She who hesitates is ...??

[Kat From Indiana]

Hi. This is my first post and this is my story.  I am female, 55 and diagnosed through MRI to have AN in my R side.  8mm x 3mm x 4mm in size.  I will start my story line in April 2013 when the full feeling and muffled hearing in my R Ear was bad enough to take me to my Internist.  She said, no ear infection but to take Mucinex.  I tried this for several months, to no avail.  The ringing began around August 2013.  Contrary to my understanding of tinnitus, I was more comfortable in a quiet room, alone with the ringing.  I began to shun common areas where numerous people and loud noises made me very uncomfortable.  The ringing (roaring) increased as the hearing became more and more muffled.  Hearing in my R ear sounded tinny or electronic.  Talking on the telephone with that ear was impossible.    November 2013 I was convinced I was going deaf (R ear only).  I made myself an appointment with an ENT.  After the test the ENT told me there was nothing wrong with my hearing.  I looked at him like he was crazy, and he looked back at me and tried to convince me that I was the crazy!  He asked me if I was a teeth grinder.  I said no, but maybe I clenched at night. ENT diagnosed me with TMJ and said the tinnitus was a byproduct. He sent me to dentist to get a splint, a mouthpiece to stop me from clenching my teeth.  I had NO jaw pain, but I had been attempting to pop my ear almost constantly so I thought would stop the popping and try the splint. I noticed some balance problems in February 2014.  March 2014 went back to my Internist and asked for MRI, which revealed AN.  I made myself an appointment with a different ENT surgeon (in Indpls) who mentioned ANs on his webpage.  The first thing he said to me was, "The good news is you have an AN but you don't need to do anything about it right now."  He described the AN as somewhere between a small and a medium neuroma (I thought it was small, compared to those in this forum) and he said to W&W for 6 months, then have another MRI. He said that surgery would probably take away all my hearing and that I should just enjoy what I have left for as long as I can.  He was not forthcoming with any more info.  I did ask, "When you do, do surgery, what type do you typically do and how many have you done in the past year?" He answered, Retro-sigmoid and never did tell me how many he has done.  I asked for another hearing test.  The test revealed slight hearing in my L ear and more loss in the R, but neither was notably bad.  Now I have a second appointment scheduled with a Neurosurgeon April 21.  Here is what I think I have learned since my diagnosis.  I can W&W and hope that my hearing and my balance problems do not become worse. However, if they do get worse (and my history is that my symptoms and QOL have become consistently worse in the last 12 months): 1. I will never get back any hearing that I may lose during the W&W phase. 2. The longer I W&W, because of my age, the less chance I have for any type of surgery to remove AN.  3. The smaller the AN, the greater chance of hearing preservation, so W&W may also reduce my odds of a more successful AN removal with retained hearing. Which brings me to the Subject of my post: She who hesitates is .....lost??...smart?...other??  I apologize for this first post being so long and if you are still reading this, thank you, I really appreciate it.  I'm not sure why I am even writing this at all.  I guess I figured I have to stop creeping around the forums and get something out there.  ANY comments are appreciated and I am so very grateful for this site and forum.

[mhdilks]

I think is important to know that you are not the only one.  I am also a female and 54 with AN in my left ear.  I also have constant ringing that I have been living with for a year.  W&W is my status.  Like you I feel very lonely in this journey.  The doctors just tell me that I will lose my hearing on the left ear. ( I can hear, but not enough to use the phone )  This is not easy.  My family is tired of hearing me complain so I think a place like this where I can read about others is going to help.  Please write and good luck with your decisions. Just know that you are not alone.

M. Dilks 

[terisandler]

My comment - get opinions from docs that specialize in ANs.  Make sure that neurosurgeon is well versed in ANs. Learn about all options.   My ENT sent me to a neurotologist AND a radiation oncologist.  Keep breathing.  It sounds like you are doing the research and familiarizing yourself with the processes.  I hope the neurosurgeon in Indy will be more forthcoming about his numbers regarding experience with AN treatment.  Is there a neurotologist you can see in Indy.  It's my understanding that the two specialists frequently work together.  Good luck next week!

[Cheryl R]

It can vary from person to person about how the AN may grow and cause damage to the nerves.        There is a chance of saving the hearing if tumor is smaller and surgery is mid fossa.      Not a lot of drs do this one.       I do go to Univ of Iowa and Dr Bruce Gantz does mid fossa.      there are still no 100% guarantee it will be saved but a much better chance.       He has told me he does more than Mayo's.             One's hearing loss is not always sudden but sometimes gradual.              Making the choice if one should W&W is hard as one can stay small for a time.                      Dr Gantz is a neurotologist and does around 70 AN's a year of mid fossa and translab.   
         Good luck in your decision.   Not an time.                        Cheryl R

[jsanders1379]

I'm wondering why you haven't considered radiation, with such a small AN. Upon my diagnosis, my ENT recommended that I consult with both a surgeon and a Gamma Knife radiation specialist.

[Echo]

Both the size of your AN and your age would make you a good candidate for radiation, if it appeals to you. Radiation will also give you better odds than surgery of maintaining your hearing although there are no guarantees for how long.  Some folks loose it quickly others slowly over a long period of time and a few manage to keep their hearing. 

I would recommend having more consults with Dr.s who specialize in AN's, radiation and surgery to fully explore your options.  As the AN grows in size so does your % of risks for complications, especially with surgery.  The more experienced your Dr. the better your outcome. 

My first consult was with an Otolaryngologist who told me I had a slow growing tumor and to come back in a year for another MRI and we may or may not discuss treatment at that time.  I had several questions to ask him regarding the AN and he told me I was "jumping the gun" to ask those questions.  I RAN away from that Dr., and the next 3 specialists I saw gave me all the time and info I needed to understand my diagnosis and treatment options.   My AN was diagnosed at 1.8 cm and grew to 2.4cm within one year - so much for slow growing!  I'm 59 and opted for Gamma Knife.   Your AN is small enough you have time to do some research and have other consults.  Research as much as you can and you will come to a decision that is right for you.

Best of luck.
Cathie.

[Kat From Indiana]

Thanks so very much for ALL your comments.  Actually the ENT I saw is a neurotologist, not just a neurosurgeon.
Regarding radiation treatment.  It scares me.  My husband had prostate cancer 3 years ago and we researched radiation therapy at that time.  Even though the initial treatment may be successful, it appeared to us that in the long term, the effects of the radiation begin to take their toll on the areas surrounding the treatment area. And to magnify my fear, while in hospital to remove husband's prostate, his hospital roommate was there for a colostomy.  He had had prostate cancer and chosen radiation treatment 10 years previously.  He had since, lost his ability to urinate without the use of a catheter and now was losing his colon as well.  I also saw what radiated seeds did to my own father's urethra after less than 8 years.  I would never judge someone's decision for radiation and I plan on having a consultation with a specialist in that field, but I am very leery of it.  I also understand that if the tumor starts to grow again, the radiated tumor is harder to operate on.  Anyone: feel free to jump in here and correct me if I am wrong.  I have a huge learning curve and if I have read or received bad or wrong information I would very much appreciate being corrected.     

[terisandler]

Kat, it sounds like you are very familiar with the downside of radiation treatment.  Surgery can also change your life drastically, as I'm sure you know by reading the discussion board.  I believe that radiation treatment has become more advanced since the hospital roommate was treated.  There are probably newer techniques since you researched radiation 3 years ago.  When I was considering my course of treatment I decided it was rocket science (CK) vs brain surgery.  I chose rocket science because I felt the potential complications had less potential of altering my life than those of brain surgery.  Only time will tell. 

The only "right" choice is the one you and your husband feel is the best treatment for you after looking at the options.  In my opinion it's all a crap shoot and whatever happens, happens!  But that's  how I look at my life in general.  I do my best and release control over the situation I am dealing with at the time.

Good luck as you continue along the AN path!

[sandyinwisconsin]

Kat,

I'm your neighbor to the north. I live in Central Wisconsin.
I just went through 26 low dose radiation treatments, and I can talk to you if you want. 
It's actually a very gentle radiation treatment.  There is a different between gamma knife, cyber knife, and what I had. 
I don't think I'm supposed to display my email, but it's on my personal page if you click on my name.

Sandy in Wisconsin. 

[Pamm659]

Hi Kat,

I just had Translab Mar 19 for a left 1.4cm AN and am still recovering. You will find yourself here more than you want to be, but this is where you need to be.

You can go read my story at POST TREATMENT...3 1/2 WEEKS AFTER TRANSLAB for all of the specifics.

Message me if you have any questions.

Pamm

[Echo]

Hi Kat,

I was equally terrified of both radiation and surgery when I was initially diagnosed.  Right up until the day of my treatment I didn't want to do either one, but leaving my AN alone was not an option as mine was showing some active growth.  After doing a substantial amount of research and speaking with many people here on the forum, listening to the AN Webinars (you can access them from our home page), and having consults with several neurosurgeons and otolaryngologists, I choose Gamma Knife.  The overall risks for complications that I personally faced were greater with surgery than Gamma.  Yes, I have some issues that I am living with, but they are primarily balance related but they are nothing that I can't manage. 

I asked all the specialists I consulted with if surgery after Gamma would be more difficult and the responses varied.  Some said yes, others said absolutely not.  One neurosurgeon gave me the best advice possible - "Focus on what treatment works for you now.  Do not plan now for a second procedure you may never need."   

My best advice would be to research all your options with an open mind.  Make some lists of the pros and cons of each treatment, how they would personally effect you and rate the risks based on what you can or cannot live with.  This approach helped me sort through the fog and see things clearly.

Best of luck,
Cathie

[Ruthie Mac]

Hi Kat,
I often wonder if I had been diagnosed and treated earlier if I could have avoided some of the symptoms I'm dealing with now. Of course I'll never know. Like many others, I was told that my fullness in the ears and ear pain was probably from allergies or TMJ. It was finally after a year when I lost my balance that I could convince a Dr. to order an MRI.
With a 1 cm AN and good hearing, I was technically in the w&w category, and REALLY nervous about the treatment options. After 6 months of research, I went for radiation.
If I didn't have balance problems, I probably would have waited, because I never would have believed what this feeling of "wonkiness" is like - I've always been active and enjoy sports, so this has been really really hard.
I am grateful that during the time I thought I just had allergies I went on a fabulous hiking trip in Morocco. It was one of the best experiences I've ever had.
But once diagnosed, it was hard for me to w&w, even though I had some hopeful conversations with people (one contact was in his 80's with a 1 cm AN that hadn't changed in 30 years and no symptoms) But everyone is different, and I didn't want to wait too long to limit my options or find out what other symptoms were lurking.
I understand your concerns about radiation. I also know some men who had bad experiences with radiation for prostate, but after doing extensive research I found that radiation is a highly complex field and the applications for it are very specific, so you can't generalize about other's experiences with various cancer treatments.
The radiation options for AN's are highly advanced, using state of the art technology to precisely pinpoint the tumor. It does have a proven track record for stunting its growth, without many side effects. And it seems that many people on this site are confirming that whatever symptoms they had before radiation are still the ones they deal with after - so there are few surprises.
But that doesn't mean it's the best choice for everyone - I talked to lots of Doctors before making my decision. Even within the field of radiation, I talked to as many Doctors as possible to compare my options. And I was warned that treatment won't magically bring my balance back - but that it will come back...doing my PT exercises faithfully.
If you want the names of the Radiation Doctors I talked to, let me know - some were available by phone and really informative and caring.
So maybe the moral of this long story is: Go to Morocco or somewhere really Fun, if you can, while you're deciding?
All the Best,
Ruth

[john1455]

I was unknowingly on Watch&Wait for at least 10-15 years because when I started to lose the hearing in my right ear, I thought it was an occupational hazard. I was a general dentist who also specialized in the treatment of TMJ disorders at the time and never having had any health problems at all, it never occurred to me that I had a tumor growing in my head. Since I had no other symptoms other than a slight hearing loss and mild tinnitis, I never even thought about seeing a physician because it was common knowledge that dentists were very susceptible to hearing loss from the noise they were constantly exposed to. My right sided hearing continued to slowly deteriorated until one night in January 2013 when I was hit with a rare headache that made me dizzy enough to go to bed. The next morning when I awoke, I so so dizzy that I could not get out of bed and I was bedridden for the next 3 days. When I was finally able to get out of bed I had severe disequilibrium (but no vertigo). I bumped into everything, could not walk straight, bumped into people while walking in the street and walked into things that were right in front of me (like newspaper stands and doorways). I too was misdiagnosed by my primary care physician at the time and I even had to insist on a MRI because I knew he was on the wrong track with my diagnosis. Finally the MRI showed that I had a 19mm AN and I was actually glad to hear that because now my problem had a name. My neurologist told me that I must have had the tumor for at least 10 years. So in hindsight I inadvertently placed myself on watch and wait and unknowingly allowed my AN to grow and eventually cause a 70% loss of hearing in my right ear, constant tinnitus, and disequilibrium that I do not expect to ever go away regardless of treatment.

The moral of this story is if you do watch and wait, make sure you have periodic MRIs to monitor the ANs growth and when symptoms begin to worsen, what you develop will not likely go away even after being treated.

I completely sympathize with Kat when she said her physicians thought she was "crazy" because I heard that all the time from my TMJ patients. Physicians tend to blame patients for their ills when they cannot put a name to something so sufferers are often told their symptoms are "all in their heads" (pun intended) or they are "crazy."

Here are a couple of You Tube videos that you may find interesting:

http://www.youtube.com/watch?v=ZbS4K9ENMAg
http://stanfordhospital.org/clinicsmedServices/COE/cyberknife/

[Kat From Indiana]

Follow up to my story. Hubby and I drove to Pittsburgh last Thursday and Dr. Lunsford and team treated me with Gamma Knife on Friday, June 13.  They put me out to put on the frame and I am so grateful for that!.  Got there at 5;30 AM.  Deb, my nurse and my angel, took me back around 6:00 am and I was finished by 9:30.  Had to hang around until 10:15. My head did hurt after they took off the frame so I asked for a pain pill right before I left.  We went back to our room and took a little nap.  Then went out to eat.  I felt the same as I did any other day.  Doctor wanted me to stay in town one more night,  but was free to head back to Indiana Saturday morning.  It is interesting that when I was first diagnosed, I was 100% sure that I would never have radiation.  But as I began my research and to read the posts' of others, I did a complete about-face and knew that radiation was right for me.  Deciding on Gamma Knife was an easy decision also.  Now that I am on the other side of the decision, I can only wait and hope for a successful treatment.  I am so very grateful to have found this site and for all the thoughtful and helpful comments from everyone so far.  I hope by sharing some of my experiences, it might help others who are newly diagnosed and looking for answers.  Keep looking, the answers are here, in the FORUM.  There are some wonderful, sharing souls, ready to help you in your journey. God Bless

[Ruthie Mac]

Congratulations on finishing treatment! Making the decision is so hard, but what a relief when it's over and you can focus on healing... be good to yourself...maybe treat yourself to a massage or a relaxing body treatment...Or just celebrate!!
Ruthie