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Brain tumor diagnosis and Social Security Disability

connsteele
Posts: 232
Joined: May 2011

Our son was diagnosed with several inoperable brain tumors in April. He has one week to go with the radiation and first round of Temodar. The docs say that any treatment will not make them go away, just "slow things down." The radiation has taken a heavy toll (mainly because this is the second time to be treated with radiation for a brain tumor...the first was 26 years ago at age of 8 with a medulloblastoma.) We are now his primary care givers as he can't live alone due to major cognitive and physical decline (balance, gait, speech, fine motor). We asked the doc about his applying for Social Security Disability and they agreed it was a good idea (their way of saying chances are he won't ever be able to return to work). I've heard such horror stories about people being turned down for SSD, that claims are initially denied and that it can take a year or more for appeals, etc.

One reason I'm concerned is that the initial pathology from the brain biopsy was wrong (said it was a recurrent medullo, which is really unlikely after 26 years). The doc sent the slides on to an eminent cranial pathologist at Johns Hopkins who said it wasn't a medullo, but a "high grade glioma." However, the chemo doc said it is an astrocytoma III, acting like a grade IV (in other words, GBM).

However, when filling out the paperwork for SSD, the form wants the exact diagnosis according to the pathology report. I'm concerned that the "high grade glioma" diagnosis is too vague and the claim will be denied. If the report had said Astrocytoma III, then I understand it would he would be put on a fast track for approval.

Anyone else have experience with applying for SSD for brain tumor? Any tips for helping to ease the process?

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

Hi there,

I stopped working in 1993 due to multiple meningiomas (scattered in places they shouldn't have been) and applied for SSI.

The thing you have to know is that the government and almost all medical insurance companies hedge their bets. For instance, 10 people with the exact same condition need brain surgery. The insurance company will automatically deny all 10 claims. Out of those 10 claims, only 7 will re-apply. The insurance company has already saved themselves the cost of 3 claims. Out of those 7, all will be turned down again. Again, only 3 will re-apply for payment. The insurance company approves those 3 claimants for approval thereby having saved themselves the cost of 7 claims. This is well-documented and does happen. I've also seen it happen with Social Security.

That said, however, I am also well aware that mis-information or incorrect information on the SSI claim form can keep you from getting the needed funds. Someone in the SSI office screwed up my paperwork and instead of stating that I had multiple brain tumors, listed my reason for wanting SSI as "has vision problems". Of course I was denied. I then hired an attorney who specializes in SSI who was able to get access to the paperwork, point out the error and get me the financial assistance I needed. I was awarded back pay for 3 years plus a monthly stipend, not only for myself, but also extra because I had a child at home.

I also had to undergo a psychiatric exam to "prove I wasn't faking it". I have heard this was common back in the '90's. Not sure if it is now or not.

Also, please note that unless your son is listed as "permanently disabled" or "permanently and totally disabled" that he may have to undergo a review by SSI every 3-5 years. I have a review every 3 years but have always passed the review because of the documentation my doctors keep to prove that I still need the assistance from SSI.

Please don't be afraid to file for what your son needs. Get the process started now so that you have the time to get all the documents together from his various doctors and you can schedule any meetings or appointments that may be required. I have heard from others that they had a relatively painless procedure and didn't have to wait long for approval.

Good luck!

Teresa

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

can you collect ssi and retire if your not 62? My sis is 56 and could retire but doing it a little early.

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

The best way to know for sure is to go to the Social Security Administration's website or to call them directly.

Beckymarie
Posts: 358
Joined: Aug 2009

My husband was diagnosed with a GBMIV in 2009. We were told on the day of diagnosis he had about 12 months, but did make it 15. He went on long-term diability which was part of his company's benefits. They were extremely difficult to deal with. After a period of time (I think it was six months) we had to apply for SSD. We were told by the LTD company that we would be denied the first time we applied, we needed to appeal, would probably be denied the second time around and would need to get legal help to proceed from there. Not true. We were accepted on the first application. I found the people at Social Security Office very helpful. I applied for my husband's SSD over the phone which I felt gave me an opportunity to explain various points in the application or ask for clarification on some of the questions. The LTD company required information regarding the diagnosis come directly from his oncologist. Maybe your son's doctor could help you with that section of the application. Good luck. I hope it goes smoothly for you.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Thats pretty scary that all the reports were diffrent, how can that be?

connsteele
Posts: 232
Joined: May 2011

We wonder that too. The only thing we know is that it's not good. We had wanted to have a frank talk with the docs about our son's prognosis without him being in the room, but the doc wouldn't agree because our son is 34. Confidentiality issues, he said. I guess I want to protect him from any negative news, so we just dance around the issue when we are in the docs office. "The elephant in the room" syndrome.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

That elephant is sitting on my lap. I have pretty much stopped asking questions and greatful that I can go to the doctors appts at all. I keep up setting my sister and I dont even no that Ive done anything, other than everything I do is from love. Im a nurse and its so hard for me to take that hat off. I love my sister...
I work in a teaching hospital so Im am use to calling a doctor and asking for what I want for a patient.I was doing that at first. But have backed off. I started just making the sugestion to my sister before we go, but then she doesnt always ask. Her last appt he didnt say anything about the tappering off decadron.So when he left the office for a minute I asked her about it, she didnt want to ask, but did. He thought it was a good idea and told her to decrease the dose. But she didnt tapper down the dose. I think she thought it was my idea so she didnt want to do it. She just has not seen this much nurse in her sister before.
I am sorry your hands are being tied. If your son gives the ok the doctor can talk to you. Does he have a advance directive? You love your son its so hard not to make very thing ok for him no matter how old he is.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

Getting social security disability was a BREEZE for us.
I put in for it on-line and was accepted within 2 or 3 weeks after I finsished the paperwork.
My wife gets 1100 dollars a month.
There are certain illnesses which seem to trip alarm bells up at SS and brain cancer is one of them.
Fill out the paperwork on-line, send them some back up patient reports to reinforce the application.
I cannot imagine you will have any problem at all.
Best of luck.

elrain's picture
elrain
Posts: 8
Joined: Apr 2011

I am 26 and was diagnosed with Medullablastoma. I applied for SSD and was denied, all I can say is if you are denied, keep fighting!

Do your son's brain tumors now have any relation to his disgnosis when he was eight?

connsteele
Posts: 232
Joined: May 2011

Yes, the docs are very upfront about saying that the radiation he had for the medullo when he was 8 most likely caused the brain tumors 26 years later. Back then he had radiation to the whole brain and spine, with a boost to the posterior fossa, where the medullo was located. The brain tumors now are located in the same place where he had the radiation boost. While there is no definitive proof, the radiation doc said the circumstantial evidence is overwhelming that this time around, the brain tumors are caused by the previous radiation. I've always thought that cranial radiation is a blessing and curse. Even before he got sick this time, the radiation he had when he was 8 has had profound and long term effect (more than the chemo, which was prednisone, vincristine, CCNU). Because of the radiation, he is hypo pituitary, which means, among other things, that he was growth hormone deficient. As a result, his adult height is now 4'8", creating real social and psychological challenges. Previously outgoing, as an adult he is very introverted, has no real close friends. Plus, the radiation also caused some cognitive loss, but he dealt with that pretty well, going on to hold down a full time job and live independently until now. If we had it to do over again, knowing what we know now, we probably would have still gone ahead with the radiation because without it the medullo would have probably come back within five years. And despite all the heartache, it was still worth it to have him around for another 26 years. Of course, we don't know what to expect now. I think that because you are now an adult, some of those long term effects our son has dealt with (growth, cognition) shouldn't be an issue? Hugs and prayers for a return to good health.

connsteele
Posts: 232
Joined: May 2011

We just got back from the Social Security Office to apply for our son. I was flabbergasted to see that first of all, it could take up to 2 months to find out if he is approved. Then, IF he is approved, there is a five month waiting period before he would start getting benefit. So, what is someone suppose to do? Can't work...ran out of sick leave...bunches of medical bills. Just another chapter in this ugly nightmare.

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