Disability Approved

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

Disability Approved

Postby JMIL » Wed Apr 03, 2013 1:20 am

My full story is listed in Welcome Center: My Story – Any Thoughts Appreciated

I haven’t been able to work since May 2012. I am 41 years old and have worked since I was 18 years old and prior to that I worked at our family business (at the time) from 12 – 18 years old. It never occurred to me I would find myself in a position to need social security prior to retirement. Unfortunately, it happened.

I have suffered with pudendal nerve entrapment for many years and in July 2012, I finally had pudendal nerve decompression surgery. Although it was difficult for me to come to terms with being disabled, I eventually did and filed for social security disability, but was denied. After receiving my denial, I hired an attorney. He filed my appeal for me. He did not even need to add or request any additional medical records other than what I had previously submitted. I received a letter from the social security administration stating they once again reviewed my case file and determined I did meet their requirements and was approved for disability.

Although an attorney takes a percentage of the “back pay” award money, I personally feel it was worth it for me because I am confident without an attorney I would still be waiting for a hearing date which could take as long as 15 months.

I felt so discouraged when I first received my denial from the social security administration. Looking at myself and my debilitated state, I couldn’t figure out how I did not meet their requirements. Although ultimately I needed to hire an attorney, for me, it was well worth it. It is sad sometimes it takes an attorney just to enforce what we ourselves have already done when filing for disability and submitting medical records, etc., but in the end it was beneficial for my case.
Vulvar burning '06; Dr Goldstein 2 vestibulectomys '09 & '10; 6/09 hysterectomy resulted in 3 add'l surgeries for hemorrahaging; Dr. Marvel diagnose PN recommend surgery; Dr Echenberg '11 diagnose PNE & IC treatments unsuccessful for PNE; Dr Conway TG PN Decompression Surgery in 7/12 still intense vulvar burning & tailbone/SI Joint pain; Dr Santo 3/13 MRI arthritis in SI Joints, SC Joint injection SI Joint Injection 4/13; Dr Gordin Hershey Medical Center 4/13 intrathecal pain pump?
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Re: Disability Approved

Postby helenlegs 11 » Wed Apr 03, 2013 2:14 am

That is good to know Jen. Glad you were successful, eventually.
I had a similar problem, it seems to be the same worldwide?? but when it is something that is little understood and 'rare', the difficulty in getting some sensible decision from the authorities is extremely challenging. Having help has probably saved you a lot of disappointment and anguish. It took me about 3 years of supplying crucial medical information and subsequent repeated knock backs before I was also successful. I have countless letters saying no. I didn't get help but I didn't give up but boy it's been a battle. I got to a stage where I really didn't think that I deserved to get any help (that is medical however, as well as financial) This can lay a person so low! I felt as if I wasn't worth anything in society as I wasn't being taken seriously, worse really, I thought that no one was bothered enough to even listen. It's sole destroying.
Thankfully, I have a wonderful family and a well of self esteem, although the latter was almost dry. I'm not even sure if that last bit is correct, I think it's tenacity, the principal of the matter,in fact, justice. . .but not just for me.
It all ended up in a tribunal where I could actually tell my tale and they did listen. I was amazed, they actually listened. I was successful, they gave me the decision there and then. . . . and cried my eyes out!
This is for a disability living allowance (DLA) which is a touch over £200 per month, so my husband still gets to 'keep' me . There was never, a time or place that I would EVER have though that this state of affairs was necessary, me! on benefit!! the words don't even come easily from my mouth.
Although I am very grateful for the cash, I do feel defeated or at least of a substandard, sub class, being on benefit. I know that this is wrong, and I am aware that no one would employ me like this and I can't work ( that took a. . . . . g. . .. . . e . . . . .. s to type :roll: )
I think that you were so right to get help, as just having someone backing you, helps justify the process and happy outcome, if any justification was needed, which needs another :roll:
My tribunal days are not done unfortunately. I applied for another benefit as I fell at work, this one is industrial injuries (II) I have never come across such a nasty bunch of people as this lot btw. Anyway it's at the Upper Tribunal stage now. . . . 5 years later, another Judge is reviewing the whole thing which is over 500 pages long now. He really just needs to get me on the phone, so I can tell him whats been going on :) I reckon the whole 500 + pages, will just do his head in! I have a couple more pages to send him, giving my positive nerve conduction test results, which I hope will be a clincher. . . . it's been a debacle about my honesty (honestly :shock: ) and whether the problem actually exists :shock: :shock: :roll: .
Might reach 600 pages yet, but hope for a positive result soon, as well as an apology!
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Re: Disability Approved

Postby helen1000 » Thu Apr 04, 2013 4:52 am

Congratulations Jen and Helen. I am glad that some justice is possible in either US or UK.

As to me I am still waiting for court day. I hope it works.

And none of us should feel worthless or guilty. I am mentioning it because I felt intensely this way before and I feel this way sometimes even now. We worked our entire life and paid taxes. We have got in terrible situation and yes we deserve help.

Love,

Helen
8 nerve blocks rel 6 w.Met Dr. Peters,Dr. Antolack.Dr. Peters pacemaker,Dr Antolack TG operation.Maigne s.Internal PT at Dr Peters Nothing.PFCN block rel 6 w. PFCN RFA.Nothing.SI joint RFA.Nothing.Left scar tissue removal.Good.SIJD. PT of SI joint ME, and Prolo of SI and PS.Lumbar spine facets turned left. ME. T10-12 facets too wide.T10 turned left.ME and Prolo.Labral tears in left hip, spurs.Will have operation at 09/18/13,Met with Dr Conway.EMG shows left PN problem.Good impression of Dr C.
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Re: Disability Approved

Postby JMIL » Thu Apr 04, 2013 3:23 pm

Helen,
I wish you the very best of luck. As you can see with Helen and me, the road can be a long and difficult one when it comes to our disability system here in the US and the UK. It is sad and disappointing, but do not give up. We’ve worked all our lives and I’m sure if you asked anyone on disability suffering with pn/pne I am confident everyone, including myself, would choose to work and have our lives back rather than to receive disability. We are human beings with a medical condition that deserves the same recognition in our disability system as any other recognized medical condition.

My heart is with you as I understand the struggle within, but you are not worthless and please do not feel guilty.

I wish you the very best of luck.

Have the best day possible!
Jen
Vulvar burning '06; Dr Goldstein 2 vestibulectomys '09 & '10; 6/09 hysterectomy resulted in 3 add'l surgeries for hemorrahaging; Dr. Marvel diagnose PN recommend surgery; Dr Echenberg '11 diagnose PNE & IC treatments unsuccessful for PNE; Dr Conway TG PN Decompression Surgery in 7/12 still intense vulvar burning & tailbone/SI Joint pain; Dr Santo 3/13 MRI arthritis in SI Joints, SC Joint injection SI Joint Injection 4/13; Dr Gordin Hershey Medical Center 4/13 intrathecal pain pump?
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Re: Disability Approved

Postby rea » Sat Jun 01, 2013 4:54 pm

Congrats. I did not qualify for social security but am in the process of filing for medicare. If approved would be feb. 2015 before i get it. My early teacher disability amount will change in 2017. If i'm not better by then, I wont have enough after taxes and insurance is taken out to buy a gallon of milk. No joke. My disability got approved on first try though.
Social security almost always denies on the first try so don't get discouraged (for anyone else trying to get social security disability)
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Re: Disability Approved

Postby Karyn » Sun Jun 02, 2013 2:36 pm

rea wrote:My early teacher disability amount will change in 2017. If i'm not better by then, I wont have enough after taxes and insurance is taken out to buy a gallon of milk. No joke.

I too didn't qualify for SSDI because I was a former municipal employee. My disability retirement was also granted the first time. I can relate to the amount you're receiving, Rea.
Definitely NO JOKE! I get $648/month. Out of that, $625 comes right out for insurance, leaving me with a whopping $18/month.
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: Disability Approved

Postby rea » Thu Jul 11, 2013 2:10 am

Have you checked on medicare? I really hate to hear that..
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Re: Disability Approved

Postby AroraNightfire » Fri Oct 04, 2013 10:11 pm

I have an appointment to meet with a disability office later this month. I have a confirmed diagnosis of PN from Conway MMarch2012. I had nerve blocks with Quesada last fall. I am living in the state of Mass. I have not had surgery. I have seen Valovska before Quesada for other blocks which had no effect. I am unsure which records I MUST bring with me. Do I need everything? Everything, even dating back 10years ago when i was misdiagnosed several times by different doctors? I know I need to bring proof that I am US born, my SS card, my license. Has anyone been denied several times? Do you have to go to court to appeal it each time? I have a Gyno who is very well known. I have been seeing her since 2011, she has directed me to the doctors mentioned above. I'm thinking she might be able to help me get approved with a letter.....what does that office need to see? What should someone avoid saying to the disability office? I have also heard the SSD does not interfere with retirement, only SSI. Can anyone in Mass offer any helpful advice? What does this office NEED to see? What is unnecessary?

Arora
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Re: Disability Approved

Postby Karyn » Sat Oct 05, 2013 3:14 pm

Hi ANF,
You may find this link helpful:
http://www.massresources.org/ssdi.html

Best wishes,
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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