Can anyone advise me as to how to get insurance approval for a ganglion impar block? My husband is completely debilitated with excruciating anal/rectal pain that began 20 months ago. After months of agony, visits to multiple specialists, trying lidocaine, Valium suppositories, nifedipine, hydrocortisone and an unnecessary hemorrhoidectomy, he has been diagnosed with nerve pain, the doctors do not know if it’s the pudendal nerve or in the Ganglion of Impar.
Our issue is that the insurance has denied coverage of the block stating that rectal pain is not a covered ICD 9 code for a sympathetic nerve block and he does not meet their criteria. This poor man is bed ridden and now on opioid medication within little relief. Can anyone recommend a solution? We live in Seattle, Wa but will travel wherever necessary to get him treatment.
Thanks to anyone that can lend advice
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I can't really tell you how to get approved for insurance but I have the exact same thing so here is my journey for the last year ..I found cyclobenzaprine muscle relaxer to be a huge help to stop the pain...i took 5 mg 3 times a day for 4 months while doing pelvic floor physical therapy...and yes it was extremely debilitating so much so that a colorectal doctor I saw was ready to do a sphincterotomy...and I decided to go to pelvic floor physical therapy instead which I have done every week for 6 months now....I also saw a pain doc and he said opioids don't work so he gave me gabapentin which is a nerve pain med....he wanted to do a ganglion impar block but of course my insurance wouldn't approve it.... A year down the road now I am about 70% better but I do my homework too ...stretches and diaphramic breathing every day.... My pelvic floor physical therapist does pudendal nerve glides and also mobilization of all my joints SI joints etc and it's miraculous how well it has worked for a lot of people ...she has equal amounts of men and women who go to her for these similar or the same reasons we have...some people get Botox and some get nerve and impar blocks with various results I started a chronic pain and illness group for sufferers and their fanilies.Many people get unessesary procedures because doctors don't really understand it so I would urge him to get evaluated by a pelvic floor physical therapist...they are really the only ones who understand it and he will get an evaluation.... By the way I went to two colorectal doctors the first one didn't have a clue the second one said I had pelvic floor dysfunction with some nerve involvement and he sent me to the PT...thank God!!fyi some people find cymbalta ,Amitryptiline,Lyrica and those kind of anti depressants and nerve medications helpful....it's a long journey but there is help and you can get a lot better....nerve decompression surgery is an option too but I would try all those other options first...also please read books a headache in the pelvis and heal pelvic pain...very helpful and in fact the authors who are doctors welcome contact from patients and they have a place in California where people can go to be assessed by their team...please feel free to message me any time as we all have to be there for each other
Thank you for all of this great information. He has started on Cymbalta and is seeing a pelvic floor PT but not too happy with her plan. She’s not aggressive in treatment (using only breathing techniques)
We have two consults with pain specialists in Seattle. Praying something works
I definitely believe you! It’s something I have to think about all the time. That’s exactly how I started out. Improvement is slow but progressing. Thank you for all of your posts. They have been helpful and encouraging.
Do they know if you have pelvic floor dysfunction or pudendal nerve involvement?what treatments/meds are you on and had long have you had it?and where are your symptoms?glad you are making progress as I am but I think you also get used to it and it's difficult to tell what normal is anymore
This is going to be long because I’m probably much older than most people on this board so my history is longer. I’ve been diagnosed with hypertonic pelvic floor dysfunction back in May of this year. Back in the eighties I had a anal fistula that was treated as an abscess for which I was hospitalized three times as it kept returning. I couldn’t urinate unless I sat in the bathtub. Finally I was sent to a specialist who fixed the problem in a day surgery!!! I also had extremely painful periods with debilitating cramps ever since I was a teen. Didn’t have ibuprofen in those days. So I lived with a hot water bottle and the pain. In my early twenties I was pregnant and had my appendix removed five months into the pregnancy. Durning that pregnancy I became addicted to laxatives as the prenatal vitamins made me so constipated. After that it seemed like I was alway prone to constipation. finally started taking Magnesium citramate and a better diet. I went on to have my tubes tied and ultimately a hysterectomy in 2000 to take care of the fibroids that were causing so much pain every month. Things smoothed out for awhile but eventually arthritis set into my right shoulder and low back and at the time my left hip and groin (so I thought). That pain turned out to be a hernia previously thought to be a swollen gland by my then Naturopath. About a year later 2012 I had a firm Hernia diagnosis from a new PCP and promptly had a surgical repair. After the surgery I became terribly constipated because of the opiates pain pills which I only took for two days. I then took magnesium plus many products to help relieve myself, ultimately losing control of my bowels. I couldn’t sleep or leave the house as I had to race to the toilet every fifteen minutes! I was alone at the time and it was dark and stormy outside and by then in my soul. I just wanted to crawl into a hole and die. After a week of misery I got back to see the Hernia doc and he prescribed an ointment to relieve the raw and burning pain I was experiencing in my anus. ( clearly not his thing). I finally regained control over my bowels using homeopathic remedies and doing anal kegels? After all of this I vowed to get in the best physical shape I could. I’d lost thirty pounds and a year of my life throughout that whole process. After the Hernia repair and a shoulder surgery I went to PT for my low back pain, I also started Tai Chi three time a week and eventually got back in the habit of working out at the gym . After three years of working out and upping my game, one day I went home feeling exhausted and the following days I was so sore in my hamstrings, hips and pelvic area. I just figured it was because I’d upped my weights and I needed to work through it . That made things worse. Unfortunately this pain presented itself in my Tai Chi and household chores or anything that required bending over. I’ve lost track of how many times I saw my PCP who would then send me for more X-rays and then to PT. I swear a lot of that PT I did made things worse. I was told to do the exercises and stretches 2-3 times a day and I did that. Come to find out they tell you that hoping you will do them once 😜 Back to the PCP who sends me to a physiatrist who gives me a steroid injection in my hip. A couple months go by and the hip pain returns. I go back to him and relate I'm really no better off and am still experiencing burning bruising pain like I’ve been hit with a flaming baseball bat between the legs and a lot of tailbone rectal pain. He orders an X-ray of my tailbone which turns out to have some issues but nothing major. He tells me to go back to PT. where the senior PT guy works on my Obturator Inturnus! Bingo! The next day I’m feeling the best I’d felt in a long time. We may be onto something! The pain came back of course. Thats when I was finally sent to a pelvic floor specialist. It’s been close to six months of deep breathing and learning to let go while stretching and gradually adding a few strengthening exercises for my back and hip flexors. I’ve not been prescribed any drugs as the docs couldn’t find anything wrong. 😖Unfortunately I’ve taken enough ibuprofen to give myself a borderline case of stage three kidney disease so I don’t want drugs. I’m now 71 and with the blood pressure and pulse of a young athlete so I’m determined to get a handle on this. This board gave me hope in knowing I wasn’t alone. The book Healing Pelvic Pain has also been helpful know knowing I’m on the right track. I eat a pretty healthy diet without being extreme. I don’t eat a lot of carbs or sweets or salt. I enjoy a glass of whiskey everyday but don’t recommend anyone to start that if you aren’t accustomed to alcohol. A big no no for me is prolonged sitting in a slouched down on my tailbone. It reads as anal pain if anyone can relate to that. I use a heating pad or Sitz bath to help with more painful flares and sometimes I ice my pelvis after exercising. All are helpful. You are so right when you say you get used to the pain. Through biofeedback, prudential nerve gliding, massage of the Obturator Internus and abductors I’m slowly getting my life back. Trying hard not to over do is my biggest challenge. I want instant gratification like everyone else. When I asked my Dr how long it was going to take to get over this she countered with ”How long did it take you to get this way? “ At 71 that wasn’t what I wanted to hear. At least this is something I can have control over now that I have a plan of action. Sorry this was so long. You asked how long I’ve had this problem and I’d put myself in that 50 years or so category. It’s as complicated as life can be stressful. Bottom line I’m getting better and taking less OTC pain meds and getting out and about my daily activities. There are setbacks but I’m a lot more in tune with my holding patterns.
Thanks for the reply...yes I agree that the the adductor ,pudental nerve glides and obturator massage help a lot.. but I couldn't tolerate internal so she did the obturator in the outside....also the stretches and breathing...I am 65 so I understand being older and I have arthritis to some of my joints so sometimes the stretching hurts a little but it's worth it. I still take cyclobenzaprine muscle relaxer if I need it but I swear it help break the cycle when I was in a lot of pain I took it for three months three times a day and yes I am on my 7 the month of physical therapy once a week... unfortunately my PT left to live in Florida so I'm getting referred to another one in the same program....did you get an MRN to see if the pudendal nerve is trapped I'm pushing for that right now even though I'm getting better I would like to know.... my PT said that I have pelvic floor dysfunction and she thinks it's just irritating the pudental nerve but that she doesn't think trapped or damaged...I know stress has a lot to do with it too.... So I have eliminated as much stress as I can out of my life which is hard to do and in this complex pelvic area who knows what could be going on!! it's so rich with muscles and nerves.... The worst part is trying to explain it to people because nobody ever has heard of it except a small percentage of the population who suffer from it!!I have one last question did you have a colonoscopy and how was it?? my doctor wants me to get one but I'm terrified it will start the spasms and pain off again
I had a colonoscopy several years ago and was surprised there were no I’ll effects from any of it. I was terrified of the prep but it wasn’t nearly as bad as I’d anticipated. Good luck finding a new PT person. They definitely aren’t created equally. A substitute I saw a few times was so modest about touching me I didn’t get the best treatment compared to my regular gal. After my Fistula fiasco years ago I’ve been stripped of all modesty when it comes to medical treatments and procedures!
We asked my husband’s pcp about cyclobenzaprine but because he’s taking amitriptyline there is a high risk of serotonin syndrome which can be very dangerous.
My husband cannot take any suppositories as he is hypersensitive to the glycerin/ melting product and it burns his anus/rectum so badly he just about goes crazy. He has tried a 10 mg diazepam pill with Vaseline inserted rectally with good results but physicians are very conservative in this area of prescribing benzodiazepines in pill form. Tried compounded baclofen but the burning kept him up almost all night..
He tried Cymbalta for awhile but once he increased his dosage to 60 mg he had horrible diarrhea which exacerbated his anal/rectal pain to the max.
He is scheduled to have his first pudendal nerve block on January 4th and I will let you know the results. Praying so hard for a miracle! I’m a nurse and believe his pain is much more related to his pudendal nerve (he has been an avid cyclist all his life) than the ganglion of Impar, which the UW St wanted to try first. He has been misdiagnosed for years (prostatitis, interstitial cystitis, hemorrhoids with an unnecessary hemorrhoidectomy in May). He’s been in a living hell.
He wants a diagnosis and hopefully the block will confirm it’s PN. We can then go from there.
Thank you for this wonderful blog and all of your personal experiences and advice
Yes let me know how the pudendal nerve block goes I was wondering if he had an MRN which is the MRI for the nerves? It's the same as an MRI but it can see all the small nerves including the pudendal nerve to see if it is trapped... I made my own suppositories little bit of CBD oil and coconut oil and they help ...I just bought suppository molds from eBay... I tolerate coconut oil really well rectally when I cant tolerate much there...my pelvic floor physical therapist said I just have pelvic floor dysfunction and with my muscles being tense and dysfunctioning it stresses on the pudendal nerve but she doesn't think I have entrapment, however after a year now my muscles are pretty much relaxed since I do stretches every night and I'm only using a cyclobenzaprine every few nights now but I will have a flare every couple of weeks where I have to take the cyclobenzaprine for 2 days to calm everything down... I am thinking just so I know I may get a referred to a neurologist and ask for an MRN.... It's all so crazy and especially trying to have people understand it like your family members and friends they just don't get it...I oh so I will be going to a new pelvic floor physical therapist since mine moved to Florida and I am curious to see what the new PT says she thinks it was/is...lastly I think it's hard to tell after so much time of having it if it's getting better or if you just get used to it because the mind body connection is fascinating to the point where some people never get a diagnosis because there's so many nerves and muscles in the area that can be an ongoing thing that we just have to manage it (which makes it more tolerable in my opinion)
He hasn’t gotten an MRN yet but I would love it if he would. It took the drs forever to even acknowledge that it could be PN. His pcp is still skeptical. The pain specialist he is seeing is using the nerve block as a diagnostic tool, along w adding steroid for longer lasting relief if it is PN. His pain specialist is Dr Jason Attaman. He has a good reputation from what I can see.
I can understand how horribly frustrating this is for patients with any pelvic floor dysfunction especially if you don’t have the support of family and friends. His pain affects me, too. We have been married 44 years and heading into what we thought would be a fun retirement. My heart is breaking for him. I’ve had to be a very strong advocate because he is at wits end and doesn’t have the energy to cope with a lot anymore. Pain is evil and robs you of so much!
Can you tell me what type of Cbd oil and coconut oil you use? I will make him some suppositories to try for sure!!
Thank you for sharing your journey with us, it really helps!
Where do you guys live?UK or USA?so you can get coconut oil pretty much any health store and even regular stores have it now....the CBD oil is available from smoke shops here in the US but you can send for it online....I will send you another message with a legit website...I just need to ask my friend where she got it for me.... I was also wondering if amitriptyline helps a lot with his pain.... And has he tried other meds apart from cymbalta like gabapentin I know he can't try them while he's on the amitriptyline because of the serotonin syndrome
Oh also forgot to ask if he has a sitz bath...I bought one online that fits over any toilet...and it def helps lower my pain level....also do heating pads pads help him?..I use them and also got a coupla portable ones that plug into a small extra charger that can be concealed in a couple pairs of underwear...whatever works I say!!!
We live in the US, in Seattle WA. Is there a certain type of Cbd oil? I see all different types. I ordered the suppository molds and I’ll get the oils. Thank you.
Yes, we have the sitz bath for over the toilet and they definitely help, especially after a bowel movement when his pain is aggravated. Haven’t tried the heating pad but we will now! And I like the idea of the portable charger.
He has tried gabapentin but has the same side effects on him as Cymbalta, terrible diarrhea. His dr said if he weans off the amitriptyline he can try cyclobenzaprine. He’s afraid to wean off for fear his pain will worsen. He’s been on it for years when he was diagnosed w interstitial cystitis. He really doesn’t know if it helps the pelvic pain but it definitely helps his bladder pain.
Diazepam definitely helps his pain both orally and inserted rectally with Vaseline. But the drs are extremely strict and cautious here about prescribing any benzodiazepines. It gets frustrating, for sure.
Okay you can go to hempworx.com that's my friends website and they will advise you on what CBD oil to get mine was full spectrum and I mixed about three drops in a jug with a quarter cup of melted coconut oil and then I put it in my suppository molds ...if you had any problems just let me know and she'll probably talk to you directly...another thing I forgot to mention when I was first diagnosed with interstitial cystitis which ended up going away but so it's probably was PFD anyway I used and I'm still using this I think hopefully if it's from Walgreens I don't know if it's Duane Reade where you live but anyway you can send online for it too...60 tablets what about $12..you take to when you're going to take eat anything acidic and it takes the acid out of food and drinks
Wow! I think the IC is all related to this. He takes prelief, it takes the acid out of food just like you mentioned. We get it online.
I will contact hempworx and get some Cbd oil. I’ll keep you posted as to what helps, how his nerve block goes... praying for all suffering from pelvic pain!
I forgot to say that there is also a pelvic pain clinic in Cleveland that both men and women can go to for help...I would just Google it but maybe some other people in here will know more
i have had surgery , it helped somewhat, i have found that cbd/cbg oil as well as diazepam both orally and rectally helps the most as it is a nervous system problem, and all of these seem to settle down the nervous system. also he should stay away from coffee or any other stimulant. good luck
Do you mind telling me what surgery you had do you mean you had the decompression surgery or the ganglion impar block I wasn't clear on that ....I am also replying to this post but I saw your post and was interested and also is your diagnosis pudendal nerve neuralgia?have you tried any meds apart from the ones you mentioned?thanks
suggest doc includes Chronic pain reflex syndrome as a indication - in addition to his current icdn code - and include anxiety and depression. CPRS is recognized as valid icdn code. This is code that is often recognized for disability in US (along with history) ... and in my case approved the neurostim surg. Insurances vary, but as we know, its the pain that is debilitating. My primary MD, altho not a PN expert, included these from the onset, which in hindsight was the basis for LTD approval and validation of a nerve issue. just a suggestion.
Thanks, but how was your doctor able to get the diagnosis? Complex regional pain syndrome has 6 categories that need to be met. The pain category is easy but the others include change in temperature of skin, swelling or sweating, change in the way your skin hair or nails look, decreased range of motion, loss of muscle control.
My husband’s pain management dr at the University of Washington stated he couldn’t use that dx. Anyway, we are seeking a second and third opinion.
Honestly I don’t know details bc all the docs included crps & ssdi & my Cigna Ltd through employer accepted it. I’ve been a mess for 6 yrs - lost 40 lbs, and it seems like every system has been impacted to some degree. Good question !
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