Newly diagnosed with AN

[MVD]

I just left the hospital after meeting with a surgeon at Mass Eye and Ear and discussing my options.  It's December 23rd, and this whole thing is placing a damper on Christmas (especially since this is my son's first Christmas).  I feel like I have three really bad options.  I can continue experiencing daily vertigo episodes, decrease hearing, fullness of my right ear and ringing. OR I can undergo a complicated surgical procedure where I have a 50/50 chance of losing all the hearing in my right ear along with a multitude of side effects.  OR I can go through the radiation treatment and hope that it takes care of the problem and risk having facial nerve damage. 

My tumor is small at 5mm and was found by a MRI scan after my complaints of vertigo and rining in the ear.  I am 34 years old and in good health.  I am trying to weigh my options and make a decision.  I am VERY concern about facial nerve damage, more so than hearing loss.   I am also worried that I may have a vertigo episode while holding my baby or driving.

I guess I feel like I need to have the surgery, but I just don't know when I want to do it.  How long should I watch and wait for? Does that increase my risk of having other awful symptoms or side effects?

Any thoughts are appreciated.

[TJ]

I know it is hard but you really need to slow down and get all the facts.  Your AN is still very small at 5 mm, that is when my was found.  They are very slow growing it took 3 years for mine to double in size.  Since it is very small you are an excellent candidate for CyberKnife Radiation.  It is very accurate and there is an 85% chance of saving your hearing.  If you have surgery it is about 50%.  Surgery can have an effect on facial nerves, but I have not heard that with Cyberkife. Of course it depends on where the AN is.

I had Cyberkife one month ago, the AN had grown to 1CM.  I have not had any serious side effects yet.  What you should do it get all the facts and made the correct decesion for you.  Remember you have time to do your research.

Best of Luck

TJ

[Mark241]

Hello, sorry about you AN, and of course just before Christmas. As mentioned, at 5mm you have options, but I share your concern with the symptoms your experiencing. My An was large 3.5cm and radiation was not a real option, and I'm watching and waiting on others I have, so I was happy to have it removed. I personally didnt' have any permanent facial issues, but others' have. I'm sure you have surfed this great site, and have seen that each AN, and each of us are different when it comes to the outcome of the surgery. My advise is to send your films to at least two other surgens who have a specialty with AN, and cyberknife. I'm sure others' here can comment on Mass Eye and Ear, or give you information in your area. Try to enjoy your Christmas with your family, and remember your not alone in this.

[kiwi]

Hi MVD

Sorry to hear about your AN diagnosis especially at this time of year. At 5mm it is small and at least you have 3 options.  Take your time to make an informed decision and read other peoples stories on this site.  They are all very informative and most people on here have their own unique story.  I was diagnosed before xmas last year and it put a dampener on the day but when I look back now its been a hard road but not the end of the world.

Jacqui

[leapyrtwins]

MVD -

hi and welcome to the Forum.

Being diagnosed with an Acoustic Neuroma is certainly frightening (I know I've been there) but it's not the end of the world.  Treatment options, in the majority of the cases, aren't as bad as you imagine.  And another part of the good news is that 99.9% of ANs are benign. 

I had surgery and my outcome was excellent.  I am SSD (single sided deaf) in my AN ear, but there are options for that.  I chose a BAHA and am very happy with it.

Treatment option is a very personal decision, but most of us here will tell you that we are happy with our choice whether it was surgery or radiation or watch & wait.

You should contact the ANA for their informational brochures - free for the asking and very informative.  You should also see if there is a local support group in your area.

It's been a long time since I made my decision, but I don't think that facial nerve damage is a side-effect of radiation. From what I recall, you run a bigger risk of facial nerve damage with surgery.  (Someone please correct me if I'm wrong). 

Jan

[Mickey]

Hi MVD! We all here understand what your going thru. I have a .12x.06 AN which has been with me only god knows how long and have been W+W 3 1/2 years. Your a young girl with a very small AN which is bothersome but have the luxury of taking your time in deciding what course of action to take. Most important is to do your own research, and pick professionals you want to be with. There are many great doctors. As far as this whole situation your going to be fine! Its Christmas eve right now so please take time out to enjoy yourself, family and holidays and get back to this after New Years (one week away). Peace + Love, Mickey P.S. Just take it easy

[james e]

Zofran is a great drug for vertigo. There is a generic that is affordable, and it put a stop to my vertigo. It is a safe drug and cancer patients use it while being treated. Good stuff!

[lori67]

Hi, welcome and Merry Christmas!

I think Jan is right.  The way I understand it, there is more risk of facial nerve damage from surgery than from radiation.  The facial nerve does not like being messed with, so even if they don't have to sever it during the surgery, sometimes just having to move it out of the way is enough to make it not work properly.  This is something you should discuss with your doctor.  You have plenty of time to talk to as many doctors and research all your options until you can comfortably decide on what treatment is right for you.

The youngest of my 4 kids was 9 months old when I had my surgery.  I was worried about how being deaf in one ear or having facial nerve damage would effect them.  Turns out they don't care.  I'm still mom and that's all they care about.  I was worried about how others would react to my looking different than I did before surgery.  Guess what?  They don't care either.  I'm still "me" on the inside and that's what matters.   

I agree with Mickey - put this on the back burner for now.  Your son will only have one "First Christmas".  Enjoy him and enjoy yourself and your family.  If your son is like my little ones were, he'll have fun playing with the wrapping paper and boxes the expensive stuff came in.     Enjoy that!  You're going to get through this just fine!  For tonight, you can just think of that AN as a sugar plum dancing in your head!   

Lori

[FLsunshine]

Ditto to all of the above.  Your AN is still small, even though you have some serious symptoms to manage.  This is exactly what I am going through with a 4mm AN.  But find the right combination of doctors (a neurOTologist as well as a neurologist) and they can prescribe meds to help deal with the symptoms thus giving you time to research all your options.  You are young so make sure you really look into the radiation treatment option meaning the possible long term side effects.  Everyone is different and each decision is a personal one and yours alone. 

A baby's first xmas is precious... don't let the AN take away from that. 

There are wonderful people on this website to ask questions and support you.

[Jim Scott]

Hi, MVD ~

First, welcome to the ANA website although I know you wish you didn't have an acoustic neuroma.  However, now that you have an AN diagnosis, I'm glad you've found this website and chosen to join the discussion forums.  We're here to advise, educate and most of all, support AN patients.  We can't offer strict 'medical' advice but we can offer practical information based on real-world experiences of folks who've been where you are, now - contemplating the best way to proceed.  Ultimately, that is a decision only you can make, but we'll try to help.  The previous posters have offered salient advice.  Surgery can be effective in removing the tumor but it carries risks, of course and is not always the answer.  Obviously, irradiation is likely a very viable option for you at this point - but not the only one, as you know.  It is non-invasive and relatively easy to undergo.  Best of all, it is usually successful (the AN dies).  However, it is not a panacea and does carry some inherent risks of it's own.  Facial paralysis is not usually one of them, although post-radiation swelling can sometimes cause some post-radiation facial disturbances. 

I was diagnosed with a large (4.5 cm) AN in 2006 and soon thereafter underwent debulking surgery followed, 3 months later - in a planned approach - by 26 FSR (Fractionated Stereotactic Radiosurgery) 'treatments'.  Both procedures were eminently successful and I suffered no real complications....no facial paralysis or other issues.  Unfortunately, my hearing was gone on the 'AN side' (my left) at the time of my diagnosis (the result of procrastination on my part) and it did not return.  However, with radiation, although hearing is rarely enhanced by the treatment, it usually does not diminish. 

To answer your question regarding the wisdom of choosing observation ('watch-and-wait'); if the tumor continues to grow, there is a real risk of doing further damage to your hearing in that ear as well as other unpleasant symptoms.  While there is no need to panic and make rash decisions, I would suggest you research (this website has excellent AN information) and realize that this cannot be ignored or pushed to the 'someday;' category (where I put the need to repaint our condo).

Again, we welcome you and understand what you're dealing with.  Christmas shouldn't have this kind of cloud over it and I hope you (and your son) will be able to surmount the anxiety and put your AN situation aside for a day so that you all can truly have a Merry Christmas. 

Jim

[MVD]

Thank you all for your advice and support. I am just beginning this journey, and am trying to get a grasp of what I'm dealing with.  I will continue my research and investigate all my options.  In the meantime, I will see if I can get something for the vertigo.  The episodes are about 15 minutes now and are very frightening (they started at 15 to 30 seeconds in July twice a month).  I am also experiencing them every other day.  My hearing was checked in late October and again on the 23rd of December, and there is some hearing loss.   I am getting worried that my symptoms will continue to progress in the coming months. 

I had a good Christmas Day watching my little guy smile at every new toy, but I did have a vertigo episode at dinner (lasted 15 minutes).

Thank you all again.

[JLR]

Hi MVD and Merry Christmas! Im now a little over 3 weeks post CK. Had 2.3 cm AN. As far as the vertigo...I was getting it almost every day, usually at not the best times.. i.e.  driving...in the supermarket...at work... I looked upon them as a contraction and I knew when it was going to start...all of sudden my gait was off and then the boat starts to rock. So when I was driving and knew it was going happen..I pulled over till it passed. In the market much the same would just head to the produce and hold on.. crazy huh,., but as soon as my ENT started me on Medrol it all stopped. Seems the AN was quite swollen and or moved and it caused the dizzy spellls..the steroids really helped.  Since them I have had CK and so far so good.. some minor junk..tinnitus which Im dealing with and some numbness on the right side of my face and chin but im dealing with it in hopes it starts to go away..Keep in mind your AN is small..and you need to speak to several doctors and get several opinions and then make up your mind.  I was told in Sept that I needed to take care of the AN in 4-6 months otherwise Im in for real trouble..and since my hearing is so good, CK was highly recommended. I was first diagnosed 10 yrs ago but it was sooooo small and it took 10 years to get to the 2.3 cm size but it was also pressing on the brainstem. Dont jump into any fast decision right now..weigh all the choices and see whats best for you.  This is a great site with tons of knowledgeable people who have had CK, GK and surgery.  Best to you and your family, Joan

[JAndrews]

I know how you feel. I was there almost 2 years ago. My daugher was 8 weeks old and my son was 2 1/2. I am 40years old now, and I am fine. I researched for about 3 months prior to my surgery. My tumor was much larger than yours and had to come out. I did have extensive facial nerve involvement. I have no paralysis. The paralysis lasted about 2 weeks total after surgery. Facial nerve monitoring is crucial during surgery. Your tumor is very small but obviously causing you problems. The entire experience was very scary, but you will be ok! I will be happy to speak to you any time via phone or internet. Please send your MRI to Dr. Brackmann at the House Ear Institute, he will call and consult with you on the phone.

[cherrypiper]

as jan alluded to, when i got my AN removed , it was size of a big pecan along the audio / facial nerve axis,

the gamma knife therapy had no significant facial issues presented with it. They check 6 months after the gamma knife to see if any growth occurs. If no, then in 6 months one more mri is done,

IF growth is found , then you can elect to go after it with cracking open head and microsurgery or you could try gamma knive again. Most Gamma knife stuff lists 85 to 95 % kill rate for the tumors.

so you buy yourself 2-  6 month  non invasive attempts b4 you ever have to try "skull cracking" to go get it.

Might be something to consider since yours is so small. Microsurgery has a much higher rate of facial problems 20 to 40% then gamma knife.

[leapyrtwins]

My AN was removed surgically, but my skull wasn't "cracked".

That is such a creepy visual to me 

My neurosurgeon told me he was going to remove a nice "window" in my skull about 2" x 2" and he even held up his fingers in a "frame" to show me what it might look like.

After my window was removed my neurosurgeon and my neurotologist used a microscope to look inside my skull and peeled my AN apart layer by layer while my facial nerve was being monitored.  When my surgery was complete, they filled the place where my AN was with some of my belly fat and titanium mesh.  They covered all that up with a titanium plate and replaced the window using titanium screws to secure it.

That's what both my docs told me - although not verbatim - and my operative report concurred.

Cracked is such a harsh word 

Jan