How did you get SSA Disabilty?

Discuss here about Medical Disability claims and Insurance possibilities for PN treatment options

Re: How did you get SSA Disabilty?

Postby Faith » Mon Feb 27, 2012 7:47 pm

[quote="]
KarynAbout the nerve blocks you received: Aren't those supposed to be diagnostic for PN? Do you have your records from Dr. Hibner? No diagnosis from him or the PM doc you saw???
[/quote]

Hibner's diagnosis says "possible pudendal neuralgia" it's listed as #2 after "pelvic floor tension myalgia" (which doesn't really help the case because that could be caused from lots of things, especially SIJD). My pain doc has put PN as a diagnosis and CRPS (when he was trying to get approval for me to get a SCS -which I'm not doing yet). And my regular pelvic pain doc always lists PN as my diagnosis.

Thanks for your kind words Karyn. I admire your determination too and your positive attitude. Hang in there!
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
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Re: How did you get SSA Disabilty?

Postby Karyn » Mon Feb 27, 2012 8:26 pm

You're welcome, Faith. I just don't understand how they can deny you with a (probable) PN diagnosis AND CRPS?!!?
The reason I asked you about the fibro diagnosis is because I know lots of people who got on SSDI the very first time, with just that one diagnosis.
Well, please let me know how you make out with your lawyer. I'll be thinking of you and wishing you the best.
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: How did you get SSA Disabilty?

Postby rick » Tue Feb 28, 2012 8:31 pm

I got disability even though I have two masters degrees, 40 plus years of increasingly higher levels of employment, etc. I once was the Director of a Vocational Rehabilitation Center, another time I was the Director of a Small Business Development Center.

And there was a vocational expert was testifying against me.

The probable reason I was approved. I submitted records of over two years of MD appointments at which my complaints matched my reasons for seeing the doctor. Also, each MD gave a diagnosis at the end of each appointment. Sometimes I had to ask.

And, there was objective physical evidence pointing to my claim of disability.

I fell in June 2005. I fractured L5. It was noted on an xray report I submitted.

Rick
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Re: How did you get SSA Disabilty?

Postby A's Mommy » Thu Mar 01, 2012 3:28 am

I haven't been here forever but the fighting that we have to do is unbelievable. Faith, get a clear CRPS dx, as that is clearly what may get you the SSA Disability before the PN will, and go with that.

I am furious that I have developed CRPS as a result of the TG surgery that failed to help me at all. How could I have predicted that though?

I AM NO LONGER A LIVING CADAVER

I WILL FIGHT THIS UNTIL I AM 100% HEALED AND GOD PROMISED ME THAT.

And in the meantime, I will do my best to help us all. I don't know what I can do, but even if it's a small part, it's contributing.

Love to the forum,

A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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Re: How did you get SSA Disabilty?

Postby Violet M » Sat Mar 03, 2012 8:17 pm

Love to you too, A's Mommy. I'm sorry you still have to be in this fight. Thanks for all of your contributions to the PNE cause.

Hugs,

Violet
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.
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Re: How did you get SSA Disabilty?

Postby michellem » Wed Apr 04, 2012 3:04 am

Hi, I have been applying for ssid for the last 2 and a half years then went to court and was denied in Arizona. basically it came down to I'm only 33. I was told that if I had been 55 yr older I probably would have gotten it. I was so mad. I have been unable to work since Feb 2009. I think the problem is there's not enough information on pne and pn and you appear to be fine. I got both in may of 2007 1 I had my first and only child. I've been diagnosed, I've had nerve injections I've had decompression surgery and I've had botox injections and a neuro stimulator implanted and I'm still suffering from pne and pn, nothing has helped . I had all this documentation and they still denied me. it's so frustrating. I even had an attorney the entire time and was still denied. now I have to start all over with a new disability date I've january 2012. my original disability date was august 2008. so now I can't get any back pay from that date, its now Jan 2012. my attorney said that I only have 20 percent chance to reverse the decision and I would get the same judge. so in other words it's almost impossible to appeal and win. now I'm going to start over and I can't use any of the previous medical information of the last 5 years. it's an uphill battle with this diagnosis to get ssid. I hope it's better in your state and I wish you luck. I also think the doctors whom diagnosis this need to step up and help patients with getting ssid.

Good luck,
Michelle-please feel free to email me if have questions mmorty6@gmail.com
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Re: How did you get SSA Disabilty?

Postby Karyn » Wed Apr 04, 2012 2:18 pm

Hi Michelle,
Wow! What a nightmare! I'm so sorry you're having such a hard time with this. It doesn't seem right they would deny you based on your age. This kind of pain is completely indiscriminate when it comes to age, sex, race or social status.
Who was your surgeon for the surgery? What kind of documentation did they supply to support your case?
My heart goes out to you for continuing to struggle with all of this pain and have to scrape and struggle with this crap, too.
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: How did you get SSA Disabilty?

Postby Faith » Wed Apr 04, 2012 9:43 pm

Michelle,

I'm so sorry. I'm afraid I'll be in the same boat as you as I am only 30. But I am not trying to get SSI (even though my husband doesn't make much they said it would be too much to qualify) just SSA disability. I haven't been through all the surgeries that you have, but I agree PN docs need to do more to help people get the financial help they need because of this horrible condition. Did any of the doctors write a letter on your behalf? My attorney told me this is the best chance I have at being approved. Do you have trouble sitting and standing? That's my issue, I can't sit of course, but I also have SIJD which I guess is what has caused my back, legs/feet to have knots and burn so I can't stand for long either. It's so sad that people like us who really need disability benefits are denied. I dont' know if you struggle with depression (I mean who doesn't with this condition, at least from time to time!), but I've been told it's often easier to get disability if you have a mental illness and diagnosis from a psychiatrist.
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
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Re: How did you get SSA Disabilty?

Postby Faith » Wed Aug 07, 2013 10:44 pm

I just wanted to update this thread to let people know who read it that after being denied twice, I was finally awarded disability after appearing before an attorney law judge for a hearing. The whole process took about 20 months. Of course my monthly payments are not huge and I'd rather not be disabled, but I'm grateful for the extra help at this time. As we all know chronic illness is devastating financially.
-11/08 vulvodynia began spontaneously around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manip
-Progressive widespread pain- central sensitization ?
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock, but pain is bilateral
-10/12 -bilat ischiofemoral impingement & labral hip tears/FAI
-12/12 - left FAI/labral hip tear surgery - no help so far
www.thepurposeofpain.blogspot.com
Faith
 
Posts: 695
Joined: Fri Oct 15, 2010 5:15 pm

Re: How did you get SSA Disabilty?

Postby Karyn » Thu Aug 08, 2013 3:21 pm

Congratulations, Faith! It's about time.
I agree disability income isn't much, but it IS helpful. Also, it must feel like a weight has been lifted off of your shoulders; not having this extra added stress in your life.
I wish you the very best!
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
User avatar
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