Musician with AN, contemplating Radiation/Radiosurgery

[phantagrae]

Hello All,

I'm new to this forum, and I'm glad to have found it.
I've just recently been diagnosed with AN and I have a lot to think about.

I'm an orchestral musician, playing 2nd Bassoon.  In looking into treatment options, I know that with surgery there is a greater risk of loss of hearing in the affected ear and facial paralysis on the affected side.
These are things that would probably end my career--I need to hear and I need fine motor control in my mouth (and my eye).

So, the ENT I saw last week, who is referring me to a neurosurgeon and radiosurgeon for consultation, feels that radiation is the best option to preserve my hearing and facial nerve.
I think I've been a little naive in the way I've been thinking about treatment and results and after-effects, but I'm hoping that radiation can give me the best outcome.

I've been aware for some time that I don't hear as well in my right ear as I do in my left, but since I've been playing in orchestras since 8th grade (and in band starting in 4th grade) and I'm now in my early 50s, I figured it was from spending about 40 years sitting in front of trumpets, trombones and French horns, having them blasting at the back of my head.

But in 2010 I noticed a significant change.  My right ear felt stuffed up, like my ear needed to "pop" and wouldn't, and I would experience louder sounds like a pressure against my ear, rather than just sound.
I talked to my PCP and he felt it might be an inner ear blockage and I tried taking OTC decongestants, which actually seemed to help a bit.  He said that if it didn't get better that he could refer me to an ENT.  Well, since I have very minimal health insurance (long story), I kind of put it off and and the stuffiness seemed to abate somewhat.  I did find that I couldn't really put a phone to my right ear--it would sound like a crackly bad connection--but the stuffiness seemed to wax and wane.

Then at some point I started noticing a strangeness in my sense of taste--but it was so vague I almost thought it was my imagination.  But then some time late last summer I noticed that I had a slightly numb spot on the right side of my chin and my lower lip and that there was a patch on my cheek where I couldn't feel temperature properly.  The temperature thing was also present inside my right cheek, and by that November, I ended up with a tingling sensation on the right side of my tongue.
I thought maybe it was related to dental issues, so at my check-up in December I mentioned it to my dentist who immediately suspected a tumor on the trigeminal nerve and suggested I see a neurologist.
By the time I saw my PCP in January (for a check-up but also so I could get a referral to a neurologist), the numbness had spread to the roof of my mouth and my gums, then up the side of my face, including my nostril, my upper cheek, my eyelid,  and my forehead and scalp.

I saw the neurologist on March 29th and he asked me about hearing loss and suspected the AN.  I had an MRI on the 15th and the neuro doc called me the next day to confirm the AN.  He then sent me on to the ENT, whom I saw on the 23rd.
Finally got a look at what I'm calling the Stoopy Tumor.  It looked awfully big, but in reality it's only 1.6 x 2cm, which is, I guess, kind of medium-to-large.
The ENT and I talked about the different options and the different chances of preserving hearing and facial nerve function.

Knowing that I'm a musician--and that my hearing is really not all that bad in my right ear, certainly better than I suspected it would be--he feels that radiation is my best option, but he and I also discussed the possibility that it might not work and that I might end up having to have surgery at some point down the road after all.

I think the process that he was talking about is where you have 5 radiation treatments over the course of a week or so, rather than one single treatment.

Anyway, I meet with the neurosurgeon on the 13th, and I know that my case is also going to be presented to the radiology folks.  I think he was going to do a consultation with the 2 surgeons (neuro and radiation) possibly before my appointment, so we can all discuss my options.

Does anyone know of any other musicians who have gone through treatment for AN?

Thanks, guys,

~phanta

[CHD63]

Hi phanta and welcome to this forum .....

I, also, am a musician and we have had several others on here who are, as well.

First of all, every person and their AN is unique, which means no one can tell you with any certainty what your outcome will be with any type of treatment.  That being said, these days, if you choose your treating physicians very carefully, we have much fewer instances of facial paralysis.  Since you already have facial symptoms, it indicates your AN is probably pressing on your facial nerve already (remember none of us are doctors on here).  Just so you are aware ..... there is often temporary swelling of the tumor several weeks or months after radiation treatment.

Bottom line is ..... do your homework, as you are doing ..... choose excellent, very experienced in AN treatment physicians ..... and at some point you will know what is right for you.

I can well relate to the impact of hearing loss to a musician and to facial paralysis to a wind instrument player.  I wish I could say I retained my hearing ..... I did not.  However, I do have a bone-anchored hearing device that is wonderful to assist me to have more normal hearing.

Many thoughts and prayers for the right and successful treatment for you.

Clarice

[nftwoed]

Hi phanta;
   You wrote: "Does anyone know of any other musicians who have gone through treatment for AN?"
   Yes; The person plays in a rock band and had Gamma Knife of a 2.5 cm AN. He did lose all hearing ( most was gone before Tx ) that side but is doing well making music and cutting albums yet. He's lead singer of a Spanish group.
   To my knowledge, the person wears no device to help with his SSD.
   I believe he wears a musicians ear plug to protect the remaining ear.

[phantagrae]

Thanks, guys

I guess I'm really hoping that I can be treated and return to my normal life, but I wonder if I'm just hopelessly naive.

Although I have seen that some musicians on the forum have learned to deal with SSD, I am afraid that I won't be able to continue as an orchestral musician if I lose my hearing.

Although I'm already having facial symptoms, they're not too severe, but I was reading about some people's post-GK experiences with facial spasms, etc., and I'm wondering if that occurs with all radiation treatments.

My sister wants me to try getting a second opinion out in Phoenix at their branch of the MAYO clinic--I haven't seen that facility mentioned in the physician folder.  We have a facility here--CARTI--that treats a lot of oncology patients and they also treat AN patients with radiation.  As I understand it, one of the docs that my ENT is going to consult with comes from this facility--I don't think I remember his name, if it was given to me.

It's all kind of overwhelming me right now.  I don't know if I need to be thinking about traveling across the country somewhere or if I can find good treatment here or in AZ or what.

[arizonajack]

My sister wants me to try getting a second opinion out in Phoenix at their branch of the MAYO clinic--I haven't seen that facility mentioned in the physician folder. 

If you are considering treatment in AZ you might also want to check out the Barrow Neurological Institute Acoustic Neuroma Center:

http://www.thebarrow.org/Neurological_Services/Brain_Tumor_Center/Acoustic_Neuromas/index.htm

[phantagrae]

My sister wants me to try getting a second opinion out in Phoenix at their branch of the MAYO clinic--I haven't seen that facility mentioned in the physician folder. 

If you are considering treatment in AZ you might also want to check out the Barrow Neurological Institute Acoustic Neuroma Center:

http://www.thebarrow.org/Neurological_Services/Brain_Tumor_Center/Acoustic_Neuromas/index.htm

Thanks--I think I saw this listing after I posted yesterday.  I think I'm going to call them and see if they'll consult with me.
I'm still waiting on my consultation with the docs here, but I figure I can try to get the ball rolling to see what they think.

Thanks!

[nftwoed]

Hi;
   The AZ Mayo facility is in Scottsdale, AZ. I think Mayo prefers surgery, but will do GK.

[phantagrae]

Met with the local neurosurgeon yesterday--unimpressed.

I'm not sure what I expected, but I felt like he wasn't really interested in me or my case or something.  Hard to put my finger on it.

So, I'm definitely going to get the ball rolling on having my records sent to the Barrow Institute.  I meant to start on that today, but I've been kind of swamped at work, so hopefully tomorrow I can start making my phone calls.

[latirus]

I sympathize with your problem right now and will post in case my experience can help.  I was diagnosed with a small-med. AN (about 14 mm diameter) and at that time, more than 2 years ago, I knew mostly about surgery.  I was pretty limited by insurance to my local university hospital, and luckily liked the surgeon there. He had some AN experience but would do the slightly easier operation (still 10 hours plus) that would take out the inner ear. He required me to also see the radiologist, who did gamma knife, because I was considered a good candidate for radiation.  It was disconcerting for me to be told to choose - who is the doctor here? - even though I'm a research biologist.  I felt they were leaning toward radiation because of my age (66 at the time) and the amount of damage the operation would do.  I changed my mind and had the radiation.  So far, it has been good.  I had almost no reaction after.  My hearing is about the same as it was.  The tumor is about the same size or maybe a bit smaller.  As someone posted, it turned black (everyone happy), and then fuzzy white again at the middle (a bit worrying but not very). 
     Some things are important.  I think no one here would advise you to use a surgeon who does not seem interested in your case.  He may not have a lot of experience with AN and it is a very serious and specialized surgery.  Everyone agrees that it is worth going somewhere where the doctor/s are familiar with AN.  The same goes for radiation treatment.   I did care about keeping my ear, even though I am only an amateur musician, and that helped me decide to take a chance that GK would work.  I'm also pretty good at waiting, and you need to be able to wait out at least two years with lots of MRI's and the worry that goes along with them. I forget if your tumor is larger than mine, and you are younger, both factors making you a better surgery candidate than I was.    I really hope you can meet with very skilled representatives of both treatments before you must decide.  I have had two very good years of life and lots of music since my GK.  Good luck to you.

[Brewers7]

As a former musician (sax, piano and vocalist), I now fully appreciate your concerns. Although I did not perform professionally, music was a big part of my life for 50 years. So being unable to perform has been a huge adjustment.  I tell myself that most people have never experienced that enjoyment.   I had a very large AN, so surgery was my only option.  Also, I had many complications (facial and vocal cord paralysis) which most do not have, even if surgery is selected.  I would encourage you to look into all options.

[YACEAS]

Phantagrae,

I don't post often but you're story resembled mine so much I thought I had to.  My first symptom was also an apparent unclearing eustachian tube.  As much as I tried swallowing it wouldn't clear a bit.  An ENT thought it was due to my frequent flying going on at that time.  My next symptom, about nine years later, was a small reduction in hearing on the same side as the Eustachian tube.  This was followed by a much more noticeable hearing loss two years later, after which I went to an ENT who ordered a hearing test, then an MRI.   The two docs I talked to pushed for surgery but I chose Cyberknife with Dr. Chang two months later.

At the time I saw Chang my symptoms were the usual: feeling of fullness on the affected side, numbness in face on affected side from the chin up to the forehead, tinnitus, and, of course, hearing loss.  At Dr. Changs's office I was told that the numbness would probably worsen, a twitching eye would develop, tumor swelling would occur, and more.

The outcome?  The twitching eye did not happen at all!  The fullness is gone most of the time.  (The tumor did nonetheless swell at times, and continues to do so, but it's periodic.)  And I have absolutely no facial numbness now.  Moreover, I'm about 15 mos post-CK now and I still have pretty good hearing on the affected side which comes and goes according to the state of swelling.  I would also say there has been no additional loss of  hearing, and occasionally, there are moments of almost normal hearing--pre-tumor!  I'm hoping that the tumor shrinks definitely and gets off my hearing nerve.  Prior to my diagnosis it had only pushed on the hearing nerve only a few months earlier.


Regards,
YACEAS

[Tumbleweed]

Hi, Phanta:

Statistically speaking, CyberKnife (CK) treatments offer your best chance of hearing preservation and avoiding facial paralysis. Dr. Steven Chang (incidentally, my doctor) is one of the leading CK practitioners in the world. He will review your MRI and give you his recommendation for free. Contact him via email: sdchang@stanford.edu. If you choose Dr. Chang as your doctor, you will find him to be the most engaged and responsive doctor you will ever have met. He typically answers my emails within a few hours and never rushes me through appointments. And my CK treatments were wildly successful (see my signature below for details).

Best wishes,
TW

[phantagrae]

Thanks, all!

I sent my records out to AZ last week and heard back some preliminary news yesterday.
The doctors there said that I am a good candidate for Cyberknife and that I could have my treatment there.

Now I just have to work out the finances.  At this point I'm waiting to hear back about estimates for self-pay, to see how much it's all going to cost and what I'm going to have to do in terms of making arrangements.
I'm going to have to have all kinds of preliminary appointments out there (ENT, new MRI, etc.) plus the actual treatment itself, so I have no idea what kind of $$ I'm looking at.

I'm hoping to go no later than mid-July, if I can work everything out.

[Imcamodchick88]

I normally don't pop into this category, but I saw your post and felt the urge to reply. When I was diagnosed, I thought it was the end.  I was a professional singer, and now sing with a university choir. I had to have translab, because of placement of the tumor. However, my instructors have told me that my pitch has not changed since surgery. I also still play piano and sax.

Good luck with getting ck, but know no matter the out come, you have the power to pull it off.

Best wishes!
Kristin

[phantagrae]

So, I just saw Dr Gao at the CARTI clinic here in LR and I'm very happy with the prospect of going forward with FSR treatment here rather than going to the Barrow Institute.  I had really wanted to go to Barrow, but the finances just made it impossible.

Since I had talked to my ENT a few days ago and explained my financial issues, he called the folks at CARTI and let them know ahead of time that I'd need some financial counseling/assistance, etc., so when I arrived they already had some paperwork and information prepared for me to take home and fill out and they even called the local medicaid folks to have them send me a form from their office.
The attitude at CARTI was, "let's get your treatment started and we can figure out the finances as we go".  Now, some of them probably assume I have cancer, since that's what is primarily treated here, but they're all very nice and helpful, so I appreciate it.

At any rate, it looks like I'll start my preliminary appointments as early as this Friday or Monday to get the molded mask created and a fresh MRI done to plot the treatment.
I'll be having 30 fractions probably beginning around the 22nd and going through the end of August.  I'm hoping that I'll be able to start the symphony season in September.  We have an early pre-season concert on the first weekend of September and if I'm feeling fatigued or have any other post-treatment symptoms, it should be easy to ask to be excused from that concert, but I really hope to be ready to go when our regular season rehearsals begin in mid-September.

I'm ready to do it!