Surgery went well...glad it's over!

[Pol]

Hello out there
I had surgery on 5/23 and everything went well. I have a pretty bad haircut (covered nicely by a scarf) and a slightly droopy face. Both will improve with time. My face is better already so I am confident that once the facial nerve heals, all will be back to normal. THey did a 'partial resection' and were able to remove 85-90% of the tumor. Best of all, the trigeminal neuralgia I've been dealing with for the past 9 months is completely gone!!

I must sing the praises of Dr. Bojrab and Pieper. They were a great team. Dr. Bojrab does not use stitches on the skull incision. He has found that the skin natrually comes together.

THe worst symptom I am having is dealing with the eye irritation. I have been using a bit of eye ointment every 2 hours or so which seems to provide better relief than the drops. I can close the right eye but it doesn't occur naturally. I am seeing an ophthalmologist pn Sat just to make sure I am doing all I can. Any words of advice on that? It's hard to read for very long periods of time.

I am also dealing with 'foot drop' as a result of the compression stockings. THey (or my position during surgery) caused an irritation of the nerve which prevented me from flexing my foot. I saw a physical therapist last week and the exercises she gave me are helping. It's been an aggravating complication and has slowed me down a bit.

I'm pretty slow moving and don't have my usual energy level. I know that will come with time. If I can keep myself busy that will help!

Thanks again for your support. YOur tips were helpful.

Polly

[Boppie]

Polly,

I can only suggest you use shaded dark glasses outdoors at all times, and keep up with the thicker lube until you see the doctor.  Take care to not poke around at your eyelids to peek at the eye.  You don't want to irritate the eyelid edges and create more problems.  Don't touch near the tear duct in the corner.  I had a little trouble with the thick lube getting my eyelashes all bent up and stuck together.  A warm wash cloth held gently on the closed eyelid helps to cleanse and unstick lashes.  I am glad to read your post. 

[lori67]

Hi Polly!  Welcome to the bad haircut club!  You find creative ways to cover it up after a while!

I think the best thing you can do is to see an opthamologist to make sure everything is okay.  I didn't see one until after I had already scratched my cornea pretty good and was in excruciating pain.  If I had gone sooner, I probably would have avoided that.  He or she will be able to tell you what you can do to protect your eye and to keep it comfortable until the eye starts to blink again.

I'm glad your surgery went well and your facial nerve is already doing better.  Your energy level may seem to take a while to come back to normal, but be patient...it'll get better.  Keep up with those foot/ankle exercises.  I had foot drop after an ankle surgery a few years ago and the exercises really helped.  And you should ALWAYS listen to your PT!  And your nurse..  guess what I do for a living?  he he.

Continued healing to you!  Good luck with they eye!
Lori

[Boppie]

I want to add some ideas on reading.  For now you'd do better to look at things further away than text reading distance.  Trying to focus on type might give you headaches, especially since one eye is trying to do all of the work.  Maybe you could enjoy pictures like magazines.  At least you wouldn't be working hard to fine focus. 

I wish you well and will pray that your healing is rapid and the eye problem will be over soon. 

[er]

Hello Polly.

Congratulations on your good recovery. I would only add one thing to their suggestion. It helped me to also wear a patch over my left eye. The sunglasses worked beautiful but when my eye got irritated I wore the eye patch. but I also had a gold weight that I wore for 8 months. Stick to larger print until you are able to read.
eve

[leapyrtwins]

Polly -

thanks for sharing the good news.  I'm confident the eye issues will get better in time. 

I've never heard of no stitches on the skull incision and it sounds very interesting.  Can you elaborate a little on this?  I'm very curious.

Jan

[sgerrard]

Polly,

It is good to hear that you are doing well. Losing the trigeminal neuralgia is a particularly good development, you must be happy about that! And it sounds like your facial issues are temporary, if you are already seeing improvement in just a few weeks.

Listen to the others about taking care of your eye. I saw a presentation by an ophthalmologist at an AN meeting; he was adamant about moisturizing the eye.

Take care, it will get easier every week, and the toughest part is already behind you.

Steve

[Debbi]

Hi Polly-

From one droopy faced, non blinking eye gal to another -  just one word - drops!

I saw an opthamologist Saturday and he didn't have much to add to what I am already doing. 

Like you, my eye won't close all the way, so keeping it moist is very important.  I have experemented with lots of different products and have found several that I really think work best for me.  (And, thanks to several on this forum for their recommendations).  Here are the products I like best:

Refresh Celluvisc Sensitive Gel - this is thicker than most single use drops, and really seems to work well for me
Reresch PM - when I need something more and don't mind my vision being really fuzzy
Pura-lube - still works the best at night, along with a patch to keep the eye closed
GenTeal Gel - this is my second favorite for daytime use, after the Celluvisc

You may already have tried some/all of these - or may have your own favorites, so these are just FYI.

And, as Boppie said - sunglasses!  I went out and got the biggest pair I could find - I fancy that I look a bit like Paris Hilton (on a really bad day) now with my gigando glasses.  It helps, though - both to protect the eye from sun and from wind.

Mostly, be patient.  I have days where I get so annoyed with this whole eye thing, but I keep telling myself that my nerve is just pouting and eventually I'll get my blink and my smile back.

Debbi - trying to wink at you!

[Pol]

HI
I know...it's been a long time. Sorry. Thanks for the responses, especially yours, Debbi, and good info. I get more info here than I do from my doctors, that's for sure.

I am doing well. My balance is not too bad --I guess i will always be running into things and tipping over. The SSD is not bad but am not sure if I want a trans ear or BAHA. I've read some posts on both and sounds like they are both good.

The eye is better mostly because I am putting drops or ointment in hourly. I am going to try some different drops that you have recommended. I am using the Refresh and Similasan because they don't have preservatives--just felt that would be better since I am using it so much. It still doesn't close all the way but I think the blinking is better. I see the eye MD next Mon. And yes, always sunglasses--usually the dark wrap arounds & I switch to my glasses when inside.

I am cycling with a contact lens in my left (good) eye and very dark wrap around sunglasses to keep the wind out. We stop at least every hour so I can "goop up" with ointment. That seems to work well. I am probably going to get the prescription wrap around glasses for sports. I usually wear contacts but then have to use reading glasses which is a hassle.

The tinnitus is worse and I am going to see an audiologist tomorrow for an evaluation. They have a program callled Tinnitus Retraining Therapy. I hope I qualify--I think there are others with much worse tinnitus than mine.

The facial numbness is the same--that I could live with if I have to. The dropping is getting better I think. Everyone says it really isn't noticeable. I am still using a straw to drink except for wine (I refuse).

I have my 3 month follow up MRI in a few weeks. Oh, how I hope that tumor will just go away.  I will be better about checking in and let you know the results.

thanks again...this is a great support network.

Oh, and leapyrtwins--Dr. Bojrab finds that once the dura is stitched up, the scalp skin comes together on its own usually. I just had the big fat dressing for 1 week. The incision is barely noticeable--the haircut was much worse!!

Polly

[Jim Scott]

Hi, Polly:

Thanks for the update.  Please accept my somewhat belated congratulations on your surgery.  I'm sorry you have these complications to deal with but they are going to be temporary and I'm impressed by how you seem to be managing everything quite effectively.  I believe, for me, anyway, you're the first AN patient I've ever come in contact with that didn't have stitches to close the surgery incision.  I'll try to remember to mention this to my neurosurgeon when I see him on Friday because I think that's a great step forward in AN surgery.  It eliminates one step of the procedure as well as the removal of the stitches, later. 

I'm sorry about the bad haircut, too, but hair does grow back.  I'm sure, like many folks with AN surgical complications, you look better than you think you do. 

I hope and will pray that your 90-day MRI shows 'no tumor'.  Meanwhile, we're all rooting for your recovery to accelerate so please stay connected.

Jim

[sgerrard]

Hi Polly,

Nice to hear from you, you sound good, despite all the annoying symptoms and special measures you have to take at every turn. Keeping your spirits high and being patient will serve you well. Fingers crossed for the MRI.

Steve

[leapyrtwins]

Oh, and leapyrtwins--Dr. Bojrab finds that once the dura is stitched up, the scalp skin comes together on its own usually. I just had the big fat dressing for 1 week. The incision is barely noticeable--the haircut was much worse!!

Polly -

this is very cool    I've never heard of it before.  Wonder if it's something new.

Thanks for updating us.  It's great to hear from you 

I'm a very enthusiastic BAHA patient, so if it's a direction you think you might want to go in, I can answer any questions you might have.

Hang in there,

Jan

[Debbi]

Hi Polly-

Just an addition to the eye-care info - I got fitted for a Blinkeze external (removable) eye weight several weeks ago and LOVE it!  It is a bit awkward learning how to get it in just the right spot - but it allows me to close that eye and blink which is wonderful.  As a result, I only have to put drops in my eyes every few hours, even when I am outside.  It's made an enormous difference for me and I plan to use it until my blink comes back.

Hopefully, your eye issues will resolve quickly - I'll keep my fingers crossed!

Debbi

[wendysig]

Hi Polly,
Congratulations on all your progress!  I never heard of absolutely no sutures for the incision but if it works that's great!  My doctor didn't use any external sutures only internal dissolving ones that I too had nothing to remove.  The rest of your progress sounds like it is getting better by the day, in no small part due to your wonderful outlook, I'm sure.  I hope you continue to have a wonderful recovery.

Wishsing you all god things,
Wendy