Author Topic: New diagnosis - seeking info  (Read 7873 times)

tgillesp

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New diagnosis - seeking info
« on: August 29, 2010, 10:39:08 am »
Hi, my name is Tracey.  I am so glad to have found this site!  Everyone here seems wonderfully supportive of each other.  I am 48 and from Biloxi, MS.  I received my diagnosis of AN (app. 5mm) last Wednesday.  Since then, I have been reading up on all the information I can find.  I have been reading posts here as well to learn as much as I can.  I have a few people to contact who have offered to talk about their experience and will be doing that soon.

My AN seems very small in comparison to what I am reading about others.  This was the first MRI and my ENT said I needed a specialist to do more testing/MRI  to be sure.  There are no specialists in my area, so he wants me to go to Vandy in Nashville, TN.  I also live close to New Orleans and there is Ochsner.  He said he would prefer I go to Vandy.  Nashville is 9 hours drive for me.  I have no family here to travel with me or be with me during treatment.  My children live in CA.  I have researched and found that Stanford is about 25 miles from my son's house in CA.  I am thinking of seeking an opinion from both Stanford and Vandy, and possibly Ochsner to make a decision.

Also, my ENT prefers I have surgery.  He is not a proponent of Gamma Knife.  He said he doesn't like the idea that the tumor will always be there and could re-grow, and just thinks it best to have it out and be done with it. I have done some research and think I might prefer GK or CK.  I am a high school teacher and complete hearing loss in the ear would make it very difficult to teach.  I already have hearing loss in both left and right ears and wear 2 hearing aides.  I am also not comfortable with the idea of facial paralysis or eye problems being in the high school setting.  I am also afraid that with surgery I may have to be out too long.  I used up most of my sick leave due to my mother's long illness and passing.  I do have disability, but I know what a headache that will be.  I am also afraid that if I have complications after surgery...balance issues, etc, I may never be able to go back to teaching.  I have 11 years before retirement and would like to hold out.  I was hoping I could either watch and wait or have GK or CK and see how all goes.

And then there is insurance.  I know I should find the best care, but if my insurance does not cover I will have to settle for less.  I have state Blue Cross (for teachers) and I am sure anything in CA or Nashville will probably be out of network.  I don't know if this is negotiable or not.  I will be calling them on Monday to inquire.  I have a $500 in network deductible which I have already satisfied and $1000 out of network.  I know there is an out of pocket limit, but don't know how or if that works the same with out of network providers, since I know there are always ineligible fees.  I have long depleted my savings helping with my mother's nursing care needs.  Now, I am maxed out on credit due to medical bills and hearing aides, so really this is going to be a huge financial burden on a school teacher salary.  I have tried to get help for my hearing aides through vocational rehab services in my area and been turned down because I make more than $27k (that is ridiculous)!  I would probably like to choose Stanford for this reason.  I visit my son 2-3 times a year in CA and would not have to incur more travel expenses to another location for medical.

I know this seems long.  I am just trying to explain my situation entirely.  I would appreciate any advice I can get on any of these issues.  Thanks so much in advance for your help.
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

moe

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Re: New diagnosis - seeking info
« Reply #1 on: August 29, 2010, 11:09:27 am »
Tracey,
Hi! Thanks for sharing your story and Welcome :)

Your post is not too long,it's good to get it all out and you have a lot of different factors going on so the stress is on.

The GOOD thing is it is SMALL and you don't have to hurry and make a decision. Your research is probably correct that CK or GK would be a better option for many reasons. Or even "wait and watch."

Every doctor will have their own opinion and you will find that this is the hardest part, is trying to put the puzzle together and make a decision, with insurance in mind of course. The ENT's comment about surgery was flippant in my opinion especially for such a small tumor. Maybe he hasn't seen many of these.

There is a risk with all the procedures, of course. So continue to do your homework. Vent, ask questions, I'm sure people will chime in soon:)

Maureen

06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

nanramone

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Re: New diagnosis - seeking info
« Reply #2 on: August 29, 2010, 12:10:08 pm »
Hi Tracey - I'm glad you've decided to move past your physicians opinion and consider all options available so you can make the best decision for yourself. I originally went into this anti-radiation, and interestingly, 2 separate surgeons recommended radiation in my case, so I looked into it. I do not regret my decision to have GK. I agree that it is a personal decision to have the treatment we feel most comfortable with, and I do hope you continue to explore options...as a previous post suggests, including watch and wait.

I had a temporary increase in balance issues after GK, which now are subsiding. I was extremely exhausted, but the balance problems themselves did not keep me from doing most of my usual work. I have gone to vestibular therapy for several months and I'm sure it's helped. I have not had my hearing retested yet, and think I lost more hearing, and may eventually lose it all. It was explained that this tumor comes extremely close to the cochlea, which probably sustained some radiation damage. It is unlikely if I had surgery I would have retained any hearing, so I'll live with this and deal with it as time goes by.


Please write as much and as often as you like...this is a great place to come with your questions and concerns.

Nancy

Jim Scott

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Re: New diagnosis - seeking info
« Reply #3 on: August 29, 2010, 02:49:00 pm »
Hi, Tracey and welcome ~

Thanks for posting.  Along with the unwanted AN diagnosis, you do have quite a few difficulties to deal with.  We'll try to help.  

As you know, making the decision on treatment for the AN (surgery, radiation observation) is always a bit daunting and many AN patients have the kind of issues you mentioned, i.e. insurance restrictions, professional considerations, lack of help post-treatment and, as always, financial stresses.  You appear to have all of these to consider - but they are not necessarily insurmountable.  

There are lots of excellent doctors and facilities throughout the country as good as those on the west coast so it may not be necessary to go out of your insurance network to find a surgeon/radiation oncologist.    Of course, you'll have to do some research but I'm sure some of our members living in or around your area (Biloxi, MS) will offer some advice.

Although radiation treatment is non-invasive, with a much faster recovery time, it is not risk-free (or no one would ever have the surgery) and it requires life-long MRI scans because the tumor remains in your head, albeit, essentially 'dead'.  The removal surgery clearly carries risks and the recovery time can be lengthy for some - but the tumor is gone.  I underwent tumor de-bulking.  The neurosurgeon cut off the tumor's blood supply and basically 'gutted' the tumor, then I underwent radiation (FSR) to kill the tumor's DNA.  So far (4 years) so good.  My recovery was excellent from both the surgery and the radiation but of course, there are never any guarantees.  

Although your financial situation is tight, I would strongly advise you not scrimp when choosing a treatment/doctor/facility.  This is serious stuff and you don't want anyone performing surgery or radiation on you that isn't very experienced with acoustic neuromas, which are relatively rare.  'Shop' carefully and don't allow your finances to totally dictate your choices.   My 'out-of-pocket' limit was $2,500., after that, Blue Cross paid at 100%.  However, BC counts anything you owe for the AN procedure as 'out-of-pocket'.  I owed the hospital $2,500., but I didn't have $2,500. to give them so I set up a monthly payment plan with them.  My neurosurgeon was a caring, compassionate man and, in his words "didn't want me to worry about money".  He graciously agreed to accept whatever Blue Cross paid for his services ($28,000.) and I never received a bill from his office.  Some doctors will do that - and you may find one.  

Your AN is quite small, so you can probably have it observed ('watch-and-wait') for at least another six months.  That means an MRI scan every year.  It may simply stop growing - it happens.  If not, you'll have time to research and figure things out without rushing into anything.  Of course, in the final analysis, these are very personal decisions.  We can suggest and advise, but no more.  However, we're a support site and whatever you ultimately decide, we'll collectively support that decision so please keep us 'in the loop' as to your plans.  Thanks.

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.

leapyrtwins

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Re: New diagnosis - seeking info
« Reply #4 on: August 29, 2010, 03:22:48 pm »
Tracey -

you should contact the ANA for their informational brochures - they explain a lot about ANs and they are written in very easy to understand terms (not medical speak).

I know that Lori (lori67) gave you some advice on doctors in the Nashville area you should not hesitate to contact her.  

If you are looking to do CK, and want to travel to CA to be near family, Dr. Chang @ Stanford has an excellent reputation.  

Your ENT means well, but he's basically expresssing his personal preference for AN treatment.  I totally understand where he is coming from, because one of the main reasons I picked surgery (over radiation) was because I just wanted the damn tumor out of my head.  

However, AN treatment is a personal choice and you need to do what is right for YOU.  Radiation is a wonderful option for a lot of people - both CK and GK - and those who have chosen it have been very happy with their choice.  

Surgery was right for me, but that doesn't mean it's right for you.  Follow your "gut" - and your heart.  Educate yourself, weigh the pros and cons of each option and then make your decision.  We are here to support you in any way we can, regardless of the treatment choice you make.

Don't hesitate to ask us anything.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

CHD63

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Re: New diagnosis - seeking info
« Reply #5 on: August 29, 2010, 05:24:19 pm »
Tracey .....

Adding my welcome to this forum.  Glad you found us.  Most of us still posting after treatment are doing so in an effort to ease the fears of newly diagnosed people like yourself.  We are here to support and answer questions, as they related to our own experience.  For the most part, we are non-medical people so our replies are based on our personal experience, not medical expertise.  Most of us have researched and researched and in many cases have read more about acoustic neuromas than some doctors, who see very few ANs in the course of their medical practice.

By all means send for the ANA materials ..... they are very informative and reassuring.

If your AN seems to be stable and still classified in the normally slow growing group ..... or even, as Jim said, stopping growing ..... you have plenty of time to weigh all of the options for treatment.

What symptoms led you to seek testing and the resulting MRI?  If your symptoms are not changing, that is a good sign that you can probably wait and watch.

Best thoughts.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Cheryl R

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Re: New diagnosis - seeking info
« Reply #6 on: August 29, 2010, 06:23:18 pm »
Tracey, Your hearing issues you have also makes this a bit harder choice.     Some drs are for radiation when it is this situation and others are not.             You are somewhat similar to those of us with NF2 who have ANs on both sides.      Mid fossa surgery will save the hearing in some cases and depends on tumor location and the skill of a surgeon who does this on a very frequent basis.     House Ear in LA has a fairly good success rate.          I go to Univ of Iowa to a neurotologist who did wonders with my mid fossa on one side.          Mid fossa on the other side was not good due to some problems with the hearing pre op.   
   Good luck in what ever choice you make as it is harder when the hearing has a problem already.              In some cases one can also qualify for a cochlear implant so something to maybe ask about for your own case.                  Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

leapyrtwins

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Re: New diagnosis - seeking info
« Reply #7 on: August 29, 2010, 09:02:26 pm »
In some cases one can also qualify for a cochlear implant so something to maybe ask about for your own case.             

This would all depend on whether your hearing loss is sensorineural or conductive.   

I'd recommend dealing with the AN first, and then consulting with a neurotologist to see what your best options for hearing loss are.  ENTs usually aren't as well versed in hearing loss (and possible solutions) as neurotologists are.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

tgillesp

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Re: New diagnosis - seeking info
« Reply #8 on: August 29, 2010, 10:17:26 pm »
Thanks so much to all who have responded with their stories and advice.  Clarice, I went to an ENT in July of 09 originally because my children were complaining that I kept asking them to repeat themselves.  It seemed to have gotten worse on my plane ride to visit them.  Then I had tinnitus.  The audiologist checked my hearing and told me I needed 2 hearing aides.  I bought only one at the time due to financial difficulty.  I went back in June 2010 to have my hearing test repeated and get my second hearing aide and was told my hearing had changed again I had an ABR test and it was inconclusive.  This time he ordered the MRI and it  confirmed  the AN.  I am definitely feeling much calmer today, so again, thanks to all who have applied.   


Thanks t to all.
Tracey
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

Cheryl R

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Re: New diagnosis - seeking info
« Reply #9 on: August 30, 2010, 06:43:19 am »
Tracey, so is the hearing loss on both sides or just on one side?        Just curious as might make a difference in how it will or should go.                                    Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Lizard

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Re: New diagnosis - seeking info
« Reply #10 on: August 30, 2010, 08:25:32 am »
Tracey,
Your questions and concerns from above have been pretty well covered, but I only want to mention that you have to go with your gut.  The ENT does surgeries, and the GK or CK is done by specialists in that area.  They will both tell you their treatment is the best, based on size of tumor etc...if you're leaning toward radiation, then that's the way you should go. 
Good luck to you and welcome to the forum  :)
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

tgillesp

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Re: New diagnosis - seeking info
« Reply #11 on: August 30, 2010, 03:06:39 pm »
Cheryl,

My hearing loss is on both sides.  I lost hearing in left ear years ago and never had it checked because I heard fine in right ear.  I know it was dumb to not have it checked.  Only when I had hearing loss in right ear did it become so noticeable and I had to have it checked.  The AN was found on the left side, so I really don't know what the reason for the right is.  My ENT was orginally treating me for Meniere's but now says its probably not that.  The tinnitus is on the right side.  It's very confusing.
diagnosis 8/25/2010 5mm acoustic neuroma...second opinion by Dr. Chang says I have no tumor!!!

Cheryl R

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Re: New diagnosis - seeking info
« Reply #12 on: August 30, 2010, 03:37:42 pm »
Tracey,   It has to be very frustrating and I know what it is like all too well.       I am deaf on the right and then when the left sided tumor  started growing became close to all deaf.          I was using captioned tv and phone.        I waited to remove the tumor as long as could and then was going to be getting a cochlear implant.      I had my hearing improve after surgery which is not usual and did not need the CI.       It is not perfect but I get by,       I retired from nursing and have stayed retired, more from balance issues since now have no balance nerve on either side then the hearing.     Now just to hope I get no more ANs.    You would have to be around me a bit though to really know that have been thru this.                Hard to know what is best for your situitation.        House in LA would be a good option but know not good when ins plays a part.     They do do a free consultation if send your MRI.                   Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

leapyrtwins

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Re: New diagnosis - seeking info
« Reply #13 on: September 01, 2010, 11:45:12 am »
I have some amazing info from my neurotologist about a permanently implanted hearing aid that might or might not work for some of my fellow Forumites.

There are certain "rules" that must be met for you to be eligible.

I've had the info. for a week or two now.  Will try to find time to post it.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

pjb

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Re: New diagnosis - seeking info
« Reply #14 on: September 06, 2010, 05:17:54 pm »
Hi, sorry to hear about your diagnosis but in all the options for a AN there are good results and some not so good... I for one was advised by my regular doctors to have surgery so that you do not have to ever worry about it again mine was only 1 cm... Now a year later I find out that I have some residual and may possibly need radiation if it grows or hopefully with no blood supply to it it will die and then there are others who are doing fine. I have also read good things about radiation and the doctor at Stanford and it is close to your son so maybe that might be your answer in making a decision as to where to have it done. I am hoping you will be able not to have to worry about the insurance and they can work with you.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.