Health Organization for Pudendal Education

Before I was disabled I appealed every medication and procedure and won every time. Maybe not the first time it went through, but by the 3rd time I had won and got the money to pay the medical bills.

Now that I am considered disabled, I am able to appeal more since there are special clauses for disabled (at least with CIGNA) and was told to appeal the physical therapy I had over the original 60 I was allowed since I went way over that number recovering from all the decompression surgeries.

I appeal everything and win every time.

Tips to appeal:
appeal everything individually (as in individual procedure codes for every single item (meds, anesthesia, docs...)
send in too much paper work to flood them with information and proof that you are not lying about the condition
an explanation that is SHORT AND SWEET! Don't write a lot because it is like shooting yourself in the foot. We all downplay our condition so just state you need to appeal due to (neuralgia or the specific item you are appealing)

If denied:
confrence calls with docs are needed at times and my docs knew about this step and all were willing to schedule and make these calls
send in more paperwork on what you are doing (PT, nerve blocks...I know we all do different things so whatever pertains to you personally)
call yourself and explain you were denied, ask for a supervisor, let them know how desperate the situation truly is

I never had to go to the third appeal and pray you don't have to either. There is also a legal way to speed up an appeal I did for my medication once so ask about that as well if you need it.

Good Luck

Wow! What wonderful information! So far, I am in the process of having the Veterans Administration (VA) get me the pain meds and nerve meds that I need. I have been payhing for them out of pocket. My pain med, Nucynta, does not have a generic. I currently have BCBS of Alabama but this will end on May 15. That is one year after my husband's death. He died on May 15 at home from a massive heart attack at age 54. Anyway, thanks for the information. Debbie

When changing insurance companies, make sure the new companie knows and lables you as permanantly disabled if that is what you are.
Some companies use different forms and rules once you have a diagnosis of permanantly disabled but they don't tell you that.
Call your ins. company often and talk to many people there becaue different people will often say different things.
There is no training for the ins. people that answer the phones when it comes to disability, that is my opinion based on my experience, I'm not sure that is actually true.

When claims are run through the ins. company they will run them as if you are a regular, healthy person so you will not get all you are intitled to.
Make sure each and every claim is run as if you are permanently disabled once you have that diagnosis.

Know this is not politically correct, but I didn't know this going in and had to redo every claim.
It was a pain in the neck so I'm trying to help you out so you can do it correctly the first time.

Insurnce companies require Letters of Neccessity to even consider an appeal on claims.
All that means is they want a note on company letter head if possible stating what the doc saw and what they recommend as your next step.
It can be a paragraph, but docs don't know this term so you may need to write the letter yourself and have them sign it.
During an appeal lable and place these letters on neccessity in the front.

I had to write some of my own, Conway knew what is was so he wrote his himself (one after each of my surgeries so I have 2 from him).
I have 7 letters from OBs, surgieons, Quesada an anethesiologist, neurologists, physical therapists, MRI docs, Hip specialists and Pelvic floor specialists.

All they say is the findings of each doc and that the doc recommends (more tests, PT, nerve blocks, or that you should see another doc.)

You don't even have to do what the letter suggests. The ins. company just needs to know you didn't get sick right before you saw the PN doc.
The ins. company needs proof that you have been to see many docs. so they know you are always sick.

Hope that makes sense. I just learned it and had to go back to 1998 for paperwork.
Even being placed on hormone replacements for menstral disorders (which is what they called my issue 2 decades ago before PN was labled correctly.

Remember PN and PNE are not common words and that is not what docs called our condition decades ago.
When appealing look for ANY WORDS THAT SOUND LIKE PN even though PN wasn't used.

Examples: menstral disorder, unspecified pelvic pain, burning, shooting pain, numbness, stabbing feeling, adhesions

You need to think bigger than just PN and PNE. Docs don't use those words like we do and they don't know what they mean usually.
Get copies of all medical notes, test resuts, EVEN IF THEY ARE NORMAL.
Proof that you have ruled out other issues, such as labrial tears or bone issues like arthritis or ostio (I forgot the word fot bones going bad. it starts with ostio)

Ins. companie need proof that you are on a journy to heal but have been stuck seeing doctor after doctor and having test after test.
Help the ins. company understand your journey the most simplistic way you can.

Remember that we are the specialists with PN and PNE and we have to talk in terms they understand so use all the medical terms you can and lable with difinitions all you can so the ins. company can make sense of the piles of paperwork we have on ourselves as we fight to find a cure.

Again, hope that makes sense.
Good luck and fight for your money. We spend enough money on this illness so fight for every penny. You deserve it.

Wow, thanks Kat! Looks like some valuable info here.

As you may know, appeals have 3 stages.
Most know companies automatically deny claims the first 2 times
I just lost round 1 of an appeal (I have won every other appeal I have fought).
Cigna sent a written notice that I would be notified of round 2 of the appeal so I could be on the phone conference.
I called twice a week for 4 weeks with no information on when the second appeal would take place.
On week 5 Cigna sent a written notice that round 2 of my appeal was denied.
I called and informed Cigna that round 2 of the appeal took place without my notice and they reopened round two of my appeal.
Round 2 of my appeal involved me pleading my case for 10 minutes.

I asked Cigna what the requirments for round 2 of an appeal and they stated,
(WE ARE NOT REQUIRED TO ANSWER ANY QUESTIONS OR TO SHARE WHAT THE REQUIRMENTS FOR WINNING ROUND 2 OF AN APPEAL ARE.)

PLEASE BE SURE YOU READ EVERY PAPER YOUR INS. COMPANIES SEND AND UNDERSTAND WHAT THEY SAY SO YOUR RIGHTS ARE COVERED.

KEEP FIGHTING AND MAKING SURE YOU GET ALL YOU DESERVE FROM YOUR INS. COMPANIES.

REMEMBER WE ARE FIGHTING FOR THE NEXT GENERATION AS MUCH AS WE ARE FIGHTING FOR OURSELVES AND EACH OTHER.

kat wrote:
REMEMBER WE ARE FIGHTING FOR THE NEXT GENERATION AS MUCH AS WE ARE FIGHTING FOR OURSELVES AND EACH OTHER.

So true kat. Can you imagine the scenario when 'our work here is done'

Patient. . . .I have burning and stabbing pains in my genital area and. . . and. . .. , it's nasty doctor, please help.
Dr. Oh! sounds like you may have a pudendal nerve problem. Recovery will require a multidisciplinary approach. I will make an appointment with our specialist pelvic physiotherapist for you. In the mean time here is a prescription that may help, although of course we will carefully monitor the effects these drugs may have.
We also offer cognitive and minfulness training if the pain continues of course.
Many people find that these measures are all that is required but we have a number of local experts who will be able to offer additional treatments if needed.
Here is a leaflet from HOPE contact them and find out a lot more.
Patient. Thank you doctor, you have actually listened and understood my problem. I feel so much better all ready.

Instead of

Patient. . . .I have burning and stabbing pains in my etcetera. . . . it's nasty doctor, please help.
Dr. Sounds like you've got an STD/IC/VD/S1/L5/psycho/loco/gynaeo/Not Mineo problem. Hysterectomy? microdiscectomy? lobotomy?
Patient (quaking). . . .whatever you say Dr. After all you should know.

OMG, Helen! You kill me!!!!
I'm beginning to think you missed your calling in life ... is it too late for you to pick up role-playing and professional acting?!?!?
Kat - thanks so much for offering advice and sharing your experience with this very important subject matter. Unfortunately, this is something a lot of us will have to face and any extra help is appreciated during this extremely stressful and daunting process. I'm truly sorry this is so difficult for you. It doesn't seem right.
Hugs,
Karyn

Kat, I'm really sorry it went like that for you. I can really empathize with you because that's exactly what happened to me on my second round appeal with cigna. It was really humiliating to be honest because I had no idea that's how it was going to be and I wasn't prepared mentally for such rudeness. I fought through all 3 appeals and the independent review but in the end lost as I think I stated before even thought the independent reviewer agreed that Dr. Bautrant's surgery was the right approach for me.

So does this mean you've completed round 2 and are now going into round 3? Well, good luck with round 3 -- please let me know how it goes.

Violet