Six-Month Update (Tardy, so Technically Seven-Month Update)

[Kaybee]

My 7-month anniversary is tomorrow.  And things have improved dramatically physically, mentally, and emotionally!  I had an extremely difficult winter.  By the time I felt better and stronger after my surgery, fall in the midwest was all but over.  And I spent the initial part of my true recovery period in the throes of a cold Indiana winter.  Short days, icy sidewalks, etc.  Not to mention I had full facial paralysis which made me look and feel extremely grumpy over the holidays.  My eye was partially stitched shut so it felt more like Halloween than Christmas.  During this time, I did a lot of reading on the forum but did not feel I had made it to the other side to offer much perspective or counsel to anyone.  I'm happy to report now that I have.  I got a lot out of these recovery updates and I hope this will do the same for a new poster one day.

The high- (and low)-lights of the last 7 months:
Surgery:  I had a successful surgery.  The surgery was a lightning fast 6 hours for me and the outcome was complete resection (in the opinion of the surgeon) and preservation of the facial nerve (as well as stimulation post operatively at low stimulation).  I had no CSF leak.  My incision healed beautifully.   I have no post-operative headaches.   My surgeons were phenomenal but I could not see past my facial paralysis.  This branded my surgery a failure in my eyes.  I share this because it's so important to feel comfortable and confident in your surgeons and the surgical plan.  My tumor was large (almost 4 cm)  when found and I felt like I did not have enough time to do all the research I wanted to.  I felt confident in my surgical team but I only found this forum and other information after my surgery.  So I spent several months concerned I had not done enough research, questioned my decisions, questioned my surgeons, etc.  It was an incredibly difficult time.  You have to be at peace with your decision and understand even the best surgeons don't always have flawless outcomes. 

Hospitalization:  Understand who is in charge of your care in the hospital.  I really struggled to understand post-operatively who was in charge.  I was in the hospital 6 days and the first 2 were just resting.  However, once they get up  and trying to move around, there are therapists, other physicians, and nurses all weighing in on your status.  It becomes unclear quickly who is making decisions on your behalf.  Consequently I ended up in a rehab hospital for 1 week post hospital discharge even though my surgical team was prepared to let me go home.  The rehab hospital didn't really understand my condition and I was treated more like a stroke patient there. 

Vestibular:  My balance was awful!  I strongly encourage vestibular therapy to those who are really struggling.  I was completely unsteady on my feet and very weak. I did not eat for several days due to vertigo.  Vestibular therapy changed everything for me.  Yes, there were many things I could have done at home and probably would have recovered okay without seeing an actual therapist.  My therapist was a god-send in my opinion and really motivated me to keep up my exercises.  Now, I'm about 80% of where I was.  I still clip walls occasionally and don't have much balance with my eyes closed in a compromised position (standing on one foot for example).  But I still work at it and have just started with Wii Fit.  I don't see my therapist any more but did for the first 3-4 months and found it helped me physically and mentally immensely.  There are many things you do not have control over in your recovery.  Balance is one area where I did have control and it felt great!

Facial:  Whew, this was a doozy and I was not prepared for the toll this would take.  I always felt smiling was voluntary.  And when this is taken away, it can be emotionally devastating.  I have seen some movement in the past few weeks after nothing for 6 months.  My eye continues to be an oil slick (as someone here has described it) due to the Refresh PM.  But my cornea is healthy and I have standing appts with my opthamologist.  They have gone from every 3 weeks though to 3 months.  Refresh PM or Lacrilube are what I use.  Refresh PM is a bit cheaper and easier to find.  I use Refresh liquigel if I need some immediate moisture if I'm out and about.  I only know one thing:  If ANs do have a connection to cell phones and the incidence of them in the population begins to rise, I'm buying all the stock I can in Refresh.  Emotionally, I'm much stronger because of this although coming to terms with it was one of the biggest challenges I faced.  Facial paralysis is devastating but if you develop it, you have to accept it.  During one of my really low points, my mom told me "I know this is hard but what are you going to do if it never comes back."  At that point I knew, I was going to have summon all my innner strength to accept it and move on with my life.  I could not be an emotional wreck every day.  When I went back to work, I told all my co-workers what had happened to me and the subsequent facial paralysis.  I told them they could ask me anything about it and I share with everyone my excitement at any improvements.  It helped me at work...you know, discussing the elephant in the room.  I think it's made me and everyone else more comfortable with my paralysis.  Because I brought it up and just moved on.  As have they...

I realize this is long but hey, it's taken me 7 months to pull myself together.  Allow me a few paragraphs! I am grateful for all the love and support I have been shown.  I am awed by the human body's ability to recover.  This has happened to me and I don't have to like it but I do have to live with it.  But I'm fortunate to have been blessed with wonderful family and friends, inner strength, and a good sense of humor about all of this.  With those things, I can get through anything.  My dear grandmother passed away a couple of months ago and she struggled with so many diseases that I hope I never have to face.  And she did it with a smile on her face, taking each day as it came.  I wish the same for all of you.  Thanks for reading!  All my best,
Kaybee

[jennifer7]

Thanks for sharing your story, it still amazes me how some people fly through this surgery and others have a harder struggle with recovery.
I went to Alabama for a month after my surgery to avoid the Michigan winter, I'm sure trying to get outside with balance issues in the winter was very hard for you.  I'm thankful I only had to worry about it for a couple of weeks. 
Wherever we are in recovery it helps to find a positive side and I'm glad you've been able to do that.
Hope your facial nerve continues to improve.
Jennifer

[sgerrard]

even the best surgeons don't always have flawless outcomes. 

Absolutely true (and also for radiation treatment), especially with a 4 cm tumor. There is not a single AN doctor with a perfect track record.

It is great to hear from you, Kaybee, and it sounds like you are doing better. Here is wishing you continued progress and recovery. I bet you will be feeling even better at the 1 year mark, and better still at year 2.

Hang in there!

Steve

[Jim Scott]

Kaybee ~

First, I want to compliment you for your modest, realistic comments explaining that you've been reading the forums but hesitated posting until you felt you had gained some perspective that would allow you to offer advice and support to other AN patients.  I'm so glad that you now feel that you have something to offer, because your articulate, cogent message is very helpful and does offer a 'real-world' view of 'life after surgery' when things don't turn out quite the way you expected. 

It's clear that you were able to struggle through your initial problems and have managed to come to terms with your ongoing facial paralysis in a positive way.  I salute you for that!  Facial issues are often the worst AN post-op problem (right next to intractable headaches) and you've dealt with the pain of disappointment and loss and are working toward normalcy, as it happens.  You've faced the fact that if your condition doesn't resolve, you'll not allow it to dictate your attitude for the rest of your life.  Obviously, this is a very healthy, mature way to deal with a problem like facial paralysis...not to let it define or control you.  Easier typed than done, I know, but you seem to have surmounted the challenge.  Kudos to you!

Your comments on your hospital experience were illuminating.  I didn't have that kind of experience.  My highly-respected neurosurgeon had control of his patient's well-being and I was discharged when he wanted me discharged (he said that I was breaking all the records for healing/recovery) and I was home barely five days after I had been admitted to the hospital.  My wife, Tina, was also with me most of that five days ( she slept in the hospital for 2 nights ) and was a vocal advocate for me, in her usual sweet and pleasant way, of course.  I believe her presence helped me in many ways but most of all, it gave me peace of mind.     

As someone known for being (ahem) occasionally loquacious, I hasten to add that you need not apologize for posting a thoughtful, comprehensive message that intelligently explains your post-op experience and how you've dealt with the unexpected deficits you've encountered.  You've likely helped some other AN patients with your post, Kaybee and for that, you should be pleased.  No apologies necessary.  In fact, my thanks to you for taking the time and thought to post your effective message.  I wish you continued improvement in your facial paralysis and a great post-op life because you've earned it. 

Jim 

[Tod]

Kaybee,

I can empathize with much of your experience. I especially understand the question about who's in charge while you the hospital recovering. Fortunately for me, everyone knew that the surgeons were in charge. Further, I learned also that the rehab began to delay my treatment in order to "fail me" to justify a week or two in rehab. They were a bit nonplussed that I spent only one night in a regular room after two weeks ICU before being released home. However, I had no ill will toward them, they were really quite concerned about my well-being and it showed in everything they did.

Would a week or two in rehab have helped me? Probably. But I was so desperate to go home and be comfortable. And I knew I still had reserves of strength that had remained untapped.

While the rehab stay apparently was neither what you wanted nor perhaps exactly what you needed, I hope it was helpful.

I think it is very helpful for you to be so open at work. I think that makes a positive difference. I had established  a CaringBridge page to allow folks to follow along. Many of my colleagues still do, despite the fact I have been back at work at three weeks now.

It seems to me that you have done quite well, all things considered. We each have different journey with these things...I hope yours moves along more quickly towards healing.

Best to you.

Tod

[moe]

Kaybee,
Thanks for sharing your update. The first year is tough for some, easier for others. You seem to be doing very well.  At 7 months, you have lots more time for improvement in the facial paralysis category.
 There was just a lot coming at you, and it takes time to soak it all in and get a grasp of what happened.
And posting may be cathartic for you too. Feels good to get it out.

I woke up with complete facial nerve cut, eye stitched half shut (not until a couple weeks after surgery) ,-NOT planning for that!  I have gone through the roller coaster of emotions with the loss of the smile/lack of facial function. . I didn't join this forum until about 18 months post surgery, because of family/military geographical separation and just trying to survive.

When I did join, I posted the LONGEST post, just to get everything off my chest. It felt great....

Anyway, sounds like your facial nerve was intact? And you are seeing some movement? So that is good. It is hard to be patient I know, so I won't tell you to be patient!
I recently had a very  intricate surgery to restore smile and facial function after 4 years of facial paralysis.  I understand the importance of the smile. It was a part of who I was. And I always have said I will NOT give up on getting my smile back. Right now I'm waiting for 3 months for nerve innervation to transplanted muscle in the cheek.

Hope you continue to post and let us know how you are doing, and how your face is progressing. Once you get that little bit of movement, I have heard it is GREAT feeling, right? Keep trying to move those muscles, your smile will come back! Think pos!!
Maureen