Pre-treatment symptoms

[sgerrard]

By the way, House seems to have lots of negative things to say about radiation options. Has anyone else struggled with the lack of long-term data on radiation outcomes? Although rare, the oncogenesis (turning the AN into cancer eventually) threat is very scary, esp. because I have these two small children and such. Any thoughts?

I generally prefer to talk to the plumber about my kitchen sink, and to the electrician about circuit breakers. In the same sense, I think it is better to talk to surgeons about surgery, and to radiation oncologists about radiation. In short, though, you should be more concerned with practical questions, like how well radiation would work out with your balance nerve issues, than with the low probability risks associated with radiation and surgery. They are there, but they are too small to spend any time on.

Steve

[Keeping Up]

Welcome Amy

You have a lot on your plate with such a little one.  We have several moms with youngins - I have four (as does Anissa), many with two, one due any day and one post-treatment due with twins in July.  Vonda had surgery with a really little one so she can offer great insight into that one (and the horse angle too!)

I also have a small tumor (see my siggie) - mine is entirely intracanicular, and am in watch & wait.  I was diagnosed in December so still a newbie.

I had very mild issues with the light-headedness/dizziness over the past few weeks - nothing that slowed me down too much, but did get me into a bit of a state (I was just getting comfortable with the watch & wait approach and the 2 months to go until my next MRI).  I ended back up at the ENT - who did a few tests involving pens, following objects, shaking my head for nystagmus (unusual eye movements - my definition, not at all technical).

He suggested that the dizziness/light-headedness is par for the course.  Interestingly, despite normally me being pretty laid back, he also brought up the role of anxiety and dizziness. While I don't think I am that anxiety ridden, I think I got myself going a bit with the dizziness - if I looked from paper to computer screen, I would get light-headed, walking up stairs got me dizzy and walking on the subway platform while the train whizzed by was (and still is) extremely difficult (I now stop and look away).  The ENT put me back on track - and while still light-headed, much improved from a week ago.  He explained blood acidity, capacity to carry oxygen, faster breathing when anxious ... all lead to dizziness.  I also read on the cyberknife forum yesterday that some doctors recommend very very small doses of valium to help with the vertigo common with ANs (that was new to me).

I am not at all suggesting your aren't suffering from some pretty extreme bouts of vertigo but given your plate - new babe, new diagnosis, dizzy/vertigo etc.  - I am not surprised you are faced with some symptoms. 

Give it some time, enjoy that little babe and see where you get to in a few weeks -hopefully time, a bit more sleep (which I have read from many escalates symptoms) and a lot more knowledge, and you feel a bit better.

Ann

PS - probably a bit personal, but do you get dizzy/suffer vertigo spells while breastfeeding (if that is your choice)?  Just curious, on my anxiety angle - breastfeeding naturally calms mothers - so given I am constantly curious on the impact these ANs have on our lives, I am just wondering if you have similar symptoms while nursing.   [When you are a mom of many, nursing doesn't involve much time on chairs with your feet up - it is amazing what you can accomplish while feeding - it isn't leisure time anymore!]

[amye]

Thanks everyone! What a wonderful supportive group of folks out there! I really appreciate you guys sharing your stories, knowledge, and wisdom with me.

I'll continue to research treatment options. In the mean time, I started a "scop patch" which has my symptoms under control and allowed me to go to work today. Hurray!

Amy

[amye]

Hi Ann;

Wow, you do have your hands full! Yes, I am breastfeeding - this is one of the primary reasons I want to wait awhile before treatment. I really want/need to feed my son for at least six months. And yes I'm very sleep deprived and still in that postpartum place hormonally. I've even wondered if the hormones haven't "set off" my vertigo problems in some way. Although I was only recently diagnosed, I had an MRI 13 months ago (for another symptom that turned out to be sinus-related) and when we went back and looked the AN was there -- the radiologist had missed it! But at least I have a baseline, and I've been told that the tumor has not changed since that time. So why the sudden symptoms? I guess these ANs can be tricky that way... 

It makes perfect sense that anxiety exacerbates vertigo, and I have certainly struggled with anxiety since being diagnosed. However, the vertigo has beens severe (including nystagmus and the works). I basically need to figure out how to manage it until I decide what to do...and get my baby out of his infancy at least.   

I've sent my MRI's to both House and Pittsburgh for opinions.  Hope to get some input from them this week.

Hope your dizziness gets better! There are several medications that help if it doesn't resolve on its own.

Amy

[MissMolly]

Hi Amy,

Welcome to the group.  I've found it to be very helpful.

I was just reading through your posts...  I have dizziness/lightheadedness as well.  Sometimes it comes on me in waves and I need to take a minute to get my bearings back.  It seems to be much worse when I'm tired (which it sounds like you are!).  During these times, it's especially difficult to get out of bed in the morning.  Sometimes I'm late for work because I just need a little extra time to pull myself together. 

Because of your new baby, you are most likely very tired.  Nursing takes a bit out of you as well (I nursed my daughter for 11 months!) and I remember feeling wiped out.  Especially during growth spurts.    

I also know how you don't want to 'deprive' a baby because of your own medical issues.  I had post partum issues with my daughter as well and was terrified that I would be hospitalized and would't be able to be with my little one.  I sincerely understand that feeling of not being a 'complete' mother while I was ill.  You definitely have my sympathy's with that one.  This is a great place to vent concerns and share experiences. 

Hope you are well and getting as much rest as you are able.  Take care,

MissMolly

Nowadays, I don't have a baby, but I do have kids at home.  I do try to get as much sleep as I possibly can.  I hope you can sneak in some days where you can 'veg' for the whole day.  Don't feel like you can't ask for help in caring for the baby.

[amye]

Thanks MissMolly for your kind words...really nice to know that someone understands. My babies are definitely keeping me going these days! Amazing how strong the maternal instincts are, huh?

Sounds like you were diagnosed right around the same time I was. How are you doing?

Cheers,
Amy

[MissMolly]

Hey there, Amy.  Sorry I didn't get back to you sooner.

Yes, it sounds like we were diagnosed at about the same time.  At first I felt like someone had taken the wind out of me.  Couldn't think straight for quite a few days.  Now I'm becoming more used to the idea.  I still think about it a lot.  I wake up in the morning to 'the dizzies' and my left eye is red (not closing while I'm sleeping?).  And then there's the ringing ringing ringing! 

I've decided that I have lots to be grateful for in my life:  great husband, good health insurance (no small thing!), a job that can accomodate my frequent fatigue and dizziness and, of course, that this tumor is benign.  A friend had a malignant tumor removed in January from her occipital lobe and now has another one on her spine.  Lots of surgeries, lots of radiation therapies.  And she has four children - three still at home.  So, I just wake up in the morning and quote Dory from "Finding Nemo"

"....just keep swimming, swimming.  All ya gotta do is swim, swim...."

Have a great day.  I hope you are doing well and enjoying that little bundle.

Molly

[Cheryl R]

Molly, are you putting gel in your eye when you go to bed?          If not, you can try some type of gel and just see if that is enough to help you.           If it is still red than maybe something like some saran wrap over it might help.             I just used a bit of gel to help hold it on but may need tape.        There are many different brands and what works for one may not work for another.     I am big on the Refresh ones.            All the AN annoyances get very frustrating.
                                                              Cheryl R

[leapyrtwins]

I generally prefer to talk to the plumber about my kitchen sink, and to the electrician about circuit breakers. In the same sense, I think it is better to talk to surgeons about surgery, and to radiation oncologists about radiation.

Hi, Amy and welcome.  Somehow I missed your first post. 

I'm with Steve on the radiation vs surgery question.  I was lucky enough to be referred to a neurotologist who treats ANs with goes both radiation (GK) and surgery.  And while he gave me the name of the radiation oncologist he does GK with and the neurosurgeon he does surgeries with so I could talk to them prior to making my decision, I decided not to call either one of them.  It was my theory that each doc would recommend the procedure he personally does. 

Lots of docs only treat ANs in one way, and IMO, if both radiation and surgery are options for you then you should investigate the pros and cons of each procedure.  I'm not sure if you've contacted the ANA yet about their literature, but if you haven't, I strongly suggest it.  It has a lot of very valuable information and it's written in easy to understand terms.  Being diagnosed with an AN can be overwhelming, the literature will help clarify things for you.

Good luck,

Jan 

[doinoc]

Hi Amy,  I'm new to this forum also but not new to the neuroma.  I was diagnosed in Jan of 2002 with a 7mmx4mm on the left.  My only symtoms were dizziness and unsteadiness...and ringing in the ear.  I thought it was an ear infection actually.  I've been in w/w mode until last year when my dr says its time to think about treatment. t's now 1.6 x .8 x .7cm.   I could have done treatment earlier but i decided to wait.  The only regret I have in doing that was in August of 2004 i woke up one morning with most of my hearing gone.  Steroid treatment did not reverse it at that point.  This might be something you want to factor in your thinking and talk to your dr about if hearing preservation is a goal at this point.  I have no hearing to save at this point.  I was told i wasn't a canidate for baha either. So i just wanted to share that it is possible to lose the hearing rapidly without warning.
I hope to interact much more with you and the rest of the family in the future
Deb

[leapyrtwins]

Deb -

mind if I ask who told you you aren't a candidate for the BAHA? and for what reason?

Just about anyone who is SSD is a BAHA candidate. 

Jan

[doinoc]

Hi Jan,  My dr did.  It  wasn't discussed in depth at all though....something about damage and the  kind of hearing loss accured. but i truely don't remember exactly what.  short term memory at times.  can be a real problem when trying to remember all the info we research. I guess you disagree with this?     For as long as i 've had this you would think that i would have it all figured out but I truely just had to forget about it for a while in order to help my husband get through difficult times.  Now its my turn.  Any imput would be helpful.
thanks
Deb

[leapyrtwins]

Deb -

does your doctor actually do BAHA implants?

I'm obviously not a doctor, but it is my understanding that anyone who is SSD (single-sided deaf) aka unilaterally deaf is a candidate for the BAHA regardless of how they became SSD - congenital, through AN surgery, accident, etc.  One of the few requirements is that you have serviceable hearing in your other ear.  There are two BAHA processors (tiny hearing aids) - the Divino for those with good hearing in the "normal" ear and the Intenso for those with not so good hearing in the "normal" ear.

If you are bilaterally deaf (deaf on both sides) you would be a candidate for a Cochlear implant.

You may want to check out Cochlear America's website (www.cochlearamericas.com) and go to "Find a Clinic" to see if there is someone in your area who does BAHA implants.  My neurotologist has done numerous BAHA surgeries and he's incredible, but I don't know where you live in relation to me (I'm just outside of Chicago).

A doc who does the BAHA implant can let you try the demo - which is basically the processor attached to an elastic headband to give you an idea of what it will sound like.  In my experience, the demo is amazing, but the real thing is even better.

I've been in love with my BAHA since the day I tried the demo and couldn't live without it.  While it's not like having my "normal" hearing back, IMO it's the next best thing.

Good luck,

Jan

[Tumbleweed]

Hi, Amy:

Sorry you are having vertigo. I know what that's like (more on that in a bit).

It is not at all unusual that you are having vertigo attacks with having only a small tumor. In fact, it is thought that vertigo occurs more often in patients whose tumors are small. Vertigo is most definitely a symptom of having an AN. Put bluntly: your doctor who said it wasn't related doesn't know what he's talking about. Find another doctor.

House isn't always down on radiation. Dr. Brackmann (House neurosurgeon) actually recommended that I get radiation treatment instead of surgical resection for my tumor. His reasoning was that I was more likely to have my hearing preserved with radiosurgery than with resection. (He concluded this after studying my MRI, audiogram and ABR -- auditory brainstem response -- test results.) I have nothing but deep respect for House Ear Clinic and for Dr. Brackmann for offering his unbiased opinion.

Studies show there is no more risk of getting cancer from radiation treatments than the risk to the general population of getting cancer. Opinions to the contrary are derived from decades-old research data obtained back when massive doses of radiation were used to control ANs -- and with much less accurate machinery, I might add.

Now my story, in brief: I had vertigo so bad that it sent me to the hospital for rehydration. I had to hold onto walls to stand up and walk, for two weeks. My vertigo lasted -- non-stop but with decreasing severity -- for months and was accompanied my oscillopsia (bouncing vision when I walked, kinda like what you'd see through a camera's viewfinder while walking). But eventually the vertigo and oscillopsia went completely away as my brain began to adapt to and ignore the abberrant balance signals coming from my damaged vestibular nerve on my AN side. Now I have a constant, usually mild sense of disequilibrium that doesn't stop me from having an active lifestyle (indeed, my active lifestyle helps my balance).

My point is that your balance will improve over time. Life gets better. And radiation is a viable option, despite the opinions of some neurosurgeons who don't practice this form of therapy and haven't kept up on the latest findings supporting its use and success rate.

May you find peace and healing along your journey, Amy. We'll be here with you every step of the way.

Best wishes,
TW

[sgerrard]

Tumbleweed and Amy,

I don't think I was aware that Tumbleweed had that much vertigo going on prior to treatment - or I forgot. It is actually quite encouraging to hear that it did settle down in time, either the other side compensating, or the AN finishing what it started, or some of both. I am curious, Tumbleweed, whether the vertigo subsided before treatment? Does it make sense to wait for it to settle down again before you get radiation? Anyway, it is an encouraging result that you can do radiation even when there is a significant balance nerve issue.

Steve