Baby got back-cysts! Danielle's Specialist Surgery
Donation protected
Hello. My name is Danielle. I’m the single mother of a beautiful and energetic 3 year old and I need specialist back surgery, which insurance will not pay for, to help with Tarlov cysts.
Monday, June 29th 2019, I woke up with severe back pain located around the tailbone region. I am accustomed to some pain due to unrelated medical oddities, so I wrote it off expecting it to dissipate or go away. But it didn’t go away. The pain has been constant ever since that Monday.
Even with medication designed to manage the pain, I am unable to sit for more than 5 minutes without pain. I can not walk for over 10 minutes without pain. I can not stand for 10 minutes without pain. Imagine never being able to get comfortable for more than 5-10 mins before being in so much pain you are force to change what you are doing entirely.
As a result of the constant pain I am unable work. I have always been a motivated and independent person who takes pride in my career and role as a mother. There is a clear and distinct line between my life before the pain and my life after that Monday. My whole life has been decimated!!!!
I have constantly been under the care of doctors in my search for answers. My local doctor initially scheduled and performed an MRI. The result of that MRI was a recommendation that I speak with another physician and I was sent to get a second opinion regarding diagnosis. In October 2019, I was able to meet with that physician and finally had an answer. I was advised the pain I was suffering from daily was the result of Tarlov cysts.
If you’ve never heard of Tarlov cysts then you are in good company. Most people will never hear the term but for those that receive this diagnosis it is a devastating blow with no quick fix and few answers. In short, Tarlov cysts are cysts that form on the nerve roots of your spinal column. These cysts fill with spinal fluid and due to their location near critical nerves, can cause severe, debilitating pain and other life changing complications.
With a diagnosis in hand and a little girl at home needing me to get better, I was on the hunt for a doctor who could offer a treatment for these Tarlov cysts. I find only two doctors in whole of the United States that have the needed experience in treating these cysts with surgery. In December of 2019 my father and I fly to Dallas, Texas to meet the top surgeon regarding Tarlov cysts. During the consultation, he confirms that the Tarlov cysts are causing my pain and recommends surgery to drain & wrap the cysts to prevent progression of symptoms. The information from the Dr.’s diagnosis and recommended treatment is sent to insurance for authorization. I finally have hope, I finally have a diagnosis and a treatment plan which requires specialist surgery.
Insurance refuses the authorization. They will not cover any part of the surgery. I am devastated!
Fast forward several months into 2020 and...Covid 19. Non-life saving surgeries stop being scheduled or performed and I am now stuck hiding out at home for another reason, desperate not to add any other medical ailment to my already full plate!!! Most people are feeling stuck at home and frustrated with not being able to do normal things. Things like going to the grocery store or go to hangout with family and friends. ...This was my existence already just with the addition of intense pain.
My current existence is as follows:
I can’t go on a walk or to the grocery store without severely hurting.
I can’t go sit with family & friends without knowing that I will be increasing my pain level even more.
I even think about quitting driving because of how intense the pain can be.
I live most of my days laying down to mitigate pain while also trying to care for my kind and energized 3 year old.
Showers, cooking, cleaning, basic life duties, they are all things the average person does without a second thought but for me, they have to be planned in accordance to when I want to experience severe pain. Basically everything I do, I end up paying for with extra pain. It is mentally and physically exhausting. I want to return to living a life where I can function with some normalcy. I want to be able to care for my daughter in a way that encourages her. I want to be able to take her to the park and drive her to sports and give her the life she deserves. I know that in addition to the pain I deal with everyday, I am currently at risk for additional and worsening symptoms if nothing is done. I need surgery.
As I write this today my surgery is scheduled for the week of May 10th. The road to recovery will be long and painful. There is a Facebook group for Tarlov cyst sufferers which I joined after diagnosis. They have prepared me for the expectation that surgery can take almost a year to recover from because of the sensitive location of the cysts near critical nerves. But whatever the recovery time, whatever the recovery pain, I am prepared to go through it because I am doing it for my little girl so she can have a Mom that’s not living with pain every day. I am doing it so that the rest of my life isn’t about these cysts and to prevent my condition from getting worse.
Although, I am prepared for the physical strain this surgery will represent, the financial strain is a whole other ball game. I always thought, when you get sick, insurance helps pay for you to get better. But the sad realization is that isn’t always the case. I’ve never had to ask for financial assistance from others and it is a truly humbling experience. But if you’ve read this far I would ask that whatever you can donate please help me fight to be the best mom and person I can be.
Monday, June 29th 2019, I woke up with severe back pain located around the tailbone region. I am accustomed to some pain due to unrelated medical oddities, so I wrote it off expecting it to dissipate or go away. But it didn’t go away. The pain has been constant ever since that Monday.
Even with medication designed to manage the pain, I am unable to sit for more than 5 minutes without pain. I can not walk for over 10 minutes without pain. I can not stand for 10 minutes without pain. Imagine never being able to get comfortable for more than 5-10 mins before being in so much pain you are force to change what you are doing entirely.
As a result of the constant pain I am unable work. I have always been a motivated and independent person who takes pride in my career and role as a mother. There is a clear and distinct line between my life before the pain and my life after that Monday. My whole life has been decimated!!!!
I have constantly been under the care of doctors in my search for answers. My local doctor initially scheduled and performed an MRI. The result of that MRI was a recommendation that I speak with another physician and I was sent to get a second opinion regarding diagnosis. In October 2019, I was able to meet with that physician and finally had an answer. I was advised the pain I was suffering from daily was the result of Tarlov cysts.
If you’ve never heard of Tarlov cysts then you are in good company. Most people will never hear the term but for those that receive this diagnosis it is a devastating blow with no quick fix and few answers. In short, Tarlov cysts are cysts that form on the nerve roots of your spinal column. These cysts fill with spinal fluid and due to their location near critical nerves, can cause severe, debilitating pain and other life changing complications.
With a diagnosis in hand and a little girl at home needing me to get better, I was on the hunt for a doctor who could offer a treatment for these Tarlov cysts. I find only two doctors in whole of the United States that have the needed experience in treating these cysts with surgery. In December of 2019 my father and I fly to Dallas, Texas to meet the top surgeon regarding Tarlov cysts. During the consultation, he confirms that the Tarlov cysts are causing my pain and recommends surgery to drain & wrap the cysts to prevent progression of symptoms. The information from the Dr.’s diagnosis and recommended treatment is sent to insurance for authorization. I finally have hope, I finally have a diagnosis and a treatment plan which requires specialist surgery.
Insurance refuses the authorization. They will not cover any part of the surgery. I am devastated!
Fast forward several months into 2020 and...Covid 19. Non-life saving surgeries stop being scheduled or performed and I am now stuck hiding out at home for another reason, desperate not to add any other medical ailment to my already full plate!!! Most people are feeling stuck at home and frustrated with not being able to do normal things. Things like going to the grocery store or go to hangout with family and friends. ...This was my existence already just with the addition of intense pain.
My current existence is as follows:
I can’t go on a walk or to the grocery store without severely hurting.
I can’t go sit with family & friends without knowing that I will be increasing my pain level even more.
I even think about quitting driving because of how intense the pain can be.
I live most of my days laying down to mitigate pain while also trying to care for my kind and energized 3 year old.
Showers, cooking, cleaning, basic life duties, they are all things the average person does without a second thought but for me, they have to be planned in accordance to when I want to experience severe pain. Basically everything I do, I end up paying for with extra pain. It is mentally and physically exhausting. I want to return to living a life where I can function with some normalcy. I want to be able to care for my daughter in a way that encourages her. I want to be able to take her to the park and drive her to sports and give her the life she deserves. I know that in addition to the pain I deal with everyday, I am currently at risk for additional and worsening symptoms if nothing is done. I need surgery.
As I write this today my surgery is scheduled for the week of May 10th. The road to recovery will be long and painful. There is a Facebook group for Tarlov cyst sufferers which I joined after diagnosis. They have prepared me for the expectation that surgery can take almost a year to recover from because of the sensitive location of the cysts near critical nerves. But whatever the recovery time, whatever the recovery pain, I am prepared to go through it because I am doing it for my little girl so she can have a Mom that’s not living with pain every day. I am doing it so that the rest of my life isn’t about these cysts and to prevent my condition from getting worse.
Although, I am prepared for the physical strain this surgery will represent, the financial strain is a whole other ball game. I always thought, when you get sick, insurance helps pay for you to get better. But the sad realization is that isn’t always the case. I’ve never had to ask for financial assistance from others and it is a truly humbling experience. But if you’ve read this far I would ask that whatever you can donate please help me fight to be the best mom and person I can be.
Organizer and beneficiary
Danielle Paulson
Organizer
Sioux Falls, SD
Penny Paulson
Beneficiary