Update (FSR & Translab)

[B]

Update (FSR & Translab)

01/01/2007

Hello again,    Happy New Year!

I have been waiting for my facial nerve function to return to normal after removal of a vestiblular schwannoma (aka acoustic neuroma) and I'm now happy to report that the recovery is indeed happening. There is certainly improvement in cheek and lip muscle movement and the eye is taking care of itself much better, now.

Many of you will recall that my translab surgery by House Clinic doctors in May, 2006, in Los Angeles, was following failed FSR at Johns Hopkins Hospital, in 1999. The most recent MRI images showed significant tumor growth which was confirmed by a few physicians, including Dr. Rigamonte at JHH. And facial nerve damage was becoming evident; there was muscle twitching and the affected eye was abnormal in it's response to threat, it didn't blink like the other eye. So there was no doubt that further treatment was needed and no one recommended more radiation. And no one thought they could save my hearing.

The surgery went well. I recovered quickly and was able to see some the LA area with my sister and daughter. If you ever need this surgery, I'd say go prepared with plenty of eye drops and with a protective contact lens to prevent cornea drying/damage. The nurses did not do enough eye dropping. I should have done more myself. And I was late in acquiring the lens. That was uncomfortable. Maybe I should have had that lens immediately after the surgery.

My face has steadily improved. I recently stopped the eye drops (after about 6½ months) and more recently stopped the night time ointment and taping of the eye (after about 7½ months) and the eye feels good. I have to rub it to facilitate the blinking to work up some tears, now and then.

But the eye strangely produces abundant tears when I'm eating. The tears flow down the cheek when I'm really enjoying a meal. I get some looks.

My mouth looks pretty much normal now with some obvious movement on the affected side when I talk and smile. But the smile is still a little asymmetrical. My work as a speech therapist is back to near normal. I still can't puff out my cheeks or blow up an air mattress (or a victims lungs in cpr) or swish mouthwash without using a finger to seal the weak spot. I can't whistle with my lips, yet.

The tinnitus is still with me, no change there. My balance was only slightly affected. The total hearing loss on my left gives me some trouble, as with anyone with single sided deafness; the sound localization problem causes some weirdness and can be a little hazardous.

I'm to follow up with an MRI in May (one year). We'll see if the sliver of tumor along the facial nerve shows up. They left it, in order to avoid permanent facial nerve damage. And, like I said, the facial function is making a comeback.

Byron Jones, Georgia, USA

[Obita]

Hi Byron:

So glad you turned the corner on the pesky stuff.

Thanks for posting your story for all to read.  Yours is the perfect story for people considering surgery.  It shows how experienced your surgeons need to be to have a successful outcome.  They knew when to quit to save your facial nerve.  Bravo to your surgeons.

My 3 year MRI is in May.  May is going to be a good month.

Kathy

[Dealy]

Boy Byron-did you burst my bubble. I remember searching Internet back in 2005 when I saw your name in the AN Archives and your supposedly FSR success at Johns Hopkins. I remember e-mailing you and you e-mailed back where you were then. Sorry to hear of the failure but the sucess in getting it removed. I am now in your shoes at the start. I had FSR at Johns Hopkins this summer. They used a 25 session protocol instead of the 1 week. I just had my 6 month MRI and all it said was-less enhancement. Have not heard from Rigamonti yet since it is the Holidays. My hearing has gone South-went from 96% to 90%. Most sounds are muffled and distorted. My AN is at 2.4 x2.2 and holding. However I am an NF2. Only one AN was treated-on the right-since my AN on the left was surgically removed 18 years ago-making that ear deaf. I chose FSR because another NF2 had FSR in 2000 and 2001 at JHH and tumors are dead. Also talked to 5 other people that had FSR during that time frame at JHH and tumors are dead. Like you said-you made the 5%. Did the surgeons find in difficult to remove after FSR. You never said in your post. Well I guess you will now only need to consider the sliver they left in you. After 6 months out I still struuggle with tightness in the head-occasional headaches and fatigue alot. Most nights I am in bed by 7PM because I have had it and this body can take no more. Usually okay until mid-afternoon then it starts again. Weather and barometric pressure affects me big time. So glad to hear from you and you are doing well. What a journey-huh. Ron

[B]

Thanks for the responses. My best to all of you.

Ron, the doctors expected that the tumor might be "stuck" to the facial nerve because of the prior radiation treatment and they ended up leaving some of the tumor attached to the nerve, to save it, just a tiny sliver of tumor, they said. It might not even show up on an enhanced MRI. They have done many of these and expect difficulties to work around. It becomes even more important to find highly experienced doctors in that situation.

You said you had 25 FSR sessions compared to my 5, on roughly the same sized tumor. I would be very interested to know if that is what it seems. Have the Johns Hopkins doctors changed their approach, generally? Do you know? Do you know others having the 25 sessions?

The best to you in your recovery and watch.

Byron

[Dealy]

Byron- Their are two other people on this site that I know of that had the 25 sessions at JHH instead of 5. When I was there thre was a man from upstate New York who had only 5 sessions for an AN under 1.5CM. Dr Rigamonti told me they used this protocol to try to save my hearing. The other two people on this site-I do not know the reason they were given the 25 instead of the 5 sessions. Yes it is a new protocol that it seems they are using in some cases. At first they told me 3 weeks and then it ended up 5 week or 25 sessions. Hearing so far is distorted and muffled. I am 6 months out as you can see on my other posts. Last Hearing test was 90% but that is kind of a misnomer. I started out with 96% before FSR. Ron

[ppearl214]

HI Bryon,

thrilled to read your post and updates.  Sounds like quite a tough road for you and do hope that this new year brings you better/wellness.

I know that Novalis FSR doses can go as high as aprpox 25 doses (days). I was also quoted that when I checked Novalis FSR here in Boston.  They claim to fractionate it as such to help prevent damage to surrounding structures and to help with hearing preservation.

At least, that is what I have been told and have read.

Be well, and glad to see you here.
Phyl

[Battyp]

B I'm curious since you're a speech pathologist....with facial numbness which include the mouth, lips tongue, etc...can speech therapy help with work pronunciation?  I have difficulty saying certain words which becomes more noticeable when I'm tired.  I have just been told that the numbness is permanent due to trigeminal nerve damage prior to my surgery.  I used to be a reading teacher but due to the speech problems they won't let me return to teaching.  I have difficulty with blends and whistling.  If I'm real tired I feel like I'm choking my tongue.  When I did the swallow test I was told if talking bothered me not to do it  LOL  It's better than it was but still a problem.  Just wondering if any speech therapy will help with the sounds I'm struggling with.  It gets frustrating when I have to repeat a word and no one can understand what I'm trying to say.  This morning a lady on the phone commented that my speech was shakey.

thanks,
michelle

[B]

Michelle,

I sent you a message. You should see it in your "personal messages" box.

B

[LizH]

Hi Byron, I am like you. I had FSR in 2001. Just this past November I have been told that tumor is growing. This from recent MRIs. To top all this I have been diagnosed with MS. My walking difficulty had been come really bad. My Neorologists want to deal with the MS issue now and then I will go in for surgery in about 2 months to get the AN tumor out. My walking and balance problem started about 3 years ago and I and everyone thought it was from the AN but no, it was MS and we didnt know then.