Health Organization for Pudendal Education

Hello,

I've been getting treated for PN for since November by Dr. Andrea Rapkin in Los Angeles. I received caudal nerve blocks with John McDonald. They "took" but didn't do anything to make my pain decrease over time. Valium & Gabapentin did nothing to relieve my pain, and so we are moving on to Cymbalta and Lyrica. Dr. Rapkin said that no insurance will approve Lyrica unless you have a fibromyalgia diagnosis, but I see that many people on here are taking lyrica and I wanted to see if your insurance would cover it or part of it and how you got it done. I am living in the United States and currently have Blue Shield.

Thanks everyone for your help.

I am uk based and take 600mgs pregablin every day pre and post bilateral decompression surgery· I am prescribed this by my gp on the nhs· It is a life line for me even though still in pain and limited quality of life at the moment· I would fight your corner as the medication is effective· Good luck

I am uk based and take 600mgs pregablin every day pre and post bilateral decompression surgery· I am prescribed this by my gp on the nhs· It is a life line for me even though still in pain and limited quality of life at the moment· I would fight your corner as the medication is effective· Good luck

Thanks for all the info.

John,
I had PNE surgery in 2011 and will give you post info after telling you how I decided on surgery and that we encourage trying non-invasive things first. I went to a PN-aware PT (a list of them are off the homepage) and they sent me to Dr Marvel one of the PNE surgeons when PT said my ligamentscwere tight I probably had PNE and PT could not help until.post surgery. Dr Marvel confirmed PNE at surgery and prior had given me nerve blocks, sent me for CT guided nerve blocks and reviewed my history of constipation and major sitting due to foot pain. He then sent me for an MRN to rule out other medical problems (see Faqs off homepage for other things to rule out). Given my low quality of life along with a positive response to the CT blocks I was deemed a candidate for surgery. I chose surggery because my ability to sit was going down, I felt I would end up 24//7 at pain level 10 and lose my job. I am going to post this and start another for post surgery so I won't time out my connection.
Janet

John,
Here is post surgery. I forgot to mention I was given Gabapentin for pain that I continued after surgery along with oxycodone APAP 5-325mg where APAP is acetaminophen. I was told I could drive and return to work after 4 weeks and since I could not was sent to pain management for disability evaluation. Well after 12 weeks I was able to work 2 hours a day and eventually driving but nothing usually past 30-45 min and even riding only and Hour or two and stopping for break 45-60 min. The original pain group said I could rehab and prescribed tramadol to help with pain. I eventually moved on dealing with pelvic instabilty issues going to PT, acupuncture, and chiropractic and a new pain group and water therapy. From May until Dec 2011 I only worked up to 6 hour days and later after the holidays to some 8 hour days but with a different Gynecologist determined that 6-7 hours is enough until I retire Feb 2016. Pain was pretty constant until my acupuncturist came up with a new idea and then I was able to stop the gabapentin and just take tramadol or oxy as needed. I then fell this year and through out my pelvic alignment and am working my way back just changing from weekly to PT every other week. Other drawbacks since surgery are limited bending, stretching, twisting and lifting. Over about 5 pounds and I feel it where I could carry up to 30 pounds prior. Driving is one thing that seems much harder and I use an assortment of cushions to get by. I have a custom Roho cushion in one wheelchair at work to sit at my desk and homemade ones I use for meetings around the building. I also have another roho and wheelchair for home to eat and chopping for cooking at the table and wear an Si belt for cooking to hold my pelvis straight when cooking (twisting, etc). Not sure what else to add but let me know if you have questions.
Janet

Thanks for all the info.

John,
I made my cushion out of a gardeners kneeling pad and then put a sheepskin draped over the pad with the cut center section. The idea is to have ypur sit bones rest on the inside edge of the U or center cutout (I used velcro to keep the two pieces as a unit on the back. This pad has the rigidity but the sheepskin softens the contact.
Janet

John,
The issue with surgeons not accepting new patients came up due to the fact that some of the surgeons are gynecologists and the american board for gynecologists first said they could only help male patients for certain conditions not including PN/PNE then said only percentage of patients could be male or they would I think take away their board certification. We have the info posted somewhere but that is kinda the idea behind it.
Janet

I am on Lyrica and my insurance pays for it because gabapenton did not do the trick. insurance co makes you try that first. I know that is an old post, but someone may be wondering the same thing in the future , I just happen to come here to post something and saw this . Lyerica really helps ..i am on 75 mg 3x a day and a year ago i tried to cut back 25mg of just my morning dose and a week later all hell broke loose . it took those few days for my system to realize that it was missing 25mg and it was not happy .... made a huge difference. I was very surprised as i thought the lexapro was doing all the work of blocking the itching and pgad signals from going to my brain and my hope was to titrate off the Lyrica completely. So needless to say i am still on lyrical and the Lexapro etc etc it really slows up my thinking but i glad i have it and some day I hope to no longer need any drugs as we all hope.