Author Topic: Mad a heck, irritated , frustrated depressed  (Read 17172 times)

Soundy

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Mad a heck, irritated , frustrated depressed
« on: October 23, 2014, 07:44:19 pm »
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
3mm AN discovered Aug 2004
Translab July 2 ,2007
3.2cm x 2.75cm x 3.3cm @ time of surgery

Kat From Indiana

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Re: Mad a heck, irritated , frustrated depressed
« Reply #1 on: October 23, 2014, 08:23:08 pm »
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....
Diagnosed 3/29/14 Right Side AN 8mm x 3mm x 4mm
GK UPMC 6/13/14
MRI 12/03/2014

ANGuy

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Re: Mad a heck, irritated , frustrated depressed
« Reply #2 on: October 23, 2014, 09:16:47 pm »
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.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Kathleen_Mc

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Re: Mad a heck, irritated , frustrated depressed
« Reply #3 on: October 24, 2014, 02:57:36 am »
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
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

ANGuy

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Re: Mad a heck, irritated , frustrated depressed
« Reply #4 on: October 24, 2014, 01:52:36 pm »
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/


And now back to our regular, more appropriate, conversation...
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

raji83

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Re: Mad a heck, irritated , frustrated depressed
« Reply #5 on: October 24, 2014, 02:56:08 pm »
hope you feel better.. lot of prayers with you.

photog1

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Re: Mad a heck, irritated , frustrated depressed
« Reply #6 on: October 26, 2014, 10:15:50 am »
Kathleen, I sent you a PM.  Hope that you got it.
Tina (Photog1)

Kathleen_Mc

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Re: Mad a heck, irritated , frustrated depressed
« Reply #7 on: October 27, 2014, 01:30:42 am »
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
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Crazycat

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Re: Mad a heck, irritated , frustrated depressed
« Reply #8 on: October 27, 2014, 02:20:19 am »


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.
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

ANGuy

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Re: Mad a heck, irritated , frustrated depressed
« Reply #9 on: October 27, 2014, 05:47:33 pm »
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.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Crazycat

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Re: Mad a heck, irritated , frustrated depressed
« Reply #10 on: October 28, 2014, 03:19:31 pm »
Whether a person can afford to pay or not....I don't think that's the point ANGuy.
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

MG

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Re: Mad a heck, irritated , frustrated depressed
« Reply #11 on: October 28, 2014, 05:07:42 pm »
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!
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

ANGuy

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Re: Mad a heck, irritated , frustrated depressed
« Reply #12 on: October 28, 2014, 08:00:46 pm »
Whether a person can afford to pay or not....I don't think that's the point ANGuy.

What is your point Crazycat?
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Crazycat

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Re: Mad a heck, irritated , frustrated depressed
« Reply #13 on: October 28, 2014, 10:38:44 pm »
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.
« Last Edit: October 29, 2014, 04:41:44 pm by Crazycat »
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Kathleen_Mc

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Re: Mad a heck, irritated , frustrated depressed
« Reply #14 on: October 29, 2014, 03:06:00 am »
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?
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

 


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