Chiari Malformation Community
Needing to Vent...
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Needing to Vent...

I would first like to say that I have never come across a more supportive and caring group of people as the ones in this forum. All of you are "strangers" and yet I feel as though you are the only ones who truly understand what I am going through....
Today was a rough day. I spent most of it in tears. Thursday will be four weeks since my surgery and my headaches have still not gone away and I still feel the pressure that I have been feeling for four months now. My NS is sending me for a MRI on thursday to see exactly what is going on. Besides that I am physically feeling stronger each day. I can walk on my own now, and have been slowly able to do things on my own.
Emotionally, I am a wreck, I was told my disability that I did not qualify because the Drs could not say that I would definately be out of work for at least a year and I have been on an UNPAID medical leave since this all started in October. This has left my husband with the full financial burden of keeping us going. OF course he is stressed, and I am stressed, which is causing a strain on both of us. We are having a hard time keeping above water and are in serious distress. My breaking point today was the $24,000 bill I got from my NS today, which my insurance is refusing to pay. Although the surgery and the hospital are covered "in-network" the Dr himself is out of my network and I was told that they would only pay 60%. I was prepared for a large bill since he charged me $500 just for an office visit, but they said they would pay 60%. Now, I was told that they will pay 60% of  what they allow for. NOT the bill. They sent me a check for $300. Thats what they feel should be covered for a 7 hour brain surgery. I was on the phone with them for over and hour and got no where. I just got to the point of feeling so overwhelmed. I am worth more to my family dead (I have a $300,000 life insurance policy) My father committed suicide 9 years ago today, and perhaps thats part of my emotional state, so I would NEVER do that to my family. Nine years later, It still hurts. The thing that hit me the hardest was I said to my husband that I just felt like giving up, and looked at me and told me "then you aren't the woman I married. The woman I married would never just give up." I have been a fighter and a surviver all my life and I never thought he saw me that way. He's not always one to tell me how he feels, so  for him to tell me he saw me as a fighter, made me so emotional, and proud in a weird way. I am just so tired of fighting. I don't know how all of you do this every day. I am taking pain killers like they are candy and Im getting no where. My biggest fear for this surgery was that I would still have this pain, and I do. I just want to feel better and go back to work. I am tired of fighting so hard. I know that there are people that have it much worse and I try to put things into perspective, but I just don't know how much longer I can hold it all together.
I've put on over 20 lbs in the last few months because I am laying (or sitting) around. can't exercise and feeling at such a low point. sorry for the rant, as I said, I just feel like you guys are the only ones who really understand how I feel.
15 Comments Post a Comment
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Avatar_n_tn
I am really sorry you are going through all this. I do understand how you feel. I went to school to become a MA, which is the same thing as a lpn. the only thing i could not do was start a iv. I graduated with honors. I worked only 6 months before i had to quit because my symptoms were to bad to let me work. My husband and I had to file bankrubcy due to medical bills from my daughter and i. My daughter was born with same birth defect i was. she has has 5 surgerys and needs 2 more. For years i had know idea what was causing the pain and other symptoms. I just had my chiari surgery done 5 days ago. I am still in horrible pain. Worse than before the surgery. I am hoping that as i heal the pain will lesson and i will be able to move around more.

I have wanted to give up on more than one occasion, so i do understand where you are comming from. It's hard to have to depend on somebody else to take care of you finacially.

You have to take one day at a time and have faith that things will start to get eaiser. You can only do so much and that all you can do. I look at it as it money. The bill colectors can only get so much out of you after that they can't get anything else. Whats important is your family and your health. The money will work its self out. Worrying only makes your health worse.

I hope this helped. Feel free to msg me if you would like to talk some more.
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1823499_tn?1370093889
Miamor33 is right, the bills collectors can't take what u don't have. We chiarians r all in the financial hole....u need to concentrate on gettin better. Its hard but u r still in early stages of recovery...it will get better. Takes lots of time...let us know how mri goes
.....and stress ur goin thru is not helpin,  hard as it is try to relax.
I've gained 10pds myself, not very happy
Goin next week for my 6 mo post op because I'm still having headaches and pressure. But we all heal diff. Vent anytime hun, U R NOT ALONE, WE R HERE, hugs, Dans
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Avatar_f_tn
Your post brought tears to my eyes (including the loss of your father).

I think I can safely say that we have all been screwed over by insurance, our employers, our family, and/or the imaginary "safety net" our culture offers!

Can you talk to a social worker or therapist to help sort it all out?  Because I hear you say you are dealing w/pain, stress, financial problems, & emotional vulnerability.  (maybe someone to help navigate the system, write letters to creditors, or get food stamps or utility help?).

Recovery is a very rough road--worse than I thought--but on the whole, I am much improved.  I trust you will improve too.
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4320028_tn?1365818075
Thank you all for your comments and support. As I said, you are the only ones that understand what I am going through. I am going down to my local assistance office today to see if there is anything I can do to get temporary help. Two years ago, my husband had a herniated disc in his back and degenerative disc and joint disease. Since he is a contractor and always worked doing physical labor, he was unable to work. At the time, I was told by the assistance office that I "made too much money" and they were unable to help us then. Our bills have gotten larger since then, but my concern is they will tell us the same thing today. I just don't know what to do anymore. If I was feeling better, i would probably be a lot better equipped to handle all this, but I'm not. Thank you again for your support. I will let everyone know how it goes today...
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620923_tn?1405964489

  Hi...so sorry u r having all these issues...first- the BILL- make sure they submitted it correctly...I got one like that too and they were not submitting it right and it took a few times b4 I got it straightened out...they have to submit it thru NY and not PA even tho u r from PA...I know it is hard to deal with , but I am sure it is a clerical error....check to be sure.

U may have a CSF leak causing these HA's u still have...do u feel worse when upright?

Sending u <3 ((hugs)) and prayers
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4320028_tn?1365818075
selma,
I spoke to the insurance company and they told me that since the DR is out of network the way they calculate the "allotted amount" is based off medicare. Which I explained to the woman i spoke with that it was ludicrous. They said they would cover 60% of the "allotted amount" which comes out to $2300. Since I have an out of network deductible of $2000, they sent me a check for $304. That's what they feel is acceptable for a 7 hour brain and spinal surgery...
I went to the assistance office today. Got no where. In the state of PA the income guidelines (the amount of money we are allowed to make to qualify for assistance)  for a family of 3 (my husband's children don't count since they are only with us part time- guess we don't have to feed or care for them part time) is $406. Who could possibly live off 400 a month? I brought down all of my utility bills, copies of my lease to show what we pay for rent and my $30,000 in medical bills and was told we may qualify for energy assistance ($100 per month) and food stamps, but that's it. They said they MAY be able to help with some of the medical bills, but sorry, there is nothing else they can do. I am so fed up with everything....

As far as the HA, I am hoping to find out tomorrow when I go for the MRI, I just want to scream!!!!!!!!!!!!!!!!!!!!!!!
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620923_tn?1405964489

  I am so sorry, mine was a clerical error and was hoping that was the same issue u were having....

Talk to TCI's financial office and ask about a payment plan....that is all I can think of.....
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4320028_tn?1365818075
Thank you for your support and help. I emailed my local congress member and senator. I am sure they cannot or will not do anything, but as my husband reminded me, I am a fighter and I WILL NOT just give up.
For anyone who is interested, here's a copy of what I sent...
am sure that you receive letters every day like mine, but i felt as though I must do SOMETHING to at least try and correct a huge problem in our state.
I was a single mother for most of my daughter's life. Her father walked out while I was still pregnant and hasn't been involved since. I filed for child support, but since he was overseas, I was told they could not do anything until he was back in the US. I did receive some state assistance while I was on maternity leave since my company did not give me any money. At that point, I could have decided not to go back to work. EVERYONE told me to apply for food stamps, WIC, and cash assistance and not to bother going back to work. Instead, I wanted to do things the right way. I worked full time and put myself through graduate school to try to give my daughter a better life. I accrued over $80,000 in debt to put myself through school. I paid over $4000 a month for daycare because I "made too much money" to qualify for assistance. I have paid my taxes and have been a law abiding citizen my entire life. My daughter will be 5 in a few months and I have worked so hard to support her and teach her not to take the easy way out.
I recently was diagnosed with a rare brain disorder called "Chiari Malformation" where I had to undergo a seven hour brain and spinal surgery to attempt to fix the swelling in my brain. I am still healing and unfortunately there is no cure for my disease, only treatment. I had surgery a month ago and so, far I am still experiencing severe problems, and am just starting to be able to walk on my own again.
I have insurance through my employer, but there is $30,000 worth of bills that they refuse to cover.
Today, I went to my local assistance office to try to get some financial help since I am unable to work. I was told I do not qualify for disability since they cannot at this time say if I will be out of work for more than 12 months. At this point I haven't been able to work in four months. I receive NO money from my employer. I recently got married to a wonderful man who has been working 6-7 days a week to try to keep us going. Because of this, my family according to the state of PA does not qualify for assistance. We would have to gross less than $400 a month to qualify. Could you live off of $400/month? I would like to point out that my husband only makes $2000/month. On Paper, it may sound great, but after Rent ($700), electric ($250) my car payment ($347) Gas (he uses his truck to work so it costs $400 per month just to get him back and forth to his jobs) Then he pays child support for his two children who live with us part time. By the time we buy food, I can tell you there is about $75 in out checking account and we are in severe debt.

So what are my options? Should I tell my husband to quit his job? Then the state will pay for our rent, our heating costs, food, and give me cash? All I asking for is a little help until I can go back to work. I thought the point of welfare was to help those who need it. We need it.
There is a huge problem with the system who rewards people who do not work and give them money. I have done the right thing my entire life and it has gotten me NO WHERE. Should we become criminals to support our family? Maybe then the state would help us? I do not understand how these income guidelines are put into place. I cannot pay my bills with my husband working full time. I almost had my car repossessed last month after six years of paying my loan because we fell behind. I was threatened to have our electricity shut off, because we could not afford that bill either. I was able to work out a budget plan with the electric company, but we still owe them over $500. We have exhausted all of my resources.  My father in-law paid our rent last month and my mother and step-father (a State Constable) have helped as much as they could. We have no other options....

Please feel free to contact me VIA phone or email if you would like to discuss this matter further.
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Avatar_m_tn
I understand your frustration....I had decompression surgery Dec 27th '12 and while recovering I became fueled with anger (see profile for details).  I'm a police officer and have to go 6 months to get a pension hearing; they're also keeping short term disability from me (I guess if I was pregnant it would be a different story).  I stopped getting the mail because I don't want to see the bills.  My wife, a teacher, is supporting us and we're feeling the squeeze of the financial vice.  Only good piece of mail was a $100 check from Fellowship of Christian Police Officers.  Unfortunately, that will go to my union dues which, if not paid, I will have no legal representation.
    I started looking into resources in case I end up with "the worse case scenario" which is termination/no pension.  Try https://www.naidw.org/   I'm still waiting to hear back from them.  I also contacted an attorney in Washington D.C. that feels very strongly about cases like ours.  I agree the social services are jammed up with people taking advantage of the system.  Keep your head up.  We'll work together on this; you're definitely not alone.  I am so motivated by these people who minimize our condition that it has become a full time job.
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Avatar_f_tn
you might have qualified for more assistance if you weren't married.  :-(

I admire your feistiness--I am like that myself--but I would suggest that you choose your battles carefully, as you are still healing.
I agree w/Selma; maybe all you can do in the meantime is write to TCI & get on a payment plan.  They might even write off some or all of the bill; at the very least, they can keep the creditors away.
(There is a LOT of loss w/Chiari, which I wont elaborate here, but I receive <$500/mo.  I pay the same amount/mo. for Medicare as someone receiving 4x my amount).

Reality check (sorry):  The system works exactly how it's supposed to--insurance companies exist to make profit; they don't care about you, and have nearly finite resources to fight you.  They will spend more money to win than to pay you.  I have been screwed over by them several times, never won.
Most of the professional politicians don't care either.  Write if it makes you feel better, but... some of the better ones might respond, but their hands are tied too.
We are in austerity mode, & the New Deal is now the Raw Deal.
You will have to explore all unpleasant options--selling a vehicle, moving, appealing to a church, free lunch at school, etc.

Re. those who are "lucky" enough to receive social services (because this comes up periodically) I have this on my fridge:
"those who cannot forgive others break the bridge over which they themselves must pass"
Confucius

One could substitute "have compassion" for forgive.
(off soapbox now)

I sincerely wish you the best.


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Avatar_f_tn
I feel for you and I think you're brought up an important topic! You can tell by the other responses, this (the "system")is a HUGE issue especially for us Chiarians!  I was truly blessed with very good insurance coverage for my surgery, but I currently have insurance that covers the bare minimum, so I am not able to continue on with new tests, etc., the way I should.
I've got my soap box out now (can you tell we're all passionate about this).
I am so absolutely sick & tired of seeing people abuse the system- able bodied people who somehow get a golden ticket on our tax dollars, and then when we have brain surgery & have our lifes turned upside down, all we get is the run around.  I know first hand of people that I work with in the hospitality industry who work minimum wage-type jobs and get the full package of rent assistance, food stamps, heat assistance, medicare, and so on and so on. They are telling me about the vacation trip they're taking, the new laptops they're buying. They've got i-phones and their kids have flat screen tvs and ipods, etc, etc, etc.  Gee, my husband & I make decent money but we don't have ANY of these things. And I can't go to the doctor for my Chiari because we can't afford it.
Infuriating!!!!
I agree with Chiarione- we need to try to work together to change things for people with our condition.  Count me in- I don't have much time to devote but I will give you what I can!!!
Let's increase awareness, research & funding.  Look at what the different foundations for breast cancer & other diseases have accomplished. I don't know where to start, but wouldn't it be awesome to stop the b.s. that so many of us are faced with and create a better path to treatment & healing. Then we could focus on getting better instead of getting worse due to stress and depression!
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4320028_tn?1365818075
Thanks for your words of encouragement. I haven't gotten a response from anyone I wrote to (NOT that I expected to) but I do feel as though the system is corrupt and those who do not work are rewarded for it. I know a woman who is a single mom of two. She legitimately was hurt last summer and forced to go on welfare. Since then, she has no desire to go back to work. she has housing paid for, her electric bill was is $25/month, she receives food stamps, free daycare, AND cash assistance. Why the hell would she go back to work?
I have "good" insurance, but they seem to pick and choose what they are willing to pay and it's ridiculous.
Thanks to everyone for their support and caring !
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4320028_tn?1365818075
So I received a letter from my congressmen that I sent that letter to. They asked me to sign a release form to look into my case further. I don't know if I will end up getting anywhere, but at least I know someone heard me...(besides all of you :) )
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620923_tn?1405964489

  Fantastic News !!

Keep us posted as to how the help....fingers xed
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Avatar_f_tn
I'm so sorry to hear about your situation.  But don't give up!  I also had my surgery at TCI in 2006.  Instead of dealing with the insurance company directly go to TCI and let them help you.  I realize they are out of network but they need to know about your situation in order to help you resolve it - either through a payment plan or forgiving some of the debt. Often getting through the insurance nightmare can mean a letter or referral.  Does your "network" include a Chiari specialist?  If not, often times you can go out of network for a necessary procedure. They could also be instrumental in getting your disability insurance extended particularly if your symptoms have not resolved or shown a great improvement.  The people at TCI are great and I'm sure they could be a valuable resource.
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