The high price of PN

Discuss here about Medical Disability claims and Insurance possibilities for PN treatment options
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carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

The high price of PN

Post by carolynm »

....just thinking alot today about how expensive this whole mess is becoming. My husband has a good job and we have health insurance but it is still costing us thousands of dollars. Interesting that Loretta doesn't take insurance. I guess she's so busy, she doesn't have to. How are people who live paycheck to paycheck dealing with this medical condition? How are they getting the care they deserve. It just isn't right.

cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: The high price of PN

Post by Celeste »

LOTS of PTs don't take insurance, and lots of insurance doesn't cover PT. I guess you just have to be glad somebody will do the work and find a way to pay them if you think it helps your case.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: The high price of PN

Post by Violet M »

Cari, I was also lucky that my husband had a good job and we were able to cover all of my medical expenses but my heart aches for those who can't. I think many of the docs will take small monthly payments and some hospitals -- especially public ones, will write off bills for people who are unable to pay and qualify. I know one person who charged up their credit cards for their travel expenses -- not sure if they ever paid off the credit cards. One friend who has a painful illness called transverse myelitis (symptoms similar to PN) went bankrupt and started over. Once you've run out of money and qualify for public assistance then medicaid or medicare will often pay.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
JAT
Posts: 26
Joined: Mon Mar 21, 2011 4:54 pm
Location: Southeastern Wisconsin, U.S.A.

Re: The high price of PN

Post by JAT »

Hi Cari.

This too has been weighing on my mind a great deal and of course can releate with you and many thousands of others with chronic illness. My husband and I are self-employed and have a 2-person "group" insurance (you can probably imagine how pricey that is), then I work for my oncologist (medical transcriptionist for 30+ years... and yes - that involves sitting), and I work for a local hospital doing the same thing (transcription) for 5 hours a day/4 days a week and then every 3rd weekend @ 8 hours/day - sitting.... all day) just to contribute a few extra funds to pay our bills. Our business brings in good money (on paper), but our overhead is huge. We're in debt up to our eyeballs due to countless things and add insult to injury the unbelievable medical bills. I quite honestly I don't know how long we can sustain this madness. Both my husband and I are in our mid-50's, he has his own physical issues; multiple problems from the repetitive hard physical labor that he does subsequently requiring multiple surgeries, the multitude of things that he had done during his younger years that he's now paying for, and my problems are worsening virtually by the day... The stress of illness, the stress of "working" with an employer who truly couldn't care less if you're dead or alive - they would like nothing more than for you to quit so they don't have to pay unemployment (medical transcriptionists are a dying breed as institutions and physicians are switching to whats called "voice recognition"), the stress of dealing with physicians who don't have any answers to what is causing my pain, won't admit it (ego issues there), and refuse to assist me, and trying to keep up with our indebtedness is mind-bending (literally). I posted elsewhere on the disability forum, but no one answered; I'm wondering if there is a difference between public aid (medicaid) and disability. One friend tells me that its one in the same however, from what I've read they're two entirely different entitites. If the latter is the case, I've also read that procuring disability is extremely difficult. Any comments?
Coccyx fx.'86?, kicked same spot yrs.earlier.Endo,adhesions;laparoscopy,lysis adhesions,presacral neurectomy '99-felt great for 3 months.Tarlov cyst;neurologist said go home.PT;no help.Several more laps; clean.Pain meds,muscle relaxer,xanax-helpful.Pain & countless symptoms escalating.Current:I don't have a life,can't "hang on" any longer.I know I'm asking 2 much,but searching 4 informed physician/s who take me seriously,know what they're dealing with,and hopeful subsequent relief.
JeanieC
Posts: 198
Joined: Tue Sep 21, 2010 11:47 pm

Re: The high price of PN

Post by JeanieC »

Agree with Don, I do remember Ezer saying that you get Medicare 2 years after you are awarded disability. Disability in the USA can be from a policy with your employer or from your own personal policy, or can be from Social Security. A former co-worker of mine retired on disabilty due to a progressive neurological disease. She is paid 2/3 of her former salary through SS plus our employer's policy (both of them together). Now she has Medicare to pay her medical bills. This is called disability Medicare.

Medicaid differs by states and is for payment of medical bills to providers who accept it, which is often quite limited. Some states pay only for certain programs, such as pregnant women and children, blind and disabled, institutional (nursing home).
Medicaid pays secondary to any other health insurance you may have. Medicare for persons over 65 pays primary to other insurance, but I do not know whether disability Medicare pays primary or secondary.
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
make-it-stop
Posts: 68
Joined: Tue May 10, 2011 6:53 am
Location: Chicago, IL

Re: The high price of PN

Post by make-it-stop »

Tell me about it--I'm single, unable to work because of the pain, and am in an unfathomable amount of debt because of this.
5/11: burning in all areas innervated by PN; self-diagnosed PN
5/11: pelvic floor PT (PT #1) did not help after 2 sessions; she gave up
12/11: Kalinkin MRI doesn't show anything significant
12/11: Consult with Hibner; agreed with PN diagnosis, likely due to tight pelvic muscles
12/11 - 12/13: Tried 4 other pelvic PTs - tbh, they weren't great - no results
1/14 - 11/15: pelvic PT with PT #6 (better results, feel about 30% better after 2.5 years of PT)
Related conditions: MPS, S.I dysfunction
RachelJ
Posts: 5
Joined: Wed Feb 01, 2012 4:16 pm

Re: The high price of PN

Post by RachelJ »

I tried to get Medicaid once when I was unemployed and I didn't qualify even though I was making nothing and had no savings. I know have private insurance and it is expensive and the medical bills are a lot. I wish I could get on a group insurance plan to save some money.
Rachel - diagnosed in 2010 possibly as a result of labor, looking for short term medical insurance Texas that will cover me
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: The high price of PN

Post by Faith »

Make-it-stop,

I see you also have SIJD. Have you been able to treat this effectively? I am pursuing this in hopes it is the cause of my PN and not a true entrapment.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
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