Newbie w/ 4mm AN not sure where to go from here

[ColaBurns]

I'm a 28 year old mother of 2 young kids in Chandler, AZ and a little over a month ago I passed out while driving to work. I had been having issues with anxiety/panic attacks and lots of Vertigo and Dizzy Spells. While at the hospital we decided to push for a CT Scan of the head since we had already ruled out heart and lung issues. The docs were pretty positive there would be nothing but behold a 4mm Acoustic Neuroma and 1 inch Sphenoid Sinus Mucocele. My Sphenoid Sinus Mucocele is being handled by an ENT and I have an appointment with a specialist in the Phoenix Area (Dr Fucci) this coming Monday. I was told by the ENT while reviewing the CT Scan and MRI Images that the 4mm acoustic neuroma is right up against the inside of the ear canal and not in between the ear and the brain like a normal acoustic neuroma. I was also told that because of the location, most likely there would be no surgery as it would completely destroy all chances of hearing out of my right ear. Currently, I only suffer from massive headaches on a daily basis as well as severe Dizzy Spells and feeling sick. Alot of this can be chalked up to the Sinus issues, however, I'm afraid of the "watch and wait" decision and chance this thing getting bigger and causing facial paralysis and even more Vertigo issues. At the same time, I dont want to have an un-necessary surgery and destroy all chances of hearing. Not sure if radiation sounds like my best option or if I should just leave it in the hands of Dr Fucci and do whatever he says. I had a bad experience with a Dr telling me I had lung cancer just to find out it was a fungal infection so I have a hard time not "2nd guessing" Dr's these days. Anyone else have a small tumor in the same area and what did you do for it? Thanks so much and I am so happy to have found this forum as I dont really have anyone else I can talk to about all this.

Nicole from Arizona

[Lizard]

Nicole,
I just want to welcome you to the forum and say that I was 27 when I was diagnosed and I know it can be very daunting.  After reading about your symptoms it seems to me that this booger has to go!  I'm no Dr. but I think that you will probably lose your hearing in your AN side as many of us have, but the tumor is small and therefore radiation will also be an option for you.
This is a very personal decision and can be the toughest part of your AN journey, I know it was for me.  I wish you luck deciding which path to take and I'm so happy you found us 
One other thing, you mentioned a CT Scan and then something about an MRI, I just want to make sure you had an MRI with contrast as this is the best way for the Dr's to see the AN.

Get multiple opinions and ask lots of questions,
Liz

[ColaBurns]

Hi Liz. I'm pretty sure the MRI had contrast as the ENT showed us the results and you can see the Acoustic Neuroma clear as day. I tried looking at other pictures of the tumors and sure enough my tumor is much much closer to the "outside" of the head rather than near the brain (which I guess could be considered a good thing). What kind of things should I be asking the Dr tomorrow? Right now I"m leaning towards getting the surgery done to have the Mucocele removed and then go back for another MRI to get a better picture of the acoustic neuroma. I also want to be tested for NF2 as I have two small children and would want to put that in their medical records if neccessary. If the giant ball of snot (thats what my husband calls it) is removed and my headaches and vertigo go away then I may say forget the acoustic neuroma for now and opt to watch and wait. My biggest concern is facial paralysis followed by the severe Vertigo I get. I dont want to be driving to work and crash into someone because I was too lightheaded and dizzy.

Thanks so much for the reply Liz. I really appreciate it.

[PaulW]

Hi Colaburns,
I was recently diagnosed with an Acoustic Neuroma and Mucocele.
Mucoceles are very common and mostly do not cause any problems whatsoever. 15% of the population have them and most dont have a clue!
If you are sufferring from dizzyness its most likely the AN and has nothing to do with the Mucocele.
The Mucocele probably does not need treatment at all.
If treatment is suggested I would certainly get a second opinion, before getting it surgically removed.
Mucoceles look ugly on the scans, but they are normally completely harmless, and have no effect on you at all.

As for the Acoustic Neuroma, I had my 10mm AN treated with Cyberknife 5 days ago.
Today I feel exacty the same as I did pre procedure. Which is partial hearing loss and balance issues!
One of the reasons I chose radiation therapy was because the tumour was small. The total dose the rest of your body and brain receive is proportional to the volume of the tumour.
Your AN is only 4mm.   The amount of radiation you would need to treat that is very small. My 10mm AN needed 15x the radiation to treat it. a 20mm AN would require 125x the amount of radiation.

I have had balance issues for sometime, and I have been told that my brain will evetually compensate and the dizziness will subside.
To achieve this though the brain does need retraining, and while it maybe hard to get off the couch while having a dizzy attack, I go walking for 1 hour a day.
If you live near the beach even better, walking on soft sand gives your brain even more to think about.
A few hours after a good long work I feel quite normal.
So giving your brain balance training through walking maybe beneficial.
Ultimately whatever you do, you need to be comfortable with the decision.
After reading many research papers, I decided on early intervention, with Cyberknife as my choice of treatment.
Regardless of the method you choose, the choice of doctor is also very important.

While it is still early days I am very happy with my decision.

[ColaBurns]

HI Paul, thank you very much for the reply. My Mucocele is in the Sphenoid Sinus and is pressing against my pituitary gland and expanding into the brain (its actually grown half an inch since the first scan in June) and my biggest complaint is severe migraines throughout my whole head which is typical of a sphenoid sinus mucocele which is why we're opting for the surgical approach of draining it and releasing some of that pressure. My ENT told me the same thing that the dizzy spells are most likely the acoustic neuroma. I have my meeting with the specialist tomorrow for the acoustic neuroma and may opt for watch and wait for a few months and then I may decide on the radiation approach. I'm very nervous about the surgery so I'm glad to hear of someone else who did radiation with a smaller tumor. Thanks so much again I really appreciate it!

Cola

[leapyrtwins]

Hi Cola.  Welcome to the Forum   

Check out BNI (Barrow Neurological Institute)   http://www.thebarrow.org/index.htm

MaryBKAriz had Cyberknife @ BNI    http://anausa.org/forum/index.php?topic=6523.0

She hasn't posted on the Forum recently, but I'm sure if you sent her a PM (personal message) she's be happy to tell you about her experience.

Good luck,

Jan

[ColaBurns]

Thank you so much Jan I may just have to do that. I'm glad to find people from my neck of the woods on here. It's hard talking to family/friends because they just don't understand God love them I'm planning on doing plenty of research before making up my mind as to what to do...this is MY brain after all

Thanks again!

Cola (Nicole)

[PaulW]

Sorry to hear you have one of those Mucoceles thats pushing its way in, most of them don't.
Fairly run of the mill endoscopic procedure I believe to have it removed.
Good luck with your AN. Its very small so, so you definitely have time to think.
For me the hearing loss, dizzy spells, disorientation in large crowds and noisy rooms, were beginning to mess with my head.
I am normally a very social person.
Watch and Wait is a very valid option, but I found it difficult to stay positive, as my hearing and balance deteriorated.
Opting for early intervention has given me a focus and an end point. The moment I decided on a treatment, the psychological burden of the AN disappeared.
It became a personal challenge, rather than a disability.  
I can stay positive for the next 24 months knowing that at the end of it, what hearing and balance I have left is what I will need to deal with for the rest of my life.
People go deaf in one ear all the time for a variety of reasons, we have two ears, is it really such a big deal, probably not.
While some may say I was a little rash in my decision for treatment, I feel the psychological benefits of doing it sooner rather than later have been worth it.
I know the result maybe partial or full deafness sooner rather than later, but hey I was probably going to go partially deaf anyway.

I notice from studies and surveys that many AN sufferers have depression, a complication that I believe is not being addressed with the seriousness it deserves.  
With whatever solution you choose think about your ability to adapt and cope too.

[leapyrtwins]

I notice from studies and surveys that many AN sufferers have depression

Paul -

you are right about this.  I found that my depression post op was caused by being SSD (single-sided deaf).  Once I got a BAHA implant, my depression left me.

Others are depressed for different reasons, but seeking help for the depression is vital.

Jan

[ColaBurns]

So I will be joining the watch and wait group and have a follow up with the Doc in January. On a side note I go in for surgery on the Mucocele on the 9th and was just told a few minutes ago that the CT Scan shows a Deviated Septum so the surgery will be a bit more complicated than originally planned and instead of being out of work for 2 days I will be out for about 2 1/2 weeks. Fun times.

[Jim Scott]

Hi, Nicole, and welcome ~

I've just returned from a brief vacation and discovered your post. 

I'm not qualified to offer medical advice but your decision to observe ('watch-and-wait') the AN seems reasonable, considering the diminutive nature of the tumor and the very real risk of losing your hearing in the affected ear should removal surgery be performed.  I'm sure you'll use the next six months wisely to move toward a treatment decision, should the AN grow, making it imperative that you chose a treatment approach.

I'm sorry you have to undergo surgery for a deviated septum as well as removal of the mucocele, requiring 2½ weeks away from your job.  Obviously, not fun at all. However,  I'm confident that you'll come through the sinus surgery just fine and recover rapidly.  Meanwhile, don't forget your friends at the ANA discussion forums.  We're here to support and inform you as best we can.  Don't be a stranger! 

Jim

[CHD63]

Hi Nicole .....

Just adding my welcome to this forum of caring, supportive friends.  We're behind you all the way and support you in whatever decision you make.  It sounds like you are wise to have the mucocele taken care of first and then see how your AN symptoms are afterward.

Be sure to let us know how you are doing.

Best thoughts and many prayers.

Clarice

[ColaBurns]

Thank you for the kind words everyone. I am almost impatient to have this Mucocele taken out. The headaches have been rather insane these past couple of months and I'm popping Tylenol like crazy. I'm assuming once this "booger ball" is out of my head the headaches will go away. I'm happy to join the "Watch and Wait" brigade and am confident I made the right choice. I thank you again for the support, the kind words and the advice. It has been difficult to get through this when there is nobody else I personally knew who was going through or had gone through the same thing.

Thank you again!

Cola

[cakulmom]

Hi there,

I too am newly diagnosed, albeit, waaaaay older than you.  First of all, get more than one opinion.  Get more than one opinion.  Get more than one opinion.  Secondly, don't get too panicky and depressed.  Read my son's story at www.runpjrun.com and hopefully, you will come away inspired.  Many other tumor patients have.  Click on the CBS news link.  You have a long life ahead of you and while it may not be as perfect as you envisioned, you will come through this a much stronger person.  Don't worry about the kids.  One-sided ANs are not hereditary.  But do limit their exposure to radiation when you can (including cell phones at a young age)!

From what I have determined, without total removal of the tumor, there is a slight (very slight) chance of the tumor becoming malignant.  Well, we have dealt with malignant brain tumors in our family and it is not pretty.  Your chances of getting an AN were small too, yet here you are.  So consider your tolerance for risk when you decide.  Also, while gamma knife has some track record of success, it is still a new technology and I don't believe all the cards are in on that yet, long-term.  This is why I am choosing surgery.

Be strong.  You'll get through this.

[pjb]

I just read your son's story what an inspiration you must be so proud of him... Now yours is an AN and different then your son's but somehow could this be related seeing both of you have a tumor or just totally coincidental ??

My prayers and thoughts are with you and your son.

Pat