Help Bek Get Her Surgery!
Please read the following, even if you can't give....
Rebekah was the victim of a series of terrible car-accidents that were not her fault, since, she has had debilitating back pain that has got worse with each passing year. She has went through countless Dr.'s and was told that there was nothing wrong, which drove me, her husband (Nick) and Bek completely crazy.
Rebekah plummeted into a deep, severe depression and had anxiety every time she felt her pain, bodily system failures, and of course before each Dr appointment. After finally being told she had a perineural cyst in her sacrum/tailbone spinal central canal, she self-diagnosed herself with Tarlov Cyst Disease. It turns out, she was right. She flew to see a doctor in Dallas, Texas on (6/21/13) who is a pioneer in his field and 1 of 3 doctors that do surgery on these cysts.
His name is Dr. Feigenbaum and he runs a clinic called the The Tarlov Cyst Institute in Dallas, Kansas, and now Pennsylvania. He confirmed she had the disease, but also found 2 large cysts, not 1. The spinal cysts are on her right and left side of her s2-s3 nerve roots. He called them bilateral cysts and said that they rub together and explain why she can never find a comfortable position at night or at any time for that matter, leaving her sometimes with days of no sleep. He stated that these are the nerves that control bodily functions below the waste, which was very enlightening for poor Bek. He also said that these cysts had eroded her sacral bone quite significantly. As they slowly grew in size they put pressure on the bone and basically had eaten it. Dr. Feigenbaum said that she needed surgery a long time ago.
If she had been properly diagnosed when she had Kaiser Permanente for 25 years, they would have paid for her surgery. Dr. Feigenbaum feels that surgery is crucial for Bek's recovery, as these cysts have grown and will continue to grow and press on more and more nerves as they do so. He said he needs to stop the progression of the disease immediately.
I help Bek get dressed, bathe, and drive her to all her appointments, which is the only time she leaves the house. She no longer even tries to drive. She cannot sit for more than 4-5 minutes and the same for standing. She uses a walker for ambulation and often we use her wheelchair.
When we were married she had pain but could do so much that she can't now. She was actually told she had the initial perineural cyst a year after we were married. Over time I have slowly seen my bright, outgoing wife wilt away. Her muscles have atrophied, she has become severely depressed, and much more that I don't feel comfortable getting into on here, but it breaks my heart more and more every single day, as her body increasingly gives out.
I have been looking for better jobs, as Obama has created a real problem with getting insurance, as he has companies cutting all employees hours so they do not have to pay for insurance. So, instead of providing insurance to all workers, he has instead jeopardized American's to poverty level and made full-time positions impossible to get. I keep trying though. Even when/if I do get hired, it will take 90 days for me to get insurance, insurance that will only pay part of what Bek's surgery will ultimately cost.
Bek has applied for disability and is currently still filling out paperwork for it. She also applied for state disability for medi-cal and is being sent to one of their doctors, which is of great worry to me as none of the doctors we have seen, besides Dr. Feigenbaum recognize this as a real disease with real symptoms and long-term effects. However, her Medi-cal worker seems to be working for her, not against. Dr. Feigenbaum doesn't take state disability, only federal/medicare.
My plea to everyone who has read this is to first and most importantly thank you for doing so. Secondly, I ask that you consider yourself in our situation, newly married, newly diagnosed after years and years of pain, and afraid of what the future holds instead of excited and starting a family (Bek can't hold a baby, her pain is too high and her medications cannot be stopped, as they are constantly switching them around and/or upping them). We want a chance at a normal life. I want to Bek healthy way she was when I married her. I still very much love her but want her better, as all this makes me extremely sad. I ask you to please donate some money for her, so that she can remember that there is hope, that her past life is not gone forever. Any amount of money will help, trust me. We paid out-of-pocket for her trip to Dallas and those medical bills were not cheap, so yes, we are in debt. Mainly, you can feel safe that your money is going to her surgery. Apparently if you don't have insurance and are paying cash, the surgery is cheaper, however to us it still seems impossibly expensive.
We thank you from the bottom of our hearts and will never, ever forget your help. God bless,
Nicholas M. Orona and Bek
Rebekah was the victim of a series of terrible car-accidents that were not her fault, since, she has had debilitating back pain that has got worse with each passing year. She has went through countless Dr.'s and was told that there was nothing wrong, which drove me, her husband (Nick) and Bek completely crazy.
Rebekah plummeted into a deep, severe depression and had anxiety every time she felt her pain, bodily system failures, and of course before each Dr appointment. After finally being told she had a perineural cyst in her sacrum/tailbone spinal central canal, she self-diagnosed herself with Tarlov Cyst Disease. It turns out, she was right. She flew to see a doctor in Dallas, Texas on (6/21/13) who is a pioneer in his field and 1 of 3 doctors that do surgery on these cysts.
His name is Dr. Feigenbaum and he runs a clinic called the The Tarlov Cyst Institute in Dallas, Kansas, and now Pennsylvania. He confirmed she had the disease, but also found 2 large cysts, not 1. The spinal cysts are on her right and left side of her s2-s3 nerve roots. He called them bilateral cysts and said that they rub together and explain why she can never find a comfortable position at night or at any time for that matter, leaving her sometimes with days of no sleep. He stated that these are the nerves that control bodily functions below the waste, which was very enlightening for poor Bek. He also said that these cysts had eroded her sacral bone quite significantly. As they slowly grew in size they put pressure on the bone and basically had eaten it. Dr. Feigenbaum said that she needed surgery a long time ago.
If she had been properly diagnosed when she had Kaiser Permanente for 25 years, they would have paid for her surgery. Dr. Feigenbaum feels that surgery is crucial for Bek's recovery, as these cysts have grown and will continue to grow and press on more and more nerves as they do so. He said he needs to stop the progression of the disease immediately.
I help Bek get dressed, bathe, and drive her to all her appointments, which is the only time she leaves the house. She no longer even tries to drive. She cannot sit for more than 4-5 minutes and the same for standing. She uses a walker for ambulation and often we use her wheelchair.
When we were married she had pain but could do so much that she can't now. She was actually told she had the initial perineural cyst a year after we were married. Over time I have slowly seen my bright, outgoing wife wilt away. Her muscles have atrophied, she has become severely depressed, and much more that I don't feel comfortable getting into on here, but it breaks my heart more and more every single day, as her body increasingly gives out.
I have been looking for better jobs, as Obama has created a real problem with getting insurance, as he has companies cutting all employees hours so they do not have to pay for insurance. So, instead of providing insurance to all workers, he has instead jeopardized American's to poverty level and made full-time positions impossible to get. I keep trying though. Even when/if I do get hired, it will take 90 days for me to get insurance, insurance that will only pay part of what Bek's surgery will ultimately cost.
Bek has applied for disability and is currently still filling out paperwork for it. She also applied for state disability for medi-cal and is being sent to one of their doctors, which is of great worry to me as none of the doctors we have seen, besides Dr. Feigenbaum recognize this as a real disease with real symptoms and long-term effects. However, her Medi-cal worker seems to be working for her, not against. Dr. Feigenbaum doesn't take state disability, only federal/medicare.
My plea to everyone who has read this is to first and most importantly thank you for doing so. Secondly, I ask that you consider yourself in our situation, newly married, newly diagnosed after years and years of pain, and afraid of what the future holds instead of excited and starting a family (Bek can't hold a baby, her pain is too high and her medications cannot be stopped, as they are constantly switching them around and/or upping them). We want a chance at a normal life. I want to Bek healthy way she was when I married her. I still very much love her but want her better, as all this makes me extremely sad. I ask you to please donate some money for her, so that she can remember that there is hope, that her past life is not gone forever. Any amount of money will help, trust me. We paid out-of-pocket for her trip to Dallas and those medical bills were not cheap, so yes, we are in debt. Mainly, you can feel safe that your money is going to her surgery. Apparently if you don't have insurance and are paying cash, the surgery is cheaper, however to us it still seems impossibly expensive.
We thank you from the bottom of our hearts and will never, ever forget your help. God bless,
Nicholas M. Orona and Bek
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