Author Topic: Losing Hope Fast...  (Read 8368 times)

Help for Chuck

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Losing Hope Fast...
« on: September 01, 2007, 04:08:03 pm »
I am writing this in hopes to find help for my brother Chuck.  He had AN surgery on January 18, 2006 in Dayton, OH.  The surgeon said the surgery would last 4 to 5 hours and it lasted close to 8 hours.  They said he would be in intensive care for two days and remain in the hospital for a few more days, but he was in for 10-day with 5 of them being in intensive.  Ten days after he was released, he was rushed back to the hospital to be treated for spinal meningitis.  Another week in the hospital…he was then released. 

At the time of the surgery, Chuck was 42 and worked full time as a body man and painter on big trucks.  He was tall, handsome and always had a smile on his face.  He came out of the surgery with severe complications right off the bat.  He couldn’t swallow, his one eye wouldn’t close, no hearing in this left ear, headaches, fatigue and dizziness.

As soon as his FMLA ran out…his employer let him go.  Without a job, he could not afford the COBRA premiums.  His surgeon saw him several times after the surgery, but just told him things might get better or might not…time would tell. 

It has been 21-months since the AN surgery and he is not the same person.  He can swallow now and the dizziness is better, but some days it gets bad.  He has severe headaches and has never regained his hearing.  He has lost a lot of weight…I think from worry more than anything.  He hasn’t been able to get a job because he has no stamina. 

Luckily, he has moved in with my mother, so that has been a huge help as far as the finances are concerned.  He called his surgeon’s office this week to see if they could recommend anything to help with his headaches and the first this they asked was did he have insurance yet.  He said “noâ€?…remember I lost my job and insurance.  They promised the surgeon would call him with a list of herbal supplements or vitamins he would take…but the week ended and no call. 

He pains me so to see such a great person suffer each day with no hope in sight.  There has to be someone or some agency that can help despite the fact he doesn’t have insurance.  Any help/advice would be appreciated. 

reneeairya

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Re: Losing Hope Fast...
« Reply #1 on: September 01, 2007, 04:19:16 pm »
I am happy to help in any way possible. What is most needed right now, fo ryou and him? A cheerful and supportive letter? A friend? Some advice on healing? I will do whatever I can. My journey was also really intense including facial paralysis. Please feel free to contact me.. Lots of love to you for putting yourself and your brother out there to receive support. You two are Not alone :) This comunity will surley have a wealth to support to offer.
In love
Renee

Jim Scott

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Re: Losing Hope Fast...
« Reply #2 on: September 01, 2007, 04:40:50 pm »
I have to post this on the run but I strongly advise Chuck to call '211'.  This is a nationally-connected contact source for social services.  211.



Addendum               From the '211' website:               http://www.211ohio.net/

211 is a simple, easy-to-remember number to call when you need help or access to human services.

It is a free 24-hour service so you get the help you need when you need it.

It will immediately forward you to the local 211 center, which will then direct your call to the appropriate agency when you need:

   Information about human service agencies
   Food and shelter providers
        Child care resources
   Special services for seniors
   Volunteer opportunities
   County and city information
    … plus much more!

I sincerely hope this bit of information proves useful for Chuck.  He will be in my prayers.

Jim
« Last Edit: September 02, 2007, 02:45:47 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

sgerrard

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Re: Losing Hope Fast...
« Reply #3 on: September 01, 2007, 04:57:19 pm »
Sorry to hear about your brother Chuck. Unfortunately these symptoms do occur after some surgeries. The hearing loss is quite common, as are the fatigue and headaches. Fortunately his other symptoms have improved, from the sound of it.

The hearing won't come back, although there are implants and special hearing aids that haved helped some people. There is a whole section in this forum on headaches, and fatigue is addressed in numerous places. One step might be to get your brother to come to this forum and browse some of the posts himself. The simple act of discovering that he is not alone, and that there are others here who have been through similar or worse scenarios, can be a big morale booster.

Insurance problems suck, there is no nice way to put it. If the surgeon can't help, there may be a regular doctor who can at least help with headache management. I don't know how to make it happen, but I think Chuck has to find some way to get going again, with whatever sort of job he can manage to start with - even if it is part time. There are some remarkable stories on this forum of people who have fought their way back to having a life again - I find some of them truly inspiring, and I am not even up against anything so tough myself.

Best wishes to you and Chuck, and hang in there, there is a way...

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Help for Chuck

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Re: Losing Hope Fast...
« Reply #4 on: September 01, 2007, 05:15:04 pm »
All,

I am so blown away that so many have responded in less than an hour since I posted this message.  My brother Chuck doesn't have a computer and l live over an hour away from him.  I called him this morning to check on him because my mother had told me earlier in the week that he wasn't having a good week.  He told me he had been in bed most of the week.  He also told me about breaking down and calling his surgeon because he was in so much pain with no medication with the exception of over the counter.  He was so down because the surgeon didn't call back as promised.  I knew it took a lot for him to call him because he feels he botched the surgery and messed up this life.  He asked me this morning to get online and see if there was something or someone that might be able to help him.  He said that something just isn't right in his head.  He was doing better...having more good days than bad...but the past few weeks have been down hill.  I agree that if he could see/read some of the story I've seen today...it would give him hope to know he isn't alone.  I will do my best to get him on this site as soon as I can.

Chuck's sister Sharon AKA Help for Chuck

Raydean

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Re: Losing Hope Fast...
« Reply #5 on: September 01, 2007, 06:19:18 pm »
As posted earlier please consider setting up an appointment with social services to see what help is out there that your brother might qualify for.  The health Insurance is a top priority.  There might be a state insurance that he'd qualify for based on his income, or lack of income.  Social Security Disability would also be something to consider.  The Social Security Office closest to your brother should be able to assist you in.  Your/his local Pharmacy can assist the both of you information on low cost drug programs.  If it's a specific drug contacting the drug maker directly can result in a much lower cost.

Consider contacting your local  Agency on Aging, even if your brother is younger.  These people are in the know about various programs and are a wealth of information.

Contact your local hospital.  Most hospitals will have a person on staff that can help you with accessing needs and programs that you might qualify for.  Again they would be in the know of who to contact. 

It may take you to get the ball rolling for your brother,  sometimes when you look at the whole big picture, it's hard to take the first steps.  By beginning the process you may be giving your brother the direction he needs to take.  Bless you for being there!!!!

Know that we care and please keep us updated

Hugs
Raydean






Do not go where the path may lead, go instead where there is no path and leave a trail.

Joef

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Re: Losing Hope Fast...
« Reply #6 on: September 01, 2007, 06:40:24 pm »
since chuck had swallow problems I assume he had a large AN .. and had a trans-lab op?

I'm 2 years post op .. and recently received a  eye weight to help me close my lid... its been a big help!

I guess I'm lucky... no headaches... but still off balance at times .. walking and taking the train to work has been great therapy for me!
« Last Edit: September 01, 2007, 06:43:04 pm by Joef »
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

Sue

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Re: Losing Hope Fast...
« Reply #7 on: September 01, 2007, 07:27:52 pm »
Hello,

I, too, feel very sorry for your brother's situation and it is these kinds of stories that show our medical system in it's very worst light.  This is also why so many people on here, who get to advise folks who have found this place before their treatment, tell them to make sure that their medical team is top rate and has years of experience. Of course we don't know all of your brothers situation, but it certainly seems shameful to me that this poor man was operated on and now he's just sort of left by the roadside to figure out what to do. I wish I had an answer for you...I don't...but I do wish him the best of luck in getting his life sorted out and I hope that he gets better.  This is a heartbreaking story. :'(

Kindest regards,

Sue in Vancouver Wa USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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cookiesecond

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Re: Losing Hope Fast...
« Reply #8 on: September 01, 2007, 09:50:29 pm »
Hi Sharon,
I am so glad Chuck has you in his corner!! This group offers a great source of advice and support.We will also lift you guys up in prayer.We recently faced an insurance dilemna with our daughter, she had brain surgery and several strokes{not AN related]. Her medicine was over $500 a month and it doesn't take many months to catch up with you. She finally receives some help!!! keep inquiring and don't take no for an answer. This was all new to me but I checked every source. Some drug companies will help and most pharmacies have some leads. I do pray he will get help soon and most of all, he will get some relief from the pain and work on getting his life back. Keep us posted.
Love and prayers.
Lynn

Dana

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Re: Losing Hope Fast...
« Reply #9 on: September 01, 2007, 10:14:51 pm »
Sharon,
Your brother's situation really hits hard.  Before I give you my thoughts on what to do, let me tell you why it hits me hard.  My late husband, who was, unlike your brother, in his 70s at the time, had brain surgery for a benign tumor (NOT an AN) that was pressing on his medula.  In that surgery, he lost his gag reflex (the swallowing part).  He didn't suffer meningitis, but the whole experience did him in and he died 2 months later.  

Secondly, my parents were both social workers who ran and organized social service agencies, so I have some knowledge and many friends who've worked in health and social service agencies.  The way I see it, social service agencies act like "insurance" should work -- some of us (by "random draw" or whatever) suffer circumstances that are hard to handle.  Living with your mother has given your brother a substantial "net" to catch him during this difficult time, but he needs more help.  If he COULD dig his own way out of the hole that circumstance has put him in, he would.  But the circumstance - his physical condition post-surgery - doesn't allow him to do that.   He needs assistance from others knowledgeable about resources available to him, which can be very confusing in this bureaucratic world of ours.  And when one is having headaches, and hearing and dizziness problems, one gets depressed very easily and hardly wants to wade thru figuring out where to get help.

As Sue said, you can help alot by getting some information about how and where your bro might get some help with his situation.  I did a google search for the Dayton United Way.  http://daytonunitedway.org/find_help/index.htm   Check there for info.  They also have a HelpLine phone number:  (937)225-3000 or (800)917-3224.  

It will most likely take some persistence to find the right help, but this is a good place to start.  United Way should have the best database of resources in the Dayton area.  Because your brother's situation is not the more common domestic violence or extreme poverty or .... ?kind of situation, the first person you talk to at HelpLine may not come up with recommendations right away.  Be gently persistent, perhaps ask to talk to the director of the HelpLine Center.  

Either you or your brother could call, but as I said if he has severe headaches, etc.,  it would probably be easier for you pursue information, at least in the beginning.  If they recommend you talk to Agency A, but you don't get any help from Agency A, call them back, tell them that, and ask for another recommendation.

As you support your brother, please feel free to tell us what you find and ask for our thoughts so we can support you.  This is a great group of supportive, caring and clear-thinking people and my feeling is that you and your brother need mega-support.   Our contribution is (1) letting you know there are people who care, and (2) helping you find the support he needs in Dayton so hope ISN'T lost.

Regards and hugs,
Dana
1.5 cm AN diagnosed June 2007.   GammaKnife July 19, 2007 at Univ. of Washington/Harborview GK Center, Drs. Rockhill, Rostomily. 
After yearly MRIs for 5 years, it hadn't died. So I'm now leaning strongly toward surgery.

tony

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Re: Losing Hope Fast...
« Reply #10 on: September 02, 2007, 01:10:30 am »
I saw your note - and the saddest of tales for sure
A couple of things come to mind
Firstly it does not sound as if he has had proper rehabilitation treatment
depending on the surgery - how long how large etc
some/most of us require quite specialist attention to assist with balance in particular
(I could not walk unassisted 3 weeks out of surgery - I had to relearn)
The (now) overworked (post-op) balance system causes tiredness and headaches
beyond the dreams of a well person. You can adjust - but it takes time
Given the health/finance system - it is still important to find the right
programme - I can now do 18hr days - impossible 12mths ago.
Secondly I am unsure of his work background - he may have to retrain
to do something else. Even with the best rehab - he may never again
be a landscape gardener or outside house painter - not safely anyway
My point here is that it is most important to adjust and find
a work pattern that does not rest mainly areas where you are weak
- the files here are full of stories where folk went back too soon
maybe to the old job - and failed
Basically you risk a succession of setbacks - each the harder to live with
Best look again at roles which are more sedentary/ less busy/ less phyiscal
Find a job/role with a good chance of 95% success or more
rather than roles where the odds are 10% ?
Just to make the point the plan has to be
"Chuck gets well !" - then worry about the job
- it maybe a long road, a year or so  - but it will be worth it
Good Luck
and Best Regards
Tony

nancyann

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Re: Losing Hope Fast...
« Reply #11 on: September 02, 2007, 05:21:00 am »
I echo everyone's feelings & concerns for Chuck.  I can't imagine what he's going thru.    I don't know what would have happened had I not been able to return to work.  This must be so hard for him (& you also).    I hope the suggestions given to you by others will be the key to his return to some kind of normalcy in his life.
Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

ppearl214

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Re: Losing Hope Fast...
« Reply #12 on: September 02, 2007, 05:37:28 am »
Sharon,

As you can see, we are all here to help your brother... you... your family... as best as we can.  I may not be able to offer much more than what folks here have already shared (btw, Jim, I had no clue about "211"... thank you for sharing that!)....... but know that I send love and hugs during this difficult time. My hope is that social services and other remedies provided here do help your brother and family during this time. 

Please know that we welcome you, your brother, your family here...

Phyl
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Obita

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Re: Losing Hope Fast...
« Reply #13 on: September 02, 2007, 07:40:20 am »
Hi Sharon:

I am very sorry to hear about Chuck's post op problems.  Any chance he was ever in the service?  Has he ever had a follow up MRI? 

There is help out there.  I hope you can find it for him soon.  He deserves to get his life back.

Chuck is very lucky to have you in his corner.  Welcome to the forum.  Kathy



Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Captain Deb

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Re: Losing Hope Fast...
« Reply #14 on: September 02, 2007, 06:24:22 pm »
social security Disability Lawyers are forbidden to charge you unless they win your case and even then it's a modest fee. I would suggest calling one if you get turned down the first time(they turn almost everyone down at first)
Also start gethering every singel piece of medical record you can get your hands on--all the mri reports, surgical reports, hospital bills (itemized) prescription meds (can be printed out from your pharmacy) The docs are obliged by law to release all these medical records. You will need them for and Social Security disability claims. START TOMORROW!!!!!

Capt Deb 8)
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