I know it's been about 3 months since my last post but I felt it was important to take a few steps back and let the healing completely take over.  I have to say, this was probably the smartest thing I've ever done.  I have never felt so good! Praise be to God that everything has turned out the way I had imagined it to be. I have not had any of the "classic" pain symptoms that I had before the surgery, such as swelling, HEADACHES!!!, neck and shoulder pain, limited opening and pain while eating, yawning, coughing - okay, just generally being awake!

 It has been 4 months since my surgery! Can you believe it? 4 months!! I have been reading over my old blogs and I can't even associate that person who was writing them to the person writing this blog now. It seems like a completely different person.  I have NO pain. None. Not even a little bit, not even microscopic. None.  It's funny, today I was talking with a lady during my kids' VBS and she flat out asked me what measurement my mouth was at before the surgery.  I told her the doctor took a measurement right after I walked into the operating room and I measured at 8mm. Most "normal" people have a mouth measurement at 40mm. So that is a tremendous difference. 8mm is not even being able to get 1finger measurement in the mouth (Try opening your mouth and using your pointer finger as a measurement and not even being able to get that small width passed your teeth!).  Jump ahead to April 1.   This was my first day of Physical Therapy (or rather torture that happens 30 minutes once a week).  My opening FINALLY made it to 10mm. Not bad, considering I had just gotten the wires removed.  As of June 7th at PT, my meausrement (hold your breath everyone!), my measurement was 24mm and was able to be stretched to 28!!! Talk about mind blowing. All the torture, stretching, exercising that I do EVERYday got me to 24. No words can describe....

What I haven't even gotten into is the infection that I developed almost 6 weeks after the surgery. I woke up one day in March with a slight fever, an overall flu-like feeling permeating my entire body. I sucked it up and went through my day. When I was giving the little one's a bath upstairs that night I happened to be looking at the progress of the incisions in the mirror. I noticed the redness, slight puffiness and pain around the left neck incision (remember the left side bore most of the complications during surgery). I just happened to be lightly, and I stress lightly because the incisions were still painful then, squeezing around the area and it exploded with blood and pus. Totally didn't seem to concerned at first until I mentioned it to Brad and he demanded I call Dr. Poor the next morning. Well little did I know that an infection with metal hardware is one of the worst infections a person can get for fear of Biofilm forming over the plates and screws. Cue rapid heartbeat and pulse. Cue the heart palpitations, cue the panic. I was immediately ordered to get my fanny into the car and head to Oakland to see him and have cultures taken. 3 to be exact. That's a lot of pushing, squeezing and grossing out. Turns out Staph may be involved. Cue picc line (google if you don't know what that is) for the next 7 weeks!! I had an IV in my heart for 7 weeks! Ahhhhhhh!!!! Medicine twice a day for an hour each time. Cue allergic reaction to the medication 9 days after starting it, on Good Friday, on my birthday! Happy Birthday to me, we're sending you to the ER. Really? Really?? Would the torture never end? I went to Oncology once a week for seven weeks for them to assess the picc, change the bandages, flush the line,etc. After Oncology, had labs drawn to test kidney and liver function (this was actually done twice a week Mon & Thurs), after labs tortured in PT for half an hour. This went on for 7 looonnnngggg weeks. Then one day, the picc was removed, no more lab draws and I only had to go to PT once a week. Cue happy girl!

All in all, now that my surgery memory has been pretty much wiped away (thank goodness!) I have to say finally having this surgery done was the best thing that ever happened. I even got to experience Texas Roadhouse with my family (Thanks Heidi for being the one to push me to that goal!). I even had steak (with no chewing issues) for the first time in quite a few years. And boy was that heavenly. And I had no pain! How long has it been? 6 years. For the first time in 6 years I don't wake up or go to bed or sit and watch tv or eat or yawn or cough or just be with pain. Nothing. Now I know what I've been missing out on all these years.

Thank you friends for all the support over the past 4 months. I still have quite a bit of healing still to do, but that's nothing compared to what I've already done. And I honestly couldn't have done it without you.

Sherri

Pictures

I don't have any pictures from today but I do have pics from the surgery and some from home that I assume either my mom or Brad took.  Please forgive the doped look on some of these pictures, especially the ones that someone took at home, but that's what I was, doped!



In recovery with my oxygen



Up close and personal

Up for the first time to use the restroom

The resident came in to change the bandages

The bloody left side and all its complications

Right side wasn't bad

Brad took this - as he was gagging!

Finally home!

The day the bandages came off

Doped and swollen

A very upclose look at all the problems the left side had

On The Road...

Three weeks ago at approximately this time (8:10), I woke up from an 8 hour surgery.  It seems impossible to me how three weeks have already come and gone - but I guess when you sleep 22/7 life keeps going and passes you by. In three weeks I have gone from operating room, recovery room, hospital room, home, bed... to surviving my first day on my own with the kids. Granted I'm already dressed and in bed, but the point is I did it. I think the semi-solid foods I've been eating have helped give me a little more energy. And... I've gained back a half pound from the seven I've lost.

As of this Thursday the 8th I will be Arch Bar free.  We are supposed to be in Oakland by 8:30 for the removal process - which according to my doctor we "grin and bear it".  Yeah, that didn't work so well last time so we'll see how it goes. Good thing the hospital is right across the street!  But, Praise the Lord those horrible bars will be gone and I can sleep through the night without the wax slipping and the hooks digging into my lips, cheeks, etc.

Unfortunately I still have no movement of the left side of my face and my eye still doesn't blink on its own, but I've been told once the swelling finally decides to visit someone else I should get those back. (The left side was the side that had all the complications during surgery. It is also the side that hurts the most and it feels like the screws are too tight when I try to do my opening exercises). The no blinking thing really does affect me especially when I'm out in the sun. My eye waters immensely making my vision blurry - especially while driving. I sleep with a sleep mask to keep my eye closed, and wear sunglasses in the sun but it's just not the same as being able to blink on your own.  The things people take for granted!  I've also noticed over the past few days that my skin is starting to peel, especially my chubby little cheeks.  I'm hoping the peeling means the swelling is starting to go down but I can't tell a difference. The good news though, is that I am on the road to recovery, it's only a matter of getting there!

The Past Few Weeks

Well, it's been almost two weeks since the surgery.  While the doctors and nurses I've seen at my post-op appointments have been numerous in their praises on how well I look and how well I'm doing- I don't feel anywhere near like I'm doing good or looking well.  Let's face it - I feel like crap.  Crap that's been run over a few hundred times. I spend about 20 hours (if not longer) sleeping, having someone wake me up every 4 hours to gag down the 2 most vile medications on the planet, given something to drink, and off to lala land I go.  That describes roughly the last 11 days.  With the occasional shower (granted to me by my doctor 8 long days after the surgery).

This has definitely been the worst experience of my life.  It has been painful, tiring, and down right miserable.  I would not recommend it to anyone.  For those who have gone through it and survived (because, right now it feels like a toss up to me), I commend you.  You have made it through hell and back!  Congrats!  While my doctor is sympathetic to the misery, he does say I will still be miserable for another few weeks. Talk about squashing the small inkling of hope that this torture would only go on for another few days.  So, as I sit here sipping my tea and being grateful that I can eat some oatmeal in the morning, I am needing words of encouragement that months down the road this will all be worth it.  This has all happened for a reason and when this has passed I may know what that reason was.  I don't feel very strong, yet God doesn't give you more than you can handle.  I think in my case, this was more than everyone bargained for.  Let the misery continue!

The Pain in the Head

Bi-lateral temporalmandibular replacement occured on Monday, February 13th.  I was scheduled to go in to the hospital at 7:30 am.  We arrived at the correct time but were given the news that the operating room would not be ready at the 9:00 time and was pushed off until 11.  At 11:15 I was taken back, asked another million questions and promptly knocked out.  Surgery lasted 8 hours.  I awoke close to 9:00 pm still in recovery with my husband and parents by my side. It took another 3 hours to get a room.

I could never explain to someone the excruiating amount of pain I have been in.  I have no muscle movement of my entire left side.  My eye doesn't blink, the forehead doesn't move, and my lips are so swollen, I can hardly drink.  I have been wired shut which is completely scraping away the inside of my lips.  Everything is swollen.  I don't resemble myself at all and I look hideous.  Brad says I only look a little worse than my previous pictures but I think he needs to wear his glasses when he looks at me. I have lost 7 pounds since Monday.  An extreme amount of weight in such a short time. 

I don't do much.  Sleep is mostly what I've been doing. My mom is being a great medicine nazi.  No pain meds unless I have a little something in my stomach.  Bleh!  Everything makes me gag.  The antibiotics and pain meds are liquid and the taste is horrendous, yet 4 times a day one or both of them are given to me.  I hurt so much it's hard to see the light at the end of the tunnel.  It's there, just out of reach for the moment. 

The kids are afraid to look at me.  I don't blame them.  There's nothing like a real-life horror movie to look at.  Here are a few pics from recovery. Please be advised I do not look anywhere near my best.




Still in recovery



Still in recovery



Today - Friday, Feb. 17

                                                                                        



Changing bandages in the room




The left side was the most complicated



Just A Few More Days

It seems like the 5 weeks since my original surgery date just flew by.  And now, here we are just a few days away.  It seems like I have nothing done.  With 4 kids there will always be plenty to keep us busy but the last few days I seem to be falling further and further behind.  I still haven't created a meal menu for my mom, I have 5 loads of laundry still to fold, the little ones' bedroom to clean (AGAIN!), grocery shopping for the next few weeks, a basketball game, a tornado, I mean kitchen, to clean, carpets to shampoo, sheets to wash.... the list goes on and on.  However, I did manage to clean out the car.  I don't want to come home in a dirty car. This is probably the first time in my life I wish I had a magic lamp to rub.  I could really use three free wishes. 

What I need to remember for my last day home (we're leaving Sunday) is how much I'm going to miss my little lovies:

Madison (8), our bright shining star who loves to read, draw and be a helper to those around her.

       

Cameron (7), our only boy, who loves sports, video games and torturing ALL the girls in his life!

                                                                                                                                                                                                                                                      

 Megan (5), the one with the sweet disposition, who loves playing dress up and house.  After her 3 month battle with pneumonia last year, we try not to take for granted all she brings to our lives.                               

Katelyn (4), the boss of the family. She gets her way more often than not, but she's cute, so we let her!

    

And last, but not least, Brad.  He's been with me through good times and bad. He's driven me countless times to and from the hospitals, dispensed liquid medication, refilled my ice packs and listened to my complaints.  Thanks honey for everything you do!

A day in Oakland

I had my pre-op in Oakland today.  I guess it wouldn't do me any good to say I went in and out of there just fine- because I didn't.  It was a stressful appointment, but it cleared up some of what the procedure will be like and the recovery.  For my benefit, the doc also drew the incision lines just so I would have an idea of what they might look like.

For the procedure- it will take about 7 hours.  I will be wired shut and will wake with a 50/50 chance of still being wired.  This depends on how "floppy" my new joints are at first.  Two incisions will be made (I'll show the pic of it below): one at the ear and one at the base of the jaw line (or the double chin area).  The ball and socket joints (or more accurately- what's left of them) will be cut out and the new fossa and condyle (ball and socket) implants will be inserted through the two incisions and drilled into the skull and the lower jaw bones.  Approximately 15 screws per side.  This in a nutshell takes about 7 hours.

Recovery will be painful at the incision sites and from the "massive" swelling.  When the doc uses words such as massive, brutal and horrendous, it kinda scares me. We're used to the swelling portion of the whole deal.  I swell up quite regularly in my cheeks and chin area especially when the pain is really bad (see pic below for the double/triple chin swelling I have today).  If I'm not wired, I will need to start working my mouth as much as possible even through the pain.  No pain, no gain- right?  Diet starts as liquid and increases from there.  Soup broth, ensure, runny milkshakes then on to scrambled eggs, oatmeal, real soup, etc.  Anyone want to join me on the "Let's lose 15 pounds Diet"?? I've said this before, and I'll say it again - I don't like liquid diets!

I went to pick up the kids from school after my appointment and Madison and Cameron thought my new face tatoo was awesome!  Megan didn't like it because it was scary and I don't think Katelyn ever noticed it.  Either way, it's going to be a lot more real in 12 days. 

Incision lines- will be a little longer on the lower portion but overall pretty close.  When measured these marks are 4 inches.  The real deal will be about 5 inches in total length - per side = 10 inces of incision.

Maddie was kind enough to take a "fat face" shot for me.  Then she offered to go start a hot bath for me- to see if it would help me feel better.  Love that girl!

Surgery #2 - The second Condylotomy

I found some pictures from my second surgery back in 2008.  This surgery was done in Santa Clara and was the second conylotomy.  The first being done in 2007.  The condylotomy procedure involved making two incisions on the inside of the mouth.  Through this incision a bone saw was used to break the jaw bones and then the mouth is wired shut for 6 six weeks.  During these six weeks you are on a liquid diet.  Which, I have to say is the worst form of torture, ever.  Thinking about doing this again is hard.  Everything you eat is pureed and liquified so that you can suck it up through a straw the size of a coffee stirring straw.  Anyway, this surgery had complications. A nerve was punctured in the face and I was told to give it a year to regain feeling.  After that year, still no feeling. The right side of my chin, the corresponding part inside the mouth, gums, teeth, etc and part of the right cheek still have no feeling and most likely ever will.  Please be advised these pictures are not pretty and were taken days after the surgery when the swelling started.



Don't you just love the baseball looking lump?




The full facial view




I don't need to say how painful this was.




Misery at it's finest.



As this current surgery will have greater risk of nerve damage and facial paralysis, I pray these pictures are the worst I will look.  No matter the outcome of the replacement, I have a team of peeps (my mom, dad and husband) who are under strict orders to take as many pics of the post-op recovery so that I can share my recovery with all of you. Don't you all feel so lucky?

The Adventure Is About To Begin

I've been encouraged by many people to start this blog so that other's can understand the struggles I have been going through and the adventure that is to come.  I have put off doing this for many reasons, first and foremost being - I am not a writer.  It is hard for me to put down on paper (or in this case, a blog) my thoughts and feelings without sounding like I'm complaining or whining.  Talking, no problem.  Writing, problem.

As most of you know, and for those that don't, I will be having a double joint jaw replacement on February 13th in Oakland.  The procedure could last anywhere from 8-12 hours and a night in the hospital.  The company that is making the custom-made titanium implants is located in Ventura, CA.  If you have time to look at their site and at the patient brochure to see what's involved, please do so as it's rather interesting reading  (www.tmjconcepts.com/patbro.html).

I've been experiencing jaw problems for the past 5 1/2 years.  I have had 9 surgeries which include arthroscopic, arthrocentises, 2 condylotomies, and flushing of the joints.  I've been through TMJ classes, physical therapy and a lot of pain.  What's been puzzling to my doctor is the fact that I show no signs of clenching or grinding of the teeth (probably because I don't), no signs of any other bone disorders, yet I have splintering of the jaw bones and hair-like materials present in the joint spaces.  Basically, my joints and disks are completely shot and there are no other alternatives to fixing them expect total joint replacement.

I am ready for this chapter of our lives to be done and the next to begin.  I am tired of the constant pain, headaches, neck and shoulder pain.  I'm tired of being too tired to do things with my kids.  I'm ready to start enjoying life again and eating regular food.  As the days pass and things get worse, I have a hard time imagining what the future will be like with no pain.  When it's a constant struggle just to function on a regular basis, I wonder if I'll remember how to function normally again?  This new chapter in our lives is about to begin and I for one can't wait to see how it turns out.