Losing Hope Fast...

[4cm in Pacific Northwest]

This ANA forum is awesome...

Reading this thread give me goosebumps and tears.

What a great bunch of caring people you are!

4

[leapyrtwins]

Sharon -

this is such wonderful news.  Please let us know how tomorrow's appointment goes.

Wishing only the best for Chuck.

Jan

[beancounter]

Sharon, I have followed this thread and felt the despondency in your tone, so was so delighted to see, just today, that things are looking up for you and Chuck.  You have been your brother's keeper in the literal sense of that term and are a shining example of what a "patient's advocate" can do.  He is so fortunate to have you in his corner.  Best wishes to you both, and God bless.   Nancy

[sgerrard]

I will join in wishing you and Chuck the best. It sounds like you have finally find some one to respond to your situation. Best wishes to you both.

Steve

[Lisa Peele]

I'm so glad to hear things are moving in the right direction for you guys.  I live in Columbus.  Which doctor are you seeing at OSU Medical Center?

[Help for Chuck]

All,

We met with Dr. Abraham Jacob at OSU this morning.  Chuck first had a hearing test prior to meeting with Dr. Jacob.  He did have some hearing in his left ear, but it was at 120 decimals, which is like standing next to a jet engine taking off.  He has been without hearing in his left ear since the surgery in January of 2006 and has adjusted accordingly.  His main problems now is fatigue, balance issues, weakness in his face muscles, constant soar throat and headaches.  He then met with one of Dr. Jacob’s residents.  She asked a series of questions and did some simple balance tests in the office.  You definitely could see the weakness in his face especially around his mouth and eye, but his balance issues were most prevalent.  When he closed his eyes and tried a couple of the exercises, I thought he was going to fall, but luckily she instructed him to open his eyes and she assisted him in catching his balance. 

We then met with Dr. Jacob for almost an hour.  He asked numerous questions and answers many of our questions.  My brother shared with him he feels worse now than he did a year ago.  Chuck is convinced the tumor has returned.  Dr. Jacob also suggested the fatigue could be because his brain is working all the time to compensate for his balance issues. 

As of the end of the visit, he has scheduled a balance test and an MRI.  Chuck was approved for H-Cap for Dr. Jacob, but we are applying for OSU Medical Center tomorrow.  If we don’t run into any problems with this tomorrow, we will be traveling back to Columbus next Monday for the MRI and balance test.   After asking, it appears both of these tests will cost right around $4,000, but if the OSU Medical Center is approved at the same level as Dr. Jacob’s services, it will cost us around $1,000.  That is a lot of money for my brother and family right now, but it’s a lot better than $4,000! 

We have decided to proceed, just to get some closure as to if the tumor has returned.  I am confident we are at the right place for help and if something can be done to improve Chuck’s quality of life…Dr. Jacob and his staff will provide us with those answers.

So, keep your fingers crossed and I will let you know the outcome of our tests.

Sharon

[Patti]

i am so glad that you are working so hard to help chuck.  i found myself thinking of chuck yesterday knowing he had an appointment and couldn't wait to hear from you.  good luck.  patti

[Don]

 Is he a veteran? if he makes less than 40k a year he is entitled to health care through the VA, do not let SSDI jerk you around I got mine in 6 weeks without a lawyer by exposing their nonsense to my Congresswoman this is what we elect these people for! My tumor started growing in the service so it is now service connected as they didnt know what was causing my symptoms at the time an other interesting side note was that I had just finished up about a 4 year stint as an aircraft painter, hazmat city any type of solvents and most I worked with are now banned by the EPA, ask him if he ever worked with polyurethane paint?

[4cm in Pacific Northwest]

Oy ya ya

Re “polyurethane paint�


I went to art school in my youth, worked as a house painter in the summers, then taught high school art as one of the courses ... and renovated way too many houses… paint was a daily part of my life.


Don- Do you think this is connected with and AN tumor and growth. In my case there are so many variables we do not even know where to start.

The cause of AN (other than NF2 and genetics) we do not know… the research is happening at HEI but there are so many variables.

You could always start a new thread-  “polyurethane paint exposure?- surveyâ€?...
4

[Jim Scott]

Kudos to Don for bypassing the Social Security maze and utilizing the clout of his congressional representative to cut through the nonsense and have his claim for SSD benefits approved in what is probably near-record time.     Way to go, Don!

That Social Security Disability bureaucracy is one screwed up system!  I know a young man (an erstwhile friend of my adult son) who never held a job in his life due to mental problems (more apparent than real, in my unprofessional opinion) and when he applied for SSD, this young fellow claimed 'depression' as his disability.  He was approved almost immediately.  That was quite a few years ago and to my knowledge, he's still collecting.   Go figure. 

As for polyurethane paint being the possible culprit for developing an acoustic neuroma: I have no idea, although I suppose anything is possible.  Frankly, I'm a tad skeptical regarding external sources being the actual cause of AN tumors but I'm open to real evidence proving that theory.  I can't scientifically disprove it but I seriously doubt that noise or cell phones have any bearing on the issue of what causes a vestibular schwannoma (AN) to develop.  I'm equally cautious about blaming an acoustic neuroma on even long term exposure to polyurethane paint or toxins breathed or absorbed through the skin, but of course, I'm not a scientist or physician and I certainly could be wrong.  The theories are interesting to kick around but ultimately just conjecture with little scientific basis.  Oh, well.  Maybe someday we'll find out the truth.  I'm not losing any sleep over it, though. 

Jim

[fbarbera]

Do NOT lose hope Chuck!!  Things will get better with time.  I did not have surgery, but I did have radiation for a 2.6 cm tumor.  The first months are the worst by far.  You will improve.  Don't lose hope, keep marching forward, and slowly but surely you will have your life back!  And I know you will find the help you need.  Just keep asking, there are many folks out there who want to help.

Stay strong,

Francesco