My AN experience and a question on facial muscles pulling...

[martin_ssd]

Hi all.  Just found this group.  Looks a great place for a very unique community...

I first learned of my AN around September of '07.  My wife always told me that I never heard half of what she said.  I guess she was right! 

She insisted that I go get my hearing tested.  Right side was perfect.  Left side dropped like a rock after 3KHz.  So, I did reasonably well with speech but had issues.  My ENT didn't even think of an AN.  My wife insisted on an MRI.  We found it.  25mm.  Not too bad I guess.  The ENT was truly ashamed. 

Short story short...by the time I found myself at UCLA wearing a mask and with my head bolted down to a machine that was going to zap this thing into a dead lump I lost all of my hearing on the left side.  That was December of '07.  Yes, in less than three months I went from having partially useful hearing on the left to none. 

I went for the fractionated radiotherapy.  That was a fun five weeks of driving to UCLA, I'll tell ya.  Near the end of the treatment I got happy 'cause I could hear something if I scratched my left ear.  I should have taken a hint when the doctors didn't show any reaction when I gave them the news.

It's been a almost a year.  A good-news/bad-news year.  I quit Kung Fu.  I can't stand on one leg any more.  Hey, maybe it's time for Judo, where falling with class is a virtue!   

One cool aspect of being SSD is that, when one of my babies cries I can hold him or her on my left side and it really doesn't bother me as much.  Comes in handy sometimes with adults too! 

I don't want to make light of this.  It's serious stuff.  But, if you can't make fun of it, it would be difficult not to be angry all day.

I am one of those guys who never likes to go to the doctor.  Early 40's.  Never been seriously sick.  Never had the need.  Last year was a key turning point for me in that regard.  First a botched colonoscopy that had to be repeated (my fault, I didn't drink all of the horrid stuff they make you drink).  Then the AN, several MRI's and five weeks at UCLA.  Joking with my wife I'd tell her that I'd rather have two colonoscopies with a cold camera up my behind than have to deal wiith AN problems.

Anyhow, now for a couple of problems that are of concern.  My second MRI showed the AN had grown a couple of millimeters (six months after the treatment).  I am due for another MRI next month.  We'll see.  I have been suffering with horrific headaches all year.  They come and go.  Mostly during the night.  I went from not taking any medicine ever to popping pills every day.  I do a regular dose of Advil every morning and repeat it at night almost every day.

Also, in the morning, usually while taking a shower, my facial muscles on the left side have been known to spasm or tighten-up for 20 or 30 seconds at a time.  This is usually preceeded and followed by twitching,  mostly around the lip and lower eyelid.  What to make of this?  Does it go away ever?

In the last couple of weeks the muscle spasms have gotten more frequent.  It was common to have one in the morning.  Today I had five.   I've also noticed that I can feel my pulse pumping inside my head and feel craneal pressure generally before the spasms happen.  The spasms are strong, almost reaching the strength of a cramp. 

I have full control of the left side of my face, yet the sense of touch and taste are decidedly reduced.  Today my left side feels mildly numb to the touch.  It's different every day.

If this is going to be part of my life I need to come up with an explanation real fast.  I frequently give talks in front of dozens of people (seminars, demos, etc.) as part of my job.  I can see standing in front of 200 people looking at me when I have a face pulling episode that leaves 1/2 of my face looking like the joker for 30 seconds.  The best I've come up with is "I was left with a pinched nerve after the war" ...maybe I can make dumb joke about it and it could work..or maybe I can have a couple of quick Powerpoint slides to show to either explain or distract.  Pamela Anderson should do the job (sorry ladies, it's the truth).  "Hey, how did these slides get into my presentation!"  Maybe they won't look at my ugly face for just enough time for the muscles to relax.

A friend of mine saw it about a month ago and got really scared 'cause he thought I was having a stroke.  Come to think of it, I need to go to the dentist.  I can only imagine what the poor guy might think if I have an episode while he is drilling away!

Oh yes, there's the hearing issues too, going to busy restaurants or noisy environments just stinks.  I just can't understand what the person in front of me is saying to save my life unless I have a wall or other hard surface on the right to bounce their sound into my riight ear.  I'm sure this is a common experience.  How do you deal with it?


Does anyone have any feedback on the face-pulling business?  Can I expect it to go away with time, as the nerve heals from the trauma of the treatment?

Also, I"ve been thinking of going for a TransEar device to try to restore some degree of normalcy.  I am concerned that these devices might not be designed for active life styles.  I like to go fishing and kayaking with my kids.  Does anyone know if TransEar can survive a good dunking?

Thanks,

-Martin

[leapyrtwins]

Hi, Martin and welcome to our very unique community.  Looks are not deceiving, it is a great place 

I'm glad you found us and I like your humorous attitude - it's something we have in common.  I'm also SSD, so there's another commonality 

Thank goodness your ENT listened to your wife - and he shouldn't be ashamed he wasn't going to order an MRI for you - it's unbelievable how many ENTs are unfamiliar with ANs.  It's also unbelievable how many AN patients are misdiagnosed for years, so in that aspect you are lucky yours was found.

I don't know a lot of answers to your questions, since I had surgery, not radiation, so I'll leave your questions for others with radiation experience to answer.  However, I'm thinking that the "growth" on your post radiation MRI might be swelling.  From what I've learned on this forum, sometimes ANs swell before they "die".

I use a BAHA for my SSD, but have heard that the TransEar is an option that those who have it really like.  I don't believe it can survive a good dunking though; I'm not aware of any hearing aids that can.

You mention kayaking - one of our moderators, joef, is into kayaking and he wears a BAHA - probably now while he's kayaking though; wouldn't want to fry his processor   

Jan

[Omaschwannoma]

It sounds like your facial nerve is reacting to the swelling ?, and calling your surgeon is a good thing to do.  Like Jan, I had surgery, but know with radiation treatment swelling is part of the post issues.  Sometimes steroids are used, but I'm not the doctor so a call to them is what you should do as facial nerves don't like to be bothered, they're very sensitive. 

[satman]

sounds all to familiar,i had surgery  so i dont know about radiation,fortunatley yours is very small and can be dealt with many options.
it sounds as if it's against your facial nerve which leads me to think once you get it dealt with the spasms should stop,but who really knows with these things. the good thing is you found it.
as far as ENT's, i wanted to kick this guys,well i wont say it but i think you know where i'm going.
i had lost my hearing on my left side big time,it was like i was under water,so this guy put tubes in my ears 3 times while i was awake in his office, cutting your ear drum with an exacto knife and sticking a little straw in there. to make a long story short my family DR. not the ENT sent me in for a catscan and found a tumor that was 8cm ,i was so pissed that this so called ENT never even thought about a ct or mri after 3 treatments within a years time. 

[wendysig]

Hi Martin,
Welcome to our group.  I think you will find it a wonderful source of information and comfort.  Since I also had surgery, I am not an expert on the after effects of radiosurgery, but the symptoms you describe do sound like your tumor is reacting to your treatment and hopefully dying.  As far as being SSD, as you know, many of us can relate to that.  Neither TransEar nor BAHA are waterproof, however, Cochlear has a new implant called Freedom that they claim has been tested and proven to be water resistant --  you can check it out at http://www.cochlearamericas.com/Products/16.asp.  I don't know that it would survive a dunking but it might be worth looking into it this is a priority.    Cochlear will send you an information packet upon request.  I would also suggest that if you think you are interested in it you find a doctor who is really familiar with this implant and that they wholeheartedly recommend it before proceeding.  I know my doc only recommends TransEar and BAHA but I haven't discussed Freedom with him.

Best wishes,
Wendy

[Joef]

I "Yak" evey chance I get  ...  I leave my BAHA aid at home!   They do help at work .. going out to eat.... bars  .. etc... but its not perfect, the louder it gets... the more it does not help....

[Jim Scott]

Hi, Martin - and welcome.

Your AN account is quite familiar to many of us.  Although I'm older than you I also went for years at a time without seeing a doctor because I had no need of one.  That all changed in early 2006 and like you, I got on the merry-go-round of frequent doctor visits and became quite well known at the hospital where I had my FSR treatments (26 over 5 weeks).  We aren't qualified to offer medical advice and have no desire to do so, but I would tell your doctor about the headaches and 'pulling', for a medical opinion.  I suspect they are part of the healing process.  I didn't have headaches post-radiation but I did have infrequent 'zaps' of pain at the site of my AN.  They eventually subsided and my one-year MRI (2007) showed that the swelling had finally gone down.  I'm good now, some two years out.  I trust you will be too. 

Thanks for visiting, signing up and posting.  We look forward to seeing more of your messages as you continue the healing process.

Jim

[mk]

Hi Martin and welcome

Wow, you bring up a lot of issues.
As Jim pointed out we are not doctors here, but it seems to me that everything you are describing must be associated to some swelling that you are experiencing post-radiation. At this size (which is on the medium-large side), even a tiny amount of swelling would affect a lot of things, like the trigeminal nerve (giving you the altered sense of touch and taste), and the facial nerve (resulting in the twiches etc.). Such symptoms may be due to the radiation causing some damage to the  nerves, or due to reduced blood flow to the nerves due to swelling. In the latter case, a short course of steroids can help immensely, so I would recommend you contact your doctors to discuss about this.

I hope that this is all temporary and your symptoms will resolve soon.

Marianna

[sgerrard]

I just posted this in another topic under radiation treatment, but it is worth repeating it here, as it might help put Martin's issues in some perspective.

This is a link to a recent post by JB, who had some major swelling, and did rounds of steroids to control it. He was mainly experiencing hearing nerve issues, I think. He has some nice MRI pics that show the swelling, and eventually the going-back-down, over the course of a year.

http://anausa.org/forum/index.php?topic=7234.0

Of course it is best to contact your doctors, but it is true that while post-radiation can be weird for a while, the weirdness usually does clear up with time. There was a post last year where someone recovered some hearing after 14 months. The time frame given at Stanford for swelling effects is any time in the first 18 months.

Steve

[martin_ssd]

Thanks for the many replies.  I think I pretty much understood that what I'm going through has to be due to the tumor swelling.  As much as you can understand this sort of thing intellectually it is sometimes hard to be content with the side-effects.  I try to remind myself that there are folks out there with far worst problems.  While I was going through radiation therapy at UCLA I got to see dozens of Cancer patients come through the same department for far worst problems and in far worst conditions.  I'm sure any of them would gladly take SSD over what they have.

Regarding BOHA vs the through ear solution or a choclear implant, I guess I haven't capitulated with the idea of having a device constantly attached to the side of my head.  Funny I should say that because so many people today walk around with their bluetooth earpiece constantly on (which I'll never understand).  The funny part is that, if ten years ago you walked around with a blue LED blinking out of an implement on the side of your head you'd be labeled a dork!  Times change.

At this point I am leaning towards TransEar.  I just have to figure out a way to have insurance cover it  as I can't afford a $3,000+ device at the moment.  I wish it were waterproof though.

Anyone here with SSD that is into scuba diving?  I've been wondering if there are any problems with equalization.  Normally you can hear the crackling/popping as you equalize, so you know that it is working (even the occasional wistling too).  I wonder if there are any issues with equalization when you can't hear it.  Also, I would imagine that you might not feel any pressure or pain either, right?  I haven't been diving in a long time but I was sort of thinking of getting back into it before I learned of my AN.

The other concern I have is about balance.  I used to sail a lot.  As my kids get older I was always planning on introducing them to this sport.  Walking on the deck of a sailboat bouncing around in the ocean requires good balance.  Not sure I can do that any more.  Haven't tried yet.  I did walk on a floating dock at our local lake several weeks ago and it definitely felt weird.  It was at nigh, so I couldn't see very well.  Maybe that had something to do with it.  Maybe it's easier during the day?

Staying with the maritime theme.  Am I to expect greater suceptibility to motion sickness on boats in general, for example a fishing boat?

Thanks,

-Martin

[Kaybo]

Martin~
Times have changed a LOT since I had my surgery, but 2 main things the Dr. told me I could never do because of the pressure change was scuba dive and sky dive - since you had radiation, it is probably very different, but I think i would ask the Dr. just to be on the safe side!!

K

[Jeanlea]

Martin,

I had surgery and my balance nerve was cut, but I find that my balance has come back almost perfectly.  At night, it is a little more challenging.  I've been on boats in Lake Superior with no problems.  I think I have better balance than the people around me because I'm more conscious of it.  I also have a TransEar.  I didn't want anything permanently stuck to my head, so the TransEar works well for me.  But it's not waterproof.  Although I did have it on during a rainstorm one day.  Took it off right away and put it in its dryer and it was fine. 
Good luck to you.

Jean

[leapyrtwins]

Martin -

I'm not pushing the BAHA here, but you'd be surprised how fast you get used to an implant in your skull.

I had my surgery in early March and was able to attach my processor in early June.  Today it's truly become second nature to me.  There are lots of days I have to actually reach up and touch my head at night because I can't remember if I took off the processor or not.

My abutment and processor are both covered very nicely by my hair though, so it's pretty much out of sight out of mind for others, who are usually unaware that I have the implant.  But in all fairness, it might not be as out of sight for those males who have BAHAs (due to their shorter hair).

If you ever get to the point where you think you might be interested in a BAHA, ask your doc to let you try the demo.  It's very impressive.

Wendy -

I'm assuming the Freedom is just a different processor than the Divino or Intenso but the abutment (implanted rod) would remain the same?  Is that right? 

Jan

[MAlegant]

Martin,
I had surgery not radiation but also had (still do but improving) facial muscles pulling and twitching.  Part of the healing process I imagine.
Marci

[Omaschwannoma]

As Jean says one can get back to sailing, but for me I wonder mostly about the dinghy?  Very bouncy cutting through swells going from boat to shore?  My hubby is getting ready to set sail for a few months or more to Bahamas, and I too was wondering how hard life would be for me on a tilt for days on end, night work on deck, dinghy riding from where you anchor to where you go spearfishing and to shore, working in the rain and wind, "humping" food in backpacks from market to dinghy to boat, etc.  Just curious too if anyone's out there that has returned to "living" aboard cruising.  I know Capt. Deb isn't named Captain for fun. 

.....sitting back waiting for the "real scallywaggs"