New diagnosis and anxious about the wait to be seen. How long is ok to wait?

[crayola64]

I have a hearing loss, got my MRI and results on January 22.  I have an AN 1.9 x 1.2 x .8.    Unfortunately the neurosurgeon in our town is unavailable due to serious illness.  My ENT office sent my records and MRI to Pittsburgh sometime during the week of January 26th.  I called them on February 6th but they still haven't heard anything.  I know it takes awhile to get the evaluation appointment and then even longer to get what ever treatment scheduled.  Does anyone have any idea about the time frame?

 I would feel better just knowing a neurosurgeon looked at the MRI and having an appointment date to look forward to.  I'm so anxious I'm having trouble processing information when I try to research about this.  And I'm having trouble sleeping.  Keep worrying about future.  Wonder if I'll miss my daughter's college graduation in May.  Can't seem to turn off the racing thoughts and worry.

I just wish I had an appointment card in my hand.  Any information on other people's wait times would sure be appreciated.

[CHD63]

Hi crayola64 and welcome to this forum .....

While I am sorry you have been diagnosed with an acoustic neuroma, I am glad you found the anausa.org and this discussion forum.  You will fine much accurate information here and many supportive friends who know exactly what you are going through right now!

At 1.9 cm, you should have some time to do plenty of research and get more than one opinion regarding treatment.  Since ANs are relatively rare, we strongly encourage patients to seek out medical treatment from physicians with vast experience treating specifically acoustic neuromas.

My local neurosurgeon frankly admits that acoustic neuromas are not within his specialty so I went out of state for treatment with excellent results.

Many thoughts and prayers as you walk through this decision-making phase.

Clarice

[SueLL]

Hi Crayola64 - As Clarice mentions, ANs are typically slow-growing so you have some time to consider your options.  I gathered my medical records and contacted Pittsburgh directly.  Dr Lunsford's office was very quick to respond - I sent my materials on June 11 from Colorado and heard from his office on June 18.  I was told that he reviews records once a week, so maybe I hit a good day.  If the records are not in Pittsburgh you might need to bother your local doctor or MRI center.

There should be no reason to miss a special family event in May.  If you do opt for Gamma Knife surgery, recovery is quick; it's the results that are slow.  I was tired but pretty much resumed normal activities the next day.  While my symptoms vary on a daily basis and can be frustrating, none of them keep me from doing most activities.

Good luck!

[ANGuy]

Your anxiety is justified in that this is serious business.  It's not like you are over-reacting or being a "drama queen".  Also, having to wait like you have for some concrete info is definitely nerve-racking.  What I'm trying to say is that your current state of mind is "normal" considering your circumstances.

That said, you have plenty of time to sort things out.  If you waited a year for treatment, it wouldn't be unusual.

Maybe if you gave some specifics as to where you are, members could direct you to other sources of treatment.  You will want to get several opinions anyway, so you could get the ball rolling with others while you wait for the info to come back.

Also, your anxiety level will go down as you get more accustomed to the idea that you have this "thing", that you aren't the only one, and that good results from treatment are more common than complications.

I'm sorry you had to join this cadre of ours.

[Echo]

Welcome Crayola64,

I think I can very safely tell you to calm down, take a breath and try, hard as it seems, to relax.  You have time on your side at the moment.  AN's are very slow growing in the majority of cases but they have been known to take on spurts occasionally.  It's fairly routine for a neurosurgeon to examine your initial MRI, tell you what your treatment options are, and send you home requesting you come back in 6 months for another MRI.  Waiting 6 months for your next MRI gives the neurosurgeon an idea on whether or not your AN is growing.  This allows you time to do your research and become familiar with your options. 

My ENT booked me for my first MRI that diagnosed my AN.  I had a 3 month wait to see a neurosurgeon, followed by 9 more months of additional consults and tests for balance and hearing issues.  In my case I had the option of surgery or radiation and just couldn't make up my mind.  At the end of my first year my AN had grown from 1.8 to 2.4cm (mine took a spurt!) and I finally decided on Gamma Knife.  I then had a 2.5 month wait for treatment. 

I hope this helps you put the timing in perspective.  You should certainly be able to attend your daughter's graduation in May.  I remember feeling much like you after my diagnosis and found it easier to cope by taking many breaks and returning to read and do my research as I calmed down.  The more I learned, the easier the research became.  Discovering you have an AN, can be completely overwhelming, but it does get better and there are many of us who have had great success with either surgery or radiation.

One last note, the fact that your MRI has been sent to Pittsburgh, should help calm you as well. They have a fabulous reputation and you will be in good hands!

Best of luck,
Cathie

[arizonajack]

I'm also here to tell you not to sweat it.

I discovered a major loss of hearing in December 2011. After going to a local doctor where I got nowhere I reported it to my primary at the VA in January 2012. She referred me to an audiologist. Took a month to get that appointment. She ordered hearing aids and referred me to ENT. Took another month to get the appointment with the ENT. So, in March 2012 I got my hearing aids and a visit with ENT who had no idea what was happening and agreed to an MRI. That took another month to set up. April 2012 was my first MRI and it showed an Acoustic Neuroma of 3mm x 4mm x 9mm. I learned that they tend to grow slowly or not at all and since my hearing was already gone I opted for Watch and Wait. October was my next MRI and the tumor had grown by 20%. The VA farms out major treatment so that took another month to get approval. In November I had consults with a neurosurgeon, a neurotologist and a radiologist at Barrow Neurological Institute in Phoenix. I was originally scheduled for Gamma Knife in December 2012 but the 3 doctors had a scheduling issue so my Gamma Knife finally happened in January 2013 about 13 months after my initial symptoms.

My point is that if your situation takes a few months you're ahead of the game.

[rupert]

Do you know what doctor they sent the information too?  UPMC has many doctors and departments.  If you knew which they sent it to you could follow up directly.  I know some who were interested in GK but sent their MRI to the wrong department and there was some confusion.

[crayola64]

Thank you so much to everyone that replied and for the prayers Clarice.  It was very helpful to hear from real people that have gone through this. 

Thank you ANGuy for telling me that my anxiety is justified.  Not only was I having a lot of anxiety but I was beating myself up about it.  Telling myself,  it's not cancer and I shouldn't be so worried...etc.

I seem to be tolerating the hearing loss, tinnitus, and slight balance issues pretty well.  I think I'm a bit of a control freak and wanted to have a plan to get rid of this icky thing in my head yesterday.  I was surprised how long some of you have had to wait for treatment but it did help me to put my situation in perspective.  Arizonajack, you must have nerves of steel. 

Thank you SueLL  and Cathie about the good word about Pittsburgh.  Very comforting.

It's only been 2 and a half weeks since I was diagnosed.  Guess I shouldn't have blamed the hearing loss on old age 6 months ago.  Hindsight is 20 20. 

I'm going to take your advice rupert and make sure the MRI did indeed get to the proper department.  Then I'm going to settle down, deep breathe, and do some more research and keep living my life. I'll be back for support though I'm sure.  Thank you all so much.