ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: tizzautumn on May 09, 2011, 02:14:25 pm

Title: Just found out I have a mass.
Post by: tizzautumn on May 09, 2011, 02:14:25 pm
Hi I'm Autumn.  I just found out I have a mass and they believe it is AN.  I go to the doctor in 3 weeks.  I went to Saint Louis University Hospital, but I plan to contatc Barnes Jewish, which is number 10 in the country for ENT and Neurosurgery.  They have the GK.  I was told that it is large, but I honestly don't have any big symptoms, which I don't understand.  I have tinnitus, but it is not a ringing, it is more like a windy tunnel sound.  Other than that I have a hard time projecting my voice very loud.  And that is pretty much it.  All of my motor functions are fine and my hearing is still the same.  I don't have any facial paralysis problems.  I am 29 and I am just very upset.  I am so nervous and scared about surgery.  They said it was 4cm by 1cm.  I am not sure if that is 100% correct since that was just from a CT and I forgot to mention it after the MRI.  The skull base surgeon said I could probably watch and wait, but how is that possible if it is so big?  i don't think I can handle that, anyway.  I'm nervous and I would rather not wait until I have horrible symptoms before I take action, especially since I am still pretty young and could recover from surgery.  I am just SCARED and upset and I don't want to have horrible problems after surgery.   :'( I am praying and trying to be positive.  I don't know what else to do.  Right now I am home alone and torturing myself with worse case scenarios.  Help!
Title: Re: Just found out I have a mass.
Post by: Jim Scott on May 09, 2011, 02:46:07 pm
Hi, Autumn ~

I'm sorry you're so upset but I can understand why.  Any time a doctor tells you a CT scan or MRI showed 'a mass', it is scary.  As for not having symptoms, I was diagnosed with a 4.5 cm AN and only developed noticeable symptoms about 6 months or so prior to the MRI confirming the AN diagnosis, so this is not unknown.  For some reason, smaller tumors tend to cause more symptoms.  Go figure.  Assuming the doctors confirm that the 'mass' is an acoustic neuroma, first, be thankful for the fact that it is not a malignant tumor and then start scheduling consultations with doctors in your area that have a lot of experience with AN surgery. That experience will benefit you in many ways, the most important being that your odds for a complication-free surgery are somewhat enhanced, if not guaranteed.  I underwent debulking surgery for my large AN and was blessed to not suffer any real post-op problems.  Later (planned) radiation (FSR) was also absent of complications.  The AN eventually died and I'm fine, now.  I trust that you will be too.  Just take a few deep breaths, focus on taking this in steps and always envision a good outcome.  We're here to inform, advise and, most of all, to support you, Autumn. Please stay connected and keep us informed because we care.  Thanks.

Title: Re: Just found out I have a mass.
Post by: tizzautumn on May 09, 2011, 04:38:03 pm
Thank you, Jim.  I have been reading here for a couple hours and honestly it all looks like bad news.  Dizziness, paralysis and hearing loss seem to be pretty common.  That is very hard to think about.  I don't know how I am going to live with this.  I don't want to give in to depression.  I just don't know what to do.
Title: Re: Just found out I have a mass.
Post by: tizzautumn on May 09, 2011, 04:39:57 pm
Does anyone have success stories with little to no side effects?  Jim, what is life like for you?
Title: Re: Just found out I have a mass.
Post by: lori67 on May 09, 2011, 05:21:22 pm
Hi Autumn and welcome.

I consider myself a success story.  Others may not see it that way.  I am deaf in my right ear and have some facial nerve paralysis.  I don't suffer from dizziness or balance problems.

Some people might look at the issues that I do have as a result of my AN and surgery and think "That's success??".  I realize how lucky I am in many respects - it was not a cancerous tumor, it was removed completely, my side effects are, in my opinion, minor.  I am grateful for talented doctors who made it possible for me to watch my children grow up and to be active and involved in their lives.  I have met so many amazing people thru this forum that I would not have met otherwise. I am the mother of 4 kids.  I volunteer at my kids school and at a bunch of other community organizations.  I am able to do everything I was able to do before my surgery - I spend a lot of time at the beach, I take a lot of road trips, I ride my bike, etc.

I'm not going to say I haven't had my down days and felt sorry for myself, but I remind myself of all that I have - and that definitely outweighs what I've lost.
I know it's easy for me to say "don't worry about it", but try not to get too worked up until you have a definitive diagnosis.  When you do, you can educate yourself and make a treatment decision that's right for you.  If you spend too much time worrying about the "what if's", you'll drive yourself crazy.

I came across a quote recently that I keep posted in a very prominent place:  " I resolve not to cross bridges before I get to them, for no one has yet to accomplish this."  Fr. Flavian Walsh, OFM.

There are a lot of people here to answer your questions and support you. Like Jim said, take a deep breath.  You'll get through this.
Title: Re: Just found out I have a mass.
Post by: JAndrews on May 09, 2011, 05:42:04 pm
I am a success story:) I am fine. Deaf in right ear, tinnitus..more like head noise that varies in tones. No balance issues or headaches. My life is normal. The only real big change is the hearing and not being able to locate sound. The tinnitus took sometime to get used to..but as time goes on it has just become part of my life. I work full time as a nurse and have 2 small children. I went to House in LA with Brackmann and Schwartz. I had a large tumor and they got it all out. I know exactly how you feel and how scared you are...its a road that wasn't a fun travel..but I'm ok:) you will be ok too!!!
Title: Re: Just found out I have a mass.
Post by: leapyrtwins on May 09, 2011, 07:31:52 pm
Autumn -

I am a success story.  My AN was surgically removed almost 4 years ago and my only permanent side effect is SSD (single-sided deafness). 

Things post op were a little rough - which is usual.  I had double vision and slight facial paralysis for a day or two.  I also had dizziness, nausea, vomiting, dry eye and dry mouth - and for a time, metallic mouth.  My balance was off, but adjusted with time.

I've worn a BAHA for almost 3 years now and it's helped with the SSD a lot.

Best of luck on your AN Journey,

Title: Re: Just found out I have a mass.
Post by: Tod on May 09, 2011, 08:23:07 pm
Hi Autumn, take some deep breaths and try to relax a bit. My story is one of the outliers. I had a largish tumor (think golf ball) pressing against my brainstem. The only notceable symptoms I had was the loss of hearing left side. I ended up having surgery at the local med school (which is what I would have done if I was still working at Saint Louis U). My surgery was about 32 hours long because the little bugger was deep down and had a really good blood supply (still does actually because a bit of Bob remains behind). Because of the length of the surgery I was in ICU for two weeks and intubated for the first six days. I ended up at home recovering for another 10 weeks before going back to work.

Yes, I suffered from some deficits: facial paralysis (mostly gone by the time I went back to work), difficulties swallowing, and a loss of my voice. Plus the typical balance problems and weakness.

15 months later I am doing quite well. I just came in from running two miles with my two big dogs. Two weeks ago I backpacked 43 miles with some of my scouts. Things are a bit more difficult than they were a few years ago, but each day is better.

Life is exceedingly good.

All of this is scary to you, but it is quite survivable.

Title: Re: Just found out I have a mass.
Post by: Jim Scott on May 10, 2011, 02:01:10 pm
Does anyone have success stories with little to no side effects?  Jim, what is life like for you?

Autumn ~

These forums are full of success stories (3 have been posted here, already).  You have to bear in mind that this is a support site for AN patients and our forums will often seem to be over-represented by AN patients that are experiencing problems following surgery or radiation and are seeking advice, information and support.  We're happy to be able to offer all of those.  The fact that our members are almost all AN patients makes their comments a lot more credible to someone, like you, newly diagnosed.  However, even though AN surgery and/or irradiation certainly does carry some risks, AN treatment is not automatically going to leave you with intractable problems.  In fact, most post-op issues are usually temporary or can be surmounted with therapy - and time.  We have some marvelous folks posting here who came out of surgery with facial paralysis and other problems but over time, regained facial normality and overcame other deficits. There is always a light at the end of the tunnel. 

That stated, I can tell you that, as we like to put it: 'life is good'.  I'm pretty much the same guy I was prior to my AN diagnosis/surgery/radiation almost 5 years ago.  At the time of my diagnosis, I was SSD (the price of procrastination).  The surgery and later radiation didn't change that, nor did I expect it too.  I cope fairly well with it but, admittedly, it is an impediment.  However, the BAHA remains a viable alternative if and when I chose to avail myself of the technology.  So far, I'm good.  I had mild tinnitus prior to the surgery and that didn't change one iota, for better or worse.  I did not experience any facial paralysis post-op so that was not an issue for me.  No post-op nausea, either.  I do experience a slight 'dry eye' (on the 'AN side' - my left) once in awhile but don't require eye drops.  Blinking rapidly usually quells it.  I have a tiny 'numb' spot on the left side of my tongue but it doesn't affrect my sense of taste and so, I can ignore it.  My balance is quite serviceable....unless I stumble (very rare).  Then, I find that keeping my balance (once lost) without holding onto something is very difficult.  This almost never happens so it's hardly a problem.  I can climb stairs without using or needing a handrail and even escalators are not a challenge, although they were for a few months following my surgery.   I was driving within 2 weeks of my AN surgery and never found it to be a problem.  Turning my head to change lanes on the highway was initially a bit difficult but practice resolved it within days.  I will admit that my overall stamina is less than it once was but I'm in my late 60's and I assume this is a a factor.  Overall, I'm doing well.  Although retired, I'm far from sedentary, have obligations (church deacon, among others)  and consider myself 'active'.  Like Jan and others, I enjoyed a complication-free surgery and radiation (FSR).  I know that I'm blessed but I'm not some 'special case'.  Others have had a similar experience or had some post-op issues that resolved in a reasonable amount of time and are doing fine, now.  Folks like me remain active on the ANA website forums partly as a resource for newly diagnosed and stressed AN patients like you, Autumn.  We want to help you by serving as examples of the possibility of good outcomes from AN surgery (and/or radiation) and answer questions about our AN experience that may give you more optimism about your situation.   AN surgery is serious and does pose some risks but it isn't a dead end or all gloom-and-doom.  We often write of 'life after an acoustic neuroma'.  Some of our members are extremely physically active with marathons and such.  I'm not that ambitious (or that young) but they are also examples of how AN patients can get through the experience and thrive, as I'm hopeful you will.