The Nature of the AVM Beast!

General
1

I've been reading a lot of discussions lately and have also been having appointments with people to decide whether I am eligible for a disability pension or not. The difficulty (for me) is trying to let these people know what is wrong with me....what happened......and the consecuences of brain damage through brain surgery. I was asked yesterday how my condition has changed my life? I wanted to say, "how much time do you have" as I knew the 30mins allocated was not enough time if she really wanted to know the ins and outs of 'me'. There is NO set script for AVMers in the social security system, and like most of us 'before' AVM, they have never heard of an AVM. I am not complaining about this, it is just factual and the more I recover, the more lack fo knowledge in this condition I find. It is so hard to tell 'your story' to people who have no idea what we are talking about, or trying to tell them. All the crying, loss of skills, (talking, reading, writing, memory, depression, frustration etc), telling someone who has no clue of my condition makes ME cry!!

So.....how do we get the knowledge of our condition out there? Do we put ads in local newspapers?...........Place brochures in local Drs surgeries?.....I'm not too sure really as I am still recovering myself; it takes me a long time to type items and my memory isn't very good, still trying to find my way through the site etc and etc!! I hope this all makes sense to you. All my best to all my AVM friends, take care and enjoy life!!

2

I feel your pain, and know that others care and support you. You should be entitled to disability etc. and yoour pension but there is always alot of red tape. Your neurologist would be the best one to declare your neuro deficits or a doctor of physical rehab physiatrist. Just keep on plugging along slowly and maybe a family member or friend could help you. Keeping you in my thoughts and prayers

3

Thank you Diane!!

4

Lesley, I feel your frustration! I was finally approved for SS disability a few months ago, after a 2 year process of denials and appeals.

One problem is that we look “normal”, it’s not like we’re missing a limb. When I started the process with SS, they sent me to a few of their doctors who don’t know a thing about brain injuries, let alone AVMs! You can tell people about your deficits, but how do you prove them?

One thing I can tell you is that if you’ve not had a full evaluation by a neuropsychiatrist who has done the whole 4 hour assessment, you need to. I think that really helped quantify exactly how different I am after my bleed.

Also, do make sure you get a lawyer that specializes in SS disability cases. Yes, they cost money, but you don’t have to pay them right away. They don’t get paid unless you win your case and if you do, they take a percentage of your settlement, but it’s capped at a certain amount (which I believe varies by state). It’s taken right out of the first check you receive from SS for the back pay lump sum.

Having a lawyer takes the responsibility of the laborious paperwork off of you. They handle all of that, as well as getting copies of medical records from the hospital and doctors. For those of us with brain injuries, that is huge! I couldn’t even properly fill out a form when I first applied.

In the end I don’t know what it was that worked. What happened was that because there was such a backlog of cases pending appeal, that SS sent a ton of cases to lawyers throughout the country that were given authority to rule on cases on their own accord. My case was sent to a lawyer somewhere in the midwest were ruled me eligible.

It is a hugely frustrating ordeal but it is necessary. I worked from the time I was 15 years old until the day of my bleed and I was entitled to that money and without it, we would have lost our home.

Anyway, long reply, my apologies, but I just thought I needed to share my experience so you know what to expect. Best of luck to you, and don’t give up!!

5

Trish thanks so much for taking the time to explain things for me!! I couldn’t receive SS before now as my husband made too much money ( in THEIR eyes), so I’m hoping to find out within the next couple of weeks if they accept me or not.

So I guess if they don’t, that would be the time to go to a lawyer?

How right you are with the forms…I ended up crying with my frustration, not being able to do the forms myself without great difficult; I so hate not understanding things the way I used to!!

Also Trish, where on earth do we find someone to do a full evaluation? My neurologist has no clue about AVMs and am waiting to see another one asap.

Please don’t apologise, I am so very grateful that you have taken the time to help. I will keep you posted as to what happens!. Again, thanks Trish, take care…and I won’t give up!!

6

lesley you are more than eligable for disability pension but as diane said we look normal werer not missing arms or legs people say to me you look great i sure dont feel great. i know of people who are fine and got there pension easy but over the years they have made it harder for the jenuine people. 20 years ago i took out a personal 5 year income and disabillty cover it cost me 150 dollars a month i never had a claim untill until before surgey when i knew i would no longer be albe to keep my bussiness going,they were more than happy to take mt money yet when i made claim for in come proction they humiliated and made me feel like i wasnt genuie being a proud honest hard working man i was offended .we didnt ask for this avm condiont ,and most people dont understand so i really feel your frustion if you have copies off your surgey and everying else take it to centerlink take care my friend shane crotty

7

Try to find a neuropyschiatrist but if you can’t a trained psychologist can perform the test. I think it was called simply a neuropyschiatric evaluation. I had it done when I was still in the hospital by the most amazing doctor. He was on staff in the stroke rehab unit that I was in. A neuropyschiatrist is a pretty specialized kind of doctor and they aren’t easy to find. Anyway, they do take several hours to perform. They test your short and long term memory, your knowledge of current events, your knowledge of past events. It gives you an idea of where specifically your brain is having difficulty with actual percentages. For me it was a tremendous eye opener because it give percentiles on specific areas. Some of my percentiles were so low that I was embarrassed but that is the nature of my injury. I can’t even do a connect the dots properly. So you can feel pretty stupid, but don’t think that way. I’m a pretty intelligent person, or was before my injury. You just have to accept that some things don’t come easily anymore. I was a math whiz before…now I can’t help my 7th grader with her math homework. Any other questions, let me know!!


Lesley Skelton said:
Trish thanks so much for taking the time to explain things for me!! I couldn't receive SS before now as my husband made too much money ( in THEIR eyes), so I'm hoping to find out within the next couple of weeks if they accept me or not.

So I guess if they don't, that would be the time to go to a lawyer?

How right you are with the forms.....I ended up crying with my frustration, not being able to do the forms myself without great difficult; I so hate not understanding things the way I used to!!

Also Trish, where on earth do we find someone to do a full evaluation? My neurologist has no clue about AVMs and am waiting to see another one asap.

Please don't apologise, I am so very grateful that you have taken the time to help. I will keep you posted as to what happens!. Again, thanks Trish, take care.......and I won't give up!!
8

This post has been helpful for me…I have an appointment with the SS neorologist on Tuesday. I know they are trying to find reasons to deny my claim, but I thought I would give it a try. I made a 6-figure income for the last several years, so I don’t qualify for medi-cal, or state disability because I have been making too much money and am self-employed. But my house payment is huge and I have a lot of bills (it takes money to make money in my business), so now I’m losing my home and can’t even afford a home phone or newspaper delivery. I also have worked since age 15 and paid into the system for 30 years before becoming self employed. But that’s not good enough I guess. How do I prove I have audio hallucinations? (that’s really fun by the way…hearing noises that aren’t there) Should I fall over to show that I have poor balance or forget the doctor’s name to prove my memory sucks? Do I blacken under my eyes to prove I have trouble sleeping? As a country, we give so much money away to other countries (especially after disasters), I wish they would leave some money for us Americans trying to get though life. It’s really hard to go from a good income to nothing. Hard on your pride. But I’m doing my best to get the word out about AVM’s. My book just got approved by the publisher and is now in print. Will post more about that separately. Hoping to get on some talk shows or radio interviews to get the word out about AVM’s. I was a news reporter previously, so hopefully some of my skills aren’t entirely lost.

9

Kat…

Social Security disability has nothing to do with how much money you made. It has everything to do with how much money you’ve paid into the system during the years you were working. It’s all dependent on what percentage you have vested into Social Security based on how much you’ve paid into it over the years.

Of course they will try to deny you, that’s what they do. They will make it as difficult as possible in hopes that you will give up and not pursue it further. I’m not about taking handouts from anybody, but I didn’t pay into the system for 25 years for nothing. I deserve that money. I would gladly stop my checks and go back to work if I could. That would mean that I am well. Sadly, that is not the case.


Kat Sanders said:
This post has been helpful for me...I have an appointment with the SS neorologist on Tuesday. I know they are trying to find reasons to deny my claim, but I thought I would give it a try. I made a 6-figure income for the last several years, so I don't qualify for medi-cal, or state disability because I have been making too much money and am self-employed. But my house payment is huge and I have a lot of bills (it takes money to make money in my business), so now I'm losing my home and can't even afford a home phone or newspaper delivery. I also have worked since age 15 and paid into the system for 30 years before becoming self employed. But that's not good enough I guess. How do I prove I have audio hallucinations? (that's really fun by the way...hearing noises that aren't there) Should I fall over to show that I have poor balance or forget the doctor's name to prove my memory sucks? Do I blacken under my eyes to prove I have trouble sleeping? As a country, we give so much money away to other countries (especially after disasters), I wish they would leave some money for us Americans trying to get though life. It's really hard to go from a good income to nothing. Hard on your pride. But I'm doing my best to get the word out about AVM's. My book just got approved by the publisher and is now in print. Will post more about that separately. Hoping to get on some talk shows or radio interviews to get the word out about AVM's. I was a news reporter previously, so hopefully some of my skills aren't entirely lost.
10

Thank you to everone who has helped me. "The system’ is so frustrating,however, I hope to see a new neurologist soon and will have a talk to him about all this stuff. Most of my frustration is that 1st, I usually don’t understand what ‘they’ are saying and 2nd, is that I trouble getting the words out!! Like you Trish, I have worked since I was 14 and I am not about to ‘give up’. Again, many thanks.

11

Lesley, this is partly for you, and partly for all of us:

As we all know even if we 100% understand about our AVM, symptoms, locations, treatments, prognosis, etc it is STILL tough to effectively communicate that even to a med professional, like a neuro psychiatrist or whatever.

I would encourage all of us to spend a bunch of time, gathering family, friends, clergy, local MDs, etc to help you compose the story of YOUR AVM and how it has affected you. If you spend quality time documenting this, as completely as you can, in a chronological order, I believe it will do several things:

** You won’t have to try to remember all the details to share with another med professional–you will have it documented, and it needs to be a living document as you journey with your AVM.

** You can organize your thoughts, feelings, and status in a non-pressure setting, so you don’t leave things out–how many of us leave DR appts and say “DArn, I forgot to mention…”

** We had a 1-2 page history of Chari’s AVM, along with all the diagnosis, tests (where, when, and by whom), and treatments. Whenever we’d meet with a new DR, we’d give him a copy of this. They ALWAYS put it in Chari’s medical folder and thanked us for it! It allowed new team members to quickly scan the history, and ask questions of us if needed to clarify.

**I can really see that cutting down on any 4 hour tests you might have to take (grin).

If you need more reasons, something like a car wreck or broken arm, you can fairly easily recall where and when, but our AVMs are LOOOOOOOOOOOOOOOOOOONNNNNNNNNNNNNNNNNNNGGGGGGGGGGGG term deals. So right now, you might recall that you had an MRI at Hospital X in October, but if you don’t write it down, in a year, will you recall where and when? Certainly not who read the scans.

Write your stories, peoples, it will really help you out.

Ron, KS

12

Thank God for Trish…She said exactly what I would have said. It is so hard to explain our AVM and our brain injury to the “system”, never mind the people in our lives.

I don’t know why, but my wonderful doctors…my neurosurgen, my neurologist, my neuropsychiatrist and my internist all helped me explain it to Social Security and I didn’t have to hire a lawyer…but if that didn’t work, I would have hired a lawyer. I will pray for all of my AVM friends that the “system” starts to understand us! I wish you the best!

13

Thanks again everyone, and hello to my ‘twin’!!

14

Lesley, love you and feel your pain\ The best, although not professional, or user-friendly description, I have been able to provide to family and professionals alike, has been''Imagine being really, really drunk, you can't walk toe to toe, you cannot remember anything you're emotions are all over the place, you cannot ever collect your thoughts, shouldn't operate a vehicle or heavy machinery, munchies-I won't even go there\ say Really inappropriate things, or think them My drunk explanation really resonated. Although not really professional. I have a temporal injury\. Its part of the deal.... As far as advertising; I feel pretty much ashamed and embaressed of my condition I'd rather Not advertise it. Suffice to sa, I frequently mumble something about having a head injury-- makes people back off, like its contagious or something!! However, good luck in your quest. I will just slink around here on the sidelines.
TGIF anyway,
Nicole