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retiredat44
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Posts posted by retiredat44
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I sent the info to my VA claim reps.. not sure if they are of any help yet... who knows.. *sigh
for those that don't know what it's like to be harranged, questioned, grilled, and have some inept intern jumping up and down on your stomach with pancreas disease is horrific pain, even with morphine.. it is very painful to talk... because the muscles you use for everything use muscles in the stomach area... moving walking breathing are all extremely painful... and they want you to explain what it's like to spend 1/2 your life in hell.... they write that down and send it to some clerk with no medical training... 3rd time around! why?? why?? why?? why?? the surgeons talked me everyday for 6 months as inpatient, boxes and boxes of va medical records, and a 3rd time at some clinic for questions and exam again, they can't see anything from outside the body! They can only interrogate me, and poke me!!! Every year they (VA) catscan the pancreas and disease cysts and diseased arteries to my liver and heart. the cysts are pre-cancerous that line my dying pancreas, necrotized pancreas. also have budd-chiari syndrome. Not enough blood gets through the liver to the heart because the arteries and veins are diseased. So, I am very limited on physical activity and the veins break and often lead to death if the wrong ones break. often, I pee straight blood, but if I vomit blood it means I am dying because of those veins can't stop the bleeding by the stomach. Was tube fed 6 months without the ability to eat or drink. isn't that enough?
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This is updated,
(10-22-16) My first attempt failed when writing this I was exploding because of receiving crazy news...
BVA appeal
I went to my C&P exams, Jul and August 2016. The first time (3 exams), I went, then they said I had to repeat (I repeated one). I went back and repeated. Now today. , late in the day on a Friday they call me and tell me, through a 3rd party service they said the VA uses, that I have to go the exams. I tried telling them I completed them a few months ago. it didn't help, they gave me phone numbers. I tried those numbers and were worthless! absolutely worthless! They must have lost my exams, double booked, I don't know and no one I try to talk to can help!
They are sending me new exam info via Fed-Ex. Has anyone gone through this much hell because of total incompetence!
They told me I am going back for the same exams I complete 2x.
Not counting spending 6 months as an inpatient at the VA. Where I had pancreatic surgery and major complications.
They need more info?
They want a better outcome for them?
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I have both:
1) Necrotizing Pancreatitis
2)Budd-Chiari syndrome
Do you or do you k now anyone that has either one or more importantly both?
Mine are connected together, not separate. And not from alcohol.
I never met anyone with both like I have
I am not asking how to file, I already have a bunch of claims on appeals, etc...
these diseases are extremely rare, by themselves, together, the odds are astronomic to have both full blown.
Just asking...
anyone need info, I can provide what I learned over the years. At least from what I learned having them, hospitalizations, filing claims, and more.
I just thought I would ask so I too can get more info for my own questions.
Thanx!
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regarding ongoing health problems, and treatments, issues, and what happened when I moved to new clinics..
I first were assured they would continue with helping me on the schedules created by my previous surgical teams and doctors when I was an inpatient in san Diego. I moved to Oregon a few years ago. They at first finally figured out that I needed continued treatment for a fatal disease, but not a defined time limit for my life. After about 1.5 years my appointment dates disappeared. I was under treatment for pancreatic, liver, neurology, dermatology, GI, Eyes, and much more. My appointments never came. meanwhile I had C&P exams ordered by the appeal judge.
Now it turns out some of those issues, are in the treatments where I no longer had appointments for treatment. The surgeons setup schedules for every 6 months for tests, mri's and more. Then, no appointment came in. My doctor , he was assigned to me after a few others who cam and went over the first year. He is very sympathetic and got the ball rolling on those appointments, but they are needed no only to keep me alive, but also to show the VA BVA hearing judge I am still being treated for the issues in my appeals. So, I got ahold of the derm, neuro, GI< and eye clinics and told them they are more than 1 year late, at best in checking my serious health issues, ads I was under strict watch under a team back in San Diego VA. here, they just let my program of treatment disappear. bad timing, might ruin my appeal if it looks like I know longer am treated by doctors for illnesses.
BTW, MY Necrotizing pancreatitis, and Splenic vein disease, also gave me:
I have this with my Splenic vein thrombosis and necrotizing pancreatitisBudd–Chiari syndromeBudd–Chiari syndrome is a condition caused by occlusion of the hepatic veins that drain the liver. It presents with the classical triad of abdominal pain, ascites, and liver enlargement. The formation of a blood clot within the hepatic veins can lead to Budd–Chiari syndrome. It occurs in 1 out of a million individuals.[1] The syndrome can be fulminant, acute, chronic, or asymptomatic.=========The major veins and arteries to my heart are partially blocked and I cannot use thinners, as they failed, because I had serious internal bleeding when I was an inpatient for 6 months at the VA. So, thinners are to dangerous for me.I also need to be checked for bleeding, cancerous cysts, cancer, and much more, surgeons recommend 2x per year.I has edema still after al these years with open sores that never heal, yet the dermatology told the primary care I am cured, and no follow ups were scheduled. Plus many other problems.I have cataracts (one was removed a few years ago, ) and glaucoma, plus something on my retina grew that is not suppose to be there, they must watch that too. But, they missed making another appointment last year also.I asked for a transfer to a VA clinic doctor, closer to me, and was put on a transfer list to a new clinic 20 miles from me. 3 years has passed and no transfer, the clinic I have to go to is 150 mile round trip/ They upside is the doctor seems very good at my primary care. Why wasn't I transferred within 3 years of the new clinic opening? I bet they doctors cherry picked easier patients. Just a guess. I asked the VA if I keep having to renew my transfer request to the newer clinic that is only 20 miles from me. They said I do not have to renew. I am permanently on that request list. Not long ago, the VA offices did call and ask if I still wanted to stay on that request list, I emphatically said yes, please, a closer doctor is better. But, like I said the doctor I have is not only a good doctor that cares, but is also the head doctor at the clinic I go to for primary care. But, al my care is at specialty clinics anyways.===================well, I have a bunch of rare disease, one is 1 out of a million people have it. and I can feel when the swelling causes the blood flow to get squeezed, it is horrible and scary. it seems to give me enough time to get back to a bed and lay down until I can continue with my life, when the blood pressure drops for the arteries and veins squeezing the blood flow off tot he heart and lungs. When that happens it is really horrific, it just make you loose the ability to walk, talk eat, you just collapse and rest or hopefully sleep in peace a few hours of a couple days until you can get up again and do whatever. I was hospitalized in 2008 when the blood pressure dropped very low. My doctor back then was totally lost lied an said I had a stroke, they put a heart monitor on me for a couple months as an inpatient, it wasn't a stroke, it is that damned thrombosis of those major veins that go through the pancreas and spleen and liver. I didn't have this problem until they tried to put a stent in that ripped the pancreas apart and ripped open the vein, internal bleeding almost killed me. it is non-operable. The BVA judge is aware of al this, and is part of the 1151 in my claims on appeal.I still have no decision for my BVA appeals.Thanx for letting me vent my update with the VA -
The VA C&P doctor told me, I didn't have operations, they were procedures. The procedures (I had 2, the first procedure failed and they tried a second time, and it all went very wrong again the 2nd time!, I didn't know, I was to sick and was totally oblivious to the first few weeks, fighting for my life.) in the operating room to remove cysts on my pancreas and they said they were going to use fine need le aspiration to drain cysts on the head of my pancreas, 5 inches in size, but without telling me, they decided to insert stents, this caused the pancreas to rip open and the portal and splenic veins ruptured with internal bleeding and severe damage tot eh veins and arteries to my heart. the C&P doctors told me they were procedures and not operations. and to top that off, it was in a thick Indian accent, his second language is English. The VA will find everyway possible to screw you in any exam, it never ends. This happens a few months ago, but the more I think about how I spent more then half my life, fighting for my life, being called mentally ill, and I am not sick it was all in my head and I am a drug seeker. For what the military crap we go through we should all be automatically approved, without this farce we are put through. IMHO
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mine took 6 years from the denial, and deny of the NOD's, etc..etc... not counting the original denials from 20 years ago, and many items on appeal. Now I am at the stages from a in in person BVA judge hearing, he had it remanded, went to some more C&P's a few months ago, and they are back at the BVA judge. origin filings:1997. New claims and appeals 2009. Decided to not do a video, but wanted in person face to face with judge. it was to important to trust video, plus, the computers went bad and messed up while they recorded the in person hearing, they had to stop 2x in the middle of the BVA appeal hearing to call in a tech. A total clsuterF((*&k.
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Only thing left is the BVA judge decision, already went through remand and C&P's. been 90 days since the C&P's were finished. I think my case got so messed up through incompetence, they probably don't have enough experts to figure out what's going on...
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I am not sure if there is a fact section for this.... because, it is so serious that it must be done correctly and cannot be done by just any doctor... IMHO
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ebenefits, is broken again... at least for me.... it seems 3/4 the time I try the logon is broken...
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if I didn't have a couple decades of medical records and a 6 month in patient stay with complications, the phony c&p would have been the end of my claims, the c&p is phony and the doctors there are worthless.. they have an attitude that we are liars and phonies, you can tell with their snotty attitudes.... they just are not nice, are ready to pounce with saying crude nasty things, like I don't have time for your long answer.... I see no evidence... and it goes on and on when I saw the c&p.... who know what they are writing..... so in a way I am lucky I spent 6 months fighting for my life in a va hospital, or else there would be no records...
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nevermind, it's working again, often I cannot log in,,, now I can again....
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then you do have a paper trail, if you went to sick call.... even if the documents were destroyed you have a paper trail, that's all I asked....now, a link to an injury and or disease...
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I had dx for jp-4 exposure, and have sc for that... am fighting for other chemicals at this time, should have my appeals decision at any time, but took many, many years...
Gastone, above, asked the best questions...
does your medical service records have any illness or injury, or have any after discharge that you think are linked...
I have fought similar injuries for many years, you need a paper trail...
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Ebenefits website always broken? it never seems to be working properly, 1/2 the time I cannot log into it with my account, it just goes to a white page, saying some b.s. like try again... they just seem to make my blood boil with incompetence.. anyone else pissed because of stupidity in everything the VA does? It wouldn't be so bad if they could get one thing right... SIGH !!!
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After living in a hospital along time, I wish I could express what the vets need... the VA hospital where I was living in, was very short on staff.... and on experienced doctors, mostly they rely on interns... and inexperience... only until you are really in bad shape do you get a higher priority... until then you are at the mercy of people with not enough training and a slow response in emergencies... the nurses were very good people... and the good, or really good doctors are so few... I know it sounds general, but too much to say in a short typing session... and everyone has a different problem... I did see a lot of people with mental problems... not that I don't have any, but having to live with people that are messed up mentally is torture in itself.. you guys that are in there a few days or couple of weeks, cannot imagine having to live 4 to a room for 6 months, and the hell that comes with it!
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I keep hearing from everyone the BVA judge accelerated my case very fast.. probably because they bungled it for so many years... and he was pissed at the way the VA treated me...
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I know I should say this, but expect a BVA decision by October 2016, in a month or so. The BVA remand sent me to 4 C&P exams, and since my original R.O. was San Diego, and filed a couple appeals later in Oregon, I would think the BVA remands only went to the R.O. in Oregon. The C&P exams sucked, and are not thorough, the are get in her, look, and get out. V.s. the 30 years of in and out patient records. So, the documents will go back the BVA judge, (we sent back in August 2016. a couple weeks ago, back to the BVA Judge.) All that has to be done is for the BVA judge to rule on a long list of issues, then raters to apply a rating. Then for them to get the signatures, and I should finally have what was denied me in my original filing in 1997. Where they ignored my records, and never looked at my medical records in total, then came al of the surgeries and injuries from failed surgeries. by the way, a lot of surgeries are called procedures, even though they cut you, if they cut you form the inside using an instrument down your mouth into your intestines, in a procedure, if they come in from the stomach area outside it is surgery, even though both cut the same place in your G.I. track, i.e , stomach, intestines, pancreas.
They use word games and if they cut from one direction, it is a procedure, if they cut from another direction it is surgery, I think it's B.S. and a way for the medical community to lessen the impact of documents, like saying it is only a procedure, so it's no big deal. but if it is surgery then it is a big deal. Same outcome, I ende3d up with fatal pancreatic disease from a botched diagnosis and surgery. And when I originally file din 1997, they said it was in my head. in 2008 it was a big deal when my pancreas broke open in the hospital and became infected.. it was not in my head, the 5 inch cyst on my pancreas closing off my intestines. Instead, they made me spend 20+ years seeing VA head doctors giving me mood altering drugs they said would help with pain. Now I get my 1151 decision, the 1151, that the V.A. claims office told me they refused to help me file because I didn't have enough evidence. I also asked for housebound because I cannot go places because I get sick if I go to stores and events and am too sick to travel, to sick to eat out.
I thought I would not live long enough to get to see a decision. I still hope I do, but often I feel like the end is very near. I spend a lot of days in bed, and can only get around and eat with morphine for so many year, and take 30+ MEDS A DAY. I hope I do get the decision before I die. I may live a while longer or I maynot. Necrotizing pancreatitis is very unpredictable long with a partially blocked artery to my heart. Thrombosis. I look often in the mirror to see if the infection in the pancreas has started jaundice, Where one turns yellow in the skin and eyes from the infection. The surgeons told me that is one sign that the end is near, also heavy bleeding internally is common with pancreas disease, I was bleeding internally several times since my surgery. Once in a while I pee straight blood, but if I throw up blood that is also very bead. I take a nausea drug for cancer patients to help with bad nausea. I haven't fallen for a couple months, but vomit once in a while especially when the hot weather was here.
I hope October bring the decision for my family.
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They have all of my records, the bva judge,. in the remand told them they ignored my records...
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I have been holding back form the nasty C&P doctors and stupid thing they say and do! I told the doctor about a bad sinus infection after I had a feeding tube though my nose into my intestines for 6 months. How the mucus fill the inside of my nose. He says, nasty: there is no evidence! Yes, I went to the clinic and told them of my problem a few months after discharge after my 6 month inpatient stay for pancreas disease. The physc got angry because I asked what they had already written, because I had been through so much for so long I had no idea what he already knew! he started asking about my childhood and if I was in trouble with the law! It went on and on! The Neurologist says, there is no evidence of anything, even though I lived in the hospital for 6 months, surely he had notes??? I had no control of my body and had complete paralysis of my limbs as they waved in the air if I tried to do anything. I have no muscle, they had all wasted away and I was a skeleton. he would not listen, so I gave up and could not communicate with this ass-hole. I could not lift my leg one inch. If I fell out of m chair people had to ick me up for 1 year. Yet, I was just looked at like I was a malingering faker trying to scam the VA.
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http://www.webmd.com/cancer/pancreatic-cancer/pancreatic-cancer-symptoms
What I feel everyday, for 20 years... 24/7. I am so dead tired and so dead tired of doctors asking me where the pain is. I wish I could inject them with it, so they would stop asking stupid questions
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http://www.sciencecorps.org/Veteranshealth/
Those who worked with toxic chemicals, fuels, and cleaning chemicals
I did, and have terminal pancreatic disease.. yet they just told me to f-off, and after years of appeals, am now going through the last stages, BVA appeal and had some C%P exams. Awaiting for judges decsions
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http://www.sciencecorps.org/Veteranshealth/
Those who worked with toxic chemicals, fuels, and cleaning chemicals
I did, and have terminal pancreatic disease.. yet they just told me to f-off, and after years of appeals, am now going through the last stages, BVA appeal and had some C%P exams. Awaiting for judges decsions
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Example, a section for people with Pancreas disease to exchange notes and research in claims having to do with diagnosed pancreas disease.
I know there are sections for people with TBI, neurological, mental, etc. It would be helpful for those of us with conditions that are already diagnosed by doctors, but have a hard time preparing for the claims process for such conditions.
Doing a search with keywords really doesn't work well enough to see who others get their ducks in a row for the claims...
The same would be helpful for may other conditions, although many of these conditions are rare. Other conditions and injuries are much, much more common.
IMHO
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Example, a section for people with Pancreas disease to exchange notes and research in claims having to do with diagnosed pancreas disease.
I know there are sections for people with TBI, neurological, mental, etc. It would be helpful for those of us with conditions that are already diagnosed by doctors, but have a hard time preparing for the claims process for such conditions.
Doing a search with keywords really doesn't work well enough to see who others get their ducks in a row for the claims...
The same would be helpful for may other conditions, although many of these conditions are rare. Other conditions and injuries are much, much more common.
IMHO
HELP! the BVA Appeal is a screwed up mess ! They are sending me back to do the exams 3rd time!
in Veterans Compensation & Pension Exams
Posted
I probably am not clear enough, just so fed up with the VA! The people called are contracted out by the VA to get people through the pipleline faster to clear the back cases. The C&P examiners already did their exams a few months ago and sent their reports back to the BVAQ appeals judge. The problem is that they finished with my Regardless who got them, they were all done, and even had a redo done on an exam. The BVA Judge told the VA R.O. to do it correct. That's what they did Last June, July August 2016. Now it is if they have duplicate orders and someone has me redoing them again 3x ! and what makes this suck more is every number they gave me to call gives me a clueless person !