Prelude to MVD - The decision making process:
Prior to making my decision, I had done a lot of research. I tried Dilantin. That didn't work; the only thing it did was to give me a nice drug rash and a trip to the emergency room. Turned out I am allergic. Oh well, strike that and moved on to my next option.My neurologist made an appointment for me with an eye doctor who does the Botox® injection, and a "hot new neurosurgeon in town''. The eye doctor didn't give me much hope that the injection would work for my specific case. He said it "would only mask the symptoms and not be a solution''. The neurosurgeon was a wonderful man who took his time explaining the entire procedure and his background. Turned out he trained with Dr. Jannetta in Pittsburgh. That was GOOD NEWS-made you feel like he wasn't some hack. I told him about the research I'd done and he seemed impressed. He thought the list of questions I had printed off the Internet was a good reference tool to bring along. The ONLY thing that made my husband and I nervous was that I'd be the first MVD he had done in Michigan. He has done a lot of procedures, it's just I'd be the first in this area. BUT he did say that if he couldn't get the monitoring equipment and the surgical staff, he would not do the surgery and I'd have to go to Pittsburgh. Turned out the University of Michigan had both the equipment and the staff, so we could proceed.
March 14, 2001:
I had MVD surgery performed by Dr. David Lowry beginning at 8:30 a.m. at Spectrum Downtown Hospital in Grand Rapids, MI. Everything went well, except a 3-hour surgery turned into a 5 and a half hour one. I guess things were "a little messy back there''. Dr. Lowry took his time and I came out with 100% hearing, no apparent facial paralysis and SPASM FREE. My hospital stay was "interesting''. The staff was awesome and the nurses were very nice. I just had a horrible roommate. I'll leave it at that.
March 26, 2001:
After getting my stitches removed, Dr. Lowry came in to talk to me. Although I am spasm free, my left eye doesn’t close completely so they are recommending a gold weight. This would be inserted into the eyelid to help it close properly. Also I experienced some facial weakness.I was discharged from the hospital on March 17, 2001. Bell’s Palsy set in a few days after my discharge. My husband describes it as “overnight”. (Remember the Droopy Dog cartoons? That was me. I had no facial movement on my left side.) I know the onset was quick, thankfully I was seeing the doctor today. Another weird thing happened, my sense of taste is funky. . I can't taste sweets on the left side of my tongue. For example: my Coca-Cola tasted rusty, and milk chocolate tastes like semi-sweet chocolate. Dr. Lowry recommended seeing a speech therapist for facial exercises, and was baffled by the taste thing. He also recommended a nighttime eye lubricant to keep the eye moist. His explanation for the taste thing is probably the nerve endings are so sensitive, some don't like to be looked at let alone monkeyed with. He said things just have to readjust after the strenuous operation. I really don’t want anyone inserting anything into my eyelid. All I could think of is an eye patch and looking like a pirate. After doing research on the web....I realized that I would not look like Blue Beard the Pirate, that it's a very small weight inserted into the eyelid itself. WHEW! Still not grooving on this idea, but I'll go along with the doctor on this issue. Tim thinks having a gold weight in my eyelid would be cool. He said "Then we can call you 'Golden Eye' like in the James Bond movie''. I pondered all this as the James Bond theme went through my head. It's just odd that my eye didn't close all the way. One of my friend's asked if my eye "would get a weight to work out''. I told him about the eyelid weight, and "Golden Eye''. This made everyone laugh and then we start imagining what I'd look like.
March 27, 2001:
Went to speech therapy today. Boy was that an adventure!! My mom drove me there since I can't drive myself anywhere yet. My speech therapist was a lovely woman named Jane. I think she was a little unprepared for me. She wasn't sure how extreme my Bell's was. She gave me a few exercises with the promise of having more for me next time!!Jane’s Exercises:
1. Pucker & smile 10 times, 3 times a day.
2. Say OOOOOOOO and EEEEEEEE.
3. Facial Massage.
4. Open & close mouth. Keep lips symmetrical at rest.
5. Say “Pa-ta-ka” 10 repetitions.
6. Say “Fa-tha-sa” 10 repetitions.
7. Make a list of 10 words that start with F.
8. Make a list of 10 words that end in F.
9. Make a list of 10 words that have F in the middle.
10. Say your F words 3 times.
11. Suck on a lollipop. Hang it loosely in your mouth and swallow. Put it between your lips (no teeth!) and tug. Try to keep it between your lips!!
12. Place the corner of a washcloth between your lips. Keeping enough pressure between your lips to hold it there as you tug downwards. You should feel some resistance.
This was SO frustrating!! I had a lop-sided face were trying to be supportive, but they had no idea what I was going through. Their faces looked normal and functioned normally. This absolutely sucked! I had to concentrate on how I formed my words so I'm symmetrical while I'm speaking. IT'S SO HARD!!!! I know myself all too well and that if I didn't' see results I was going to just throw in the towel and say forget it!! You don't stop to think how easy it is to drink a glass of milk until you wear it. Dr. Lowry assured me "that you have to go down to go up''. I just had to keep telling myself that it's only been two weeks and I can't expect too many miracles. I think having my hearing in tact is a pretty big miracle in itself.
March 28, 2001:
Mom kept me on a schedule. At every meal I had to do my exercises, so there I sat at the table with a mirror and Jane's list of exercises. So I said my words and rubbed my face. As I said my "Pa-ta-ka'' all I can think of is "PATHETIC'' and how stupid I felt. I couldn't drink without wearing it because of my left facial droop and I couldn't drink out of a straw because I couldn't purse my lips together to make a seal tight enough to get anything to come up the straw. I talked with a lisp too!! I felt more like a freak now than I did before! I was beginning to wonder if this is all worth it! Mom read on the Internet about "cold spoon therapy''. So throughout the day, I get handed a cold frozen spoon to rub on my cheek. *note to self: rub frozen spoon on the OUTSIDE of cheek. Frozen metal sticks to my tongue, the inside of my cheek, my lower lip.
March 31, 2001:
Went to the mall. Woo-hoo! Living on the edge here. My parents took me to the bookstore to get me some books to keep me occupied after they left. As an added bonus, because I had had brain surgery, I got to go to the "build a bear'' store and build a bear or bunny because they started with the letter B. Mom said I had to give it a name that started with F because F's were the other thing I had to practice. Yes, I'm 28 and not 13, but it's a comfort thing. It was total comfort of having people there to take care of me. We didn't stay long at the mall. I got tired and it was loud. It was sensory overload for me. My husband made me take a nap afterwards, and I desperately needed it!
April 05, 2001:
Still felt freakish. I just kept thinking about what Dr. Lowry told me about going down to go up. It made sense I guess....just had to keep a positive attitude. I'd make it through this somehow. Eating was a challenge. Soft food was NOT my friend!! Foods like hamburgers, gyros, etc. are some of my favorite things to eat, but my mouth just didn't co-operate. If I did happen to get my mouth to co-operate, I usually ended up biting my lip or my cheek because they got in the way. It was just not worth the hassle! I hate soup. Speech therapy again today. Jane said I've made some progress, but I had to see her again. It felt like for every step forward I take 3, 4 or 98 backwards. I hated feeling like this. I couldn't let this beat me...I hoped this was only temporary. I had a teacher in high school that had Bell's Palsy pretty bad....his lasted awhile. I hope mine doesn't last long. It was just SO easy for everyone around me to tell me "to keep a positive attitude''...their face wasn't droopy and they didn't talk funny. I knew they were right, it was just so hard! I could FINALLY drink through a straw without squirting it all over the person sitting anywhere near me.EXERCISES:
* Do exercises in front of a mirror.
* Massage (firm touch) the entire face area using small circular motions with the fingertips. Then massage each specific area again just before exercising that part.
* The number of repetitions necessary to get maximal mobility depends on the individual. One approach is to do the exercise fast for 2 or 3 times as a warm up and then do 5 repetitions holding each stretch position to the count of five. Sustained stretch is more effective for increasing mobility than rapid motions.
1. Close the eyes tight and open wide.
2. Make an exaggerated tight wink with each eye separately, using the cheek muscles to help close the eye.
3. Raise the eyebrows as high as possible. Return to normal position.
4. Bring the eyebrows down together as hard as possible as if frowning. Then raise eyebrows as high and as wide as possible.
5. Close the eyes very tight. Then release the squeeze slowly and raise the eyebrows as high as possible before opening the eyes.
6. Look straight forward.
7. Look to one side then the other. Keeping head straight.
8. Wrinkling the forehead and relaxing vertically and horizontally.
9. Flaring the nostrils, scrunching up the whole face.
10. Wrinkle the bridge of the nose by raising the upper lip and then frowning as if something smells bad
11. Flare the nostrils; then narrow the nostrils down pushing the upper lip out.
12. Close the mouth tightly and open wide.
13. Smile big showing teeth.
14. Stick the tongue out as far as possible.
15. Raise and protrude the upper lip—pucker.
16. Put lipstick (or for the guys tinted chapstick) kiss a mirror and make kiss print as even as possible. (You can check this by checking the color it leaves behind on the mirror).
17. Blow up a balloon.
18. Drink through a straw.
April 09, 2001:
Holy Cow, I’ve got eyebrow movement!!! Hopefully I won’t have to have the gold eyelid weight!! I’m lucky the ophthalmologist couldn’t get me in right away...now I won’t have to have it!! THIS ROCKS!!! Maybe a positive attitude helps...and all the exercises. Today is a good day!!! Tim and I sit across from each other when we eat and sporadically throughout the meal Tim will say “raise your eyebrows” or “pucker”. So we were both pretty amazed that when he said “raise your eyebrows I actually did!! So I ran to the bathroom and saw it for myself!!! This is an awesome feeling!!
April 18, 2001:
I can almost pucker symmetrically now. Jane said if I continue the way I’m going I won’t have to come back and see her. I am well on my way to recovery from this. She said I had to keep up with my exercises and facial massages. If I don’t show signs of improvement I have to come back to see her, but hopefully I won’t have to go back. I am so excited!! Today I didn’t have to go to therapy; I just talked to Jane over the phone. She said just to keep up the positive attitude and keep making progress.
June 2001:
I was back in the game. I had my three-month check up with Dr. Lowry. It was a good thing too, I had noticed an "odd bump on the left side of my head" where my incision is located. Jokingly I told my husband that it was a screw. Whatever that bump was, the earpiece on my eyeglasses irritated it. I went to see Dr. Lowry and asked him about the bump. He had me take off my glasses and compared one side of my head to the other. As he felt behind my left ear, his eyes got huge; almost cartoon like. Then he said Kristin, I don't know how, but you've worked a screw loose." He was in total amazement! He said he's slightly reluctant to fix it, only from the standpoint that everything else was doing so well. So I had to keep an eye on it and if it moved, changed shape or began to hurt more, then I had to go back and he'd remove it. So not only have I had brain surgery, I was now the punch line to many jokes. "I need that like a hole in the head"--got one! "She must really have a screw loose"--got that too!! Now all I had to do was meet a rocket scientist.
Conclusion:
I don't remember when I recovered 100% from Bell’s Palsy. I do remember that it was a long road to get there. I struggled every day, I cried, I swore at the world, I was happy and my patience was tried. It was a long tough road without an SUV or a detailed map. They say at some point in everyone’s lives they are “tested”. I remember a song by The Mighty Mighty Bosstones called “The impression that I get”. They talk about being tested. It goes like this: “I’m not a coward, I’ve just never been tested. I’d like to think that if I was, I would pass. Look at the tested and think there but for the grace go I. I might be a coward, I’m afraid of what I might find out.” I’d like to think I passed my test. It certainly helped to put things into perspective. I learned I really had to and that I could rely on family and friends to get me through this. I learned I could depend on myself too. My family and friends really had to “be my mirror” so my face could relearn what it once knew and didn’t have to focus on. I remember the first time I stuck out my tongue in frustration. It veered horribly to the left. My mom and husband thought it was hysterical....I, of course, was humiliated! My MVD surgery was “a cake walk” compared to my struggles afterwards. Ask Dr. Lowry and I’m sure he’ll tell you otherwise, but I was asleep for all of it so what do I know?! My family and friends could sympathize with me, but they didn’t know exactly how I felt through all this. Their faces functioned normally, mine did not. I have met so many incredible people over the Internet who also have or had Hemifacial spasms. I felt like I could finally compare notes with people who had “been there, done that, got that T-shirt”. I felt fortunate to have the complete support of people around me and of people I have never met except through e-mails. I wish I had something profound to conclude this with, but all I can think of is what Dr. Lowry told me “you have to go down to go up”, I also think of the little engine who could. “I think I can, I think I can”. If you truly believe “I think I can , I think I can”; then you really can.
Today, March 18, 2002:
My sense of taste is still "off". The biggest thing for me is that I remember what it tastes like. That becomes tricky when you try new recipes. I still miss my sweets! I don't eat chocolate as often as I used to. Every now and again I need a fix, then I have to remember to eat it on the right side of my mouth. I'm still going strong; seems I recovered, took off and just kept going. Sort of like that Energizer bunny. I'm SPASM FREE with a screw loose. In January of 2002 I went back to see Dr. Lowry for some intense head pains I'd been having. Occasionally I got what I'd call "a Charlie horse in the back of my head" right where my incision is located. Dr. Lowry called it a tension headache, seems there's a nerve back there and specific head movements put tension on it and inflame the nerve. He gave me a prescription for Motrin to take for pain 3 times a day as needed.If I had to do it over, would I do it the same way? I wouldn't change a thing!