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AVM Survivors Network

Social Security disability and CE examination

#1

Hello Everyone!

Yesterday I had a Social Security Disability CE exam with one of their doctors. It was one of the most uncomfortable experiences I’ve ever had in a doctor’s office; here’s how it went down.

First, the appointment was scheduled quite a distance from where I live; despite the fact there were several offices in the city of Chicago; which would have been more convenient; but, there may have been a very good logistical reason for that; I can’t rule out that possibility. Since I don’t have a car I had to use public transportation (which is very good in the Chicagoland area); however, this was the first time since my diagnosis that I’ve been out on a very sunny, 80 degree plus day; on public transportation. When I arrived I felt awful; I was extremely dizzy, felt pressure building around my forehead, nausea; so I was walking very slowly and unsteady. The doctor called me in and of course she knew nothing about my case; when I told her I have a cavernous angioma; combined with chronic hypertension; and an eye condition known as Iritis; she wrote the information down and proceeded with questioning. When I mentioned that I was feeling dizzy; she kind of smirked and said ok; then I said I was concerned about a bleed; her reaction was you’ll know it when it happens…really? At that point I got the feeling she felt like I was faking or exaggerating my symptoms. She began the examination. Of course my lungs are clear and I don’t have a heart problem; no, I don’t drink or smoke; I don’t have a back problems anymore so my spine is fine (no pun intended); however, I didn’t have any reflex reaction; then the worst thing you can possibly do when someone has our condition is ask them to bend over; especially if they’re feeling pressure building up in their head; but, she did it anyway; fortunately nothing catastrophic happened. Oh, did I also mention she did everything possible to avoid making eye contact; it must be something in there training I guess.

Finally after the doctor left the room a nurse came in and took my blood pressure; which was 142/89; which for me is quite high seeing I have been on medication; that I had taken that day; and for years; if my blood pressure would have been taken before her exam; then the dizziness would have made sense; eliminating her skepticism; at least in theory. When the nurse saw the blood pressure her reaction was; maybe you’re just nervous; obviously she didn’t understand the ramification either. There was a hospital next door; never did they suggest going to the emergency room; fortunately I made it home without anything happening.

The thing that was most shocking to me was the callousness. Isn’t the first rule of thumb for any medical professional is to first “Do no Harm!” I’m not even sure they would even care; and that’s very sad. I know they are not my personal medical staff; or even compassionate human beings; all they have to do is fill out an RFC form and get paid on the 1st and 15th of each month; I get that! So a word of advice when and if you have to go to one of those SSDI exams; understand what can and likely will happen; they could care less about how your health is affected by the process; it just a job to them.

Leo

#2

What does it mean by your CE exam? I'm so sorry you went through all of this, Leo. It scares me that these doctors don't know what it's like to have brain damage from an AVM.

#3

I basically had the same treatment they looked at me like I was an idiot because I was able to walk a staight line and follow his finger. Sorry I was currently having a horrible headache that day. ( I have a brain avm) My worst problem is headaches. I also cant bend over. Not that he bothered to ask me to do anything. It was such a joke and he made me feel like I was trying to cheat the system. Like I want to be 29 and still getting disabilty. For me this was a review. In which they have decided I can work and I am now fighting. Its so faustrating and hard to deal with. They dont see how this effects are lives everyday, and to explain it tough unless you live it or watch someone live it. Sorry you had a horrible ordeal. Glad you made it home ok and it just shows they know NOTHING!!!!!! Best of luck to you :)

#4

Oh, I'm sorry I did not define CE. It stands for consultative evaluation which social security does when you file a disability claim. Essentially it's design to have one of their doctors fill out a "Residual Functional Capacity" form for the file. If possible it would be better to have your own physician fill out a similiar form; which I can email to anyone who ask; I could not go this route because I don't have health insurance; doctors at public hospitals or clinics don't have the time to fill out forms; and social security doesn't pay very much to the doctors either.

#5

I had one too. They probably do care about your health, but consider what they've seen and the many people that try and succeeded in cheating the system. I wasn't there and I don't know all the ins and outs of bureacracy (I probably butchered that) but that probably explains the smirk. I'm not making excuses and I certainly don't condone the behavior typical in most of these exams but everyone (including the doctors) have there own perspective. Perhaps we can look at this as another argument for awareness and then, maybe we'll get the sensitivity we need. Either way, I'm so sorry you had to go through that and I for one are glad that you made it through. :J Hope you're feeling well. Hang in there and thanks for sharing.