I finally got a hearing date!

[Captain Deb]

Well, family, I got a phone call from my disability lawyer and a hearing date has been set with a judge for March 21. (The spring equinox, no doubt!) I first applied in Sept of 03 and was denied twice. The meeting is scheduled to be held in a hotel of all places--an hour and a half drive down the mountain during the snowiest time of the year.

Money from my settlement, which my lawyer is pretty confident about, will go to my new bionic ear, and to pay off the credit card I put medical bills on.

I am both excited and scared. Anyone else out there get social security disability on the third go around?

Capt Deb

[ppearl214]

3rd time is a charm, Capt'n!   I'm keeping fingers crossed for you!

xoxoxoxo
Me

[tony]

I think double loaded - with ball AND chain
just to make sure they know you mean business ?
good luck
Tony

[Sam Rush]

AN's are usually not disabling. I went back to work 2 1/2 weeks after my AN surgery, have never felt disabled, even with total loss of hearing on AN side.  

[ppearl214]

Sam, question for you.... there are some folks here that have had life-altering AN surgeries (some even life threatening) and cannot perform their usual means of employment due to after-affects of surgery.....so am curious about how someone in that scenario would go about getting SSD... thoughts?

Thanks!
Phyl

[Captain Deb]

Sam, I totally agree that 95% of AN surgeries are not disabling. I was one of the unfortunate 5% who have suffered unrelenting incapacitating headaches for the first 2 1/2 years and they have tapered a bit in the past year and a half, but any kind of exertion, even going for a walk sometimes, can set one off. My specialist has diagnosed me with "cluster headaches with migranous components." Do a google of cluster headaches--they are nasty buggers.

Capt Deb

[Sam Rush]

The cluster headaches may  not be related to the AN.. Cluster HA's are a variation of migraine.  No one in our local  support group is disableled from AN, even those with facial paralysis and hearing loss. Dr. Brackmann at House has an air force pilot who returned to flying after AN surgery.

I can't think of a specific occ. that someone couldn't go back to, unless there were severe complications, like meningitis from a spinal fluid leak, or sloppy surgery causing  a more global paralysis than facial, or extensive brain damage causing intellectual loss.

[jerseygirl]

Hello, everybody,

Yes, cluster headaches can be related to AN removal. I did not know what headache was until after AN surgery (suboccipital). I have had those unrelenting headaches for 10 years during which I had two pregnancies. I do not know where  I found the strength to go on with the pregnancies despite the fact that I could not take any medication. I even had sciatica (not AN related obviously) in addition to the headaches in the second pregnancy which greatly added to my misery. Both suboccipital and middle fossa approaches are known for their potential for unrelenting headaches which is what I and Capt. Deb had respectively. Translab is not associated with headaches. I sincerely empathize with every headache sufferer. The only consolation I can offer is that the body starts to feel whole again but it happens after many, many years!

                Eve

[Raydean]

Hi Sam

My husband is one of those that found himself  disabled following treatment for his AN.  It isn't a matter of feeling disabled.  Rather it's the total sum of all  medical issues. It's very real medical conditions that are disabling and often times are quality of life issues. It is the goal and hearts desire that everyone with a AN have a positive outcome allowing them to resume the lifes they led prior to the discovery of the AN.  But due to size, location, experience of the treating medical team, and a lot of "just is" there are those that do find themselves in the disabled catagory. No one is asking for a "free ride"  Just  a fair and impartial hearing and the chance to honestly show the extent of the outcomes. 

Outcomes may include the loss of ability to talk, headaches beyond understanding, balance issues that limit being able to move fast, climb stairs or run.  Eye conditions, facial paralysis and the problems that come with it, swallowing difficulties. memory problems, loss of small motor skills,there may be upper and lower extremity paresis or limb ataxia and of course hearing loss. 

Because the majority of treated ANers have positive outcomes it makes it harder for those that find themselves with outcomes to receive  disabilty.  We have to prove it, usually a number of times. In their eyes it becomes a question of "Most everyone is better, why aren't you".  it's a hard struggle.  9 years after my husband was found by the Social Security Doctor to be "clearly severely impaired as a result of multiple neurologic deficits and symptoms as a result of complications of a right acoustic neuroma with hydrocephalus",  we still receive paperwork as to if he remains disabled.  Truth is, if at all possible he'd go back to work in a New York City second if he could. 

I am very glad that you had such a positive outcome.  I am also very glad that Debby will receive her hearing that she deserves.

Best to all
Raydean 

[Brendalu]

Well,
I am one of the five per cent.  My hearing is coming up very soon after two turn downs.  I have always worked with the public and usually fifty to seventy hours a week.  I have severve depression, no balance, dizziness, headaches , no hearing on the right side, no feeling on the right side of my face, I had a stroke and have broken several bones since my AN surgery.  I also have fibromalaysia and MS.  None of it was severe until after my AN surgery.  My AN surgery changed everything about me and my abilities.  I know that it has been hard on a lot of people on this forum and to say that it doesn't cause disability is hogwash and totally disrespectful to those of us who would really love to be our old selves and work like we did before, but can't.  I have had PT, OT, therapists and sheer will power and guess what?  I get up at 4:30 in the morning, take a nap at 8:30, take another nap at 11:30, rest at 2:30 and go to bed at 8.  Bright lights, loud noises, more than a few people in one room, all send me reeling.  If I had it to do over I would live wioth the tumor and my perfect hearing and work until I dropped dead and then people couldn't say "The AN,didn't disable her."  Sorry to go off, but I hate blanket statements and unless a doctor has had an AN he can't say how he would react or how his body would react or what the out come would be.  Yes, and I feel that I have had intellectual loss and well as my short term memory is the pitts.
Just my two cents.
BrendaO

[Captain Deb]

My cluster headaches  may not be related to my AN?  They started at 10 days post-op. I thought I was going to die during the first one, even with the pain meds the doc gave me post-op. Before that I a few headaches that I thought might be very mild migraines that went away with a Tylenol in an hour. You do the math.

Capt Deb

[Jim Scott]

I have no iidea whether AN post-op complications, especially headaches, constitute a disability under Social Security rules, which can be arcane and seem to favor mental problems such as depression over physical problems, which I find absurd.

My wife filed for SS disability - based on extensive spinal injuries caused by an auto accident in '97 - and it took almost 3 years and the retention of an attorney 'specializing' in Social Security cases for her to receive a favorable ruling and an 'award' (benefits granted).  This delay occured despite many physicians reports submitted to the SSA, including some physicians 'appointed' by the SSA to examine her and her medical records.  She is still collecting SS benefits.  She is sent a form every year to attest that she continues to be disabled and about every three years, she is ordered to submit to an 'outside' physicians exam (from a doctor, usually about 30 miles away, that doesn't 'know' her) to establish that her disability persists.  The assumption on the part of the SS bureaucracy that her 'regular' physician is lying or too stupid to know a faker from a genuine diisability situation is insulting to him, in my opinion.  Not that anyone cares about my opinion in the SS bureaucracy.  These 'outside' physicians, paid by the SSA, are not inclined to find a disability persists.  However, in my wife's case, her many spinal-related surgeries basically make her case.  Her neurosurgeon is also very well-known and respected in his field and does not pander to malingering patients as he is far too busy for such nonsense - and most area doctors know this. 

She endures all this bureaucratic nonsense for about half of what she earned while employed - for almost 30 years.  Fortunately, my wife had disability insurance at work, which was supposed to pay her 70% of her salary if she became disabled.  It does, in a way.  The insurer demanded that she file for SS benefits first, as they are - in their words - an 'entitlement'.  The insurance company pays her about 20% of the 70% they promised, because SS pays close to half of the amount that makes up the 70% of her former salary.  Clever, no?  She paid good money for disability 'income-protection insurance' and when she tries to collect on it, the company shifts most of the financial burden onto taxpayers in the form of Social Security Disability and it's attendant delays and hurdles, ostensibly to deter fraud.  Right.  Ah, well.  It probably could be worse - and we are grateful for the income.

I certainly wish Deb well at her SS hearing and I hope that her headaches, whatever the actual cause, AN or otherwise, can be controlled, if not eventually eliminated.  I cannot imagine having headaches that intense for very long.  As one of the 'lucky ones' who had an almost complication-free recovery from AN removal surgery (and follow-up FSR) I can only say:

Good luck, Captain Deb!   

Jim[/color]

[ppearl214]

To me, whether right or wrong, I think it also depends on what the livelihood of the AN patient was prior to treatment.

Example, I have been a hairdresser for over 25 years (now retired due to extensive back surgery in the 80's, but know my AN and Chiari situation would also give added complications had I not retired by now).  If I were still a full time hairdresser as my only source of income, then had AN surgery that extremely affected my physical well-being, preventing me from standing on my feet due to balance issues, dizziness mixed in with fumes of hair colors/perms, etc... then, would that then help me be eligible for SSD?  Keep in mind, to have to go through training to learn a new profession make not come easy to one either.

Just a thought for discussion.

Phyl

[Raydean]

Phyl to add to your posting, we were told that disability wasn't based on if he was able  to do the job prior to treatment, rather if he was able to do ANY job, regardless of difference in wages.   Any job could mean just that,  ANY job, even if entry level.  Go figure.

To add to this discussion I've often wondered in the event of an emergency where the need  for fast immediate evacuation from the work place especially in a high rise office building or other large building that it would be an libility for everyone if due to the outcomes the process was slowed down.  I know that when we flew to California we were given seats by the  emergency evacuation door. On seeing my husband we were asked to change seats.  He was not allowed  there due to safety reasons.   We'd like to think that the outcomes affect only ourselves, but in truth it effects everyone around us.  I know one ANer that almost got run over by a hyster because she couldn't hear it.

Hugs
Raydean

[ppearl214]

go figure is right, Raydean. I know of some here that have had to check into training for other jobs... was Chet offered such a type of training?

xo to you all,
Phyl

Phyl to add to your posting, we were told that disability wasn't based on if he was able  to do the job prior to treatment, rather if he was able to do ANY job, regardless of difference in wages.   Any job could mean just that,  ANY job, even if entry level.  Go figure.

Hugs
Raydean