Newbie from Texas

[texsooner]

Hi folks. My name is Patrick(48 yrs old). I’ve heard on the radio that some callers say “I’m a long time listener and first time caller�. Well, I’m a long time viewer and now first time poster. I can’t say thanks enough for many of the regular people here for posting information that have helped me a lot along this AN journey. I feel like it’s time that I jump out here now and see if by reading about my ordeal that I could possibly help someone much in the same way that many of you have for me. Also, selfishly would like to pose a couple of questions about one issue(extremely dry eye) that I’m still dealing with.

I was diagnosed with a 3.5 cm AN about 4 months ago.  I had surgery to remove the AN on 8-11-08 at Memorial Hermann Medical Center in Houston. My surgery lasted 12 hours and was performed by 2 great surgeons(Dr. Joseph Chang and Dr. Dennis Vollmer).  I was very fortunate with my outcome as I had only slight facial weakness on the AN side(which has improved). I am totally deaf on the AN side, but this was expected.  Since I was doing so well post op and walking around, I was released to go home the morning of 8-13-08(2 days after surgery). After 4 weeks recovering at home, I went back to work for about 6 hours per day and I’m now back working full time(8-10 hrs daily). I truly believe(aside from getting great doctors), having a positive attitude and setting realistic goals are very important pieces in the recovery process.

Before my surgery, I was very active physically(running and road biking). I started jogging about 3 weeks post-op and I’ve gradually worked my way back to running 3 to 5 miles(as I was doing pre-op), albeit about a minute per mile slower than I used to run. I plan to keep working at improving as I’m registered to run the half marathon here in Houston in January. Biking for me, however, is another story because of my dry eye issue. As a result of the surgery, my eye on the AN side does not produce tears. Because of this, my eye is extremely dry and I have to constantly put eye drops in(on average once every 30 minutes) during the day. I’ve used a few different eye drops and have settled on Refresh Liquigel for the time being. At night I use Refresh PM(ointment).

I’m lucky in that I can close my eye without having to force it down. I know I am somewhat impatient, but it has been over 2 months now and I don’t feel or notice any difference with my eye. Is it unrealistic to expect in the next few weeks or months that my eye will start producing tears again and all will be as it was before my surgery? I  keep hoping for this, but wonder how long or if it will happen. I haven’t been to an eye doctor yet, but I’ve read about Restasis and understand that is a product that can help produce tears for some people. I’d love to hear anyone’s experience with Restasis.

As far as the biking, I used to do 50-70 mile weekend rides before the surgery. I can still physically ride, but the wind created by bike riding is almost unbearable on my dry eye. I’ve tried several different wrap-around glasses to try to keep the wind out without much success. I think I may need to look into using some type of goggles that fit tight….I would also like to hear input from anyone on this subject if they have any advice.

I will keep viewing here and now maybe post more frequently, especially if I can help anyone out there from my experience.

Patrick

[Brendalu]

Welcome Patrick!  I live in d***inson,TX and am a three year veteran of this An world!  As I am sure you have noticed there is a lot of support here and lots of questions answered.
You had great doctors as quite a few from Texas have attested to in other posts.  We have a support group meeting in d***inson on November 1, email me fpr details if you are interested!
Again welcome to our group!
Brenda

[Pembo]

Hi Patrick and welcome....I had a 4 cm AN and considerably more facial weakness and my eye movement has increased considerably but the dryness only became slightly better. I ended up with a punctual plug and using Restasis both of which changed my eye incredibly. I suggest you see an opthamologist. Restasis for me has worked wonders. I went from using lacrilube 6-8 times a day to never using it again. I can even wear contacts.  Best of luck to you.........

[Tumbleweed]

Patrick:

Thanks for joining our group and for posting useful information for other people who will follow in your footsteps.

Have you tried "glacier glasses" to keep wind out? These are dark sunglasses that typically have leather or plastic sideguards to keep glare out when traveling on glaciers. I find they also do a decent job of keeping out wind. You can buy them at REI or other well-equipped sporting-goods stores.

Make sure you're eating a diet rich in B vitamins (especially B2) to help nourish your nerves. B2 often helps people who experience dry eyes due to no particular illness, so perhaps increasing this vitamin in your diet might help you. Just a guess. BTW, B vitamin supplements are not assimilated by the body as well as B vitamins in your food. Almonds, trout and brewer's yeast are all good sources of B2.

Best wishes,
Tumbleweed

[Kaybo]

Welcome Fellow Texan~
I am from way north Texas, but my husband's family lives in Houston so we are there quite frequently (that is where my sweet hubby & I met - I was teaching at Sharpstown Christian School after college). I actually had surgery in Houston at Methodist Hospital with Dr. Herman Jenkins of Baylor (however, now he is in Denver).    I have had LOTS of trouble with my eye over the years and would DEFINITELY encourage you to go see an opthamologist - they can do wonders these days.  If you would like to chat - please send me a PM!!

K   

[Omaschwannoma]

Hi Patrick,

Yes, you can still hope for a return of normal eye tears as it took me all of two years before I could taper off of the thick eye gels.  I have heard about punctal plugs doing wonders for dry eye though. 

You should check with your doctors about this procedure as I'm not sure one can have this if still in recovery?  What I wonder is what if you have the "plugs" then your eye decides to correct itself could you have more tears than ever before?  Just wondering here. 

[ppearl214]

Hey Patrick! Welcome! I try to keep up with all the new faces around here in a timely manner... sorry if I'm late on this one.

thank you SO very much for sharing your AN journey with everyone here!  Sounds like you are doing well and sending you wellness wishes! Great to have you here and looking forward to your further participation here.

Phyl

[lori67]

Hi Patrick.

As one who had had many, many eye issues to deal with, I'd have to agree with the rest of the group and say get to a good eye doctor.  They usually have lots of tricks up their sleeves to deal with these issues.  I had a few stitches in the outer corner of my eye to make them look a little more even and had my tear ducts cauterized to help keep the few tears I had in my eye.  It worked wonders!  It works the same way as the punctal plugs - basically just plugging up the drain hole.  Both procedures are reversible if it gets to the point where there is too much moisture in your eye.  The silicone plugs can easily be removed and as long as your surgeon doesn't completely fry your tear ducts when he/she cauterizes them, they can be opened up later on.

After my procedure, I was able to go during the day with no drops at all and I just use the gel at night.  I just had the 7-12 nerve graft a few weeks ago, so I'm just now starting to make some tears again since that surgery, so I had to go back to the daytime routine for about 2 weeks.

I have never used the Restasis, but the commercials say it works.  Of course, why would they make a commercial saying it didn't?     I'd say to ask about it.  Explore all your options - there's got to be one that will help.

Lori

[texsooner]

Thanks all for the warm welcome. Brenda, thanks for the email. Since I'll be out of town, I'm going to try to get my wife to go to the support meeting on Nov 1st to take notes for me.  Pembo, Tumbleweed, Kaybo, Arushi, Phyl, and Lori, thanks for all the sage advice. You guys have been dealing with the eye issues and other stuff a lot longer than I have, so I really value your input.

I just got word today from my doctor's office that my follow up MRI looked good(yea!), but plan to get more details on that next week when meeting with him. I also plan to ask him about seeing an eye doctor(hopefully he can recommend one that has treated AN patients before). I was thinking along the lines of Arushi, in that if my eye had a decent chance or recovering back to normal, maybe I should wait before considering any procedure. My wife tells me I'm too impatient....she's always saying..."remember you just had brain surgery not that long ago"....I do however use that line at work whenever I make a mistake on something(wonder how long I can use the brain surgery excuse?).

Anyway, thanks again.

Patrick.

[leapyrtwins]

Hi, Patrick - glad you've officially joined us.

Also glad that you've recovered so well - with the exception of the eye issue.

Also glad that your MRI looked good - ditto on the "yea".

From other posts I've read on this subject, the eye doctor idea is a great one.  Also, since no one mentioned "onion goggles" here's the link http://anausa.org/forum/index.php?topic=7210.0  Maybe they'll help.

Jan

PS to Lori, good to see you back 

[Debbi]

Hi Patrick-

I'm catching up and just saw your post - belated welcome!  Can't add too much to what eveyrone else has said - other than to endorse the suggestion of seeing a good opthalmologist.  I am still using an external eye weight as I don't have tears yet (5 1/2 months post op).  However, my face is showing quite a bit of progress overall, so i expect that I will eventually produce tears again. 

I have heard good things about punctal plugs - if you google that you'll find some good info.  There are several different types of plugs and they can be taken out later if you don't need them. 

BTW, I use Refresh Celluvisc Sensitive which is a thick drop, comes in single use dispensers (but you can put the top back on and use one all day) which is the best drop I've found for daytime.  I can go at least an hour most days between drops.

Good luck - keep posting and let us all know how you're doing!

Debbi