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+  Social Security Disability Facts Forum
|-+  The Psychological side of Disability
| |-+  Spouse and Caregivers
| | |-+  Popping in to say hello
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Topic: Popping in to say hello  (Read 1536 times)
mom8w
~ Silver ~
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People helped 2
Posts: 81


« on: December 22, 2016, 12:05:05 AM »

Haven't been here much since hubby's denial at recon stage. Because of post-junctional failure, he has since gone through an extensive scoliosis and kyphosis correction surgery - he is now fused from T4 to S1 as well as C5 to C7 - surgeon couldn't correct kyphosis to the extent desired because of poor bone quality. After discharge from hospital for that surgery, he dealt with swelling that caused his left foot to ooze fluid - ended up re-admitted for 10 days for fluid overload, hypoalbumenia, cellulitis, and staph infection. Meanwhile, nerve studies and lab work by neurologist led to a diagnosis of CIDP, which is now treated with weekly IVIG infusions. Lots of steroids to counter potential allergic reactions, which means substantial weight gain. Allergic reaction to Enbrel, the third medication and second biologic attempted for treating the Ankylosing. Tried Cimzia after Enbrel, but it seems to weaken the immune system substantially, affecting breathing and inflammation levels. So now he's off the Cimzia. Surgery needed to fuse toe joints in left foot, so no further Ankylosing meds until after the surgery happens. I'm working with the local school district, back in the classroom after a 2-decade absence, so my time on my computer is quite limited.

We just got form letter HA L56, so kicking into gear with rep as she requests up-to-date records. Read through some other posts, gather it could be a helpful sign or not. Not getting hopes up by any means. Still, appreciate the insights I find here. Wishing all a blessed holiday season!
Logged
Age at Application: 53
Disability: ankylosing spondylitis (multisystem involvement), bilateral rotator cuff arthropathy, bilateral tkrs, bilateral basal thumb arthritis, bilateral osteoarthritis of hands/wrists and feet, degenerative disk disease c5-c7, spinal fusion t10-s1, cervical radiculopathy, asthma, Barrett's esophagus, bilateral heel spurs, fusion C5 to C7, instability at C4-C5, post junctional kyphosis and post junctional failure at T9-T10 (moderate to severe spinal stenosis at this level), CIDP requiring weekly IVIG infusions
Date Applied: 2/26/15
First Approval/Denial Date: d-8/21/15, submitted reconsideration 10/16/15
Reconsideration Approval/Denial Date: d-6/23/16, rep filed appeal 6/27/16
Date Hearing Notice Received: January 2017
Hearing Date: Scheduled for March 2017
grove800
-
~ Platinum ~
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People helped 27
Gender: Female
Posts: 618


« Reply #1 on: December 22, 2016, 04:52:38 AM »

It's a wonder at this point he is even able to move.  That is a ton of hardware in his body, I feel so bad for him,  I have enough problems with my 4 level fusion. I will tell you that I met a dancer (customer) at one time and she was fused from too to bottom and driving and walking with a cane,

I wish him a speedy recovery and it is a long road,  very suprised he was given a denial.  What actually is he receiving the infusions for?  I also am receiving 5 to 6 hour infusions monthly for my CVID.  Common Variable Immune Defiency.  If you need any sort of financial help and can explain alittle more PM and I would be glad to share what I know.
Logged

😊
Name: Vicki
Location: IL
Age at Application: 59. Age now 62
Disability: Hypogammagobulimannenia , aggressive arthritis spine, 4 level cervical fusion, chronic pain, DDD,COPD,
Date Applied: 7/2013
First Approval/Denial Date: 11/2013
Reconsideration Approval/Denial Date: 5/2014
Date OTR requested: 6/2014
Hearing Date: January 19, 2016
Date Award Letter Received: February 3, 2016. per benefit letter on my SS website
Date Back Pay Received: February 4, 2016 direct deposit
Additional Info: fully favorable letter by mail Feb 6, 2016. Medicare started Dec 2015
mom8w
~ Silver ~
*

People helped 2
Posts: 81


« Reply #2 on: December 22, 2016, 08:11:56 AM »

CIDP is Chronic Inflammatory Demyelinating Polyneuropathy......it's the chronic form of Guillain Barre Syndrome. The body apparently goes overboard in developing antibodies to fight off a sickness, and the excess antibodies attack the myelin sheath. The IVIG gives the antibodies something else to attack. It is apparently a lifelong medical need to go through infusions to mitigate the neuropathy.
Logged
Age at Application: 53
Disability: ankylosing spondylitis (multisystem involvement), bilateral rotator cuff arthropathy, bilateral tkrs, bilateral basal thumb arthritis, bilateral osteoarthritis of hands/wrists and feet, degenerative disk disease c5-c7, spinal fusion t10-s1, cervical radiculopathy, asthma, Barrett's esophagus, bilateral heel spurs, fusion C5 to C7, instability at C4-C5, post junctional kyphosis and post junctional failure at T9-T10 (moderate to severe spinal stenosis at this level), CIDP requiring weekly IVIG infusions
Date Applied: 2/26/15
First Approval/Denial Date: d-8/21/15, submitted reconsideration 10/16/15
Reconsideration Approval/Denial Date: d-6/23/16, rep filed appeal 6/27/16
Date Hearing Notice Received: January 2017
Hearing Date: Scheduled for March 2017
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