Smiling More!

I've definitely had some improvement over the last week!! I'm honestly not sure I should've had surgery over the Christmas break because it has been crazy around here and getting rest has been a challenge. (Did I mention that between Christmas and New Year's I also have a child's birthday to celebrate?) But I'm getting through it. My husband, family and friends have been a great help – along with my kids. I felt a little selfish for a few days knowing that it was Christmas and I could not do all things for my family that I usually do but sometimes you just have to take care of yourself.

The only issue I really had is the cut around my ear is still pretty nasty looking and I actually thought I might lose part of it. They assured me it would stay on. Gain a smile, lose part of an ear. It's all relative. I've also had some pretty good bruising on my neck. I think the clerk at the Walgreens might've thought that I was choked or something because she acted really odd. This actually looks better than it did a few days ago. I almost want to wear a little button that says "just recovering from surgery". 

 ( I'm NOT  going to show you my ugly ear. but I did have my husband take a picture of it so I could see what it looked like and send it to the doctor. EW!) 

Last night I thought, "OK, I'm going to try sleeping without taping my eye shut". I lied there for less than 1 minute before I realized that I saw the clock light and my eye was open. Luckily, I found some amazing tape that doesn't rip my skin off every morning. It'll happen, eventually. 

My tongue is still a little numb but I did not have an operation to correct that because it is too deep of a cranial issue. I think the taste buds are coming back a little bit each week. Although, I'm not sure if being able to taste carbs again is a good thing!  

The best news is is that my friends say my eyes look happier and I can tell that the right side of my face is more relaxed and there is movement on my left side. I went out today grocery shopping and for the first time in four months I felt that I could actually just give a little bit of a smile to people passing by me. 

Here's me – no make up. A little tired from my daughter's birthday festivities but I'm hanging in there. Each week gets easier and the swelling goes down more.

I think next week I will post a little survival guide to having bells palsy. There's some things you always want to carry with you when you are going through this. I do think there needs to be more research as to why this happens to people, why the recovery is so different for everybody and help for the psychological effects that it has on a person. Thank goodness for support groups.

Happy New Year!!! May 2016 be healthy and happy! Counting my blessings, and there are many.

Ox 

The Reveal

There will be a slightly graphic picture. Not that horrible but if you don't like the site of stitches then squint as you read. 

I will honestly say that the first day after surgery I questioned my sanity about having this done because my face and body hurt so much. And I know that sounds selfish considering how badly I wanted the surgery. But when you are in that much pain, you will question your sanity. Today (4 days later) I am much happier and not in pain and would highly recommend it. I'm still tired and my face is still swollen but I'm slowly returning back to my normal. I'm thinking that in a few months I may even have a newer normal.

Here is a post operation picture. Pretty much right after I took the head wrap off. I think my face expanded by three or 4 inches when I took it off. It was holding all the swelling in. I looked in the mirror and I was a little shocked at first. No, I am not giving you a picture straight on because that is just a little bit too revealing.

You can see that I have about a 3 inch incision on my neck and that's where Dr Boahene did the muscle release for the synkinesis. There is also a cut right on my hairline by both ears where he did the nerve transfer and nerve testing. In front of my right ear there is a Steri-Strip with a stitch that is holding up a nerve out of my face which Dr Kim actually ended up snipping today. It relaxed my face a little more and helped with the bunching up.

You can't really see the stitches on either side of my ears. But I could tell you that when they took them out today I felt every bit of it! Thankfully, I had my sister-in-law Donielle's hand to squeeze really tightly while she assisted the nurse. (And thank you to my "Uber driver" Donielle,  who spent seven hours with me today getting me there and back in some of the crappiest traffic!) 

Now for the reveal.....

There is still a lot of swelling in my face (it's given me and very big second chin! ) but  I am SUPER happy with what I am seeing!!!!!! The right side of my face looks so much more relaxed and it feels so much better. It's not like a balled up fist anymore. The left side is getting movement back in my lips and in 3 months either the new one will take over or my seventh facial nerve will have regenerated more and show even MORE movement. In January I might have some Botox injections to even things a little more. The more movement I get in my left side will help it not pull to the right.

For those of you who suffer from Bells (and I know there are many because I see you on support groups) Don't take the word of just one neurologist go seek out someone who can help you. They are out there!!! You want to see an otolaryngologist.  I know without another major surgery (muscle transfer), which I probably will not have by choice, I will not get my toothy smile back. I'll be honest with you, I'm 50 years old and I'm not sure that I want to go through that much more pain, I just want to show a happy face. So when I can give you a nice even Mona Lisa smile then I will be EXTREMELY happy and live a very peaceful life and I will enjoy having my picture taken once again. 

Merry Christmas, happy holidays, happy new year and love to you all!!!! Thank you for all the meals, constant concern, gifts and visits. Your belief in me and my family has held us up so that we could get through this. I am ready to celebrate a New Year!!! 

Ox

Mia

I look like Jacob Marley

Do you know who Jacob Marley is from a Christmas Carol? Well, that's  me...

Surgery started at 1 and was almost 6 hours long. That's probably is why I was so nauseous after surgery. I was full of anesthesia. They actually took video tape of me before the surgery saying and doing certain things so they could play it on a monitor while he operated. 

My surgeon and I agreed that the eye weight wasn't necessary because as of this week it's blinking better. I was a little worried at first that he wasn't doing it but after waking up this morning I thank goodness he didn't. I don't think I could take that on top of what he did. As it is, I cannot wear my eyeglasses (ears are covered)  so I put my contact lenses back in. If he had operated on my eye I basically would be blind until this head wrap comes off. Maybe I'll let imy daughter decorate it today. I think it needs some ornaments.

On the left he did a nerve reassignment, which included testing the 7th facial nerve. It is sending signals but as a back up he gave it a bit of another nerve. In about three months we will either see the new nerve take over or the older nerve regenerate itself.

On the right he did a neck muscle release which apparently is a good 4"-5" cut on my neck. I can't tell how big it is because of the head wrap. Then they tested the 7th facial nerve on that side and found 2 branches that were causing the facial stiffness. He cut one but left the other pulled up above my skin with a suture. He wants to see what the first cut did before he decides to cut another. We definitely wouldn't want any more droopiness. 

Unfortunately, I woke up in recovery sick to my stomach, no, let me rephrase that. EXTREMELY sick to my stomach and I ended up there for four hours. My son suggested that I stay overnight in a hotel in Baltimore after the surgery. I thought about that but I really wanted to wake up in my own bed this morning. Even though the ride was a rough hour and a half, I was pretty out of it and I am happy to be home right now.. 

My throat still hurts from the intubation and medications are kinda doing their job but it is nerve pain. It needs to chill.  It's hard to talk but I'm sure the next few days things will get better. I can honestly say that it  is definitely more painful than I thought it would be.

My daughter greeted me with a get well poster and some hot green tea, they tucked me in and took great care of me last night. Right now I am the queen of the palace.  Hmmmm.... I might have to stay in pain the whole week! The kids ARE home!! 

I'm glad I can share my story with you. I'm glad I made it through surgery. I definitely thought about that. I could not say enough about how well I was treated at Johns Hopkins. The entire experience; caring and concern from the staff was amazing. And they are so stinking efficient. My recovery nurse took care of me nonstop for four hours and was so calming the  entire time. 

OK guys, meds are setting in and it's time for this girl to rest. Enjoy your day!! I will be watching some stupid TV but HEALING!  

Oxoxox

APPROVED!!

My insurance thankfully approved my operation after a peer-to-peer consultation with my surgeon!!!! My anxiety is gone! Whooohooo!!!! (Now I'm nervous)

Surgery is this Friday, at Johns Hopkins in Baltimore. It is a five to six hour outpatient procedure and we will let you all know how I'm doing as soon as we are able.

I cannot express enough how amazing my family,  friends and this community has been supporting me throughout this. I have had plates of goodies dropped off, offers of fundraising, and continual concern for my health. I love you all very much and consider myself one lucky lady. 

Cheers to a New Year of smiling and health!!!

Mountain in the Road

I'm going to make this brief for two reasons. If I think about it too much I will completely fall apart and that won't serve me emotionally or physically. The other reason is because I only have so much information to go on anyway....

My surgical coordinator called me and said my health insurance has denied my surgery because they believe it's cosmetic. They are going to do a peer to peer consult and hopefully their decision can be changed. They told me 90% of the time it is.

Would this surgery help me cosmetically? Of course. BUT, I cannot blink my eye to moisten in. I cannot see out of it clearly most of the time because of this. I have to tape it at night to keep it closed and healthy. I cannot eat food properly or speak clearly. I am in facial pain on the right side from the sykenisis which has only gotten worse because the lack of the left side working and it's compensating. My jaw hurts after I talk for just about and hour. I can only look at a monitor for so long before my eye goes blurry and burns. This will keep me from a full time income and potentially affect us financially.

I'm not sure what I will do if they say no. My head swims when I think of it.

...so there you have it. I go into the weekend not knowing if I'll have surgery next week or not now. After all the excitement, I feel like I've been punched in the gut.

Back in limbo.....

Let's face it…

It's time I showed you what I really look like. It's hard for me to publish these but it's important because I know it's hard for people with facial paralysis to face the world every day. It's difficult not being able to simply smile, or having to repeat my words because they can't be understood or use a TON of napkins to wipe my mouth because my lips don't want to keep food in. Some people say, "You look great today!" and I do appreciate that but it's most likely that I learned how to contour my face with makeup. It also could be that I've been using my eye cream to tighten my lips as well. Really, I do. When you're in this position, you will try anything to try and look right again.

Again, this is not for sympathy, it's only for your understanding. Some of my friends have never known me before all this happened. Some thought I was born that way. I'm not sure if it's ever affected the way people treat me or befriend me. I would hope not- I know that I could never judge another based on appearance. Especially after going through this. My compassion for people has only deepened.

This is a picture of me, obviously much thinner but before I ever suffered from bells palsy. Showing my teeth and being kissed by my dear husband. Shoot, we were young! (mid to early 20's - he has put up with me for a long time!)

This was just last summer with my Niece where I could give a Mona Lisa smile. I could live with this!

You can see how the right side doesnt quite exactly go up so I would adjust the amount that I'd "lift" my left. Knowing I'd never have a toothy grin was acceptable to me and although I have problems with my eye weeping I never considered it annoying enough to see a doctor about it. I think many of us put up with inconsistencies in our bodies that we could probably fix but except them and move on. You would probably would never have known anything was ever wrong if you saw me at this stage in my life. (Edited: BWAHAHAHA!! I just realized the face my husband is making in this pictures. Too funny. God I love him! )

This next picture is very hard for me to post. But I have to put it out there so not only can you compare the progress over the next year but also show myself that it's OK to be who I am.

I took this picture this morning with a full on "smile" . This is as much as I can move my face.  Like the doctor said we need to loosen up one side and tighten up the other and bring back the symmetry. Now that I look at this picture I really should've gotten those stupid little smiley faces on a stick. Is it too late to ask for a stocking stuffer? 

Part of me wishes I could be put in a coma over the next six months so that I could just wake up and see results. I know it's going to be a long process. But I am so glad that I will be starting this journey of healing next week! 

Crap, I forgot to ask the doctor for a nose job while he was in there! Oh well. 

And here we go!

December 2nd could not come soon enough and getting there that day was nerve racking!! Putting it bluntly, the weather and traffic sucked. What should have taken 1-1/4 hours took 2-1/2 hours. Needless to say, we were late but my doctor's practice was amazingly accommodating and said they were just glad I made it.

I had a feeling the first thing they would do is update pictures and sure enough they did. Thankfully, I was mentally prepared to give them my Mona Lisa smile, grimace, big smile, etc and I didn't get emotional. Unfortunately, as last time, the "look" was still the same and I could tell in the nurses face that she knew nothing changed over the last 6 weeks as well.

My 15 year old son, who is interested in medicine came with us this time. It was the three of us (my husband as well) in the exam room trying not to fiddle with the gadgets. For some reason there is a sink that reminds me of a hair washing sink with a sprayer. I'm not sure what that would be needed for but my son just had to test the sprayer!! I'm thinking, please just don't let the doctor walk in right now. After meeting Dr. Boahene, my son said he could see himself doing this. I think he just liked all the cool things in the room.

The doctor noted a little more tone in my left side and I know I could feel just a twinge of movement on that side of my chin but no movement. He had me smile and smile again...and again...and again....and again to see how my face was working. The right side is all bunching up and the left side is droopy. As he said it in laymen's terms; we are going to tighten the left and loosen the right by taking a good nerve from my face and connecting to the muscles on the left, and then pull some nerves through my face on the right and see what is causing the stiffness and cut it. Then weigh down the eye lid so it blinks. Yeah. When he mentioned the "pulling the nerve through a small hole in the face" is when I cringed. He assured me it would hurt, but I would be asleep and not feel it. (He has a sense of humor as well)

Now let's say it in doctor language: he's going to do a masseter nerve transfer to the anastomsis facial nerve, then suture nerve, (put a) platinum weight (in my eyelid), neuroplasty & transposition cranial nerve, suprafical parotidectomy, ectropion repair, resection platysma muscle and a select neurectomy....I can honestly say when I read that my head swoons and I get light headed. Can't imagine why.

Believe it or not, he said I should be recovered in one week and on my feet in a couple days. It is an outpatient surgery that lasts about 5-6 hours and as a Christmas present to me, he will do it on 12/18, the day before he goes on holiday. (Now I'm tearing up)...This means I will be able to blink right away and that my right side won't feel like a strained muscle all the time and that in 3 mo's my face will start to move. I'll repeat that one   more   time....my face will start to move! And he will help me regain symmetry and a nice natural smile. Okay, I gotta go....I can't see through the tears of joy.