Has anyone heard of this disorder? Apparently it is muscle spasms of the levator ani group (in the rectum) due to an unknown reason. I have been told I have this, even though many of the symptoms don't match. I was scoped during a colonoscopy and initially the doc said he saw scar tissue, now he says he saw nothing. Is a colonoscope the best way to see these things? Things like fissures, roids, etc? I heard an anoscope is better. Any input anyone...Please!? I am soooooo frustrated
The Following User Says Thank You to realist For This Useful Post: gantropoli (08-13-2012)
Hey Realist, Doesn't sound too pleaseant. When they add syndrome to the name of a DX it's really more of descriptive DX that describes what your experience. They can't pinpoint a cause so they call it a syndrome, I'm not saying this to deminish your problem , but to explain whay docs act the way they do and you may have conflicting reports or diagnosis. The colonoscopy may have been normal, no abnormal growths, smooth tone, healthy pink tissue, etc, that's what they are looking for. Something abnormal that causes the syndrome.
The other scope may come back with the same results, but if that 's a procedure they haven't done, I see nothing wrong with specifically asking for the test to try and find a treatable cause.
The first long acting med and probably the highest dose of opiates I was first exposed to was OxyContin, It's funny that I have never read of anyone else having this side effect but the OxyContin caused rectal spasms. I would be walking along and whoop!!!, something tightens up that stops you in your tracks. If that's one of the symptoms I can definitely empathize,
Knowing that I had just had an increase I started investigating and read the full prescribing info on OxyContin, along with the FPI on every med I was takeing at the time. This had never happened before so I figured it had to be a med.
Turns out that OxyContin can cause this. I cut this from the full prescribing info from Purdue pharma's web site, the manufacturer of OxyContin.
Gastrointestinal Tract And Other Smooth Muscle
Oxycodone causes a reduction in motility associated with an increase in smooth muscle tone
in the antrum of the stomach and duodenum. Digestion of food in the small intestine is
delayed and propulsive contractions are decreased. Propulsive peristaltic waves in the colon
are decreased, while tone may be increased to the point of spasm resulting in constipation.
Other opioid-induced effects may include a reduction in gastric, biliary and pancreatic
secretions, spasm of sphincter of Oddi, and transient elevations in serum amylase.
I saw my GP and explained and he did the old glove exam and I had a spasm was soon as he started. The symptom was easy to see, coralating it to the med was easy, I had already done the rerarch. We talked about the effects of opiates on the GI tract, smooth muscle tone and constipation ..etc... He did prescribe a 2 week supply of Librax. I don't even know if rectal spasm is a symptom, I gues I can do some checking.
It seemed to work or I simply became acommadated to the dose of opiates and that side effect deminished. A few months later I switched to methadone and haven't had a problem since. I've also used morphine and featanyl and dilaudid nd neev had the problem again. I'm assuming this is a painful condition and that's why you posted here?
I guess the moral is, check the medicatinon you take.
If you go to www.needymeds.com you can look up just about every med. Find the manufacturer and then find their web site. Most manufacturers have a link to the full prescribing info for every med they make. If you see something that clicks, bring it to your docs attn or decide if it's somthing that's worth taking given the side effects.
I really have never heard of this syndrome, but this is a Pain maagement forum. I don't know if they prescribe pain meds for this or not, or if your a CP patient and take opiates. The meds you take are just one posibility. Nutrition is another. Have you had a full blood workup,, testing for vitamins and minerals that you should have that may be causing this if there is a causal relationship between V&M's and your symptoms. That wouldn't be hard to check if you know you had a deficiancy of some kind.
Good luck, Dave
Hey Realist, I just did dome digging and it was what it sounded like, I read a couple articles about manageing the pain and it sounds just like the same methods they use on all chronic pain patients before using opiates.
In your case, I don't know if opiates would slow the bowels even more sending them into greater spasm or if they would help. But most multi disiplinary pain managemen clinics and PM docs that are worth their salt that know how to do more than write a script for opiates would have you try all the same non opiate modalities I have tried and learned over the years in PM. Here is a small excerpt of treatment options and anyone here that's been to any type of PM clinic has probably tried all of these. Librax is another option, I did some more reading about librax and it makes sense that it would help.
No one treatment will work for every sufferer of levator ani syndrome. Urologist Dr. Shoskes has found that for his patients whose levator ani muscles are in spasm, medications such as Elavil, Flexeril, and Neurontin help to break the spasm. Massage of the levator ani may help, and biofeedback works well in many cases (read about this here). Also, some studies suggest that electrogalvanic stimulation of the levator ani by means of an intra-anal probe helps. Finally, injections of botulinum toxin type A may provide relief.
The most recent work in this area is being done at Stanford by Dr David Wise and his team. Dr Wise claims to have cured himself after 22 years of CP/CPPS using his relaxation techniques
I've learned self hypnosis, bio-feedback, guided imagry and yoga breathing techniques. They can help to get through acute phases or attacks, but some people don't want to even consider learning these as it's not an instant cure like taking a pill.
I can see it getting you through a 20 minute episode, I got significant relief while actually practicing these techniques, the problem was I didn't get lasting relief. Once back to the real world and standing on a twisted back it didn't carry over very much. But everyone has different abilities, my father uses Bio feedback techniques for neck pain and gets lasting results, several days from spendig a couple hours doing this.You just need some quiet time and space to acomplish real relaxation.
What methods to manage the pain have you tried already ?
Take care, Dave
Librax combines in a single capsule formulation the antianxiety action of Librium (chlordiazepoxide hydrochloride) and the anticholinergic/spasmolytic effects of Quarzan (clidinium bromide), both exclusive developments of Roche research.
Each Librax capsule contains 5 mg chlordiazepoxide hydrochloride and 2.5 mg clidinium bromide. Each capsule also contains corn starch, lactose and talc. Gelatin capsule shells may contain methyl and propyl parabens and potassium sorbate, with the following dye systems: FD&C Yellow No.10 and either FD&C Blue No.1 or FD&C Green No.3.
Librium (chlordiazepoxide hydrochloride) is a versatile, therapeutic agent of proven value for the relief of anxiety and tension. It is indicated when anxiety, tension or apprehension are significant components of the clinical profile. It is among the safer of the effective psychopharmacologic compounds.
Chlordiazepoxide hydrochloride is 7-chloro-2-methylamino-5-phenyl-3H-1,4-benzodiazepine 4-oxide hydrochloride. A colorless, crystalline substance, it is soluble in water. It is unstable in solution and the powder must be protected from light. The molecular weight is 336.22.
Quarzan (clidinium bromide) is a synthetic anticholinergic agent which has been shown in experimental and clinical studies to have a pronounced antispasmodic and antisecretory effect on the gastrointestinal tract.
Thanks so much for the information I still hope their is a physical cause for my problem. I guess if there isn't this will be my reality. That's really interesting about the meds. I really like to avoid drugs, especially since I have IBS and must avoid constipation or I swing the other way. It seems like almost everything affects the GI system
So far I have only tried what the doc has given with mostly unsucessful results, which are topical muscle relaxants, nifedipine and nitroglycerine. It's weird, when I take these it's like I can feel the relaxation but I can still also feel the sore spots. I also tried oral muscle relaxants with no success. I have also had mixed success with a heating pad and hot baths. What's really weird is how it comes and goes, and is not dependent on stress level or anything seemingly psychological, but rather is ALWAYS worse in the evening. I sure how I can unravel this mystery. It took me years to figure out my IBS, and now this
Wow, you sure seem to know a lot about chronic pain. What do you suffer from?
Hey Realist, I ruptured a couple discs back in 93, back when pain management outside of Hopice was Voodoo medecine.LOL I had surgery, then blew the same discs and vertabrea shifted, had a fusion in 96,. Broke that set of hardware in 98 then had a reviison and extension in 99 to fuse my entire lumbar spine to my sacrum. That's failed, I have broken this set of hardwre in several places and have some other more imediate problems with the instability from failed fusions and broken hardware.
I also had an intrethecal morphine pump implanted last june. After years of every non opiate pain management method you can imagine, surgery, PT and then long acting opiates for about 4 years before the pump. Now I may have to find someone to do a patch job on me rather than an unrealistic revison of everything.
I've been through 4 PM clinics, ranging from 8 hours a day 5 days a week for 4 weeks to 1 week programs, not to mention rounds and rounds of PT and PM docs in private practice that all had their own way of manageing pain and if done correctly anyones pain could be managed, even in hopice with their techniques. I would love to see them make that speech in an actual hopice where people are in severe pain. Or suggest someone in severe pain read a book to learn how to "own" their pain.
All PM docs have their theories but thngs were completely unproven back then, but have led to a better understanding of chronic pain. This was before long acting pain meds were even an option or on the market. Things have changed alot with the acceptance by some docs to prescribe these meds. I guess I'm getting to be an old timer despite what I keep telling myself. LOL
You might want to ask him about about the Librax, Botox also sounds promising if youur insurance would cover it . A pain management doc that can document other attempts to manage the problem and write a letter of neccesity to get it approved may be more helpful than a GI, I doubt they have done many botox injections. Getting something approved for off label use is getting much harder with HMO's and all the control Ins has over our treatment options..
My wife has neck/headache and feet problems and got really good neck and headache results from botox and it's been almost 3 months. The doc did mention there are lots of women that would have loved to have 2K in botox approved by insurance. They don't cover cosmetic use.
Whatever it takes, I understanding wanting to know the cause. Wen they couldn't figure out why I still hurt after fusions, I was treated right poorly. I was supposed to be fixed now. But relief seeking becomes drug seeking and physical pain gets called psych pain, I pretty much feel like I have been there and done it all. Sadly, I'm not the only one. We have lots of folks that have been therer and all they got was a lousy T-shirt.
How long has this bee going on. Iis it like the spasm I described but leaves behind a dull pain that never goes completely away? There are also some foks with IBS that use opiates as a way to help, If you were in another country, opiates would be a common treatment for GI problems.
I don't know if any off us really ave a clear cut answer as to what went wrong, or what's causing the pain. Not knowing and not showing it, adds a whole nother spin to the joy of chronic pain.
Welcome abord, I'm sure more of the great folks would have responded had they known what your dealing with. but it's one of those things that if you haven't experienced it, it's hard to comprehend. A what... spasm? LOL
Ah. My old friend levator ani syndrome. I have been "dealing" with this for years. I've been to specialists and had 2 sessions of electrogalvanic stimulation which consisted of 6 - 45 minute episodes with a probe that sends a various degree of smooth muscle electrical charges which actually stop a spasm, but can also initiate one.
I had better luck with this than any of the many drugs that were prescribed for it including valium and oxycodone.
I had prostate cancer diagnosed in 2/2004. I had EBRT as I was too high a risk for surgery due to other health problems that took almost 3 months. In October, I was diagnosed with a TIA after a trip to the ER and subsequent 1 day hospitalization, as the tests that needed to be done would have to wait until Monday. ( Don't go in the hospital on a Friday.)
My PC sent me to another neurologist, who sent me for OP testing where they found a problem: my heart muscle was dying for lack of oxygen due to something.
December, and they found the something to be blockage of a main artery so I had a triple by-pass for Christmas. During rehab, rectal bleeding with spiking blood pressure almost put me back in the ER.
Seems the rectal bleeding was a result of radiation as it has a name, radiation enteritis / proctitis. But my PC and the oncologist said it was hemorrhoids without as much as an examination. The colorectal surgeon sent them by FAX a copy of "what" was going on, so we all got on the same page.
He has done 4 "procedures" with formalin and laser to stop the bleeding since May, 2004. I had come out of anesthesia once with levator ani spasms that morphine finally conquered.
The last procedure and all was well until 2 days later. I have been unable to go anyplace since, as I have no warning when the spasms are going to get more intense, or I start leaking blood mixed with other less pleasant formations that are part of this healing process.
I am taking baths, using cortizone foam, opiads, and muscle relaxers plus three blood pressure meds and one for cardiovascular disease.
No more $ for therapy if I could get to the therapist. Home is gone. Chapter 7 after all the 401K $ was spent.
Life after 55 has been a bit of a stress, but there wasn't any guarantees in the first place.
For the person who wants to get some relief, all I can say is good luck. Better have plenty of $, PLUS medical insurance, if you live in the USA.
The Following User Says Thank You to Migsoon For This Useful Post: mike909 (04-27-2011)