Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

761 Members

8,021 Posts

0 Online

auniecoley 11/29/2012

Hi Everyone,
I have been a member here for a little under 2 years. I won't bore you with my whole story, but I'll give you some key info. I am a severe special education teacher, and absolutely LOVE what I do. I can't imagine not working with my students. However, I just had two shunt revisions, and have been out of work since October 17th. I have been a teacher for over 10 years, but the last 3 school years have been not so good.

-diagnosed 2009-2010 school year out for 3 months
-shunt 2011-2012 school year out for 2 months
-2 shunt revisions 2012-2013 school year and I've been out for a month and a half with no set date of going back

This is literally killing me, and is not good for my students either. I have my students for 4 years, grades 5-8. The students that I work with have significant needs around behavior, language, social skills, education, etc. My kids need a consistent teacher, and I'm really feeling like that's not me anymore.

My neuro keeps telling me that he "intends" for me to be able to work again, but has no time line. He told me that I need to be patient and let myself heal. He told me that I've had 3 brain surgeries in 6 months, and that I can't rush anything.

I'm so confused, I don't want to be disabled, but am I?? I have drained all of my sick time, and I am currently asking my school district to borrow from the sick bank. I currently have no income, but luckily have a little savings. I am definitely feeling better, but can't imagine being back in my classroom full time. I luckily don't have any aggressive students at this time. The kids in my classroom would never intentionally hurt someone, however one of my 6ft tall boys, does not know his own strength.

Are any of you disabled, and on disability? Was it determined by your neuro? Is disability a forever thing?

I'm sorry for writing a short novel, but I am very lost, and looking for any info anyone could give me.

Thanks in advance and I hope you are feeling well,
Nicole

mary1973 11/29/2012

This is "my" advice only, You make the call being disabiled, since your an insured worker, you should know best what your capabilities are at this time. Remember SSA defines disabled as not being able to be gainfully employed for a certain amount of time due to any imparment. This comes directly from their website
What your medical condition is;
When your medical condition began;
How your medical condition limits your activities;
What the medical tests have shown; and
What treatment you have received.
How we make the decision

We use a five-step process to decide if you are disabled.
1.
Are you working?
If you are working and your earnings average more than a certain amount each month, we generally will not consider you disabled. The amount changes each year. For the current figure, see the annual Update (Publication No. 05-10003).

If you are not working, or your monthly earnings average the current amount or less, the state agency then looks at your medical condition.

2.
Is your medical condition severe?
For the state agency to decide that you are disabled, your medical condition must significantly limit your ability to do basic work activitiessuch as walking, sitting and rememberingfor at least one year. If your medical condition is not that severe, the state agency will not consider you disabled. If your condition is that severe, the state agency goes on to step three.

3.
Is your medical condition on the List of Impairments?
The state agency has a List of Impairments that describes medical conditions that are considered so severe that they automatically mean that you are disabled as defined by law. If your condition (or combination of medical conditions) is not on this list, the state agency looks to see if your condition is as severe as a condition that is on the list. If the severity of your medical condition meets or equals that of a listed impairment, the state agency will decide that you are disabled. If it does not, the state agency goes on to step four.

4.
Can you do the work you did before?
At this step, the state agency decides if your medical condition prevents you from being able to do the work you did before. If it does not, the state agency will decide that you are not disabled. If it does, the state agency goes on to step five.

5.
Can you do any other type of work?
If you cannot do the work you did in the past, the state agency looks to see if you would be able to do other work. It evaluates your medical condition, your age, education, past work experience and any skills you may have that could be used to do other work. If you cannot do other work, the state agency will decide that you are disabled. If you can do other work, the state agency will decide that you are not disabled."

I applied, and waded through the process by myself, I was approved first time around. It took six months for approval.
SSA looks at the things above, but I believe what won my case was a combination of syncope, HA, the neuropsych eval, panic attacks, and the fact that I have IIH, and herniated cerebral tonsils. I can't stand, sit, kneel, put my arms above my head, squat, think, multitask. It makes it difficult to do anytype of work when you stand up and pass out falling into people, walls, things of that sort. I am mentioning all of this because I have seen others here ger denied several times by simply overstating the IIH issues, when infact you must overstate all of them, physical, mental, anything you can document do it, make a journal. Make sure your Dr. notate everything. Make sure you bug the hell out of them, phone calls, letters, appointments. Getthem to ADMIT they don't know how to help you and the treatments didi not work. My best advice, good luck to you.

mary1973 11/29/2012

The link is to the SSA list of adult impairments
http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

SeaSprite 11/29/2012

Mary posted an excellent answer.

I'll just follow on by saying that don't let it get so bad that you aren't doing a good job at work. I wasn't even aware that was happening when I suddenly got much sicker. I didn't even know I was sick, I was just in bad pain, confused, and puzzled. And the harder I worked to make things right, the worse the pain got and the sicker I got. A big circle down the drain.

I'll also add that after you decide you are unable to work, your doctors must support your diagnosis and that disabled conclusion and communicate that with your disability insurance and social security when the time comes. It's good to talk all that over with them before you leave work. In the meantime, do you have short term disability insurance? The standard for that is sometimes lower than for long-term disability.

TammyTooli777 12/02/2012

Talk with your doctors. It helps to have more than one doc agree that you cannot work. In my case, the fact that I cannot be upright very long at a time, so I cannot hold a job if I have to lay down every hour or two. I would then suggest that you get a lawyer who specializes in SSD. They can only take a percentage of your backpay, so they won't even take your case unless they think you can win. I also gathered a lot of information about PTC- symptoms, medication side effects, surgeries, and other associated effects from PTC. I gave two copies to my lawyer- one for him, and one for the SSD judge. I did this, because PTC is a rare disease, so not very many people know about this disease. That was the only way I could be sure that the judge understood what I go through every day and why I can't work anymore. I swear the information I gave them was nothing short of a novel! But I wasn't going to take any chances that they wouldn't be informed enough to decide on my case. There are a lot of PTCer's who have gotten SSD, but don't count on getting it by yourself. You do need the support of your docs and you do need to get a lawyer. Good luck, it is a long daunting road, but so worth it in the end!

deleted_user 12/02/2012

I worked for a school district as well before going on disability. When I finally figured out that I was not going to be getting better any time soon I asked for my drs support in applying for disability and if they would be willing to write a letter of support. I kept very detailed headache and migraine journals as well as dr appt journals to help the disability determinations person be able to disect the literally hundreds of appts and tests over the last few yrs. I held out as long as I could before applying as it sounds like you have and prayed and did alot of thinking about it trying to figure out what kind other work I could still do, because that is what they do trying to see what else you may still be capable of doing.
I hope this helps you and hope your having a good day!
:) Mandy

auniecoley 12/03/2012

Thank you all for replying, and giving me some helpful info. I'm seeing my neurosurgeon tomorrow for a follow up after my 2 shunt revisions. I had a tough day today, but was luckily able to sleep most of it. I have to have him fill out some fmla paperwork tomorrow, and I'm going to bring up the disability question to him.
I had a few good days last week, where I felt like wow maybe I could go back to school, but just a quick trip to Target with my husband driving, knocked me on my butt!

auniecoley 12/03/2012

Join the Conversation