I see I am not alone

[shanarann]

This is my first visit here and it is interesting to see so many people who have acoustic neuromas. I was diagnosed with one February 23 and told by my ENT that they are rare. I have been to U of M and met with Dr. Telian(he was very reassuring by the way) and setting up my surgery is in the works. My issue is not one of what to do because I know that at this point surgery is my only option. I am unfortunately uninsured. I am a single woman who has returned to school to better my life. I am going to school full time and am unemployed.I am living on student loans and grants. I am at a place where I can try to find employment now, but not sure anyone would be willing to hire me with this condition. Not sure what to do about it.
Do any on you have any suggestions?

Sharon

[Mei Mei]

Oh my!  You are not alone.   You have found a wonderful forum and from what I've heard you have a wonderful doctor at Univ. of Mich in Dr. Telian.

What you don't have is health insurance.  I just had my surgery on Jan 12 and was fully insured ... just got the bill and it was a big bill.   You NEED insurance some how some way.   Can you get any job at the Univ of MI?   Just anything?   It probably wouldn't help.  You've already been diagnosed.

Maybe someone on this forum has some ideas....but yes, you are not alone...

Sincerely,
Mei Mei

[ombrerose4]

You definitely need to find  way to get some type of health insurance. Try talking to someone at the hospital, perhaps a social worker or maybe someone from the patient financial services dept. Does your state offer any low cost health insurance or a sliding scale type of insurance? You need to do some digging for information. Have you spoken to the doctor about your insurance situation- maybe he has some suggestions? I hope you find some answers

[CHD63]

Hi Sharon .....

And welcome to this forum!

I could not readily find the thread with posts about someone who else who had no insurance.  Hopefully someone will chime in here soon with the info.

However, I do know of a friend of mine who had cancer who was self-employed with no health insurance.  He was able to go onto Medicaid temporarily and that covered the costs of his cancer treatment.  Check with your ENT's office or the U of Ms social services department or your state medical association.  Someone has to be able to help you in this situation.

Best wishes.  Clarice

[leapyrtwins]

Sharon -

welcome to the Forum.  You are definitely NOT alone; I'm glad you found us 

I met Dr. Telian @ the 2009 ANA Symposium in Chicago and he seemed like a really good doctor.  You'll be in good hands.

I don't have any specific ideas for you as far as insurance coverage goes, but having an AN shouldn't be a hindrance to being employed.

Jan

[Jim Scott]

Hi, Sharon - and welcome. 

I'm sorry you've been diagnosed with an acoustic neuroma (which are relatively rare, as your doctor stated) but as you noted, you're definitely not alone!  I'm pleased to see that you're apparently sanguine regarding your planned AN surgery with Dr. Telian but I'm sorry to learn that you're without medical insurance coverage.  Unfortunately, the reality is that AN surgery, including the hospital stay (typically 5 days) is expensive, somewhere in the vicinity of six figures.  Although hospitals and doctors will usually accept 'payment plans', this kind of expense is very likely too large for you to assume on your own.  I don't know where you live but if, as I suspect, you're in Michigan, I urge you to contact the MDCH and try to find out if you qualify for Medicade.  Here is a link to their website: http://www.michigan.gov/mdch/0,1607,7-132-2943_4860---,00.html

We want to help and support you in any way we can Sharon and I trust that you'll allow us to do so.  Our members are always eager to offer information and advice to newly-diagnosed AN patients.  We're not medical doctors but we have a wealth of practical experience with ANs and we know what you're going through - because we have, too.  Please let us help you. Thanks. 

Jim

[Denise S]

Sharon, welcome to the forum!

I am assuming you are from MI, I am too...Ludington.     Dr. Telian was pretty popular this past 2 weeks.   2 other posters had an appointment with him yesterday and I think another is coming up soon too.       Do you mind sharing any of your info.  Like size tumor, any symptoms, when surgery, type surgery planned? (always nice to know others situations too)    You also mention you just found out Feb. 23rd, so these tumors are to be slow growing, so you should have some time to work some things out.    Did you tell Dr. Telian your situation?

Jim looks like he put the link you may have to check into.   I know Medicaid can take awhile to get approved, best is to see a local FIA office.    Another option in our county is something called TenCon which I think is through our health dept.   My mom has no insurance and was suddenly going blind due to cataracts.   She wasn't going to have surgery due to no insurance, but she HAD to have it or go blind.  We checked around and even spoke with the hospital and they gave her all options too and so did her doctor office.   If for ANY reason something is denied prior to surgery, reapply after surgery.   Sometimes they look at the actual bills, but not the pre info.   (have to say the billing people at the hospital & doctors should know the most)  Also, since U of M is a teaching hospital there may be more to look at there.

Please don't give up becasue I know (being from MI) there is stuff available.  Hopefully it will all work out for the best.   

Best Wishes, Denise

[Lizard]

U of M is fantastic! Didn't go there myself, but have heard great things.  I'm really surprised that as a full time student your university does not require you to have it.  I would talk to the school and see if they can help.
Good luck, seek treatment sooner than later...

Liz

[shanarann]

Thanks for all your responses. I had a mental fart. I saw Dr. Telian on Feb. 23, sorry. I found out I had the AN on Feb. 10. The reality came fast actually. I have been having some ringing in my right ear since last october. Lost my hearing in December. Seemed like overnight. My GP just thought it was a virus or something and gave me antibiotics, decongestants etc. Finally went to an ENT on Feb 8, had an MRI on the 9th and my ENT called me on the 10th. He referred me to Dr. Telian and there it is. I have 2cm AN. My surgery is scheduled for May 12 as I wanted to finish the semester prior to surgery. I know most AN's are slow growing but apparently Dr. Telian thinks mine is not and so do I. As far as insurance, I am going to a community college and they do not care if I have any medical insurance and do not provide any kind of student insurance. I do have some coverage with Kalamazoo county health plan and U of M is going to work with me on what is not covered. My daughter and a very good friend are going to have a benefit dance for me to help with the costs. I guess I won't worry about it until I have to. The one thing about this "unwelcome visitor" is that it may effect my balance. I am a professional dancer and that really sucks. I guess I will just pray that I will be able to dance again.

[sues1953]

Hi Sharon, Welcome to this forum.

I am so sorry that you are going through this.  I hope you can get the help you need with the cost.

I actually saw Dr. Telian this past Tuesday and I liked him very much.  This was a second opinion for me, third if you count House Ear Clinic in LA (free phone consult).  I'm wondering what approach Dr. Telian wants to use for your surgery.  Do you have any hearing at all left on your AN side?  Is it the sudden hearing loss that makes him think it is growing fast?

Dr. Telian had a different opinion than my first Dr. did, in fact he is questioning wheather it is an acoustic neuroma at all.  He thinks its a meningioma because of the shape and the fact that my hearing is still very good.  Sooooo I am very confused.  I called House Ear in Calif. and ask Dr. Slattery to take another look.  They are so great there, if you haven't sent your MRI to them yet its a great easy way to get another opinion.  He is consulting with others there is going to call me back.  I will go from there.

Good Luck to you.

Sue in Michigan

[epc1970]

Sue
I have the same situation-Drs thought a menigioma because I had such good hearing and I had very little tumor in the IAC and none of the characteristic erosion of the bone of the IAC.My own surgeon  went in not really sure what they would find but said he would know right away when he actually saw it  based on the color-I guess they are both distinctive in color.  The Drs at House though said they were 99% sure I had an AN and they were right! What did House say about yours?
Erin

[knakag01]

The one thing about this "unwelcome visitor" is that it may effect my balance. I am a professional dancer and that really sucks. I guess I will just pray that I will be able to dance again.

Hi Sharon,
I too dance, although not professionally, and have worried about being unable to do so in the future. I can't imagine not being able to dance. I am trying to stay positive and hope that my training will only help with recovery. I pray your training comes in handy too! I have faith that we will dance again!

I recently put together a dream board and included a beautiful picture of a dancer in mid leap, below it reads "I WILL DANCE AGAIN!!" I am working now, before my surgery, to build up my core strength and practicing balance exercises in  hopes this will help.

Take care,
Kim

[shanarann]

That is a great idea you have Kim. It really is my biggest fear that I will have issues with my dancing. I think I will follow you and put a visual out for me to concentrate on. I actually may have a picture of myself dancing to put up. I think this waiting is driving me crazy. I want to get it get the surgery over with, but I had the great idea of waiting until my semester was over with Oh well, I am learning alot about what to expect after surgery so I will be well informed.

[arkansasfarmgirl]

The one thing about this "unwelcome visitor" is that it may effect my balance. I am a professional dancer and that really sucks. I guess I will just pray that I will be able to dance again.

I am a horseperson (barrel racer) and one of my big concerns was if I would be able to run barrels again after.  Turns out that balance is not a problem for me, and I have been back on a horse since about 6 weeks after surgery.  I haven't been able to compete yet, because I sold my competition horses prior to surgery, but I have been training a couple of them, and haven't had any problems.  Even with the spook-butt that likes to drop and wheel around at the least little thing.  :-)  I can also swing my kids around in circles without getting dizzy, which was something I had not been able to do for years.  Balance problems do happen, but they're not inevitable.

Vonda