don't know if this would help me because I get pain higher up then the pelvis I get pain sometimes in my upper left quadrant radiating to my back, which I'm told is referred pain. I went to Temple University last week and saw the Chief of the department. a Dr. Fisher who was very nice, but didn't even want to hear about this neurostimulation, although he does know the doctor in Boston who I believe does this. He wants me to have a whole battery of tests which will be quite uncomfortable and I will be a few hours from home and would have to spend a lot of time in a hotel room and then there would be no guarantee that he could help me. I've read about people going to places like Temple or the Mayo clinic and going through all these tests and then being told that they have this or that but there was currently not many available treatments. Another option would be to contact the company Medtronic's and they could give you some names of doctors in this country who are doing this. If anyone has any experience with Temple or if anyone has such bad pain especially ater a bowel movement, I would appreciate it if if they would let me know. In regard to Botox one needs to have a defography, anal-manommetry and sitzmarker to see where the markers end up in order to determine whether it's constipation due to a non-relaxing pubo-rectalis muscle or due to colonic dysmotility. You can have both colonic inertia and pelvic floor dysfunction which makes things much more complicated. haven't heard many good resulta about Botox. Sorry for such a lengthy letter.I'm wondering if anybody else else gets bad pain in areas other then the pelvic area. Let me know if I can post these doctor's names. Another suggestion is to contact the company. Thanks for listening.


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## Darklight00 (Jun 2, 2007)

Rebeca thanks for the reply. I want to ask you if you found a doctor who is willing to try the sacral nerve stimulation why don't you try it. I am hoping that I find a doctor willing to do it. I live in NYC so if you can please PM with the information about this doctor from long island. I need his phone number because I want to try sacral nerve stimulation. Thanks


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## 18091 (Dec 26, 2006)

Thanks for everybody's input. I'm glad that I have others to relate with, but to be honest after reading these forums I get scarred that I am just going to have to live with this for the rest of my life. It seems like so many of you have tried everything I have and then some and are still suffering. I am trying accupuncture right now...so far nothing.Thanks again for all of your help.Ann


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## 18091 (Dec 26, 2006)

Darklight00 said:


> Rebeca thanks for the reply. I want to ask you if you found a doctor who is willing to try the sacral nerve stimulation why don't you try it. I am hoping that I find a doctor willing to do it. I live in NYC so if you can please PM with the information about this doctor from long island. I need his phone number because I want to try sacral nerve stimulation. Thanks


Oh, P.S....Rebeca...if you could tell me who the Doc is that was willing to try sacral nerve stimulation too, that would be great!!jeepannabell


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## SpAsMaN* (May 11, 2002)

http://www.sciencedaily.com/releases/2007/...70522073647.htmhttp://www.ncbi.nlm.nih.gov/sites/entrez?D..._RVAbstractPlushttp://www.ncbi.nlm.nih.gov/sites/entrez?c...pt=AbstractPlus


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## puborectalis (Oct 14, 2007)

hi there.. im new here but had the condition 4 long years.. awfulwas about to try botox but gets thumbs down it seems ? i have read success stories about this treatment, has anyone found they helped ?biofeedback waste of time !been doing stanford protocol for 8 months, no real luck... some help in some areas but it also kind of creates more pain ! having bad 8 days but before that there were some tiny signs of improvement.. spending my time laying on a heat pack and hoping i can figure this out


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## SpAsMaN* (May 11, 2002)

pubo,do you have motility problem of the left side sigmoid colon?


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## SpAsMaN* (May 11, 2002)

if you have access to botox,you should try it rigth?


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## 16430 (Oct 30, 2006)

Is sacral modulation similar to Spinal cord implant. Am confused http://www.cumc.columbia.edu/dept/pelvic/t...modulation.htmland internet search does not help


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## SpAsMaN* (May 11, 2002)

You can look at my post on Cecopexia here:http://www.ibsgroup.org/forums/index.php?showtopic=87965


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## SpAsMaN* (May 11, 2002)

What is the worst problem?Where the sitz markers has accumulated?


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## MollyB (May 3, 2009)

Sacral nerve stimulation did not work for my IBS-C. I, too, have pelvic floor dysfunction, and because I have some urinary symptoms, insurance paid for the test (total before insurance was $5,000). You are right that sacral nerve stimulation has not been approved for bowel issues, but my dr told me it's the same device and same procedure as for urinary symptoms. If you have even the least bit of problems with urinary dysfunction, your dr can use those symptoms to get you approved for the test. Testing is two weeks of wearing the device under your clothes and being careful not to displace the wires. As I said earlier, it did not work for my constipation problem, but it did help my urinary problem, which really wasn't even an issue. My dr said most of his patients tell him during testing follow up they have never experienced such wonderful poops! I guess it works for some folks.


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## AIRPLANE (Mar 15, 2004)

I was told I had non-relaxing muscles after a defecography and anal manometry a few years ago. I didn't mind having these tests, but was hoping for more tests for other stuff as well- my issues involve my pelvic floor and entire abdomen- most likely due to adhesions which only physical therapists will discuss. A couple of my symptoms are pelvic pain and incomplete evacuation.I went to a urologist who I had been told was an expert regarding the pelvic floor. I went to him thinking I'd have some tests done. He just did the usual pelvic-type of exam, and quickly decided I should try the InterStim device. I suspect that this Dr. has a financial interest in the product as he had a hand in developing it so that's why he's so quick to recommend it. He said that the device is not officially authorized for GI issues but that some people who tried it for bladder issues also had improved GI function. The device has to be used under the pretense of treating bladder issues for the time being anyway. I was willing to try the one-week trial, and thought that if it didn't work, that this Dr. would recommend something else or at least refer me to someone- maybe a pain clinic or somewhere for muscle injections or better, different physical therapy than I had previously tried.When I went back after my one-week trial, the Dr. wasn't even present to discuss things. His assistant removed the device, and even though I said that the device did nothing for me, she said that I should get the permanent device anyway because supposedly it works better than when you wear it during the trial period. I figured then that the trial is just done because it's mandatory- maybe insurance companies want some evidence of whether it will be of any benefit before having the necessary surgery for the permanent device. But in reality Drs. such as this one intend for everyone that tries it to get the permanent device regardless- the trial is just a requirement.The assistant also said that if I got the permanent device that it would require 2 surgeries. I decided it wasn't worth having a piece of lead under my skin. Besides possible infections and other problems I've heard about, the device can activate theft and metal detectors.


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