Losing Hope Fast...

[Crazycat]

Hi,

    I believe that all - or most- hospitals have a free care program. There is an office in the hospital where you can go and apply for it.
This service acts as a stepping stone to Medicaid (state-sponsored insurance). Call the hospital and inquire about this service.
Chuck may be in a position that will qualify him to receive this benefit. Out of work, not a home owner, at even greater risk due to abbreviated care for a pre-existing problem (the AN), etc......Help is out there. I know because I've been a recipient of it.

          Paul

[Help for Chuck]

All,

Again, I'm so surprised at all of the feedback, sugestions and support my post has brought.  I called my brother Chuck yesterday morning and told him about the post.  I read each and every message to him and he was so overwhelmed.  I really think this has brought some hope back to him (and me) so we can continue to fight.  My goal in the next week is to get him to this site and let him read all of the stories.  Like several of you have suggested...this will let him know that he is not alone in his fight.  I am also going to start making phone calls tomorrow to see if we can get him help.  I noticed names of two doctors in Columbus, OH on this site that specialize in AN.  I'm hoping to see if one of them will take my brother's case...if I can get around the insurance or get assistance from an agency.

I only wish we would have known about this site before his surgery.  We would have demanded on a surgeon that specialized in AN vs. what we got.  Some of you have asked about the size of my brother's AN.  It was 3.5cm, but the issue was the location.  When the surgeon met us after the surgury, he said the reason it took so much longer than he thought it would was because of the location.  I remember him rolling up a piece of paper making a tube.  He said the acoustic nerve ran though a tunnel like the paper tube and Chuck's AN was not only on the nerve, but on the nerve inside the tunnel.  He said he had a very difficult time getting the AN that was inside the tunnel.   

Again, thank you all for your support and suggestions.  I will keep you posted on our progress.

Sharon

[ppearl214]

Hi Sharon (and Chuck).... IMO, it sounds like the surgeon may have been over-ambitious in wanting to do the surgery .... AN's are extremely rare and only make up approx 6% of all brain tumors (malignant and benign).  The "tube" he described, more than likely, was the IAC (inner auditory canal), where the hearing/balance nerve reaches from the brain, where AN's tend to grow.  If it was sticking out of the IAC, it means it may have been reaching towards the CP (Cerebellopontine angle), which would lead it to the brain stem.  Now, these are just guesses but without seeing MRI films/reports, based on what you have shared, that would be my initial guess (granted, I haven't had enough coffee yet this am!).

Now that the surgery is done, it's time to get Chuck moving along and helping him any way we can. Sounds like you have terrific suggestions now and will keep my fingers crossed that all will move along in a proper direction for Chuck (as well as you and your Mom and everyone else close to you).  As you can see, many members here have been in similar shoes in battling "red tape" and they can definatley help guide you all during this ride. I know there will be those barriers along the way that will try to stop you all in moving forward with red tape.... but perservance (did I spell that right?) will conquer. 

Hang in there.... please try to enjoy the holiday today... and most of all... hang tough!

Phyl

[sgerrard]

Hi Sharon,

I am so glad to see you came back to the site again. I hope to see Chuck himself here in the next week or two.

I think Phyl is right, the tube referred to is the IAC, where all ANs originate. It would have been preferrable to have a surgeon who recognized that up front, but Chuck's tumor was a large one, and his outcome is not that unusual for a tumor that size. Saving hearing would have been unlikely in his case anyway, although he might have avoided some of those initial side effects, like that trip back to the ER with meningitis.

But that was then, and this is now. I have a couple of more ideas for you and Chuck:

1. He should have had, or should get, a follow up MRI to see if there is any residual tumor or new growth.

2. Is there a public library near him? Often they have computers that the public can use to access the Internet. If he could take a bus to the library, he could get to this site, and many other resources on the Internet, that might be helpful or at least encouraging.

3. I think he should apply for unemployment compensation. They may not grant him any, but they might help him find resources to help him get employed. If he can't work because of headaches, they might help with that. If he needs to take some classes, they might help with that. It is another way to get some assistance or referrals.

Also pursue the other avenues of assistance that have been suggested, including medical help for the uninsured, social services programs, the United Way, and so on. Our systems are notoriously bureaucratic and cumbersome, but they mean well, and no one wants to let Chuck slip through the cracks. You have to be a squeaky wheel to get any grease, though, so start squeaking!

All the best,

Steve

[Sue]

Hi Sharon,

I'm so glad I read this thread again to see all the wonderful ideas and help everyone around the country has been offering you.  All I was able to do was offer my sympathies at the outrageous condition your brother has been left with following his surgery.  I do hope the combined forces of the " AN Warriors" on this site will help you and your brother find the help that he so desperately needs.  Again, best wishes to you both.

Sue in Vancouver USA

[GM]

Some states have brain injury funding.  Have you checked into this?  Try writing to your Senator...

GM

[HeadCase2]

Hello Sharon,
  I hope you and your brother are doing better today.    I'm glad you've found this site.  There is so much support here, and great suggestions for new approaches to problems.   
  AN can sometimes take one's life in a new direction than expected.  That can sometimes affect one's self worth, and can lead to depression, even for the toughest of us.  Reading between the lines of your first post, this may be making it harder for your brother to get moving again.  I hope he is able to get online to particpate in this forum.  It can realy help to "talk" to people who have experianced the same issues.
 Here's hoping your brother gets the help he needs.
  Rob
   

[Help for Chuck]

I'm sorry I haven't updated everyone sooner, but this coming Monday I'm taking my brother to see a doctor at Ohio State Medical Center who specializes in AN! 

When I originally posted his story we were at a dead end and as I named my post "losing hope fast".  But with everyone's outpouring of advice, tips, positive thoughts and prayers, we kept on searching for help.  I found this group of specialist at OSU Medical Center and gave them a call.  I told a special person in their office our story named Brenda and instead of transferring me to someone else, she took us under her wing.  She told me of a program they have called H-Cap.  She said based on my brother's income and expenses, they could pay for up to 100% of his treatment.  We him having no insurance and limited income this was music to our ears.  He completed the paperwork and was advised they would pay for 75% of his treatment.  This was wonderful news.  The next step was getting an appointment.  They were booked solid for months out, but had schedule an appointment in January 2008 for him with someone in an area that deals with balance.  I called them and told them my brother's story.  Again, another special person took interest in my brother.  She agreed the balance area wasn't who he really needed to see right now, but she knew the best doctor at OSU that might help my brother.  Later that day I received a call from someone at OSU and we had an appointment with this doctor for November 19th.  We were able to secure all of his medical records from the surgeon who did the original surgery in January of 2006, plus all of the records from the hospital where the surgery was performed. 

Our appointment is this coming Monday at 10:00am.  Again, I just wanted to take everyone for their support and positive thoughts and prayers.  If I could, I would change the name of this post from "Losing Hope Fast" to "Hope Restored"!  Everyone keep your fingers crossed and hopefully we will get some answers on Monday to help my brother.

Sharon....Chuck's sister

[nancyann]

YEA !!!!!!   Great news !!!!!!   Will definitely keep fingers crossed !!!!    All the best,  Nancy

[lori67]

I'm so glad you found someone who is able to help your brother.  There are a few out there who will go the extra mile - the hard part is finding them sometimes.

One thing I didn't see mentioned so I thought I'd throw it in for consideration, is asking the doctor about starting your brother on some sort of mild anti-depressant medication to get him through this tough time.  I know there was a point at which I was sure I was losing my mind and was having more bad days than good.  I happened to mention it in passing at a routine doctors appointment and he suggested it.  I was opposed to it at first - because that stuff's only for crazy people - right?  As he explained, these "bad days" were just a normal reaction to an abnormal situation and does not qualify me as "crazy" - just as a normal person who is having a tough time dealing with all the life changes at once!

Anyway, it's pretty mild and has done wonders.  It did not change who I am at all - just made me feel like I still had to deal with these things - but at least now I could do it without taking my "bad days" out on those around me.  I know the whole prescription thing gets to be an issue, but if you've found someone who can help. maybe there's some help with prescriptions available out there too.

It also helps to read the posts here and see that you're not alone, so maybe at some point, your brother might want to get on here too.  I know it's been really helpful to me to finally be able to talk to people who get it.

Anyway, just thought I'd throw that out there .  Hope it helps.  Tell your brother to hang in there.  It does get better with time.
Lori
p.s.  And take care of yourself too - sounds like your family needs you!

[Jim Scott]

Hi, Sharon:

I was so pleased to read your updated post concerning your brother, Chuck, and the help he is now going to receive. 

Although we can all appreciate your kind words toward the folks that posted on this thread, you are the one to be commended for doing everything you can for your brother.  Collectively, we do try to help but all the advice in the world can't replace the fact that you took responsibility for following through, continuing your search for help and finally, finding it with the assistance of some caring people at the OSU medical center.   I believe that prayers are answered and this is further proof, if any were needed.  Of course, being pro-active , as you've been, sure helps, too!

I look forward to reading the results of Chuck's Monday appointment - and I thank you in advance for keeping us all informed.  You know that we care and that we understand what you and your brother are going through.  Our prayers for you and your brother will continue and of course, so will our best wishes and hopes that his condition will improve, soon.   

Jim

[Sam Rush]

If your brother lived in my geographical area(central Calif), I would see him in my medical office for free. I think the surgeons who operated on him should continue to see him. You'd think they would be interested in how their own work turned out!! , plus they already made a big fee off of his surgery, so what's the big deal about a few office visits or phone calls? Sorry he has fallen thru the cracks of the poor healthcare system we have.

[cookiesecond]

Sharon,
I totally agree with Jim. I am so glad Chuck has you in his corner! God does bless us with favor and I am so happy you are finding people to help along the way. Thanks for keeping us posted and we hope to hear from you soon.
Take care,
Lynn

[MLB57]

  Hi Sharon-- I have been reading the posts here and I am happy for Chuck and you that help is imminent now--I can only imagine what you both have been thru--Chuck physically and emotionally and you emotionally--but now you have reason to hope--that there are resources out there and that some one truly will help and cares!!!

Best wishes!!  Mary from MA 

[Dana]

Sharon and Chuck,

I'm so happy to see your message that you've got an appointment Monday.  Way to go; glad you pushed and found some knowledgeable folks willing to listen and help.  Thanks for posting.  Give us a report.  I'm sure there's lots yet to do, but at least it's a good start.  

Affectionately,
Dana