Reduction in Benefits Inquiry

BrettLawrence

PEB Forum Regular Member
Registered Member
Greetings,
Sorry if I'm posting this in the wrong forum. Recently, I got a notification for a proposed reduction in benefits. I have what's currently listed on my notification letter as: "marfans syndrome with aortic dilation (loweys-dietz syndrome with aortic dialation)". Now, there's quite a bit of backstory to this so I'll try to keep it brief. Back in 2018 I was diagnosed with an aneurysm on my aortic root (4.5cm dialation). I had open heart surgery to fix it but in the process discovered I had an aggressive connectivity tissue disorder from my family history. They thought it was Marfan Syndrome but after a genetics panel it was revealed I have something closely related to it, Loeys-Dietz syndrome. Which is why it's labeled the way it is.

Well, fast forward to 2023 I had my re-evaluation in January and I received the results in March. They plan to reduce my benefits for my genetic disorder from 100% to 10% for a combined total rating of 60% (was previously 100%). I got in touch with the DAV for a hearing to appeal the decision but due to some miscommunication issues I've busted the timeline to submit paperwork for a hearing and to submit additional evidence to prevent the reduction from becoming official. I'm currently in limbo where the reduction hasn't been made official but I'm pretty sure it will be.

I'm very confident my disorder needs to remain 100% and move to permanent because the condition never gets better, only worse. It's also the centerpiece for a number of my other disabilities. The way the VA evaluated the disorder is with an EKG that only measures heart performance at a single point in time and based the reduction off that. A cursory glance at the disorder's symptoms and how it affects people (similar to Marfan syndrome) would show this is simply not an acceptable measurement of the condition.

I've talked to VA disability attorneys when I first got the notification but they stated there's nothing they can do until the reduction has been made official. Is now a good time to retain a VA lawyer and if so, would anyone have recommendation? I'm in the Fort Walton Beach, FL area. If anyone need me to clarify anything or give any additional information please let me know. I'd be glad to elaborate further.
 
Greetings,
Sorry if I'm posting this in the wrong forum. Recently, I got a notification for a proposed reduction in benefits. I have what's currently listed on my notification letter as: "marfans syndrome with aortic dilation (loweys-dietz syndrome with aortic dialation)". Now, there's quite a bit of backstory to this so I'll try to keep it brief. Back in 2018 I was diagnosed with an aneurysm on my aortic root (4.5cm dialation). I had open heart surgery to fix it but in the process discovered I had an aggressive connectivity tissue disorder from my family history. They thought it was Marfan Syndrome but after a genetics panel it was revealed I have something closely related to it, Loeys-Dietz syndrome. Which is why it's labeled the way it is.

Well, fast forward to 2023 I had my re-evaluation in January and I received the results in March. They plan to reduce my benefits for my genetic disorder from 100% to 10% for a combined total rating of 60% (was previously 100%). I got in touch with the DAV for a hearing to appeal the decision but due to some miscommunication issues I've busted the timeline to submit paperwork for a hearing and to submit additional evidence to prevent the reduction from becoming official. I'm currently in limbo where the reduction hasn't been made official but I'm pretty sure it will be.

I'm very confident my disorder needs to remain 100% and move to permanent because the condition never gets better, only worse. It's also the centerpiece for a number of my other disabilities. The way the VA evaluated the disorder is with an EKG that only measures heart performance at a single point in time and based the reduction off that. A cursory glance at the disorder's symptoms and how it affects people (similar to Marfan syndrome) would show this is simply not an acceptable measurement of the condition.

I've talked to VA disability attorneys when I first got the notification but they stated there's nothing they can do until the reduction has been made official. Is now a good time to retain a VA lawyer and if so, would anyone have recommendation? I'm in the Fort Walton Beach, FL area. If anyone need me to clarify anything or give any additional information please let me know. I'd be glad to elaborate further.
Any forward movement on this situation?
 
If possible, I would seek outside care with the goal of getting more doctors to all validate your condition on paper. Try to find a doctor that specializes in your specific issues and will fill out a VA DBQ. Your opinion against a VA contracted doc is one thing. But another treating doctor against the VA contractors is totally another. Good luck.
 
What was the proposed reason for the reduction?
The aortic aneurysm was removed with open heart surgery. I had an aortic root replacement. I think they've decided to re-rate the aneurysm since I had surgery 4 years ago and reduce it? But this doesn't address my genetic disorder. The exact verbiage in my letter is, "Evaluation of loweys-dietz syndrome with aortic dilation, s/p surgical correction with aortic stent (previously rated as marfans syndrome with aortic dilation (loweys-dietz syndrome with aortic dialation)), which is currently evaluated 100 percent disabling, is decreased to 10 percent effective August 1, 2023."
 
After surgery, do you still have restrictions?
Yes. The surgery with my combined genetic disorder means I can't do jobs lifting 40-50+ lbs. I'm not allowed to run, do push-ups, sit-ups, weightlifting etc. because it could potentially worsen my condition. My doctors stated the most I could really do for my health was to eat healthy and I'm allowed swimming and light jogs.
 
So basically the same restrictions as before surgery? I ask because I have an aortic aneurysm as well (Not the same syndrome). Currently stable at 4.5cm. However in my ratings it states that my condition is not permanent due to possibly requiring surgery. It also states because there is a likelihood of improvement I’m subject to reevaluation. I kind of get it, but also challenge that even if requiring surgery I will continue to remain restricted as well as needing annual monitoring after surgical correction. It’s a condition that will affect me my whole life. Why not make it permanent? So, that’s why all the questions.
 
So basically the same restrictions as before surgery? I ask because I have an aortic aneurysm as well (Not the same syndrome). Currently stable at 4.5cm. However in my ratings it states that my condition is not permanent due to possibly requiring surgery. It also states because there is a likelihood of improvement I’m subject to reevaluation. I kind of get it, but also challenge that even if requiring surgery I will continue to remain restricted as well as needing annual monitoring after surgical correction. It’s a condition that will affect me my whole life. Why not make it permanent? So, that’s why all the questions.
Trust me, I'm with you. 100%. Does your family have a history of aneurysms, dying from heart issues, etc. or are you the sole one? If they do, you need to get a genetics panel done for connectivity tissue disorders. They found my genetic disorder by digging through my family history and seeing that I've had several uncles and cousins die from aneurysms and heart problems. Sorry if I sound grim here but I'm a big advocate of getting checked since I found out years ago. There's big complications going into and coming out of that surgery and the scar tissue pains in the chest area from the 8-inch incision is no joke.
 
I’m the sole one I believe. Yeah, I’m definitely trying to avoid surgery if I can. I have the same restrictions and listen to my doctors. Try and stay healthy really.
 
I think, maybe, I could try filing a claim for my genetic disorder itself since I believe this rating was for my aneurysm that was corrected with surgery and not my genetic disorder itself. Would anyone maybe have advice about this going forward?
 
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