SSDI, There is hope!

Question

My Journey
6/2011 Surgery #1 Decompression craniectomy, laminectomy duraplasty 
5/2012 & 6/2012 Pseudomenengiocele CSF leak- failed blood patch x2 
7/2012 Surgery #2 Revision Craniectomy and duraplasty 
12/2012 Surgery #3 CSF leak Pseudo Revision craniectomy duraplasty 

I applied for SSDI September 2012 and was denied in November, I appealed after my second surgery in December and received notification today that I was approved! I can't believe it, I was fully prepared to be denied again. I feel like a million pound has been lifted from my shoulders. Keep fighting friends! We can win!

My diagnosis' - Chiari One malformation, S/P Decompression Craniectomy, C1 Laminectomy with Duraplasty, Recurrent Pseudomengeocele, C5-6 Disc Bulge, Mild Cervical stenosis, Cervical Spondylosis
Cindy

linnielou232 · Answer

Thanks so much for your support.  I was already denied once, so having this on appeal kind of scares me, but the Lawyer wrote to the court panel and it sounds good.  The Judge contridicited himself in his judgement statement and my lawyer pointed all this out.  So we will see.  I won't give up fighting.  I know I have a right to this and I now need it after 33 year of working, so I won't go down easy.  Thanks so much. 
Linda :)

selmaS · Answer

So sorry u were denied, but know this is typical for those with Chiari to get denied the first go round....

 Praying u get thru with positive results in the appeal.

linnielou232 · Answer

I heard from my hearing I was denied, but now have it in appeals which can take up to a year.  Please keep me in your prayers.
Linda :)

selmaS · Answer

U r very lucky....I did not have the same experience I paid for 15 yrs into a LTD plan and then denied and no way to appeal it...so for the last 4 1/2 yrs no income ...so it is not easy.....

SickofAnxietyDx · Answer

I am a secretary in a public high school.  For scans, I have had:  CT of Head, MRI of Head and Neck/with/without contrast, and MRA of Head and Neck.  Nothing was found.  I have been out of work for 6 months and more recently went back part time.  I have stopped seeing the chiropractor since the Upper Cervical Chiropractor suggested the CTE diagnosis.  Ultimately, I assume that I was approved because of the slurred speech and right sided weakness.  Both my PCP and the physiatrist agree there is some neurological deficit but they have not been able to diagnose it.  My work was amazing too, they knew when they witnessed my body going into tremors, along with the speech and weakness that there was a problem.  They called LTD and told them that they knew there was something wrong and hoped that they would approve me!

selmaS · Answer

Hi and welcome to the Chiari forum.

 May I ask what type of job u have and what symptoms and conditions u were DX'd with that ur LTD was approved, mine was denied and I had surgery for Chiari and need a few more...I also was DX'd with Ehlers-Danlos, cervical stinosis, tethered,cord, and mild scoliosis.....oh and Hashimoto's.

 What MRI's have u had done to date? A brain MRI w/wo contrast, a cervical spine, thoracic and lumbar spine MRI? A CINE MRI?

 Those DX'd with Chiari are told not NOT go to a chiropractor as it can make things worse.

 There are related conditions as u can see from what I listed I have, but there are more and we all need to rule all of these out as they can cause many of the same symptoms as Chiari.

SickofAnxietyDx · Answer

I noticed you live in Merrimack, NH.  I just happened on this website and I wondered if you ever found a diagnosis?  I live in NH as well, actually quite close to where you are.  I hit my head this past August and I have had episodes of slurred speech, right sided weakness, constant and sometimes worsened head pressure, erratic blood pressure and pulse, along with body tremors and ticks.  Most of these symptoms are intermittent, except for the pressure which is constant.  I have been diagnosed as having anxiety by two neurologists, but the physiatrist I have been seeing knows there is something, but he has not been able to detect it.  I have had the same results with MRI's.  They all come up clear, but the problem is when I have slurred speech, if I lie down the speech instantly clears and if I sit back up it instantly comes back.  I have been to a chiropractor who has helped to lessen the symptoms, but then two weeks ago her upper neck adjustment put me right back into my symptoms.  My physiatrist decided to try a hard cervical collar.  Within 30 minutes the right sided weakness cleared.  Then after wearing it for 4 hours, when I took it off the slurred speech, pressure, and right sided weakness returned.  I am just curious what you ended up doing.  I saw an upper cervical chiropractor for a consult and he said Cerebellar Tonsillar Ectopia, which is basically a Chiari Malformation 0.  My physiatrist is thinking to either have me go to NY or Yale for the Upright MRI and/or going to Chiari Institute in New York for a full work-up with the doctors there to see if they can diagnose my situation. I have not checked with my insurance yet to see if they will cover it.  I look forward to hearing from you.  I have been approved for Long Term Disability through my work, but I am working part time.  Again, I truly connected with your feeling that the recumbent MRI is missing my diagnosis.  I have had a message therapist work extensively on my neck and pull on my head and we come up with the same results each time, less pressure and slurred speech resolves...

selmaS · Answer

That is something I had not heard either , about ur children being eligible as well....

 Thanks for sharing, and knowing u did not have an attny is good to know too.

 The only caution I would advise is each state does these differently so, neone else should be aware of that.

Dicon · Answer

Congrats to you! I have my hearing on 3/21 and hearing your story gives me hope. My atty feels like it's a "slam dunk" and how I pray that he is right. I've been told the biggest key is to have a dr that will complete the functional capacity form or write a statement speaking to your limitations and my PCP did that for me thankfully. I also have many personal support statements (1 that my 7 yo wrote along with a picture that she drew that literally brought me to tears...if a 7 yo's brutal honesty isn't enough to make a judge realize what life is like I feel like nothing will). I am praying that I will be approved b/c it would take away a big piece of stress. And yes, you can receive benefits for your dependent children which is wonderful. I'm so happy for you. A huge sigh of relief!!

cynderski · Answer

Thank you everyone. I really was mentally prepared to be denied again and fully prepared to hire an attorney to fight for it. I still can't believed I was approved. I am convinced the only difference in my case was that I had another surgery between my initial denial and my appeal. 
Also, I received a letter from SSA that my children may be eligible for benefits also because they are 12 and 10 years old and have a "disabled" parent and encouraged me to apply for benefits for them. Didn't know this. 

Good luck to everyone who is fighting this same battle, it has been the toughest fight for me mentally and physically! But we can and will win!

linnielou232 · Answer

Congrats to you.  I had my hearing on Jan 22 and waiting to hear results.  Of course I received the judge who only approved 10 out of 67 SSDI cases, but I will appeal if need be, but praying this won't be necessary.  Congratulations to you.  I know what a relief it will be when it does get approved. Bless you. 
Linda :)