Had surgery on 4/5

[micca82]

Hi everyone
I just had the surgery to remove 5cm AN On 4/5 and wanted to post an update.

Dr. Tamargo at johns Hopkins was able to remove all of tumor and my facial nerves were preserved. They are thinned out and I do have facial paralysis right now. At least my face is symmetrical at rest. (does it droop over time? ) I hope my face comes back over time.

The surgery was 8 1/2 long. They initially thought it would take about 12 hours to remove tumor and do nerve graft but since my nerves were kept intact my surgery didn't take as long as anticipated.

I am using a walker to get around the house now. The doctors implanted platinum weight in my eyelid. When I use both eyes to look, I get double vision. Hopefully that will go away when swelling in my brain goes down.

Thank you all for your prayers and support. Maren(I got to know her through this forum) visited me while I was at the hospital after surgery and Kris sent me emails to check up on how I was doing after the surgery. I've never met these people before and yet they were so kind. Thank you thank you and thank you all.

[lori67]

So glad to hear your surgery went well!  Sounds like you had excellent results with such a big AN.

If your face isn't drooping now, it probably won't.  Hopefully it means there's a little bit of juice flowing through the facial nerve and it's just going to take a little healing time for it to get stronger.  Nerves heal slowly, so don't get discouraged if it doesn't happen as quickly as you'd like it to.

There are a few others here who had double vision after surgery too, so hopefully one of them will have some helpful hints for you to deal with that until it resolves.

Here's to continued healing!
Lori

[CHD63]

It sounds like you are doing so well at three weeks out.  You had a whopper of an AN so your recovery is remarkable!  Many of us had double vision for a couple of weeks post-op, even without a weight in our eyelid.  I did for about two-three weeks after surgery and my AN was half the size of yours.  I think you are right that it will be better when all of the swelling goes down.  You are still in the early stages of recovery.

Many thoughts and prayers for a continuing smooth recovery.

Clarice

[lauralynn]

It's great to hear that you are doing so well after having such a large AN removed.  I had a 4 cm and my face did droop at first...so I don't believe yours will if it hasn't already.  I had to have a gold weight implanted since my eye nerves were all numb.  I use genteal gel to help it  when it is feeling irritated...I always put it in just before bed too.  I do daily facial exercises to work the facial nerves...I believe this has helped me also.  Sounds like you are doing great!  You did have an extremely large tumor so for those nerves to wake up again will take some time.  I also had double vision which was quite annoying.  When I spoke to people I couldn't look at them because I saw 2 of everything!  It did go away pretty quickly. My double vision occurred after the AN surgery and went away before I had the gold weight implanted.   When is your follow up visit with your doctor?  Write down any questions that you can think of so you will have them ready for your appt.  And of course you can always come here with any questions too!     Please keep in touch.

God Bless,

Laura Lynn

[Jim Scott]

Hi, Michelle!

I'm so pleased to learn that your surgery went well and that your recovery is progressing nicely.  I want to assure you that, in most all AN post-op situations, things improve over time.  The double vision is very likely temporary.  Like many others, I experienced double vision for a few days post-op (in the hospital) but it disappeared by the time I was ready to leave.  I'm confident that your double vision will abate, too.  Achieving facial normalcy may take a bit longer but time and patience (perhaps therapy) will all help speed the day when your facial issues are passed.  Your gratitude for the help the folks that use these forums have given you is most appreciated - and of course, you're welcome. 

Jim

[micca82]

It always feels good to visit this forum. I don't feel so alone.

Question- what are facial exercises can I do?

Because of double vision, I try to keep the bad eye closed the most of time and my eyelid weight helps me keep it closed. I wonder if not using the eye like this will weaken eye muscle. Should I use it or just use it when double vision goes away? Any advice?


Thank you.

[cherrypiper]

as the swelling goes down, and the healing takes over things will change. sometimes better sometimes not so better.

 But i do know , 3 1/2 yrs from my AN it was about 1/2 your size at best. and it still took about 1 year + for most symptoms to show up let alone solve or stabilize.

Remember this is MAJOR surgery, going in there and getting these tumors. so relax a bit , maybe keep a journal of what you think is going on every week or so, like when something "new" shows up or something "old" goes away........

i am pretty used to what i have now in the way of side effects. and i still would do it again......