ANA Discussion Forum
Post-Treatment => Cognitive/Emotional Issues => Topic started by: Soundy on October 23, 2014, 07:44:19 pm
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I pop in and out , read , don't know what to post , where to post or if I want to post ... so gonna just start typing
Had gotten weaned off lyrica and was just having tylonal treatable headaches... some twitches to side of face and eye on AN side ... headaches returned and twitching over a 6 week period increased ...
went to doctor and he wanted an MRI but insurance shot it down ... they said treat symptoms first and see if they subside ... so back on lyrica and headaches diminished but twitches continued ... stupid idiots don't think anything majorly wrong because no new balance issues ... like no duh... I have no balance nerve on that side of my head ...
finally had to go to plan B and did finally get a CT scan not MRI ... and it shows something around my facial nerve... doc wants MRI for better look as the CT was "fuzzy" according to report... insurance won't pay and Hospital wants 51% of estimated cost up front ($2400) so in holding pattern again trying to get approvals ... fear is that residual tumor is re-growing ... report didn't give a firm size of the something
I honestly am not ready for another round of anything major ... still unemployed and disability denied even though potential employers have sited me as a fall hazard as reason not to hire me ... even places that don't know medical history come up with this which tells me big brother has my ssn tagged medically for them to see ... small town I live in but I don't know everyone so other than some trace I don't know how they know anything ... I have fallen maybe 10 times since surgery more than half from spinning head ... but I am employable at something
I feel useless and get a why bother attitude sometimes ... finding it harder to smile and carry on as I have for the 10 years of my AN journey ... I said the most horrible thing I have ever said to my daughters a couple weeks ago ... I spend an enormous amount of time getting them to band , FFA, drama club , sports , etc. etc. etc. .... I do little for myself and have made them my life ... (as I feel it should be) ... but after a long day of head aching and running them here and there one made a request too many ... I said that I just had to get to May 2016 then I could lay down and die and they could do whatever the hell they wanted how ever they figured out how to do it and I could be at peace .... I regretted it s I said it but couldn't stop ... it urt them and my husband but I am just getting at the end of my rope and not getting what I need from any angle ... personal , medical ,... I worked 60 hours in two weeks on book fair at school (where I no longer have any kids) but they let me hang out and help .... I was so tired I barely took care of my kids those two weeks ...let them cook and clean for themselves ....worn out ... but at same time felt better than I have since this all restarted about 4 months ago ...my regular doctor is supportive and for now we are just fighting insurance , controlling pain and treating depression
I just needed to spit this out where I can be understood ... gotta go pick girls up at band practice ... pray for me and my family
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sending hugs and prayers for you and family. this is the place to go when you feel you are at the end of your rope. earlier this month I was so down, I told my husband I was ready to roll over and die. it was hard for him to hear, as there is nothing he can do but be supportive. no one can carry this burden for you but I have found that coming to this site and reading about what others are going through helps me to not feel as isolated. I also know that some days are worse and some days are better. On bad days, I know if I can distract myself and hang on, better days will follow. it sounds like you are doing a fantastic job of taking care of 'you'. keep the faith and fight the good fight. from the beginning I told myself that I would not let this define me. some days are easier than others, to keep this promise to myself. i hope you have better days ahead and will be praying for you. take care....
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Lyrica is bad news. My wife was put on it for a ruptured disk. After one day she was "remembering" things that never happened. I finally was able to prove this to her when she "knew" she put her purse on top of the refrigerator and it was still in her car. She stopped taking it right then and there. One day was enough for her to see how it borders on being an hallucinogenic. She has never had any cognitive issues before or since. Down the toilet it went.
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Sandy: I gotta say health care in the states sucks! The insurance company dictating what tests someone needs not the doctor! BS! Thank God I live in Canada, not long before my tumor was found I was thinking of moving to Florida, thank God I didn't.
I hope you have beter days ahead......like they say when you're at the end of your rope, hang on!
Kathleen
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The healthcare in the States doesn't suck. It's the envy of the world. I speak with Canadians every summer at the beach who are forced to pay out of pocket to have procedures done in the US due to long waiting periods imposed on them. Medical tourism in border areas like Seattle and Buffalo is commonplace due to the shortcomings of the Canadian health system. What you are really trying to do is take political shots which I think is inappropriate here.
Here is just one of a gazillion articles that popped up in a google search:
http://www.gazette.uottawa.ca/en/2014/05/medical-tourism-more-canadians-seeking-health-care-outside-the-country/ (http://www.gazette.uottawa.ca/en/2014/05/medical-tourism-more-canadians-seeking-health-care-outside-the-country/)
And now back to our regular, more appropriate, conversation...
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hope you feel better.. lot of prayers with you.
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Kathleen, I sent you a PM. Hope that you got it.
Tina (Photog1)
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AN guy: in the respect of wait time you are right, Canada is worse than the US however I find it a hard pill to swallow that an insurance company can refuse you something that a doctor says you need. At least here if the doctor says you need it you get it
Kathleen
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What state do you live in? You need to live in Massachusetts Soundy. MA is THE place to be for Medicaid, quality care and other goods and services. When people piss and moan about health care in the States, more-often-than-not it has to do with where they live in the States than anything else. I shudder to think of what my A.N. journey would have been like if I didn't live in MA. 75% of the country is backward by comparison.
In one square mile in Boston you can find, Beth-Israel, Brigham & Womens, Dana Farber Cancer Center, Harvard Medical School, Symphony hall, The Conservatory, Mass College Of Art, Museum of Fine Art and other places I can't remember.
This is not to mention the Mass General- Mass Eye & Ear Campus (my alma mater)a mile or two away. Best hospitals, best doctors in the world as well as the most progressive state-sponsered medical benefits in the country.
I can't believe the way they've been treating you.
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AN guy: in the respect of wait time you are right, Canada is worse than the US however I find it a hard pill to swallow that an insurance company can refuse you something that a doctor says you need. At least here if the doctor says you need it you get it
Kathleen
Again, more politics. Some people believe they should get whatever they want whether they pay for it or not, and others, like me, think you should pay for what you get. This is a political issue, not something appropriate for a forum dedicated to improving the life of AN patients.
And just so you know, I have a $10.00 copay, can see any Dr I want, for anything I want, whenever I want. It didn't take a week to see some of the best surgeons in the world at Duke University and it cost me $10.00. But, I pay for that.
I also pay for people who don't pay a nickel for their healthcare through my taxes. This money could be used to the benefit of my young children, but instead, the government seizes it from me and pays all kinds of medical bills for people who never worked a day in their lives and stick needles in their arms full of poison. So, my children's future is sacrificed so that junkies and illegal aliens can get "free" medical care.
Is any of this discussion appropriate here? Nope.
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Whether a person can afford to pay or not....I don't think that's the point ANGuy.
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I don't have insurance so I pay for my own MRI's. If I don't have all the money for the MRI, I pay it in installments. Hospitals let you do that. It can be easily done. There is a way!
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Whether a person can afford to pay or not....I don't think that's the point ANGuy.
What is your point Crazycat?
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The point is that some people need help (state-sponsored care) who are not illegal aliens and drug addicts. I for one. My surgeries cost more than $100,000. I was on "watch and wait" status for close to five years. I had to wait until the thing grew to the size of a golf ball and I was at death's door before being diagnosed and treated. It was Medicaid that saved my ass. If I had known I could have qualified for Medicaid early on and obtained a timely diagnosis, chances are my treatment would have been much easier, less expensive and without the complications I suffered.
Soundy is in a jam. She's had her surgery and from what she has described, may be experiencing symptoms of regrowth. In my case, I've had MRIs every year since my surgeries in '05. Last year one on my doctors recommended that I start having MRIs every two years. I was fine with that until I began feeling like I did before my initial treatment with headaches, horrible double vision and deathly fatigue. So I told my doctor how I was feeling and an MRI was scheduled right away. It should be the same way for Soundy but she needs the extra help from either Medicaid or SSDI. Insurance companies will leave you for dead if they could have it their way.
From what I gather reading your posts, you seem to be in relatively good shape: your AN is still on the small side, you're on watch and wait status, you probably have a good job, and most important; you've yet to be walloped with surgery and a gargantuan hospital bill.
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Soundy: Back to your issue, and please understand I am Canadian and don't know your medical system well. Let me ask, if you say took out a loan for the MRI and it came back that the tumor had regrown would the insurance company pay you back? You could get the MRI...if it turned out you couldn't get the money back from the insurance company is that something you can afford to do?
Another thing comes to mind, here we often have "studies" going on, some of course are like take this pill and we'll pay you etc., however sometimes there's others like for new medication etc and if you have the illness they will get you tests quicker, for example when the doctor's finally listened to me and wanted to get me in for testing quickly they put me in an MS study, I got my tests much quicker that way, is there such a thing where you are?
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The point is that some people need help (state-sponsored care) who are not illegal aliens and drug addicts. I for one. My surgeries cost more than $100,000. I was on "watch and wait" status for close to five years. I had to wait until the thing grew to the size of a golf ball and I was at death's door before being diagnosed and treated. It was Medicaid that saved my ass. If I had known I could have qualified for Medicaid early on and obtained a timely diagnosis, chances are my treatment would have been much easier, less expensive and without the complications I suffered.
Soundy is in a jam. She's had her surgery and from what she has described, may be experiencing symptoms of regrowth. In my case, I've had MRIs every year since my surgeries in '05. Last year one on my doctors recommended that I start having MRIs every two years. I was fine with that until I began feeling like I did before my initial treatment with headaches, horrible double vision and deathly fatigue. So I told my doctor how I was feeling and an MRI was scheduled right away. It should be the same way for Soundy but she needs the extra help from either Medicaid or SSDI. Insurance companies will leave you for dead if they could have it their way.
From what I gather reading your posts, you seem to be in relatively good shape: your AN is still on the small side, you're on watch and wait status, you probably have a good job and most important, you've yet to be walloped with surgery and a gargantuan hospital bill.
No, the point is that somebody cheap-shotted the United States of America and it's medical system. The medical system that paid for $100,000.00 of your medical care. The system that some seem all too quick to criticize, meanwhile others pay for it. That $100,000.00 of "free" medical care you got came out of SOMEBODY ELSE'S pocket, like my kids, who will sped a large portion of their lives paying for it.
The point is, all of this is political and doesn't belong here. But, that's no matter to the passive/aggressive types who are so eager to complain about the United States of America.
I am very political. But, I have the class and good taste to leave politics where they belong. When I go to my kids' sporting events, I don't wear my political T-shirts because that is not the place for it. But, of course, there was one parent who just had to wear a Barrak Obama T-shirt to every practice and game one season.
I am a Jew. When I am fortunate enough to be invited to a Church service, I don't start discussions about whether the Messiah has been here yet or not, I graciously accept the welcoming hearts of the people in the Church.
This is a bulletin board used to discuss issues regarding AN's. It does not need to be infected with discussions regarding socialism vs free markets, or any other "-ism".
That was my point. Instead of continuing to try and make excuses for why you and others have gone out-of-bounds on this stuff, maybe you should just keep your posts on topic.
It's no big deal I guess. I can easily just skim this board from time to time and see if there are any developments in the medical field that could be of assistance to me and ignore all the drivel. I can make it a point not to post at all while I am at it and let this place devolve into whatever it will become. Of course, I could also do what some here have chosen to do. I could bad-mouth other countries and mock their medical systems. I could mock other aspects of their society as well while I am at it because apparently that is acceptable, at least to you and a few others.
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Soundy: Back to your issue, and please understand I am Canadian and don't know your medical system well. Let me ask, if you say took out a loan for the MRI and it came back that the tumor had regrown would the insurance company pay you back? You could get the MRI...if it turned out you couldn't get the money back from the insurance company is that something you can afford to do?
Another thing comes to mind, here we often have "studies" going on, some of course are like take this pill and we'll pay you etc., however sometimes there's others like for new medication etc and if you have the illness they will get you tests quicker, for example when the doctor's finally listened to me and wanted to get me in for testing quickly they put me in an MS study, I got my tests much quicker that way, is there such a thing where you are?
Some good advice there. What typically happens is there is an appeal process. Claims or pre-approval can get re-submitted under different terms and coding to see if they will be cleared. Most medical providers have staff on hand to do this type of thing and importantly, it usually works. I don't know the statistics, but from an anecdotal point of view, lots of denied services are ultimately approved.
Also, the state's attorney general's office typically has and insurance branch that will help to hold insurance companies to there commitment. That would not be my first step, but I would call the AG's office before I jsut gave up and took the ins co's position as the last word on the matter.
There is a sub-forum on here for insurance issues and that would be a good place to look for info, as well as working with the medical provider to get more info.
And I agree wit your point that things shouldn't be this complicated, but insurance companies have always been like this to some extent and it is just a fact of life.
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Hi all,
I know that this is a heated debate and very touchy for some. I would like to remind everyone to respectfully "agree to disagree."
I am monitoring and hope that this lively discussion stays on even keel.
thanks.
Phyl
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That's already out the window Phyl.
First of all, you said, "This is a bulletin board used to discuss issues regarding AN's." I've got news for you: it's all part of the the where, how and why of obtaining treatment, whether you want to admit it or not.
Second, in-effect, threw the gauntlet down when you pronounced how proud you were that you got the coverage you needed with a $10.00 co-pay (see how far gets you when the hammer falls).
Also, what do you kids have to do with a person receiving state-sponsored care? Shouldn't they be covered under your insurance? Or is it that it's okay for them to receive the state-sponsored care and not some stranger like myself?
It makes my blood boil to hear talk like that when I think of what I went through with this thing and how it completely screwed my life up.
Okay Phyl, I'm done. I'll hold my piece now.
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Hi all,
I am requesting you all take this discussion offline in PM/emails.
Paul, I've had to remove a couple of references in your post as they are not appropriate. I know you understand.
Please keep in mind the audience (other than a couple of people) that are reading this.
Please note that one more time this is reported to me, this thread will be locked.
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Wow ...
I live in Tennessee ... when I had surgery we had Cigna and were switch ( not by choice ) to BCBS of Tennessee ... I used to have a $20 co-payand could see who I wanted ... now no co-pay and I am suppose to pay for visits before leaving office ... my regular doctor works with me and I pay 50% if I don't have the rest and bill remainder ... I have to pay out $2500 on myself before they start paying anything ... this is with changes made about 6 months ago ... we pay $480 a month for family coverage ... I have my own additional out of pocket and higher amount than hubby and kids to pay on deductible because I am a high risk patient ... can't find anyone that will take me on for less ... I think at times the insurance company is trying to weed me off
I am going in again next week and doctor is going to write up MRI order with suspicion of bells palsy .... we will see what happens
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Dear Soundy:
I seem to be someone who is grateful to the Affordable Healthcare Act, or ObamaCare. I found them to be very helpful. I had to call them instead of doing my application online, because their website couldn't deal with the apostrophe in my last name... It's better now. Anyway, it took 15 minutes on the phone to get me the coverage I needed for the surgery. I found out what insurance provider my surgeon and hospital accepted, then the insurance provider did a three-way call with the ObamaCare site, and I got the coverage I needed at a reasonable price. The whole thing is to look at the Out-of-Pocket expense. I found one with a total of $2,000 out-of-pocket per year. I can't even afford that because the effects of the tumor (before I knew I had one) forced me to close my bakery and I had to pay for emergency room stuff that turned out to be caused by the undiagnosed tumor. Anyway, after my surgery I applied for financial aid with my $2,000 out-of-pocket expense, and they set-up an affordable monthly payment plan.
So remember, there are options for you out there. It may be frustrating and maddening, but you can find assistance. Call the Affordable Health Care and just talk to someone. They are very helpful and efficient.
I wish you the best and I thank you for sharing. I guess we can all come to this site to vent, cry, cheer each other on, and simply care about one another.
Be well,
Michelle
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I have talked to them and since my husband has insurance through work that I am on as a part of the family plan I would have to pay more for insurance going through Affordable Care provider than we are already paying... I was deemed not eligible ... if we could just take me off his insurance I might be eligible ... that is a big might ... but he can have full family or single coverage meaning he would have to take the girls off his policy too and then hope we could get them covered some other way...
believe me ... I have been around and around without getting any real workable options...if he did go to the single plan and we tried to get insurance on me and the girls and failed to get it at an affordable price we would have to wait a full calendar year to add us back ... we would get coverage but if it costs us more than we are already paying for same coverage it defeats the point ... so if I were to try , me and the girls could be out of coverage for a year ... due to income amount being too high we can't get on Tenn Care ... there is a program for kids up to 18 called tender care but the girls are not eligible due to income ...
that is probably a bit garbled as I was condensing it and retyping it in some sort of order... everything I have checked would take a book to write
The MRI I had showed something that they are saying does not appear to be tumor regrowth , possibly just scar tissue with some adhesions developing that could be causing the new symptoms ... or rather the worsening of symptoms I have had since surgery since metal mouth and the twitches have been there since AN was removed in 2007... recheck again in 6 month sooner if any remarkable changes occur ... I hate when they use that word ... REMARKABLE
So for now on a watch and wait sort of schedule and hope it isn't Bennies little brother we are looking at... the department that does speech and occupational therapy saw me unofficially (unbilled) and gave me some face exercises to do and said to take a non smiling picture of my face every few days and watch for changes... things they do with stroke patients