Movement Has Occured 4-5 Mnths Post-Op!

I am excited to announce that my paralyzed cheek is moving!  Not much, but so much more than it used to.  Every day is showing a stronger muscle.  Now I believe the surgeries were a success!  The 80% chance has turned into 100% because I can feel the muscle tensing when I smile, yawn, flare my nose, etc.  Now, I just need to continue strengthening what movement I have, which is mainly in the lower jaw, outer cheek area from what I can tell.  It is really amazing to feel this movement, when I had nothing for three years.  Really, really great!  The Dr. told me that within the next 6 months I will see much improvement.  Again, I hope this success helps give hope to others suffering with facial paralysis.  Never give up trying to achieve what you deserve even if it means surgeries, pain, and much patience.  That is better then the feeling of hopelessness any day.

 

 

Been a While

Well, Hello!  It has now been four months post op from the second of two Cross Face Nerve Graft Surgeries.  Although things are slowly moving along, I have had a few hold ups. 

One, I found out I am pregnant.  What a process and I am finally over the first trimester, so I no longer have morning sickness, which is such a great achievement I feel.  I am now excited, rather than scared with these few months of soaking it all in.  Life was on hold for a few years and it feels good to take this giant step.
  
Second, after three months of waiting,  I was not seeing or feeling any signs of improvement.   The swelling takes so long to subside and I was feeling tired, helpless, and defeated.  Is this really going to work, I thought?  Am I being fed all these ideas of smiling again when in fact, I will never?  So, with some research, I found a Rehabilitation Psychologist.  The process has been really helpful and I am learning to let my light shine and accept myself right now, at this part of the process because who knows if I will look better and when.  I have also had help to realize that I do look better than I did and I should be able to start living life like I used to to some extent.  If I feel normal and hold my head up high, others treat me more normal, and I leave the situation feeling proud of myself for being the happy go lucky person and not an awkward wierdo.  I have tried it out and it works. 

The Psychologist explained that I show some signs, not all, of Post Traumatic Stress Disorder.  It feels good to associate myself with a category so that I could understand my minds issues.  What I have been through in the last few years has been hard and I find it easier to find bravery knowing the associations to a traumatic life experience.

So, on to some pretty exciting news.  My cheek is twitching right near the corner of my mouth.  I also feel very faint movement in my lower jaw area.  I feel motivated again to do my exercises and I am hopeful that I will end up with movement.  Also, I have quite a bit of skin sensitivity in some areas.  If I rub my fingers down the paralyzed side cheek bone, I can cause this twitching to occur.  I can also feel slight pain on the non paralyzed cheek bone area when I rub the cheekbone of my paralyzed side.  I do not know how else to explain it.

Hope this helps someone!


4 mnths post cross face nerve graft

Slowly but surely..

jaw scar

cheek less swollen

Hi... I have some new pics to share.  I received an e-mail today saying that my blog and pictures have really helped a fellow human with facial paralysis.  That is awesome, cause I wasn't really able to find really good pics and info from someone who has actually gone through with these procedures.



Anywho, I am still swollen in my cheek, but am told by those who don't see me everyday that I am less swollen then before.  I have swelling and throbbing in my temple, but it's not noticeable.  I tried running... Ah, bad idea.  I felt really good as I was running, but afterwards I couldn't walk well because of a groin pain.  I was swingin' my leg for a couple days.  My scars are diminishing and I feel good. 

inner leg or gracilis scar

I had a bi-annual MRI which showed no growth to my little tumor and I meet with an Occupational Therapist tomorrow at UofM.  She will give me movements to try on this paralyzed side.  Even if I am unable to move anything, my brain is still triggering the info to my nerve and muscle.  Whatever helps right?

Other than that, all is well.  I am doing lots of art and cooking new recipes.  I made sauerkraut from scratch and am in the process of making Kombucha (fermented mushroom tea).   It's really good and really good for you.  I am focusing on getting tons of nutrition aka vitamins, minerals, probiotics from foods.

Talk soon!
Jill

4th of July... One month post op.

recent

2 years ago

 Good day!  I am posting a couple pics of my face now, and from a couple years ago.  I am happy!  Still swollen a bit.  Adam refers to my cheeks as chipmunk cheeks; he is right :)

An image of my gracilis muscle made it to the June photo of the month on the Sir Charles Bell Society website.  The site is set-up for medical professionals as a forum to exchange information regarding the facial nerve. My muscle was bizarre because that it has more blood vessels and arteries than the average person, or any person that they know of.  This was quite a worrisome issue for my surgeons in whether my transfer was going to take.  I have to say, it is quite interesting to see your own internal anatomy.


My Gracilis Muscle-Sorry if
it is too graphic :)

I hope everyone has a great July.  Adam is busy studying and I am busy being artistic in any way I can be inspired.  Needless to say I have a lot of unfinished creations.

Thank you for your nice notes of warm wishes and support.  I know this site does not make it easy to write a comment, but many of you have found a way via weallwearscars.com or through email. 

 Take Care

Art in the basement-keeping cool!

The Pug

Happy Healing!

Well, I don't really have much to report, except that I am doing really well.  I am still limping a bit and my temple and inner leg ache, but that is it.  My beloved Mom and Cousin left on Saturday; what a great week we had together.  Adam and I offered for them to move in permanently, but they declined. :)

Even though my cheek swelling is still quite apparent, I feel so much more comfortable in public.  I'd rather have a stiff grin than frown anyday.  I even asked Adam to take a picture with me... Oh, what a great feeling.  So many little things are happening that make my everyday life so much easier.  Yay!

Till next time!

Home in one piece



View of Historical Beacon Hill from my 11th floor bed

Well, I made it home in one piece..  Barely though :) I am very achy and bruised on my skull, inner leg, and whole body.  What an experience and opportunity!  I was a patient at the Mass Eye and Ear Hospital until Friday morning.  The team of Dr's wanted to be sure my harvested muscle was allowing blood flow through and that everything was surviving in its new home.  If I am correct, the blood vessels and arteries connections heal enough in 72hrs that blood clots will not happen, creating a successful connection.   We listened with an ultra sound and the flow was there, yay!  My face was continuing to swell into Thursday, which was a concern, but the muscles stayed soft (not hardening and dying) which was great.  After a scare and slight emotional breakdown, my swelling miraculously started subsiding and has continued ever since.  Everyday there is quite a change and I already have better facial symmetry.  I am starting to look like me again!  Within a few months of healing the nerve should be able to start making a connection and that is when I would see actual movement.  For now, we want to be sure the muscle is happy.



Massive swelling-Thursday



Gracilis muscle drainage system :) 
Muscle is located on inner thigh--ouch!

location of implanted gracilis-between the purple lines

Thanks to the lovely staff at Mass Eye and Ear, my nurses were delightful.  Dr. Hadlock, Dr. Hohman, Dr. Tward, and Dr. Carter were so knowledgeable, supportive, comforting, funny, and just amazing experts at their profession and wonderful human beings.  Thank you for caring so much about me.  You may be my favorites ever!  Really!  Thanks to my sweet and dedicated family and friends for always being by my side, to help me grow.  Mom, Holly, and Adam, thanks for making this able to happen for me.  I love this time together.  This is what life is about.


Friday morning.  Swelling subsided,
leaving hospital.

Me today! One week post operation.  Looking better everyday

She did it!

Greetings to all Jill's fans:

Yesterday, June 4th, Jill underwent the second stage of her surgery.  The procedure lasted about 7.5 hours and appears to have been very successful. An ultrasound yesterday indicated good bloodflow through the new muscle, and this was confirmed again today.

Dr. Hadlock was able to use a muscle from Jills' leg that had two blood vessels.  This made the surgery a bit more complicated, but the added blood-flow will hopefully make the connection between the muscle and the nerve even stronger. 

As you can see from the picture, Jill is swollen but also symmetrical.  She says her face feels odd, but does not hurt.  Her leg, however, is very sore.  That being said, she told me that this recovery would be easier than her initial brain surgery--I will hold her to that.

I was truly amazed hearing her voice after surgery yesterday.  She sounded like the same old Jill; more concerned with me doing my chores around here than with the pain she was experiencing. 

She will stay in the hospital until Friday. The biggest concern after this process is preventing blood clots from interrupting the newly formed connections.  These few days after surgery are the most critical times where the doctors would be able to quickly address any clotting.  As of yet, that has not been an issue.

I cannot wait to have her back home, but I know she is in great hands out in Boston.  I cannot thank Marlene and Holly enough for taking such good care of her--before, during, and after.  Thank you, also, to everyone thinking of and praying for Jill.  She and I both appreciate it greatly.

-Adam

The Time Has Come!

Well, this is it!  The surgical procedure I have been dreaming of receiving for nearly three years is coming to me next Monday, June 4th, 6am at the Facial Nerve Center, Boston Eye and Ear Infirmary by Dr. Tessa Hadlock.  I am nervous, but also excited, and emotional (poor Adam) because I don't really know what to expect to see on my face.  But, then again, things can only get better.  I mean, I have no movement in my right cheek right now, so the surgery is kind of a no-brainer.  I am on the up-and-up! :)

Anyway, I think I have explained the process of surgeries before, but I will re-iterate.  I have already had a nerve grafted from my leg, then placed into my cheek.  This surgery entails taking a chunk of muscle from my thigh and placing it into my cheek hooking up the nerves and other tissues.  I will also be receiving a mini face lift where my nostril will be opened a little and my mouth lifted a bit.  I should see spontaneous/emotional movement within two months with improvement up to two years or so.



Baby Robin, 1 week old, in our bushes. So sweet!

So, I will have great company coming along with me on this journey.  The lovely Mama Marlene and sweet Cousin Holly.  They are super fun, supportive, and easy going.  Did I mention they get along great?  There are so many museums to visit, along with historical tours, great Architecture, and of course the Hospital I hear is AMAZING! :)  I am happy to have a posse of two to stick up for me while I am stuck in what I hope will be a great stay, with lovely nurses.  Maybe that means that I need to think positively, right? :)  I wish Adam, my husband, was coming with us, but he is in the midst of a crazy trimester in law school, so I'd rather he stay and get through school.
So, if you would like an update on how my surgery goes, I will have my Mom or Adam post here.  Should the surgery go smoothly (9hrs), an update should be up by the 6pm or so, east coast time.

Toot-a-loo! Thanks for all of your positive thoughts

Yay!

Cinco de Smile was a blast!  Thank you each and every person who attended or contributed in some way, shape, or form.  What a pleasant day filled with positive vibes.  I actually forgot that I had paralysis for the day and it was an amazing feeling.  After my next surgical procedure, I will most likely be able to have that wonderfull feeling everyday... Oh geez!  Of course, the healing and swelling will take a while to resume normalcy (apparently 2 months), but then I hope to be able to march back into life feeling confident....  Please!!! I hope!  Thanks again to all of you for your loving thoughts, prayers, words, and actions.

Spring has arrived here in Ann Arbor, Michigan!

Well, I have survived my second winter in Michigan.  I have heard the weather is much colder up-north, so I guess I will see in a couple of years when we are living in Petoskey.  We are excited to be up there.  Nature is everywhere and the great Lake Michigan is right there...  beaches and all.  It feels like the Sea and I am AOK with that!  Carol and Dennis, Adam's Parents, are letting us move into the farm house which is on 70 acres.  Oh Geez!  There are wild strawberry's, Morrell mushrooms, wild orchids, and tons of trees and a fun stream.  Steve and Amy once lived there, so we know what we are getting ourselves into. :)

I am ever so thankful to all my friends and family as well as people I don't even know who are supporting me through this bizarre and trying time.  My Mom, Michelle, Orv, and Melissa are having a benefit for me in San Diego this May 5th.  It is called "Cinco De Smile!"  I get to travel back to an area of great family and wonderful friends and I am SO excited.  They have also put together and helped with an online benefit called weallwearscars.com, which allows me to sell handmade items online and spread my story.  Since I am crafty and was an Art major, I have been inspired to make lots of things like mixed media art, jewelry-esque bookmarks, blankets, and other sewing.  I am a busy bee and I love it.

My next surgery is coming up.  June 4th is now less than 3 months away and I couldn't be more thrilled to go under.  Being that they are doing a static procedure which will lift the droopy mouth on one side, I will look more symmetrical whether the crossover nerve graft works or not.  It's all just another step closer to the new look I will be sporting for the rest of my years.  I just want to look incognito, you know, fit in with society and others around me.  I have never enjoyed being a person of attention, good or bad, and I don't want to be anymore.
 
By the way, today is my Grandmother Mary Lou's 92nd birthday!  She was born in 1920 and I love to hear stories of her life and "how things were."  What a great blessing to know your Grandmother at the age of 33.  Did I just say I was 33?!?  How time flies.

I am off to do some yard work and take that furry friend of mine for a walk.  He has some energy to burn.  Have a great week! JJPC

Eye and Facial Nerve Updates



January 2011-eye is better



Hi!  It has been a while and I have been busy with my medical appointments, cooking, art, research and practice on environmentally friendly living, healthy living, running, crafting, sewing and spending time with Adam and Oliver.  



my newest 100% recycled art

Now that I have been accepted to Medicare, I am able to visit some great Dr's at The University of Michigan.  The system is highly reputable, so I am stoked to have such knowledgeable people helping me out with my brain, nerves, face, and eye.  In fact, I had my tear ducts cauterized in my paralyzed eyelid earlier this week.  The process allows moisture to keep my cornea from getting super dry.  It's hurts though... my only complaint.  Otherwise my eye is doing a better job keeping lubricated, so I believe the mission was accomplished.



Other good news!  My 2nd surgery for facial paralysis has been scheduled.  I am excited to announce the date is June 4th, 6am.  It's a minimum 3 night hospital stay, I hear.  I don't really like hospitals though, so we will see.  With my brain surgery, I was out of the hospital in 4 nights and I could not wait.  I was ready to jump out the window for freedom and sanity... :) :)  I guess I am a little antsy sometimes, hence my Miss Piggy reputation, but my husband keeps me in check most of the time.  Unless of course, I listen with my deaf ear ;)



Also, I had an MRI and my little 7mm brain tumor is stable.  No issues with that.  I was told that if it does grow the Dr would like to surgically remove the entire growth instead of radiate it.  He explained that since I have already lost my hearing and facial nerves, there is not anything else that can be affected by surgery.   Radiation on the other hand can have many unknown health issues that could pop up in the remaining 50+ years of my life.

Life has been great otherwise.  Adam and I are still running in this cold weather.  It can be fun when there is snow on the ground because you have more obstacles to bounce around.  I like to think that my running is promoting extra good circulation in my body and nerves.  It must be true because I can already feel the nerve axons growing to the end of my donor nerve.  I was told that things have moved along very quickly... Yes!!  In reality, all I can do is be in excellent health mentally and physically.



back side of my first rag
quilt for Rainee and baby
Mayson due in Feb.



front side of rag quilt:safari

Truthfully, it is a little crazy for me to have so many health issues, but that is how the dice rolls.  At least I am alive and well.  I have to remember that this is just a phase of my life.  

What happens when I get my facial movement back???? :)  I will go crazy in the "happy department" for the rest of my life.  How could I not?  It's the little things that have turned into really big things for me, so I feel that maybe I will appreciate so much more when I can just smile slightly.  For now, I am thankful for a lot of things such as life, love, family, friends, a creative mind, nature, animals, music, health care, and inner happiness.

For Now, JPC