Quantcast

AVM Survivors Network

Anyone Apply for Disability?

Hello,
My family has been urging me to apply for disability because of the headaches I continue to have after 6 procedures. I’m due to have the Gamma Knife done next month and will wait for the recommended two-year period for healing. I’m a teacher, but have been substituting over the past two years for the flexibility in scheduling, which has affected our income, but released a lot of pressure on me in more ways than one. Any thoughts, or suggestions would be greatly appreciated.

Hi,

I’m also interested in this topic as I’m, for the first time since being diagnosed in 1989, concidering filing myself. It gets more and more difficult with each new symptom to be able to have a half as normal day of being productive.

Vicki, I would recommend talking to an attorney who specializes in SS disability. There are many who will not take your case until you are denied, but some offer free consultations. You should find out what your doctors need to say in order to be approved. If you do all of this before you apply you better your chances of being approved. I can tell you that generally you are denied disability the first time you file, that seems to be the norm. Then hire an attorney right away to file the appeal, you’ve only got 60 days from the date of the denial letter to file the appeal. Attorneys do not get paid unless you win your disability case so if they agree to take your case it’s a pretty good bet that they think they can win. I’m going through this right now (just filed the first appeal) and it is frustrating but should be well worth it in the end.

Trish,

If you don’t mind me asking… how long of a process has it been for you so far?

Kim

Hi Vicki, my family applied within a week of my brain surgery and stroke. I was fortunet in that the hospital and doctors were extremely helpful and knew all the proper terms ect. I know with stroke, there was one thing to be very specific about. The qualification seem to be specific in that you have lost both the function ans use of both one arm and one leg. Lovely government stuff, lol. Good luck:)

As I live in UK the system has some differences. I found it is best to do some research into the conditions that are covered, an AVM will never be on the list that someone in an office looks at to say yes or no to a claim. If epilepsy and other side effects, medication etc are included it is a lot more apparent to “uneducated” people.
Also it is best to get advice from a professional as here they don’t like you claiming more than once if you get refused the 1st time, it is worth paying for this if you have too. Here in the UK we have “citizens advice” who are independant of the government and were a help to me.

Kim, I applied in October of 2008 and didn’t get the denial until June of '09. Filed the first appeal also in June. Don’t know how long it will be before I hear about the appeal, just waiting.

Hi Kim,

Thanks for replying to my question. The productivity is definitely a problem, isn’t it? I find that I tire faster, and the more I find to do, the more “muddled” I am at the end of the day. I had symptoms of moodiness, headaches, sleeplessness, and what I consider now to be normal depression/frustration not knowing what was wrong with me. I went to my doctor who referred me to a psychiatrist (why do they do that with women?). He prescribed a boat load of drugs which kept me “up” during the day, and “down” at night. I applied then, and was refused based on the fact that I would “recover within 3 to 4 years”.

A year later, the AVM was discovered when I started falling in my classroom and dropping things I was carrying in my right hand. That was in 2006. I have had 2 additional procedures since March of this year, and am due to get the Gamma Knife, but my husband has been laid off and I don’t know when we’ll be able to get reinstated. I’ll have to do the work and research before moving ahead.
Thanks again.

Kim Palmer said:

Hi,

I’m also interested in this topic as I’m, for the first time since being diagnosed in 1989, concidering filing myself. It gets more and more difficult with each new symptom to be able to have a half as normal day of being productive.

Hi James,

Thanks for writing. I’m so sorry to hear about your situation, but aren’t we lucky to still be here? Trouble with my right hand and arm are what sent me to the doctor in the first place. Had I not gone, I would never have know about the AVM. I can still use all of my appendages, thank goodness, but I think many of us have the fatigue and some confusion, just from the procedures. I’m due to have the Gamma Knife, so I hope to be better in my two year wait afterwards. Muddling through is just hard on anyone, and really not that acceptable at work when you have 23 kids in a classroom! Gotta love the government.
Best of all to you!

James Larken Smith said:

Hi Vicki, my family applied within a week of my brain surgery and stroke. I was fortunet in that the hospital and doctors were extremely helpful and knew all the proper terms ect. I know with stroke, there was one thing to be very specific about. The qualification seem to be specific in that you have lost both the function ans use of both one arm and one leg. Lovely government stuff, lol. Good luck:)

Hi Trish,

Thanks for the advice. I’m planning on spending a lot of time this afternoon looking at my own paperwork to get it together to file. I think it’s going to be harder to go all this than going to work everyday, but I get to sit down at least while I do it! I hope your case is successful, and wish you the best in your recovery.

Trish said:

Vicki, I would recommend talking to an attorney who specializes in SS disability. There are many who will not take your case until you are denied, but some offer free consultations. You should find out what your doctors need to say in order to be approved. If you do all of this before you apply you better your chances of being approved. I can tell you that generally you are denied disability the first time you file, that seems to be the norm. Then hire an attorney right away to file the appeal, you’ve only got 60 days from the date of the denial letter to file the appeal. Attorneys do not get paid unless you win your disability case so if they agree to take your case it’s a pretty good bet that they think they can win. I’m going through this right now (just filed the first appeal) and it is frustrating but should be well worth it in the end.

Kevin,

You’re fortunate to live in a country in which you can get free medical advice. We’re working on our own health coverage issues here in the United States, but I can’t wait for the system to work for me. If I’m diligent here on the computer today, I may find that we have a similar service as well. I’ve seen many that are sponsored by attorney’s (our answer for citizen’s advice). Unfortunately, I don’t have my own attorney, but may have to look at getting one for this situation. I hate even considering it, but we do what we need to to get through. Sounds like you were successful.

kevin matthews said:

As I live in UK the system has some differences. I found it is best to do some research into the conditions that are covered, an AVM will never be on the list that someone in an office looks at to say yes or no to a claim. If epilepsy and other side effects, medication etc are included it is a lot more apparent to “uneducated” people.
Also it is best to get advice from a professional as here they don’t like you claiming more than once if you get refused the 1st time, it is worth paying for this if you have too. Here in the UK we have “citizens advice” who are independant of the government and were a help to me.

Kim,
Sorry it’s taken so long actually write back to you. I replied to my own question and am having to respond to others as well. Sorry! Just wanted to tell you that I’ve had problems with the headaches, fatigue, and sleeplessness. I was diagnosed with depression (I find that to be common among women) 4 years ago and took a boat-load of medications before being properly diagnosed. I had the oblation in July and was scheduled to go back for the Gamma Knife procedure. Unfortunately, my husband lost his job 2 weeks ago, so we’re really in need of assistance. I’ll let you know how it turns out!

Kim Palmer said:

Hi,

I’m also interested in this topic as I’m, for the first time since being diagnosed in 1989, concidering filing myself. It gets more and more difficult with each new symptom to be able to have a half as normal day of being productive.

James,
Sorry for the wait in responding. I did, however respond to myself! I had difficulty with maintaining control over my right hand before I was diagnosed. I dropped many things and had burning and tingling in the hand at night. I have lost some strength though on my left side for some reason. I’m earmarked for the Gamma Knife procedure soon, but my husband lost his job, and our insurance benefits, two weeks ago, so we’ll see. I don’t know that I have the time to wait for Social Security, but will alert the doctors. Very good advice, and I thank you for it. Take care. Despite my difficulties, I’m truly grateful to wake up in the mornings.

James Larken Smith said:

Hi Vicki, my family applied within a week of my brain surgery and stroke. I was fortunet in that the hospital and doctors were extremely helpful and knew all the proper terms ect. I know with stroke, there was one thing to be very specific about. The qualification seem to be specific in that you have lost both the function ans use of both one arm and one leg. Lovely government stuff, lol. Good luck:)

Vicki, Don’t worry about the delay. Believe me, I know what it’s like being so tired and all the other stuff. Some days I can’t do much but the basics around the house and I’m in bed for rest. Seems like I have about 1-2 hours of energy and when I’ve used that up I’m useless until I lay down and rest.

And I also understand the added stress of financial problems. We’ll get through it somehow. Keep smiling and keep your chin up even when you don’t want to.

Kim

Vicki said:

Hi Kim,

Thanks for replying to my question. The productivity is definitely a problem, isn’t it? I find that I tire faster, and the more I find to do, the more “muddled” I am at the end of the day. I had symptoms of moodiness, headaches, sleeplessness, and what I consider now to be normal depression/frustration not knowing what was wrong with me. I went to my doctor who referred me to a psychiatrist (why do they do that with women?). He prescribed a boat load of drugs which kept me “up” during the day, and “down” at night. I applied then, and was refused based on the fact that I would “recover within 3 to 4 years”.

A year later, the AVM was discovered when I started falling in my classroom and dropping things I was carrying in my right hand. That was in 2006. I have had 2 additional procedures since March of this year, and am due to get the Gamma Knife, but my husband has been laid off and I don’t know when we’ll be able to get reinstated. I’ll have to do the work and research before moving ahead.
Thanks again.

Kim Palmer said:
Hi,

I’m also interested in this topic as I’m, for the first time since being diagnosed in 1989, concidering filing myself. It gets more and more difficult with each new symptom to be able to have a half as normal day of being productive.

Hello vicki i’m also going through the same problem… Me being the head of the family and being a proud person the hardest thing is to ask for help… But my family asked me to apply for disability, and yes i was denied… One of the reasons was that it wasn’t going to last more than a year, its been a year and a half… Now i have just recieved a letter saying that they are transfering my case from a local office to the state office… many people that i have talked to tell me it is a battle… don’t loose hope and you should go for it just expect delays…

Hi vicky. We applied for DLA for Daniel …he was awarded the Low care allowance but we appealed against it and unfortunately they made no change…so we are to reapply next may to hopefully get at least the middle rate care and hopefully the mobility as well…I know DLA is very hard to get and alot of it is all wrong (my personal opinion)To me there is people claiming this and are not half as bad as my son mentally or physically getting DLA no problem!It is really all down to the way you fill in the forms so i get a local rescource centre to help with the form filling and fingers crossed we get the care and mobility rate that Daniel deserves as untill then he has to depend on family and friends to look after and care for him with no help from nhs and only receiving £17.50p a week care allowance on top of his incapacity benefit…so sad really the price you have to pay when you are ill and your income just does not cover it :frowning:

I have multiple vascular malformations through out whole body. I have to use a walker/wheelchair, have home aides and nurse to provide personal care and monitor my condition. I was diagnosed terminal in June because of the damage the AVM in and on my heart is causing. I am also on several serious medications that alter my mental capabilities. I applied for S.S. in 2007 and just recently got approved for it. Honestly it was stressful and tiring but worth it in the end. They (S.S.) even had me see one of their doctors, which was terrible. The doctor knew nothing of vascular malformations, he was rough and did not care to listen to anything I said. When I got the letter of approval it was noted that after further review of his opinion they(S.S.) didn’t agree with his conclusions. So stay strong and do what is best for you!

Hi Vicki,

My husband was working with GE at the time of his AVM the central part of his brain. He also was having money taken out of his pay for long term disability. He was off from work for a year or more so this was very helpful. He went back to work but had disabilities.

I to wanted my husband to apply for it. He has always pushed himself and had put it in his mind that he could work and do what everyone does. so he worked 32 years which 20 of those I have know him and married 18 of those. But really it has to be up to you in how you feel about it. do you feel like by not working you would have better quality life.

I could see that after working 8 hours and having a family and son that his quality of life with family he wasn’t able to enjoy because of being wore out.

GE in our area is getting ready to shut down. and for the last two years have just mad it tough on their employees, they were letting a lot of people go and putting triple the work on the rest of the plant, so that meant that he was doing more than what he really should be doing , but he did it and did a 100% job for them. they were not telling them what was going to happen with the plant if they were shutting down or changing the name nothing. this had a lot of emotions flare and people coming up to my husband emotional and complaining this became to much for him to where his was getting anixety attacks, could not sleep, sleep depprevation, he could not function, always thinking about work. So we prayed about it together and left it in Gods hands.

He went to work one day and just could not do it any longer and went to the company nurse and told him he wasn’t able to do this anymore. so the nurse told him to walk out and do not look back. the nurse some what knew about his record.

He went on short-term disability than long-term while at that time the company did ask him to have a test done a comprehension test so he did. this is when we knew the reality of his disability. When having the test done the Dr. spun around in his chair with his jaw dropped with shock of just seeing the result of answering the questions. The Dr. said that he did not know how he worked for 32 years with this condition.

We did not go to a attorney.

you do have to keep in mind the years that you have worked because this will determine how much you get with SS.

My husband had no problem with his. everything went smoothly and I think it only took 2-3 months for them to approve him.

He get his pension, long-term disability, and SS

Good luck and God Bless

Do you know someone that would be an advocate for you to help you fight this fight and not charge?

Irene C said:

I had an AVM bleed and craniotomy 50 years ago. I started working after school at 16, and worked for a lot of years as a paralegal except for a few years when my son was born. I never knew I could file for disability, and for a long time, other than thinking I lost peripheral vision in my left eye, I was ignorant to why I felt so different, and was slower than most. Once I figured out what occurred and what the results of the brain surgery were, I felt so much better knowing it was the AVM and not something I did which made me different. Then after working for a State government for years, around when I was 56, life started becoming harder to struggle with. I made mistakes, i was finding myself so disorganized, I fell more, and I finally caved under the pressure of trying to act normal when I was not. I applied for SSD and received it in 4 months. It may be they looked at my visual left field cut in both eyes, my age at the time, (56) and approved me. I filed for State short term and then long term and was approved. Then after 2 years the State said I was done with LT because I was JUST MENTALLY ILL. along with the other two categories who were also cut at the two year date because they were alcoholics or substance abusers. I was about to lose 900.00 a month, my health insurance and other benefits. It happened, and I lost the whole deal for a few months. After fighting the insurance company I lost and was told I had one more appeal. I retained an attorney sight unseen because of me living in FL and jurisdiction being in the other state. I found an attorney and was ready to fight for myself again. The Governor signed a bill just around that time, placing us two year limit people on the old State Pension Disability program instead of the new insurance program. I got approved, and now receive 400+ less a month in benefits, and did get the medicare supplemental paid for by the State. I was so angry at myself and still am for quitting the fight. I lost this fight and I know I was correct. The insurance company refused to look ay the evaluations, the fact that Social Security approved me. I want to fight them again, there’s probably still time, but I am almost 60, and I am so sick of fighting for everything. If I had money to hire good lawyers, I would. I can’t win being my own attorney.
beans

Hello, I just joined this group and came across your question. I applied for SS back in 1999 and was approved very quickly. I have what’s called Wyburn-Mason Syndrome which causes AVM’s to grow in the left side of my head. I had one in my jaw bone and surrounding tissue, the other came ten years later below the left nasal fold. WMS also involves the eye, my left eye hemorrhaged when I was 13 and a I have been blind in that eye ever since. When I was 19 I had more trouble with my eye and it was removed, because it was shrinking and very painful. I am actually very lucky because WMS usually affects the brain. I did have a stroke in April 2006, but they could not determine if it had anything to with my syndrome. At that time they did discover an aneurysm in the left side of my neck which was coiled 6 months after my stroke. I also suffer chronic depression which started about a year after they surgically removed my jaw AVM (age 15, 1987). I’m sure I was approved so quickly because I have an actual named syndrome that usually does not have a good outcome and not much is known about it. I live in fear that another AVM or aneurysm will be found. I also have chronic pain in my left jaw. I was 27 when I filed and had exactly 40 quarters to qualify for SS instead of SSI. One of the quarters I worked only one day. Before I was approved I qualified for Adult Public Assistance which helped during the wait. I was told everyone gets denied at first. I guess SS wants you to be serious an determined. I know I was lucky to be approved the first time. Even though I was approved right away my first check didn’t arrive for another 3 months. The back payment check was very nice though. Good luck on your endeavor. It’s definitely worth the fight. BTW, you can also make up to $800 while on SS in most situations. :slight_smile: