Apply for SSD or no?

[JCappiello]

Hi my name is Jenn, I am 26 years old and have a 2 1/2 year old daughter and am engaged.  I was diagnosed with Chiari Malformation type 1 in Feb. of 2012.  Initially my symptoms were daily headaches, sharp shooting pains in my head, neck pain and nausea.  I was also diagnosed with central vertigo as well.  Around June of 2012 my symptoms kept progressing.  Presently I am dealing with the above symptoms as well as flashing lights, extreme light sensitivity, pre-syncope, difficultly focusing eyes, lousy memory, occasional slurred speech, hard time finding the right words, electric shock sensations through my body, weakness, extreme fatigue, pains throughout body, pressure/pain in eyes, tingling of hands and feet, brief confusion, imbalance, feeling of un-even ground, and other things.

My neurologist recently sent me to go see a neurosurgeon - who was a little skeptical if my symptoms were related to the chiari malformation because my herniation is between 8mm-9mm. I had an MRI with and without contrast and no blockage of spinal fluid.  Since May of 2012 until now (currently on short term disability) I have missed over 90 days of work.  Luckily I am in a union or I would have been fired by now.  The neurosurgeon suggested I go to the Chiari Institute in Long Island, which I am currently waiting for a call back.

I honestly feel unable to work, but am truly unsure of what to do, I just got my degree in October of 2012 which would allow me to excel in my career, but I just feel unable to.  I haven't mentioned SSD to my neurologist yet - I have an appointment Thursday.  I would appreciate any advice you guys have to offer.  I mean if all of these symptoms aren't from the Chiari then what could it be?  I use to be an energetic woman, who loved to work and would take overtime whenever possible - now my life has completely changed.  Would I have a chance with SSD?

[JCappiello]

Yes, I have to learn how to keep hope alive.  Its kind of hard when your hit with all of these dx's and feel helpless to find a Dr. that TRULY understands the severity.  I am so glad I found this site =)  Everyone on here is a true pleasure to be able to talk to  

[wnzday]

It's hard to say, every case is different. But with other dx's and the fact that you are continuing to spiral, i definetly would not dismiss it.And just because you have not had any surgeries doesn't neccessarily mean anything. There is always hope!

[JCappiello]

Thank you for all of the advice.  Yes, I definitely think a lawyer is the way to go.  I was diagnosed yesterday with severe POTS -as well as all of the things I mentioned in the above post.  The only thing is unlike you it has only been a year since my Chiari dx (Jan 2012).  I was OK with the exception of central vertigo, chronic headaches and nausea along with neck pain, but around June 2012 my symptoms starting spiraling out of control and have been getting worse since.  That is my biggest fear - since my dx is fairly new I feel that they might not take me too seriously.  I have had many tests done, but no surgeries, so I also feel that they may look at that badly as well.

[wnzday]

Yes, I had seen several docs before my NS, It's very important for you to amke sure that You get ALL medical records. SS will want to review and see what steps and methods of care from doctors have been taken to try and fix . Everything is important. It will be a lot of work for you to round up all your records but make sure you have evry doctor you visited. Make copies for yourself as well and keep them. I have 8 years worth (9 now) of medical records supporting every doctor seen and every procedure, etc that had been done in attempts to help me.

Also I would suggest getting a lawyer, the process is long and can be over-whelming, but with a laywer they do all the work for you and they know the ins and outs of the law. I used Parmele Law Firm, They were wonderful, and you can actually find them on-line. I encourage you to call them. They will walk you through step by step what you need to do and what they will do.
Good luck! Let me know how things go for you and you can always send me a private message if you would like.
God bless.

[JCappiello]

Wow you just uplifted my spirits about SSD.  Did you have any other dx's while applying for SSD besides Chiari?

[JCappiello]

I am in the process of getting my medical records together right now.  I am on short term disability as of now, but unpaid due to the huge amount of work I missed due to my various symptoms.  I am going to TCI to see if they recommend surgery or not (whenever they call me back!)  I have NO financial help, but def a great family to help me with my daughter.  I know I am young, but I have other dx's as well and am petrified of surgery.  I am hoping to get the TCI soon to get further clarity on whether or not I should apply for SSD.

[wnzday]

Hi there,
I read your post and it sounded like you were telling my story, lol. The others are right, not a lot of Dr.'s out there sweem to know too much about Chiari and say that the symptoms we experience are not related, but let me tell ya,  as I know other Chiarians can relate, they are all related! Some will get better after surgery, some do not. I urge you to be very picky about who you see and try to make sure you have an experienced NS who has treated and performed decompression surgery for Chiari.
I know how frustrating this condition is and can be. I also was a very independent, strong person and now have to have more help than what I would like, I often feel as if it has taken so much from me and it makes me angry. But don't get me wrong I have so much to be thankful for too!
On the discussion of disability... Yes it can be a long drawn out process, but on the other hand you could be able to get it very quickly. I had struggled for 8 yrs with my health, finally found a NS to figure it all out, had my surgery in 2010 went back to work, after a period of time (tried to) it didn't work well for me, I started going backwards. I applied for disability in May with a lawyer representing me, I was awarded in Aug. So there is HOPE, don't give up.    Prayers to you along your journey!

[Viva001]

(wasn't finished, lol)
... from all sources you can think of, including PT, pcp, counselor, etc.

Do you have LTD?  Recovery can take 1-2 years.  Can family help?  Not just financially, but with your daughter while you recover?

best of luck!

[Viva001]

Hi, welcome.  I am 6 mo. post op.
I have SSDI, from being Dxd w/chronic fatigue syndrome in 1996.  (I became disabled 1 mo. before getting my Master's degree).  It was a 2 yr. grueling & humiliating process, just when you don't feel up to it.
I (barely) lived on child support & food stamps.
I completely understand about the $$$ anxiety!!

But, IMO, focus on getting well, not SSDI.  You are young, with an early Dx; your chances of recovery can be excellent.  Those of us who are older, or who have co-morbid conditions, have to accept the reality of a chronic illness.
There are some sad stories here, but the success stories usually aren't; those patients go back to living their lives!  :)

Keep your medical records organized with supporting information.

[JCappiello]

I am still in the process of getting to TCI where I can speak to highly intelligent people!  I understand about the disability being hard to accept.  I have become increasingly depressed and anxious about the situation - I just got my degree this past October and I feel like throwing it in the garbage.  I hope your hearing goes well and I will surely pray for you - please keep me updated.  Good luck with everything. <3

[JCappiello]

Wow that seems like a lot of dx's for SSD to turn you down.  Unbelievable!

[JCappiello]

I will def say a prayer for you.  I wish you the best of luck with the surgery  Its so hard because I wish to go back to work and resume a "normal" life, but I honestly don't see it as a possibility.  I am also on an un-paid short term disability - which is making financial situations rough.

I am currently trying to get an appt with TCI in long island as well.  Did you just call or mail in the applications on there website?

[JCappiello]

It is very annoying because it seems like no one knows the severity about Chiari.  I hope all goes well with SSD.  Keep me updated. <3

[linnielou232]

I had surgery 3 yrs ago expecting to go back to work, but needless to say I never was able to return.  After a visit with my NS last June when he told me NOT to return to work I applied for diabliity.Very hard thing for me to except.  I was denied the 1st time and now I have my hearing coming up this Tues the 22 of Jan so please say a prayer for me.  I am nervous, but then at the same time I am ready to tell them my story.  I worked for 33 yrs and I wanted to returned.  As you mentiioned I was a very active woman and loved to work, but now I have accepted the fact that I can no longer work due to so many issue I now deal with.  Depression, anxiety, sensivity to light is a big one and noise.  So I will see.  I also heard it takes over a month to hear if it goes through so it is a long journey.  Wishing you the best.
Linda :)

[selmaS]

  Hi,..I have Chiari, ,tethered cord, ehlers-danlos, spinal stinosis, and bulging disks, mild scoliosis, hashimoto's thyroiditis, the raynauds I have is related to EDS, so not sure they would view it as a separate issue, but I have not been treated for the EDS yet as I need to go out of state for the specialist and it is diff when u do not drive and appointment waits r a yr long to get in....

So I was only dx'd with and treated for Chiari when I applied for LTD.

U can read my story in my profile page in my journal.

[padrssuck]

I understand where u are coming from. My neurologist told me ny symptoms (almost through exact same as ur)were unrelated to.my variation. And never even diagnosed me with chair. It took th TCI in long island to get a diagnosis. I am going in for decompression surgery on Thursday and am breaking out a bit. I have been through the same problem with disability. I am on an UNPAID medical leave from work and am trying to get something. Im hoping after the surgery...

[Sexybare]

I am 33 and applied for disability after 1st surgery in nov 2011 and was denied....my lawyer appealed and I hve my hearing feb 8th. But since then I've had second decompression and diagnosed with eds, raynauds, gerd,occipital neuralgia and autonomic dysdunction(tachycardia)....so hopefully my chances of winning are better now....idk we will aee. If the soc sec people had chiari they would understand, bit they don't even know what it is..a lot of people think its no big deal, when it really is

[JCappiello]

I am sorry to hear that. If you don't mind me asking - what dx's do you have and have you undergone any surgeries?

Along with my many symptoms and the Chiari Malformation I have a herniated disk in my back, panic disorder, generalized anxiety disorder, central vertigo, and depression - along with a pending dx for what is causing my tachycardia.  I hope to hear from the TCI soon and I will def. update after I go there.

I have attempted to go back to work on 3 separate occasions, but ended up back on short term disability over and over again.  I am so nervous because I just bought a house 1 year ago and I have a 2 1/2 yr old girl.  I have worked since I was 16 and I actually enjoy my occupation, but I feel physically/mentally unable to work =/ I guess I will have to wait to see what the tilt table test tells me and TCI.  

Thanks a lot xo

[selmaS]

  Hi and welcome to the Chiari forum.

Getting SSID can be a 2 yr wait if u can get it....so get as many DX's b4 u apply, I was even turned down for LTD that I paid into for 15 yrs...so I sit with nothing...

Be careful as Chiari alone is not consider a disability....u have to get DX's that are on the list..and that means testing....

I still do not have enuff in my medical file to get it....and I know I need to get a few more but finding Drs that recognize EDS and some of the related conditions so many of us do have , have a time getting SSID.

I thought I would go back to work, it has not happened...not sure it will....some do, but many times they r in misery...so not sure what is the best route for u....

Get a few opinions and compare them....

Keep us posted on what and when u hear from TCI....

Good Luck <3