Author Topic: College Student alone and confused  (Read 5014 times)

alden135

  • Newbie
  • *
  • Posts: 1
College Student alone and confused
« on: February 29, 2012, 10:21:59 pm »
hi, I am a senior student and a month ago I got diagnosed with an acustic neruoma on my cranial nerve number 8. My parents were about to take a trip to new zealand and left offering no support(my dad was angry about the cost even though hes the head of a hospital and it wouldnt cost him anything meaningful and my stepmom acted like I was lying about having it). they "said" they would cover the costs, then corrected it to "do what they could". the thing is, I dont know how to contact my insurance, (if i should do that and what to say) to get a contract on what they will agree to pay, I have FEP blue cross blue shield. I got a referal to the House ear clinic and to dr freidman by the local ENT who diagnosed it via MRI. I value being a student (next quarter is my last quarter and I have already been accepted into IRONICALLY a cancer identification research lab (got the call the night before my MRI)) more than nearly anything so scheduled it in two weeks, march 15th, so ii can hopefully recover on the week spring break and maybe into the first week of school i guess. I dont know what surgury/treatment to get (I want it out, not radiation, so debating surgeries). its 7-8mm, im 22 and male.
Additionally, I was wondering, if anyone maybe knew of scholarships or something that I could be eligable for. Though my parents are very well off they dont help me with school so hey every bit helps and Ill likely need it to graduate after what I fear this may cost.
I dont want to have facia paralysis, I dont want to loose my hearing or have my vestibulorchoclear severed and think my head is lopsided for the rest of my life.
I am scared, alone, stressed, and its hurting my grades. I try to keep positive and keep a grin, in fact its a motto of mine, but this AN stuff is takign time that could be studying and is hurting grades and making life hard. I dont know what I am asking for, help, advice, comfort, reviews of drs (anyone know about good drs in Santa Barbara California?) but yeah.. thats my story, any help is much appreciates

mindyandy

  • Hero Member
  • *****
  • Posts: 675
  • Loving Life
Re: College Student alone and confused
« Reply #1 on: March 01, 2012, 07:18:18 am »
Hello there. Being scared is normal. Trust me. I have surgery scheduled March 7th with Dr. Friedman at House. Did you say you sent your scans to him? Your scheduled for surgyer March 15th? Are you staying at Seton Hall? If so we may cross paths.

Mindy
14mm dx 9/07. CK done Seattle  1 year MRI showed some shrinkage. 4 year MRI 2mm growth nothing conclusive. Trigminal nerve involvment Retrosigmoid Friedmand/Schwartz HEI March 7,2012

TP

  • Sr. Member
  • ****
  • Posts: 337
Re: College Student alone and confused
« Reply #2 on: March 01, 2012, 07:31:40 am »
Alden, first I am so sorry you have an AN. My prayers are with you.

When I first was diagnosed I was in shock too. I hope you have an insurance card. My suggestion is you contact your insurance company (phone number usually is on the back side of your card) and speak with someone who can explain your coverage and benefits. I found that once I talked to my insurance company and realized what they would cover I felt a little better knowing my options. Then make an appointment to meet with a neurosurgeon that is supported by your insurance company and have them review your MRI and they will explain your options. My suggestion take a friend with you to this appointment. They will be a great deal of support and can write things down for you.

I am not a Dr but based on the size of your AN you may be able to finish up school with your degree and then determine what the best option for you in removing your AN. God bless you! 

p.s. Please continue to read thru this site. You will find so many topics that will help you and comfort you during this difficult time.
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

Susan A

  • Full Member
  • ***
  • Posts: 109
Re: College Student alone and confused
« Reply #3 on: March 01, 2012, 09:46:11 am »
Definitely call your health insurance company. I know that on my plan, even though all the visits I've done were covered by the insurance, it was still important to get the referrals done the correct way. I cannot have a specialist (like an ENT) do the referral. Although they may be the ones who tell me who I need to see next, I hen have to call my primary care physician (PCP) and ask them for the referral. The PCP's office wants to know who I'm seeing, the date and time of the appointment and what the appointment is for. Easy to take care of, and makes sure that the insurance will cover it. Of course, I do also have to make sure that the appointments are with doctors covered by my insurance.

Your plan may work differently - but really the best way to find out is to call them. Hmm - you say you have Blue Cross FEP - do you have the standard or the basic plan? Looking at the website http://www.fepblue.org/benefitplans/index.jsp it makes a difference - the standard plan means you do NOT need PCP referrals and you can see any doc you want, tho' out-of-plan docs will cost you more. On the basic plan you HAVE TO stay in-network. For a doc that's out of network you'd be liable for 100% of the cost :-( Somewhere you must have a BC membership card that will have a phone # on it you can call for more information.

If your family is not around right now, do you have a close friend who can go with you to your appointments? It can really help to have a second person listening to what the doctor says.

At one level, an AN is a big deal, but at another it really is not. Remember that you are still basically healthy, you found the AN while it is still small, and this is not life threatening. I have a colleague whose 17 year old daughter was just diagnosed with ovarian cancer, is about to go through chemo, and may never GET to college - that put a lots of things in perspective for me!  :(

Do the research you need to do, go to the appointments you need, but in between times do your best to continue with life as normal and keep your grades up. You may very well find that the docs will tell you that your AN is small enough that you should simply watch and wait, going back in 6 months and then 12 months for more MRIs. I found out about my AN over the summer vacation and was very worried and stressed - even started feeling ill - lots of headaches. Then I went back to work in the fall and felt a lot better. SO for some of us, it really helps to try to get on with life - though it took me months before I didn't wake up every morning thinking "%$^& - I have a brain tumor!"

This site has helped me a lot - I'm glad you found it. I hope it helps you too!
2011 8 x 7 mm AN, & 20 x 22 mm M found, both on the left. Mosaic NF2 diagnosed. Some hearing loss
2014 hearing 30% on left, now using hearing aid (HA)
2015 Now have CROS HA - no longer hear enough for HA to be useful in AN ear
2016 Use an FM system on occasion at work to supplement HA

alabamajane

  • Hero Member
  • *****
  • Posts: 592
Re: College Student alone and confused
« Reply #4 on: March 01, 2012, 11:21:31 am »
Hi and welcome to the forum.. there are some really great people on here and many will offer advice I am sure.. one thing you will find is that ANs are slow growing , benign tumors. Yours is small so in my opinion,, and I am not a Dr or in the medical field,, you have time to take a deep breath and do plenty of research on your options..
You don't mention what your symptoms are or the "location" of the tumor,, all are important in determining treatment. You should have time to watch and wait as we call it,, which is to have 6 mo. and then annual MRIs to see if it grows within that timeframe.. You have a good Dr. and medical facility in House,, I am sure you will get valuable info from them.. I sent my MRI out there for consult and gained valuable info into options ,, even though I did not use them for my surgery , about 4 mo ago..

I also have FEP BC/BS and they paid VERY well,, I did not have to have any referrals prior to making appt. and they paid 100% of inpatient costs and I believe about 80% of Dr costs etc.... I ended up with two surgeries 4 days apart and a week in hospital and 5 days in ICU.. but with the BC/BS the Dr/hospitals have agreed to specific amounts they will take and you will not be responsible for as much as is billed.... make sense??? ,,,, this is not "cheap" surgery,, but you have good insurance.
That being said,, you may also want to consider IF you will have insurance once you are "off' of your parents plan,, that MAY be a factor in your decision making.. but I believe you can be 26 yrs old now before you drop off..

Everyone's experiences are different with these "buggers",, so it is hard to "know' just what your outcome will be,, but read all you can from different people and you will see some of the outcomes,, and keep in mind that many of those with GOOD outcomes don't necessarily return to site to report,, they just move on..
TRY not to be overly concerned at this point in your journey,, you are young and have a small tumor with presumably time to make an informed decision.. maybe when your parents return from their trip they will be more support for you and hopefully will go to a Dr visit with you so they can "see" what you are dealing with. A friend to go with you is a very good idea too as there will be MUCH info given and believe me you will not remember most of what is said.... at least I did not,,,
Good luck to you,, maybe you can find a support group in your area and attend a meeting,, that is also very helpful at the beginning.. we are all with you in spirit and thoughts/prayers,,, we know just what you are going through,, it is not an easy journey for any of us,, and there are definitely NO guarantees with any of the treatments,, but it is entirely YOUR decision to make,, as overwhelming as that can be at ANY age,, I really hope you get the support you need from friend or family... keep us informed and know we care!!! Try to get yourself through school and then worry about this,, I think you have time on your side and finishing school successfully is the most important thing at this point....Hopefully you will have a good visit with Dr and gain more info.. recovery for most of us I believe takes at least 2-3 months before you feel able to "get on with life",, and that all depends on results of procedure.. Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Ned

  • Jr. Member
  • **
  • Posts: 99
Re: College Student alone and confused
« Reply #5 on: March 01, 2012, 11:59:50 am »
It might make sense to take a semester off.  I think researching such an issue and trying to study certainly would be a challenge.  I had very little support in the beginning, I pray for your peace.  If you want to talk sometime, I'm an old fart but you are welcome to pm me or we can exchange phone numbers. I would have given anything to be able to talk with someone that had been down the road when I was researching.  Good luck.
2003   1.5cmX1,6cmx1.3cm
FSR Sara Cannon Cancer Center  Nashville
2006  1.1 cmX1.2cmX .9cm

chloes mema

  • Sr. Member
  • ****
  • Posts: 403
  • Life is a special occasion.
Re: College Student alone and confused
« Reply #6 on: March 01, 2012, 01:28:55 pm »
So sorry you have joined our merry forum but glad that you did, you will find so much support and information here.
Let me preface the following with I'm not a doctor nor in the medical field the following just comes from my personal experience.
I would suggest getting at least one more doctor's opinion on the results of your MRI.  I think we all go into some sort of shock when we're first told "you have an acoustic neuroma" then comes the stress and worry.  I know my ENT recommended a prominent neurootologist (who I didn't care for) who basically just said yep you have one see me in 12 months after another MRI.  Then I switched to a neurosurgeon who took the time to sit down with me and explain how the MRI works, where the tumor is, the size of it etc.  Then she made arrangements for a thin cut MRI (yes, different kinds of MRIs make a difference in the diagnosis apparently) for May and assured me that everything is going to fine.
So follow the advice of the other answers on this thread, take your time.  Remember these tumors are NORMALLY slow growing so you should have time to sort out your insurance, school, and research of what type of procedure will be best for you.
Good luck and keep reading and posting on the forum.  We're here to support each other.

Karen
   
Diagnosed October 2011
Oct '11-9 X 6 mm left ear
Mar '12 - 1.25cm
Tinnitus, imbalance, and mild dizziness (ditsy)
My AN = Annoying Nuisance
Jan'12 W&W
Mar'12-looking for radiation trtmnt
Apr'12 starting countdown to CK
May'12 CK completed
Oct'12 hemifacial spasms

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • To conquer fear is the beginning of wisdom
Re: College Student alone and confused
« Reply #7 on: March 01, 2012, 01:56:02 pm »
Hi, Alden ~

You've already received some very useful suggestions that I cannot significantly improve on but I did want to welcome you and offer you our collective experience and knowledge as you struggle with your recent AN diagnosis.  We're here to inform, advise and, most of all, support other AN patients so feel free to 'drop in' anytime (we're 'open 24 /7). 

From your post, it appears as if you and your parents have a somewhat detached relationship so you may want to seek out an advocate, if possible. 

I concur with other posters that you may want to attempt to finish school, then address your AN - or simply take a semester off to deal with it, then finish school.  Those are your two basic options.  Which one you chose is, of course, up to you.  If your symptoms are minor and not affecting your schoolwork, you should see what the doctors say but it seems as if you may be able to postpone surgery on a tumor that tiny.  However, I'll defer to actual medical doctors on that one and, once again, offer you our support and encouragement.

Jim
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.

Mei Mei

  • Hero Member
  • *****
  • Posts: 1278
Re: College Student alone and confused
« Reply #8 on: March 21, 2012, 07:02:49 pm »
I too, welcome you to one of the best Forums going.   You have a small tumor, even smaller than mine.    Take deep breaths and focus.  Make your choices with your gut.    If it were me, I would go with the advice Dr. Friedman has to offer.   You are so fortunate to have him just down the coast from you.    You could go up to Dr. Chang in Stanford and have radiation.   Whichever, you have great choices in your own backyard.   

I am sorry about your family's lack of support.   I've been to several surgeries alone and it's very disappointing but with that disappointment I've found so many quality friends that came to me when I had my third surgery last Friday morning.   Disappointments are hard to get through but you are strong, I can tell...you've found us on your own resources and reached out.   We are your extended Forum Family and are with you 24/7.   PM us anytime and we'll be in touch.
Our heart goes out to you.
Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

MDemisay

  • Hero Member
  • *****
  • Posts: 892
  • Forever Thankful for Supportive ANA Friends!
Re: College Student alone and confused
« Reply #9 on: March 23, 2012, 10:07:30 am »
Hi Alden,

So pleased to meet you, though not under these circumstances! You appear to have found on your own a quite supportive group we will be here 24/7 to provide encouraging words of support and a wealth of recommendations to you as to doctors to help you with your treatment choices.

We must all choose at one point or another, however! I cannot understand that your family is not more supportive of you.

I am 55 years old and going through another procedure myself, however, I also have a child in her senior year in college. It will be tough but I believe you can graduate without getting treatment depending of course upon what your doctors say. I am also under pressure to have this procedure done before my daughter graduates!

I have a Patient Advocate to recommend should you need one as Jim recommends. You can PM me if you need to know her name and would like a referral.

Good luck and please remember now that you know us, we will be here for you! Good luck as well with graduating from college. Please don't delay that, if possible.

Godspeed,

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

 


anything