As I sit here with a detached retina following vitrectomy, and my neuropathy and gastroparesis have all decided to join together. I find myself contemplating (and filling out a social security application). I’ve seen some horror stories in trying to apply and this is kind of stressing me out.
I’ve been working since I was 18 with Neuropathy (type one since I was 3 y/o, now almost 29). My doctors all say I can’t continue to work and I may need several years off to get everything back under control and just focus on my health and not work for a while.
I’m wondering if anyone has ever had all three complications, applied for social security, and was still denied? Did you need your NCS/EMG, as well as tests for Gastroparesis? My GI did not do any testing, just diagnosed based off symptims and reglan worked. Trying to put my mind at ease because I have nothing better to do, and I have a kid so I want to be sure that he is taken care of.
I just applied, contemplating an attorney, kind of want to ramble. Sorry if it’s too long to read. Thanks for any responses ahead of time!
T1 for 24 years, retinopathy hit both eyes simultaneously 12 years ago. I had one vitrectomy in each eye. Had to lay on my face 24/7 for 4 weeks post op after the first one and 7 weeks after the second. Today I’m blind in one eye and 20/30 with my glasses on the other.
I also worked for a U.S. Senator for 13 years. In fact that’s where I worked during my eye issues. We had people contact us every day wanting help with SSDI claims. I did not do that kind of work for him, but I did get exposed to some of the questions and answers. I don’t want to scare you, but I want to prepare you for some things.
First, be aware that if it is determined that you are capable of doing any kind of work, you will be denied. It is not enough to be unable to do the work you used to do. We saw so many people apply for the second reason, get denied and not understand why.
Second, if you get denied the appeals process takes months, and if you get denied again the wait for a hearing on front of an Administrative Law Judge can take up to a couple of years, depending on what region of the country you are in. Gather a list of resources you can turn to if you need to and form a game plan.
Third, a lawyer can be a godsend, because if your doctor isn’t experienced with getting SSDI claims approved, the lawyer can help guide them through how to present the info in the way that will provide the best chance of approval. I believe SSA has information available on attorneys that specialize in this, and IIRC they limit the amount that an attorney can charge you.
On a more personal note, check out the groups Lost Eye and Eyedentity UK on Facebook as well as the website losteye.com. They are the equivalent of TuD for people who only see from one eye. TONS of detached retina survivors.
My son was approved for social security at age 24. Not diabetes related, but the doctors wrote letters in his support. It can happen if you have medical documentation from your doctors. Some people can also be on social security and work certain small jobs part time. Also, I was told most are denied the first time, and have to apply a second time and sometimes more times. My son was approved with his first application and documentation from the hospital, no attorneys. He is now turning 30 and may be able to try a small part time job and still get social security, however, his social security amount per month would decrease, depending on how much he earns. He could earn a small amount and his monthly check would not be affected.
I wish you luck in trying and hope you are approved!
Yeah, I’ve had two vitrectomies, for retinopathy. The last one on my left eye caused my retina to detach (doctor said it was very rare) luckily my macula is still attached. I get to go in for another vitrectomy to reattach the retina, this friday. They are saying my vision should return. to what degree, I’m not sure… I work in call centers because I already can’t do physical labor or stand for more than 20 mins without my feet or legs beginning to burn (used to work warehouse with the neuropathy). My docs are all willing to back me on my social security claim. Vitrectomies really suck. 7 weeks you had to be face down? Why so long? I was told I only had to do positioning for max a week.
Sorry you went through all of that. Your eyesight in your good eye is the same as mine right now with glasses on too. Thank you so much for the response.
The 7 weeks was in the worse eye. The surgeon used the benchmark of, when he let me hold my head upright, could I see the edge of the air bubble? If so, it had dissipated enough that it was now too small to do anymore of its work, so there was no point in keeping me face down any longer. I think he was trying to salvage every shred of vision he could because I was only 26. I had bleeders in both eyes for a month before the vitrectomy in the first eye, and they couldn’t do the one in the second eye until after I recovered from the lens re-implantation in the first eye. So my second eye started the bleeders in July, first eye’s vitrectomy was August, lens implant was early December and vitrectomy in the second eye was two weeks later. He did everything he could, but the damage was just so far gone by the time they got in there that I never did actually find the edge of the bubble and he finally said enough was enough.
I have pretty much the same issues as you do. When it finally became time to apply for SSDI I was about where you are. I talked to an attorney and told him what my conditions were. He said that I did not need an attorney. All of my issues are “listed”. With medical confirmation there is nothing to deny. You just have to deal with a five-month waiting period from the day you became disabled.
Geez, how badly was your retina detached? Mine is barely detaching now. I’m still just seeing black though in one eye. They eye surgeon I have is both a professor and a diabetic retinopathy specialist that is involved in new research around the world. I lucked out with my doctor. He is a wonderful surgeon and great doctor, something that is hard to find now aday. I’m sorry you lost your eye. How is your blood glucose and A1C now aday? Got everything under control finally?
Thanks for the input, I’m calling an attorney this week to see what they think about my chances. I’ve got good specailists that know how to notate and fill out paper work, plus my PCP used to be my mom’s boss. I’m hoping it’s that easy for me… I am not sure I can function at any job anymore… I either have stomach issues, neuro issues or bleeding in my eye it seems while at work… I’ve taken full duration of FMLA from two different jobs now and I’m just done with going back to work only to fall victim again.
Well my understanding is my retinas only detached at the edges. It’s the busted retinal blood vessels that were the bigger problem. In the immediate term you can’t see through the blood. In the longer term the death of the vessels means the retina loses blood supply and therefore its ability to see. I also had such bad diabetic cataracts in the worse eye that the in-office laser couldn’t get through it to the retina to do any good. So all that damage in that eye went on with no ability to fight it from July to Christmas. And, my first bleeder in the worse eye was dead center of the macula.
So, yeah, it was a trip. First eye started bleeders in May; second started bleeders in July; first vitrectomy in August, including removal of THAT cataract, which wasn’t as bad; face down 4 weeks; temporary contact lens in November; lens reimplant early December; vitrectomy in the second eye two days after Christmas; face down 7 weeks; capsulectomy in I think March to see if that would let anymore light in. But the retina was just too far gone. In that eye also the ciliary body was damaged so it can’t produce intraocular fluid to hold its size, pressure and shape so it shrunk. I now wear a prosthetic in front of the native eye so it looks normal instead of only opening about half way.
My surgeon was amazing. I quite literally owe him everything that my life is today. Not one thing that is my daily life today existed for me before I went blind. I would have NONE of it if not for his saving the vision in my good eye.
As far as my D control today, I still struggle with bad habits creeping in-- not checking, forgetting to bolus, that kind of thing. The struggle is real, but simply checking the sugars reliably is really the big key for getting my A1c where it needs to be.
My retina isn’t that badly detached at all, I gues I’m lucky I noticed the detachment this last Monday, got into the doctor by Tuesday and then again Wednesday when it got worse, scheduled surgery for 5/12 (this friday morning) to reattach and do membrane peeling if necessary. I’m waiting to see if I get oil or gas, not sure until he’s in there what he’s gonna use. Also not sure if it’s face down I’m looking at or just side positioning. Clearly we’ve all had too many vitrectomies to know the jist :D.
I attached my B scan from last Wednesday for reference.
My endo is also getting me on a pump (I never wanted one but the results are undeniable.I just restarted on Lyrica for my neuropathy but it’s not doing much (also have medical marijuana, live in Arizona, can’t use after vitrectomy because of the coughing). The marijuana literally gave me an extra year of working, I don’t know what I would have done with out it.
I did research (because depression isn’t allowing me to sleep). Apparently I have and exudative retinal detachment. I wonder if the shot of avastin after my first vitrectomy might have caused the displacement, it cleared the post op hemmorhage. All of this is in the same eye, just for clarification. Essentially my retina detached but there are no breaks or holes that can be seen, just needs to be reattached. I guess I’ve lucked out so far.
You might be able to qualify for SSDI outright if your vision is 20/200 in your best eye after corrective lenses are used. SSDI does not care about the vison in 1 bad eye. They consider you to be completely disabled if your good eye has a correctable vision of 20/200 and higher. That is how you meet the listing outright and they should award you benefits immediately based on that. With the other diagnosis, it’s not having the diagnosis that will get you SSDI. It’s how they impact your ability to do previous work, or to be retrained for new types of work. SSDI does not care if no one will hire you. If they find that you can do a sit down desk job, they will deny you. That is unless you meet one of their listings in the blue book.
Here is a link that explains how SSDI evaluates vison claims: http://www.disabilitysecrets.com/social-security-disability-vision-loss.html
I applied for SSDI and they agree that I have several severe impairments, but that they are not severe enough to prevent me from performing light duty work. So I apparently can retrain to work in an office.
Depends on how your doctors present your case to social security from what I’ve read.
I’ve already been doing office work (call center), and I can’t do it anymore. My gastroparesis is the cause of that.
My neuropathy will not allow me to stand for more than 20 mins at a time, which is why I went from physical work to office work. My neuropathy also gets to the point to where sitting causes burning sensation in my feet. I’ve had neuropathy for 6 years now. I’m going to call a lawyer that specializes in SSDI tomorrow and see what they say.
To be disqualified from sit down work, you can argue that you have to lay down during the work day, or that you are incapable of sitting or standing for more than 2 hours in a 6-8 hour work day. Or if you will miss 1 day a month due to flare ups. I’m going to angle for having to elevate my legs at waist level most of the day. I have to do this at home in order to alleviate swelling and pain in my right leg. I have a form of chronic venous insufficiency. It also hurts sometimes with my legs elevated and I then have to lay down and take pain meds to alleviate pain. I can do a lot for 2 hours a day and then the payback comes. I will start to limp and my leg will drag after two hours of standing/walking. Then I’m in pain for the rest of that day and the next day. But my condition does not qualify for benefits until I have open wounds on my leg for more than three months. That will eventually happen years from now, as I take good care of my leg/condition by resting it a lot. If I were to try and work and let the leg stay swollen all of the time, the skin would begin to break down faster and ulcers form. I hope you win your case. It’s a long process and very hard for us younger people to win. I was told by judge that if I was over 55 years of age, I would have won my case. The rules are more lax for retraining when you’re older.
Yeah, I’m stuck on the toilet or in bed because of gastroparesis for way more than that a day. Sometimes I’m in the bathroom for 3+ hours a day. And when I’m sitting in a chair my stomach / intestines are in constant pain, regardless of medication. It doesn’t even matter if I eat anymore, if I drink water it’s no bueno for about an hour. Then I get random burning in my feet no matter sitting, standing, or even laying. The retinopathy getting worse is just the icing on the cake. I haven’t had the swelling in my legs. How are your kidneys, any water retention issues or something causing the swelling?
This is what I get for my “superman complex” I guess.
Since you do not meet a listing outright, they will use the grid rules to see if you qualify for a vocational allowance. That is how a lot of people win their cases. The judge will ask a vocational expert four or five hypothetical questions about hypothetical jobs that you can perform. I was deemed unable to return to truck driving, had no transferrable work skills, cant do heavy or medium work, but that I can retrain to do light work. I won all of the steps except for step five. There are five steps you have to win before you actually win your SSDI. It’s a some-what complicated process. It will be more of a challenge for those who are already working in a sit down job, and those who have a higher education level. In all honesty, if I had some type of education, it would be easier for me to find work where I can elevate my legs all day. I might stand a better chance of working. You do have severe pain from neuropathy, so that makes it hard to sit, even with legs elevated. Elevating your legs will not help with nerve pain. So, you do have a good case, but it will be a hard fight like mines will be if I decide to re-file again. Good luck. A lawyer who specializes in SSDI will be your best bet. Alsup has some pretty good lawyers from what I hear.
I can relate to the bowel issues as I used to go to the bathroom 11 times a day. If I wanted to leave the house just to go shopping, I would have to not eat anything the night before and the morning of the day I needed to go out. This cleared up when I started taking pain meds. Now I have to use laxatives just to go to the bathroom. Otherwise I will get backed up, and if I do not use the bathroom for more than two days, I start to vomit food up and get really sick. So I still deal with these issues, but the pain meds and the stomach acid meds have helped a lot. These issues should also help you win your case. I was actually let go from an office job for using the bathroom too many times in a day. Some of the other employees complained that I was taking too many breaks. This was many years ago.
I used to have major swelling in both legs back when I was a truck driver and before I started taking blood thinners. I only get swelling when I walk too much on my leg. I have chronic blood clots blocking the veins in my right leg (mostly behind my knee) that cause all of my issues.
Here is how the SSA decides if you’re disabled if you do not meet a listing outright. Just reading through all of that will make your head spin. As you can see, they give advanced age applicants easier standards for winning than they do for us young applicants.