Monday, September 24, 2007

7th Cranial Nerve

I've had surgery on my seventh cranial nerve. This nerve was damaged (? another story) and as a result, it spasmed relentlessly. For years I lived with the facial spasm including a maddening loud buzz in my left ear. The spasm began on my left eye then went to the side of my face and down into my neck. As time went on its progression began to involve my speech because lastly I had developed a lisp. "It's cute," Doug said.

After four-plus years I did not want it any longer. By then, I had learned how to hold my hand over my face to hide it. I learned not to speak unnecessarily because this would cause the spasm to go into hysterics. Laughing, and crying I did at home. I was becoming publicly emotionless. I preferred to be at home, I never wanted to be out and about but life demands and we can't always be at home, safe and sound!

I went to see doctors. One doctor, which I won't name, told me that I had too many kids. When I told Doug this he said "that Doctor is nuts." Nevertheless, he ordered a complete CAT scan of my brain. During the follow-up visit he seemed paranoid and even accused me of threatening to sue him. I was bewildered so I refused to return to his care. As I read the newspaper one day I saw that he had indeed proved himself to be a "nut" when he used a shock gun on a patient of his! (He was removed from his profession and jailed.)

Other doctors told me that the only option I had was to sever the faulty nerve then learn to live with a half-working face the rest of my life. Another gave me the option of having the occasional botox injection that would paralyze the nerve for a while. I considered them. I decided that I should hang on in case this nerve would eventually heal.

My Christian friends told me that IF I prayed hard enough, God would heal me. I went through such a struggle during this time, wondering why God healed others but overlooked me. I was frustrated! I have since learned that God not only can heal miraculously, but he has also given knowledge to mankind. Via doctors we can be healed.

Eventually, I learned how to manipulate the computer browser and I did my own online investigation. Thank the Good LORD for the internet! I typed in all my symptoms and began to read and read and read. Soon I ran across "hemifacial spasms." Soon after I ran across "Dr. J" or Dr. Peter Janetta. He is a wonderful doctor at Allegheny General Hospital in Pittsburgh, Pennsylvania. When I first read of him he had successfully operated on over 4,000 patients just like me. I am not sure whether he operates there or not anymore.

Yes! There were people just like me! I was not alone. I was not a single freak. I was incredibly encouraged as I began to read the stories of people who had this microvascular decompression surgery. I was elated to read that they could smile, laugh, cry and talk --- normally afterwards. Excitedly, I told all that I had found to Doug.

Then I read about the surgery. It frightened me. They would cut a quarter-sized hole through the skull behind my ear and go in next to the brain stem. When there, they will find the offending cranial nerve (7th, in my case), pick it up and carefully wrap the nerve with teflon pads which protect it from electrical impulses coming from other nerves or arteries.

I can live with this spasm the rest of my life and not have to have this surgery I decided, so I didn't do any more research. Right then, I was happy knowing what I had, it had a name and I was not alone. Hemi-facial spasms. Some people get this same trouble but they also have pain with it. I am fortunate, I told myself, to not have the pain. So I went on with my quiet, in the shadows life.

Graduations and weddings came and went. Finally I told Doug, I just can't stand this Doug. I want the surgery. He agreed with me and we contacted Dr. Peter Janetta's office. I had to go to local doctors for the preliminary tests and then I was scheduled to fly out to Pennsylvania for an October surgery date. I had the surgery which was done by Dr. Casey and Dr. Janetta at Allegheny General Hospital. Here is a University of Pittsburgh, Department of Neurological Surgery amazing video of this type of surgery. (Not for the squimish.) It's a RealPlayer video and it is incredible! If the link does not work go here and click on MVD at the bottom of the video list.

Thankfully, when I woke up, my face was still. I smiled and it was still. Later when I was not so sleepy, I spoke, and it was quiet. I cried and it was quiet still. I laughed. I was so happy! What a blessing!

Let me tell you people - SMILE! LAUGH! CRY! TALK! These are all gifts, use them. I am so thankful to be able to express my feelings without spasms since 2002. I still have bouts of vertigo. I have hearing loss in the left ear. I do not feel comfortable driving but can drive locally. I wait to go long distances until I can get a ride.

Recently I have heard a buzz in my ear. My left eye has been twitching. It can return. I was warned about this after my successful surgery. I pray that it will not. Right now, I do not want to go through that surgery again, but have read of others having multiple operations.

Yesterday, Doug and I went down to visit my sister Millie. It was so good to see her. I have not been with her for a month. I just wonder what is going on in that head of hers. I believe that she has been trying ever so hard to respond. She was looking at us when we got to her room. When I spoke she would look from Doug to me. I decided to share this video I took of her. I don't think that she would mind. Please keep praying.

Yes, Blogger's video program worked for me. I think the last time I tried it I was uploading a file that was too big. I made this small and it worked. Although, Blogger uploads much slower than YouTube - for sure!

Millie has been hospitalized for 272 days.

Smile for the joy of others.

7 comments:

CONNIE'S THOUGHTS FROM THE HEART said...

I am smiling big time because I know such a wonderful woman called Connie Marie from Alasla. I would never have guess the trial you were going through. You always have such a great attitude. I am hoping with all my heart all things work out for you, I admire you so much for your courage and more courage. May God keep you in HIs care and make you completely where your heart desires to be.

Millie, looks very good and I always pray for her. connie from Texas

Connie Marie said...

Smiles to Thoughtful Connie. Thanks

Someday...

...no more sickness, no more pain, no more crying, no more separation, no more decay, no more emotional abuses, no more physical abuses, no more .... you name it.

I long for that perfect day and that is where my heart desires to be ---for all of us.

Thanks for spending some of your day with me, I know your online time is limited because of your pain. :-)

Constance said...

Hi BBF!

Thanks for sharing your amazing story! I remembered you referring to it in the past but I didn't know the details of it. Smiling and laughter are such a gift! One of my favorite images in my head are of Jesus smiling and I can imagine He had quite a belly laugh!

Thanks for sharing the video of Millie. It has to be very difficult to see her lying there and wanting her to be whole again. You're right about heaven, healthy and whole as it should be. The time on this earth is but a blink of an eye in God's eternity. One day, satan will be where he belongs and the consequences of sin in this fallen world will be but a dim memory.

"When we all get to heaven,
what a day of rejoicing that will be.
When we all see Jesus,
we'll shout and sing the victory!"
Connie

Constance said...

Actually I think it's,
"We'll sing and shout the victory!"

That's pretty impressive considering I go to a church whose music is primarily contemporary praise and worship! I remembered that song from many days gone by!
Connie

e-Mom said...

This is an incredible story, Connie Marie! Thanks for sharing... I had no idea. You are a brave woman to go through with this kind of surgery. PTL is was so successful!

I'm amazed and thrilled by the power of the internet. We can do our own medical research and find information on a vast myriad of topics. I LOVE google. :~)

Blessings on your day today.

Hugs.

Connie Marie said...

BBF - "The time on this earth is but a blink of an eye in God's eternity." Sometimes it's hard to remember this isn't it? Especially when health issues cloud the future. Our future is secure no matter what happens here. This world is only a jumping off point.

e-Mom, I think I was more frustrated/desperate than I was brave. :-)

One of the last things that happened with that crazy spasm was when I was at our Alaska State Fair. I was walking through one of the displays looking at the beautiful sparkling crystals. Unawares to me, the owner happened to be looking at me through the dangles and just as I looked beyond the flashing crystals and saw his face my eye twitched strongly. It appeared as though I gave him a flirtatious wink! He sort of wiggled his eyebrows back at me as I hurried out of there! ha

Yes Google is a good tool!

060185 said...

I have been on a similar journey myself. For the last six years I have suffered the incredible life changing pain of Trigeminal Neuralgia. I also found Dr. Peter Janetta. He and his partner, Dr. Sekula, changed my life.
My story is a long one, my nerve damage caused by...well, that is a long story. After six years of doctors telling me there was nothing wrong, then finally finding a doctor who believed my pain, to years of LOTS of meds with many side affects, not to mention the constant, tremendous pain, I finally was referred to Dr. Janetta. I had surgery in January and recovery was very difficult (I also have bouts of Vertigo), but I now am a different person! No more medicine, no more pain, my life is so much better now. My family is enjoying having ME back again after so many years. Praise God!!
The only way I made it through the last several years is through my faith and my family and friends. I don't yet know why God allowed me to suffer for so long, but I am confident that He will reveal His plan to me in time.
I pray that you and anyone else who has had this surgery is blessed with it lasting for many years to come!