Newly diagnosed and a musician. All advice appreciated

[MWL]

Hi folks,
    I posted recently on a thread about fatigue but I am looking for any advice I can get so I guess I will spill the whole story.  I first had symptoms of facial numbness 30 years ago (at the age of 19) and at that time was told I had some weird virus that was affecting my cranial nerve. Was given anti-inflmmatants and told it would go away, which it did.  Over the years, I had many episodes but always a different combination of symptoms--vertigo, facial tics, hyperacusis, facial cramping or numbness, occasional slurring of words.  But they were always slightly different and accompanied usually by flu-like symptoms.  When  I was 40, I was told that I had a rare form of Ramsay Hunt Syndrome which is best described as a form of Shingles except affecting one half of the head instead of one half of the trunk.  As I had had chickenpox at 18--just a year before the symptoms started--didn't seem too farfetched.  I was told to start antivirals within 72 hours of when it flared up and it would go away.  So this is what I did for another 8 or 9 years.
    Fast forward to this February.  My husband and I were on a trip to celebrate our 25th wedding anniversary when I started to have facial cramping.  Didn't have my meds with me and so I wasn't surprised that the symptoms didn't subside right away and prepared myself for the standard 6 weeks of a flare up.  In the meantine, my husband was selected for a new position, we moved to TX from the UK, and were busy with integrating into our new roles and new community.  But by the middle of April, the numbness and cramping had spread farther into my face than ever before, basically affecting the entire left half of my face and making the left side of my tongue numb.  I was also experienceing significant facial pain which had never been a symptom in the past.  By chance I had been diagnosed with arthritis a few months before the move and my GP had advised me to visit my new GP after the move to request MRIs of my neck and upper back.  While visiting her, I mentioned that the Ramsay Hunt symptoms were worse than ever before and was there anything I should be taking for the pain.  She asked which Neurologist I was seeing (none), when was the last time I had seen a Neurologist (never) and immediately made an appointment for me.  Saw the Neurologist who said that she had never seen anyone with RHS who was NOT immune compromised and had symptoms starting so young and asked when the last time it was that I had an MRI of my brain (never).  So a week later, had an MRI and was told I had a 2.5cm AN on the left  side.  Was sent to an ENT specialist wgho recommended I see Dr. Brandon Isaacson at UT Southwestern in Dallas (we live 4.5 hours away).  So now I am sked to see both Dr. Isaacson, who is a Neurotologist and Dr. Sam Barnett, a Neurosurgeon, on 18 June. 
    I'm told by the docs I have seen so far that this thing will have to come out surgically because it is pressing on the brain stem.  I'm also told my hearing and balance are much better than they should be. If the tumor has been growing for about 30 years, the long time my body has had to adjust may be the reason why.  I was put on Neurontin/Gabopentin after I first saw the Neurologist and it immediately took away the pain.  Now, the pain is starting to  slowly come back along with other symptoms.  The area of my scalp above my left forehead itches insanely!!  And every day the facial numbness and pain is different, some days better, some not.  Lately I have been feeling as if the inside of my mouth is swollen (it's not) and am having more difficulty enunciating clearly.  A few days ago it felt as if everything was pulling toward my ear but now it feels as if everything beginning at my eyelid is pulling down.  I thought it was my imagination but my husband tells me that yes, my left side is beginning to droop.  The fatigue is quite dramatic as well but I don't know if that is from the meds or another side effect of the tumor.  As I've had significant fatigue for years, I'm inclined to think it is just exacerbated by the meds.
      I am concerned about recovery and long term effect but with a complication--I am a musician.  I have been an instrumentalist (flute) for over 35 years so the thought of losing my hearing on one side is bad enough.  My ENT has already recommended a BAHA implant so there is a work around and I think I can deal with the hearing loss.  I am much more concerned about the facial effects.  If I cannot control my mouth/lips/tongue, I simply cannot play.  No embouchure, no me.  The thought is quite devastating.
     I would greatly appreciate hearing from anyone about their recovery from surgery, specifically about facial nerve issues and progress (or not) after surgery.  I don't know if there are any other musicians on here who could prepare me for dealing with the SSD or anyone else who has experience with BAHA but I would be grateful for any stories--good or bad--you could share in order to prepare myself. 

Thanks in advance,
Meg

[Jim Scott]

Hi, Meg ~

Not being a physician I cannot offer specific advice on your prospects for regaining the ability to control your lips and tongue, post surgery.

As you know, there are a host of factors involved, including the exact location of the tumor as well as it's size, the surgeon's expertise, etc.

For a bit of encouragement, I'll offer my experience of being diagnosed with an 4.5 cm AN that was impacting my brain stem and giving me lots of symptoms (but no facial weakness).  The AN was 'debulked' (to 2.5 cm) and it's blood supply cut off.  My symptoms all disappeared almost immediately upon awakening from the surgery.  I did not have any post-op facial issues or headaches, not even nausea.  Unfortunately, my bi-lateral hearing had been lost prior to the AN diagnoses (the price of procrastination) and that didn't change.  I was discharged from hospital within 5 days, driving again (on the highway, no less) within a fortnight and pretty much back to normal within a few months (I had recently retired so dealing with work was not an issue). 

90 days later, on a pre-planned schedule, I underwent 26 FSR treatments intended to destroy the remaining tumor's ability to re-grow (by killing it's DNA).  They were uneventful and I suffered no side effects.  I drove myself on the 60-mile round trip every day (weekends off) for 5 weeks.  MRI scans have indicated the beginnings of both necrosis and shrinkage.  I deal very well with the SSD condition and am otherwise doing very well.   

My point is to offer you one AN surgery/radiation patient's experience that I trust will give you some encouragement.

Jim

[CHD63]

Hi Meg .....

It sounds like you have suffered greatly over the years with various cranial nerve difficulties.  I am not a doctor, either, but I'm wondering if some of your symptoms may be attributable to other causes in addition to your AN.  If you look at a diagram of the 12 cranial nerves (one such diagram can be seen on: http://www.britannica.com/EBchecked/topic/141797/cranial-nerve ), you can see that the some of the cranial nerves are very close together at the brainstem.  Therefore, if your tumor is pressing on the brainstem, your tumor could be pressing on additional cranial nerves and account for a variety of symptoms.

All that being said, I was an active musician at the time of my original diagnosis ..... but as a singer and an organist/pianist, not an instrumentalist needing good embouchure.  I have to be very honest here and say I was able to continue to perform while I still had some hearing following my first surgery (used a Widex hearing aid with good results).  When my second surgery was deemed necessary and I knew I would be totally deaf, I arranged for the Oticon Medical Ponto Pro BAHA abutment to be implanted at the same time.  Best decision I ever made.  However, whether related to my AN or not, between my two surgeries I experienced one weak vocal cord, which did not change post-second surgery.  Therefore I no longer am able to sing to my own personal satisfaction.  I can, and do still play the piano and the organ.

The only other advice I would have would be to seek treatment from the physicians with the most successful AN removal experience without facial nerve damage.  Sometimes that means traveling to other medical facilities.  Just my opinion here.

Many thoughts and prayers.

Clarice

[leapyrtwins]

Not a musician, but have to say that I love my BAHA and can't imagine life without it.

Jan

[mnsmr]

Hi Meg,

When I was diagnosed I was sure my 45 years of violin playing were over. Between diagnosis and surgery, I was so distraught I ended up leaving a rehearsal early. The director of the community symphony was extremely caring and concerned, as I am not normally one to cause a scene.

Well, I had my surgery October 27, 2011. I was back playing in the symphony in January. I have not only been able to overcome the loss of hearing, but I think my playing is even improved since I have to concentrate on balance when I play.

I did not have any facial issues. Hopefully you will have the same outcome. I think the statistics favor a good outcome.

Good Luck.

[MWL]

Thanks for all the advice and personal experiences.  I truly appreciate it.
Saw the docs on Monday and they can't figure out why I have ANY hearing in my left ear, much less better than normal for my age.  So the Neurosurgeon seemed reluctant to perform surgery, knowing it would make me completely deaf on that side.  They also seem stumped as to why I am having the facial sensation issues. Right now we are shooting for TransLab at the end of August in order to work around some family trips and business committments.  And I think the surgeon is hoping I lose my hearing by then so he doesn't have to feel responsible   They want to wait until after I heal before they put the BAHA on, just in case of spinal fluid leakage.  I guess they have seen some folks who have had leakage around the implant and had to deal with fixing that so sounds reasonable to wait.
Hopefully my face will hold out that long.  I was going to say playing is becoming increasingly difficult but that is not necessarily true.  Some days ok, some days not.  Just depends.  Right now the facial tingling and numbness seems to have stabilized so I can live with it.  Pain is a little more than before but again, on and off so not too bad.  Biggest new annoyance is that I constantly feel like I have something in my left eye.  Fatigue seems to be getting worse and I am trying to slow down but that is not an easy thing to learn how to do.
Thanks again for your advice,
Meg

[It is what it is]

Sending supportive thoughts your way.

Karen