Newly diagnosed and choosing to watch & wait

[Julie in TX]

I never thought I would be searching for a support group.  I am in the health field and have recommended such groups as this to many families over the years.  My "Sha ne ne" as I like to call it was discovered last month due to random symptoms of vertigo and ringing in the ears.  What sent me into the PCP was arm pain that is still undiagnosed...... That's for another day/time.

After multiple tests and several specialists, a neurologist did an MRI just make sure nothing was there.  We were both suprised!  He referred me to a private neurosurgeon which seemed to push radiation.  I am fortunate to work in the Texas Medical Center in Houston, TX and have many contacts at world reknown institutions.  I had the pleasure of seeing the team at MD Anderson who really took the time to explain to me what the pros and cons of are of the three options:  watch and wait, radiation, and surgery.  They addressed these pros and cons not just based on research but based on my circumstances such as age, symptoms, being the mother of three young children, and in a full-time high stressed career.  My husband and I are choosing to wait for now.  I will have my first follow-up in February which includes a repeat MRI, repeat hearing screen, and balance tests. 

As many on this site have described, waiting is somewhat unnerving.  Part of me just wants it out but I also do not want to make any rushed decisions.  So we wait and are hypersensitive to any new sensations!

Well, I didn't pose any questions but it sure feels good to write this out.  Thank you for the support and the information!   

[Kaybo]

Hi Julie~
I am from Texas also - way in the Panhandle, but come to Houston quite often as almost all of my hubby's family live there.  If you would like to talk on the phone anytime or meet up for coffee when I'm there (Dec. 19-27), let me know!!  I actually met my hubby in Houston and then later had surgery there!

K

[leapyrtwins]

Hi, Julie.  Welcome to the forum 

Waiting is somewhat unnerving and it's not for everyone, but I think your plan of another MRI in February and being hypersensitive to any new sensations is a good one.

It also sounds like you have a great groups of doctors.

It probably goes without saying, but we're here for anything you need.  If you have questions, want to vent, or just share your experience, you'll find we're here for you. 

Good luck.

Jan

[sgerrard]

Hi Julie,

You can pass the time by thinking of it as watch and wait and research, so you can feel more ready to pick a treatment when the time comes.

Glad you found the site and are finding it useful, even if you don't have any questions yet. Welcome.

Steve

[Omaschwannoma]

Welcome--I think!?  Sorry for your dx, but we understand and will support any decision you make.  Do keep "eye" on any increasing symptoms and like Jan said having MR in Feb is good decision! 

Cheers and hoping Feb's MR shows no growth!

[Rivergirl]

Julie,
Sorry you have an AN and joined our elite club. Watching and waiting is not as easy as it seems.  I think the Drs. want us to figure out what we want to do, and then go forward.  It is nice to have time to go over options, think, get other opinions and figure out what is best treatment for you.  I am not having such an easy time with watch and wait due to my symptoms but each day I march forward and will wait another 6 months for the next MRI.  I did like the opinion from the House Ear Clinic, they are really precise to the point and very helpful.  Best of luck with your decisions and research.

[texsooner]

Hi Julie,

Like others have said, sorry about your AN, but you'll be happy you found this group. I live in the Houston area and had successful surgery to remove my AN at the Medical Center in August. I personally have learned a lot from the people on the forum. My email contact is in my profile, so feel free to contact me anytime.

Patrick

[Tisha]

Hi Julie,

I just found out about mine 2 weeks ago.  Watch and wait is unnerving, but it is wonderful to be able to have the ability to have some time to do plenty of research.  If the decision ever comes to be made to not w&w, at least you will have an idea of the statistics, the doctor you want, all questions answered as much as you can.  That's what I'm doing.  I'm also having monthly audiology tests to make sure my hearing hasn't decreased in AN ear (still a feeling of fullness).  Hope everything works out well.

Tisha

[Mickey]

I`ve been waiting and watching for around a year and a half now with no change nad 3 mri`s. I`m a lot older than you (60) but have same size AN .12x.06. They say the older you are the better chance AN has come to its growth limit. I think you have made a good choice to monitor and act if necessary especially when your symptoms are minimal. In any case you seem to be in good hands. Wishing you the best! Mickey

[Nancy Drew]

Hi Julie,

I was in W&W mode for quite a while (note my signature).  My AN was found by accident, and it wasn't causing any problems at the time.  I decided to W&W with routine MRIs to monitor growth.  My criteria for treatment was if the AN started growing or if at any time I started having bothersome symptoms.  My criteria was met in May when the AN started growing, and I started having some symptoms that were bothering me.  My AN doc said my AN was a candidate for W&W or treatment.....my decision.  However, my AN doctor and the majority of the doctors I saw for second opinions said these ANs are easier to treat when they are small.  Of course location can be a factor, also.  I did a lot of soul searching, did a ton of research, consulted this board, and I finally decided to go with GK (GK was just a personal decision on my part).  I had GK on Oct. 21st so I am a "newbie postie".  I don't know what lies ahead, but I think I made the right decision for me.  I have maintained my hearing, and I have only encountered a few bumps in the road so far.  Nothing major.  On steroids for a couple of days now to deal with some swelling.  People here said you will get to a "gut" feeling about what to do, and I believe this is true because it finally happened to be.  The AN journey is a difficult one.  Sounds like you have access to an excellent medical facility which is great.  It is important to find a doctor you feel comfortable with and doing the research is worth it.  Best wishes, and it looks like there are a lot of TX folks to guide you.  I found some fellow ANers here in Colorado, and they have been a great support.  One person lead me to my current doctor, and the others took different routes due to their individual situations.  I have also found many other folks here on the board who I Personal Message, and they have really helped me a lot also.  Best wishes to you.  It is "normal" to feel scared and confused.........just to let you know.

Nancy

[kimbo]

Hi Julie

Welcome -  like you I couldn't believe I would need a support group for this condition known as a Acoustic Neuroma.  Initially I thought, have surgery and lets get on with it until the research showed the implications of invasive therapy and the possible effects on quality of life after treatment.   I decided to choose W&W when diagnosed in Aug 08 because my AN is small and my symptoms are quite tolerable.  I cannot see the point at this stage of going through major surgery until it is absolutely neccessary.  I do struggle a bit on a daily basis becasuse the AN has comsumed my thought processes over the past few months but emotionally I am much better, mainly because of the forum and the knowledge I have gained.  I have come to realise that when treatment is inevitable I know (because of forum) that I will come through this and adjust and I will have the support from the forum and my family.  I have noticed some changes since diagnosis like feeling woozy, I have become hypersensitive to certain noises and and my tinnitus seems to change frequency, my hearing is pretty poor but overall I still feel pretty good.  I don't know whether the symptoms have been there for awhile and the only reason I have noticed them is because now I am more aware of what can happen. 

Take care   

Kimbo

[Jim Scott]

Welcome Julie in Texas!

Although a diagnosis of acoustic neuroma is not exactly a cause for celebration, I'm glad you've found this site and took the time to register as a member and post your message.

As a health care professional, you clearly have your situation in hand with good doctors and an understanding of your options.  That is a plus for you because many newly diagnosed AN patients are frightened and confused by the seemingly complicated aspects of the diagnosis and the often conflicting opinions of doctors regarding the most efficacious treatment. 

Observation ('Watch-and-Wait') is a very sensible option for many and with your now-heightened sensitivity to any manifestations of symptoms from the tumor as well as frequent MRI scans to monitor it's possible growth, you appear to be choosing the best option for your specific situation, considering your relative youth, status as a parent, career obligations, etc. 

Although, initially, you have no questions, that may change in the future.  If so, we're here to inform and advise from a practical standpoint based on our collective experience with this comparatively rare tumor.   

Please stay connected here and use the site and forums as another resource, remembering that even though we're not physicians, the folks here have first-hand knowledge about ANs and the kind of empathy few can realistically offer.  We're happy to share whatever we can, as you may need it.  I wish you a fun holiday season and no growth showing on the February MRI. 

Jim

[Julie in TX]

Thank you, everyone for your support and encouragement!  I appreciate the personal stories and the fact that no one pushes their decisions upon us "newbies." 

I look forward to trying to catch up with some of the folks from Texas. 

THANK YOU ALL FOR SUCH QUICK RESPONSES!!

[Brendalu]

Welcome, Julie!

I live south of Houston and had surgery in Clear Lake three years ago.  We have a great support group for the Houston area.  We met in d***inson this month and will be in North Houston I think in February.  We try to move it around a bit because this is such a huge area and we don't want it to always be too far for anyone.
Sorry you had to find our group this way, but welcome!
I had my breast cancer treatmentat MD Anderson twenty two years ago......great place.

Kaybo,

IM, PM or email me, I would love to get to meet you when you are here in December and Julie too!

Brenda

[Sheryl]

Hi Julie - I may be the longest "wait and watcher" - just celebrating (if you can call it that) my 7th year.  My tumor is on the 9th cranial nerve and is somewhat like an acoustic neuroma only it would have other symptoms - swallowing problems, gag reflex, and hoarseness - all of which have not caused any problem.  It was found incidentally after a bad headache (which ended up due to a blood pressure problem) in November of 2001, and I was devastated.  I was working in a hospital and showed my boss (a pathologist) the film.  He introduced me to a wonderful neuroradiologist and he has been extremely helpful ever since. In the seven years, I've only experienced 2 to 3 mm of growth which is very minimal.   In fact during the ensuing years my husband also developed a benign brain tumor called a "meningioma" - he had surgery, then had regrowth, and was treated with CyberKnife a year ago.  Trying to balance a full plate, I developed breast cancer on top of everything else and am now a 4-1/2 year survivor. 

I think taking a wait and watch approach is not for everyone but in your case, it makes sense to wait until your first MRI followup. 

As with everyone else on this board, my thoughts and prayers are with you and do keep us informed.
Sheryl