MVD Diary - Billie Jo Sepulvado

Surgery performed by:   Dr. Anil Nanda
Surgical Location:          Louisiana State University Hospital, Shreveport, LA (USA)
Surgery Date:                 July 7, 2003

Diary prepared by:         Billie Jo Sepulvado
Date diary finalized:       July 27, 2003 (Updated 11/07/03 & 05/01/06)

 

THE JOURNEY BEGINS

I have previously written about my HFS History & my Personal Botox® Experience so I won’t go in to too much detail here. I’ve had HFS for about 17 years. It began as a small twitch in my right eye in my mid 20’s. In the last 6 years my spasms became much worse and covered the entire right side of my face, from forehead to the bottom of my neck. The spasms were causing horrible headaches and muscle pain in my neck & shoulder.

When I was totally frustrated & felt I had no one to turn to, I found this site. I was able to make an informed decision about my options by reading the different histories on this site. Here, I found a great doctor in my area that preformed MVD’s. I was also able to meet with two other ladies with HFS that I found through this site. I made my appointment with the Dr. Nanda and waited very impatiently for the day to arrive.

 

Tuesday, July 1, 2003 – Pre-Op Tests Day:

 I’ve planned so much & tried to work out so many details to make sure that the house, husband & kiddos will all survive without me for the few days I will be in the hospital. That sounds like such a good idea, but every time I have one item taken care of, something else breaks down or needs some kind of attention. Maybe this is just my way of getting nervous; feeling like everything is falling apart.

My husband, Stanley, & I get up at 5:00 am, like usual, to get him off to work in the woods. (Stanley’s a logger.) We find that our window unit (air conditioner) in our newly remodeled room (we’ve been in it exactly one week) has leaked water all over the brand new carpet. I almost start crying (very unusual for me). I turn the air off & pile towels on the carpet to soak the water up. Stanley reluctantly leaves for work & I prepare to drive to Shreveport (1 ½ hour drive from my home in Zwolle) for my Pre-Op Tests.

Thanks to the stress of my wet carpet, my spasms are going wild. My right eye is squeezed shut so tight that it is pulling my left eye to a squint. My lip is pulled so high on the right side that I have a horrible sneer on my face. I really shouldn’t be driving by myself, but I hated to make anyone else go sit all day while I have all the tests done.

My appointment is at 11:30, but I arrive at LSU’s Neurosurgery Department at 10:15. There are several of us here for Pre-Op tests. Several of the women get into a discussion about what they are here for. A few are for back surgery, several for Gamma Knife surgery for Trigeminal Neuralgia & I’m the only one with the squished, shuteye & evil sneer. They are discussing medications tried that haven’t worked & horrible side affects. I try to keep reading my book, but this is really interesting stuff. They then discuss what Trigeminal Neuralgia is. One says it’s something bothering some of the facial nerves, like messed up electricity. I finally pipe in that if their problem were with one of the nerves a little higher up in their face, they would be making funny faces like me. They were all shocked & said they had been wondering about my twitches & the eye that would only open every once in a while. They said, “that must really hurt.” I told them that the spasms don’t really hurt at all, they are just annoying. I explained that I do suffer really bad headaches quite often & also stiff muscles from all the spasms, but in the long run mine looks worse, but theirs hurts a lot more.

They drew blood, collected a urine sample, did an EKG and then had me sign several papers. I got worried when the nurse asked me if they gave me my MRI’s when I was there last time. I told her I really couldn’t remember, but I would look when I got home.

I looked all over & couldn’t find my MRI. Now I’m worried! Right before bed I remember where my MRI is. I never took it out of the trunk of my car since the day the nurse gave it to me for safe keeping. (Why did they give it to me for safekeeping? I’ve been so uptight & stressed out lately that I’m doing good to remember my name most days.) My car is 2,000 miles away with my daughter visiting my family in California on a college summer break. She hopes to make it back by late on the 6th so that she will be with me for the surgery. I hope she makes it in time to bring my MRI before surgery.

They send me across the street to speak to a nurse at Day Surgery & an Anesthesiologist. The nurse explains the to do’s & not to do’s nothing to eat or drink after midnight the night before surgery & bathe with the special soap the night before & the morning of surgery. Then she says that they are all out of the special soap, just use any antibacterial soap. Gee, that’s real comforting. I’m beginning to feel very unimportant to them. How can the #2 rule be so important if they don’t even keep enough on hand for their patients? What else will they run out of or loose track of while I’m in their care? Am I just getting a bad case of nerves, or would this bother anyone else?

I wait forever for the Anesthesiologist. Thank God I brought a really interesting book with me! I finally get called. My turn to go over important details with the Anesthesiologist. The second or third question he asks is; “How much to you weigh?” I tell him, “Too much.” He gives me a very serious look. I tell him, I can guess, but I’m not really sure. He says that they should have weighed me earlier today. I tell him that no one did. He writes down my estimate and mumbles that this is very important information. It is necessary for them to determine the right amount of medication I should need. Okay. I can understand that. So, why didn’t anyone weigh me if it’s so important?

I finally finish up about 3:00. I head home and pick up some fried chicken for supper. The first thing I do when I get home is check to see if my carpet is dry yet. No such chance! The air conditioner is leaking even worse now & my carpet is soaked. I’m ready to throw a fit now!

Thursday, July 3, 2003 – Trip to the Airport:

Today my son, Jeremy, and I are going to Houston to pick my Dad up from the airport. Jeremy will have to do all of the driving. I can’t navigate well in strange territory with only one eye. We have about a 4-hour trip from Zwolle, LA to Houston, TX. Since I’m in the passenger seat, the seat belt rests on my neck on the right side (my HFS side). This irritates the muscles & creates more spasms in my neck. We’re not on the road an hour when my neck is stiff & feverish and I have a headache. I won’t mention it to Jeremy, because I feel that if you complain too much or too often, people think you’re a weenie or just feeling sorry for yourself.

I get on Jeremy’s nerves because I’m jumpy. I step on my make-believe break a couple times or tense up when the car in front of us steps on their breaks. I apologize & explain it’s a mother’s instinct & I’ll try to behave. I read my book to keep me from being a back seat driver.

It is raining off & on between Beaumont & Houston. At times we can barely see the road. At one point the car next to us drives off the road & into the ditch. We make it to the airport an hour early, meet my Dad & head home. As we reach the outskirts of Houston, we wreck. I can’t believe it. No one is hurt, well no one except my daughter’s car. It looks terrible, but it is driveable. We stop to eat and calm down a bit before getting back on the road to Zwolle.

It’s been about two years since my Dad’s last visit and at least 3 or 4 years since I’ve seen the rest of my family. They all live in California and Oregon. Dad is surprised that my spasms have become so intense. I don’t think any of them could comprehend how bad it is when I tried to explain why I elected to have this surgery.

Monday, July 7, 2003 – "MVD-Day":

I get up at 4:00 am to make sure I have enough time to get ready. Take my final, preparatory shower with antibacterial soap. Stanley, my Dad & I hop in the car & make the drive to Shreveport. We find a good parking space & take the elevator to the 3rd Floor – Day Surgery. Perfect timing, we made it at 6:00. There are so many patients that the waiting rooms are beyond full. There are people sitting all over the floor in the hallways. I feel sorry for anybody that may be in a lot of pain and have to stand here & wait with the rest of the herd.

7:00 am they call my name. They take my vital signs & give me medical arm bracelet. They tell me I am the first surgery case & take me to a room to get dressed in the surgical gown & cute stockings. A nurse comes in and draws some blood. An orderly comes in and wheels me on my way to surgery. Dad & Stanley look uneasy as they tell me good bye. They make their way to the overcrowded waiting room where they are joined by my son, my daughter, my two stepdaughters, my mother-in-law and several friends.

The nurses & the Anesthesiologist start preparing the work area. They each introduce themselves and are very friendly. They all comment on my spasms and that they hope my surgery is successful. (A few days ago, my sister had suggested that I write NOT THIS SIDE on the left side of my head so that there will be no confusion when they start to cut me open. She hasn’t seen me in a couple years so I do my best to explain that it is very clear which side of my face is having spasms, even when I am relaxed or asleep. They’ll know!”)

Surgery began at 7:45 am and I was wheeled in to the SICU at 11:24 am. I’m not aware of anything at all until the nurse wakes me up at 12:30 to tell me Stanley & my Dad are here to see me. I try to smile & say hi. The tiny movement makes me sick. I get the dry heaves. They stay with me a few minutes & tell me I look great & that I’m not twitching. I fall asleep.

My whole family came in to see me. I’m really touched to know that they’ve all been waiting and worrying. I try to say something to them & here it comes again. My stomach starts churning & I feel like Linda Blair in the Exorcist. Thank God there isn’t anything in my stomach, but I've got a bad case of dry heaves again. Sorry everybody, I’m going back to sleep.

Next time I wake up I am more aware. My head doesn’t hurt at all. My tongue is killing me. I must have bitten it during surgery or something. I don’t feel sick any more. I actually feel okay. Barbara, my ICU nurse, is sweet & friendly. That’s really nice. All of a sudden, something goes wrong with my vision. Everything is on its side. All of the people are walking on the walls, the curtains are hanging sideways instead of up & down & when I look at my bed, I realize it is sideways & I may just slide right off of it. I close my eyes & take deep breaths. This must be medication. I’ll be okay. I cautiously open my eyes & everything is still sideways.

When Barbara walks over to check on me, I tell her that I think I have a problem. I explain that she is standing on the wall & that everything I see is sideways. She assures me that I’ll be okay, but that she will speak to my doctor. She comes back after a short while & says he wants a CAT scan to be sure everything is okay.

Two of my daughters come in to visit me. (I scared all my other kiddos off when I got sick last time.) They are trying to make me laugh. I tell them that they’re sideways & explain my vision problem. One of them says, “Dang, that must be good medicine they’ve got you on!” The kids are worried about me. I tell them that I’m fine. They can go on home. I’ll just be sleeping for the next 24 hours anyway. I know that they love me and I’m tickled that they all came to be with me for the surgery. I hate the thought of all of them sitting in that little waiting room.

Barbara finally prepares me to go get the CAT scan. On the ride there I keep thinking that life will be very difficult if my vision stays like this. I don’t see how I’d ever walk, let alone drive. Half way to CAT scan, my vision clicks & is back to normal. I tell Barbara. She looks relieved for me, but says we’re going to do the CAT scan any way.

Back in ICU again. I’m feeling much better. Dad & Stanley come to see me again. They spoke with Dr. Nanda. My scans were fine. He thinks the vision problem was just a little fluke due to the swelling from the surgery. He told them that I had an artery twisted around 2 nerves, a nerve to my eye & a nerve to my ear. He said it was very tricky to undo, but was very successful.

I ask the nurse if there is something behind me making a lot of noise. He said that yes, there is an oxygen machine & the automatic blood pressure machine. I guess those are both important pieces of equipment, but they sure are loud and are irritating my right ear.

I notice that my tongue is very sore. I have several small sores under my tongue & on the right side it looks like I’ve bitten a large piece off (about ¼ of an inch). Wonder how I did that. Stanley says there’s dried blood around my mouth. That must be from when I tried to bite my tongue off during surgery. I also have a spot of dried blood in the middle of my forehead. I ask for a wash cloth to clean up my face. I evidently have a sore spot on my forehead, not just dried blood.

Evidently there was a lot of confusion for my family while I was in surgery. My surgery was on the 3rd Floor; they were left waiting on the 6th Floor with standing room only. No one ever told them that they could go to the 3rd Floor waiting room. When they finally found out that I was in SICU they had a hard time getting any information about my surgery. Dr. Nanda went from my surgery to another. I wish someone at the hospital had been more considerate of the friends and family members that were kept waiting for so long.

It was 6 pm before Dr. Nanda spoke to my family. I told them they should go on home. I felt fine & just wanted to sleep anyway. They left for home around 6:30 pm.

Tuesday, July 8, 2003 – 1 Day Post-Op:

Around 5:30 am they bring me a breakfast. I wonder how I’m supposed to get to it. I have IV’s in both wrists and at the inside of each elbow. It hurts when I bend any of them. I go ahead and nibble on the bacon and drink the iced tea.

I wake up every time someone speaks to me and go right back to sleep as soon as they turn to leave. Several doctors come in with Dr. Nanda. They ask how my vision is and explain that the odd vision yesterday was most likely due to swelling and should be fully resolved now. Dr. Nanda said that the CAT scan was fine. He explained my surgery to me. He said that an artery was twisted around 2 nerves, my facial nerve & my hearing nerve. He said that he had to stretch the hearing nerve pretty far and is worried that it could cause some trouble hearing in that ear.

They moved me out of SICU and into a private room around 10:30 am. I drift asleep until Stanley tapped me on the shoulder. He came to visit with my Dad. They both look a little less nervous than yesterday. I mention that I don’t think I can hear out of my right ear. When the nurse comes in, she asks me to plug my left ear and see if I can hear her. Nope! I can’t hear anything that way.

They bring me lunch & I nibble on it. I’m hungry, but my tongue is killing me.

June & Rex Culpepper come to visit me. (June & I met through HFSA just a month ago along with Ann Ehlen.) They tell me how calm my face is. June is surprised that I haven’t looked in a mirror yet. She asks me if I’d like to use her compact. I get my first look at my "SPASM FREE FACE". Wow, no more evil sneer; no more Elvis impressions; no more winking at everyone all the time. I also notice that I have a large bruise just below my lip on the right side, a bruise under my right eye & a hole in the middle of my forehead. I can feel several other holes around my head in my hair. I’m guessing I must have had some sort of halo screwed on my head during surgery.

Around 7:00 pm Dr. Vanzandt came to talk to me. She said she was present during my surgery & wanted to get a prior history from me.

Stanley & Dad stay till 8pm when I finally convince them I’ll be fine.

Wednesday, July 9, 2003 – 2 Days Post-Op:

I asked the nurse when I would be able to get up. She took the catheter out and helped me to the bathroom. I feel like a weeble wobble. I’m not really dizzy, just off balance – way off balance.

Two of my good friends come to visit with me for a while. My Dad comes and spends the day with me. Stanley joins us when he gets off work. They say that I look sun burned on my neck & the right side of my face. We try to figure out how that happened. Dad mentions that it could be a burn from all those bright lights in surgery. I tell them it could also just be a reaction to all that tape they had on me. I have very sensitive skin, so it wouldn’t surprise me. I notice that I am very swollen from my neck (on the right side) up the side of my face and behind my ear. My incision doesn’t hurt. In fact it feels numb, as does my entire scalp.

Dad left around 3pm. I asked Stanley to help me take a shower. Nothing like a shower to bring you back to life & make you feel human again. Stanley left around 7:00 pm.

Thursday, July 10, 2003 – 3 Days Post-Op:

Dr. Nanda came in early this morning. He said I was doing fine and could go home today if I choose. Yahoo! Of course I want to go home! I begin moving around and preparing myself to leave. The nurse said I would be able to leave as soon as my ride gets here. Dad arrived about 10:00am & I was wheeled out to the driveway at 10:30 am.

As soon as I get home, I get a call from one of my friends at work. She says not to cook tonight. She brought us a complete gumbo supper with a big strawberry shortcake.

I feel fine, but I sleep a lot.

Friday, July 11, 2003 – 4 Days Post-Op:

Feel about the same. No big changes. I sleep off and on all through the day.

Saturday, July 12, 2003 – 5 Days Post-Op:

My son drives my Dad to the airport so he can head back to California. It’s been great having him here. Stanley would have been lost without him.

I feel about the same as yesterday, maybe a little better. I take several naps

Monday, July 14, 2003 – 7 Days Post-Op:

I get up with Stanley at 5:00 am and pack his lunch while he gets ready for work. I go back to bed at 5:30 am and sleep another hour. Still off balance. I still hear a lot of noise in my right ear. Still have a metallic taste in my mouth. My incision feels like it is stretched really tight today. I guess that means it’s healing.

I straighten up the house a little today. I change and wash the sheets on our bed & in the guestroom. I sweep each room (hard wood floors) and wash the dishes. I get on the computer and check email and download some files from the office so I can work on them later.

I call our family doctor to make an appointment for next Monday to get my stitches out.

The right side of my head feels very swollen & feverish. I’ve got a good headache. Since I wanted to try to quit all the medicine yesterday, I’ll just try taking a nap and see if I feel better. I stretch out on the recliner at 2:30pm. I wake at 5:00pm and don’t feel any better. I give in and take a Flexeril to see if that will help relieve some of the pressure.

My boss comes by & brings a complete fried chicken supper so that I don’t have to worry about cooking. I still have a headache so I take Tylenol PM and go to bed.

Tuesday, July 15, 2003 – 8 Days Post-Op:

I get up with Stanley at 5:00am and pack his lunch while he gets ready for work. He tells me I better get a lot of rest today & no house cleaning. I go back to bed at 5:30am when he leaves. Wake up at 9:30am and I feel great. I guess I needed the sleep, because I never could sleep that late before.

I still can’t hear anything but obnoxious noise in my right ear. I’m still a little wobbly. I do believe that metallic taste is not as strong this morning. My Diet Coke almost tastes like it should. My scalp is still numb. I still have the bruise under my right eye & on my chin.

One of the ladies I work with brought us pizza for supper tonight. Hey, I could get used to this! It’s amazing how generous and caring people are. I’m proud of my friends and family.

Saturday, July 19, 2003 – 12 Days Post-Op:

I’m still wobbly when I walk. I still can’t hear anything but noise out of my right ear. The bruises on my face and on my wrists are finally gone. The sores around my head (from the halo or clamp or whatever during surgery) are almost completely healed. My incision doesn’t hurt. It is beginning to itch a little (guess that means it’s healing) and it feels tight and pulling. My scalp still feels numb. The right side of my face feels swollen and kind of sore, like someone hit me right in front of my ear. I’m not taking any medication now and thank God, that metallic taste in my mouth is gone & every thing tastes right now.

One of my friends picks me up to go run errands. We go to Wal-Mart. I find it much easier to maneuver about while leaning on the shopping cart, kind of like a walker. I’m doing really well & don’t need any assistance until it comes to loading everything in the car. After Wal-Mart, we go to get some groceries. By the time I get home, I’m tired, but amazed at how much I’m able to do. I develop a headache, just on the right side.

Monday, July 21, 2003 – 14 Days Post-Op:

Today I get my stitches out. Since Dr. Nanda is on vacation, I try to get an appointment with my family doctor. He is also on vacation his nurse refers me to Dr. Founds who is covering for my doctor.

Dr. Founds is very curious about my surgery. He also seems to never have heard of Hemifacial Spasm. He asks me a lot of questions, one of which is, “So was it successful?” I told him sure. My face isn’t twitching, drooping or pulling and no headaches. He doesn’t look convinced that my face could have been doing all that, surely not enough for such an invasive surgery. He asks who did the surgery. I tell him Dr. Nanda. He said, “You know he’s not a good doctor. He a great surgeon. He’s not the best in Louisiana. He’s the best in the South. I don’t think you could have found a better doctor to do your surgery.” Well, of course. Look at my face!

Dr. Founds says that I seem to be having a reaction to the sutures. I tell him that I have very sensitive skin and am not surprised. It takes about 15 minutes to get all of the stitches out. It doesn’t hurt at all because my scalp still feels numb. It feels really good when he rubs it down with antiseptic.




UPDATE: As of 11/07/03, 4 months after my MVD, I am so greatful to be Spasm-Free! My hearing is still improving, but not back to normal (still have ringing in my ear & very sensitive to high pitches). Thank God for this surgery, for Dr. Jannetta and of course for Dr. Nanda (my surgeon)! Mostly, I am thankful I found this site and that ya'll were here for me!

UPDATE: - 05/01/06

I want to add updates to the side affects that I had after surgery.

Metallic Taste – Immediately following surgery, I noticed that nothing tasted good – including my favorite drink, diet coke. This was strong through out the first week then began to improve daily. Within a few weeks (4 to 6 – I’m not sure now) I just didn’t notice it any more. I’m not sure if this was from the medications I received during surgery or from manipulation of the nerves, but it did correct itself with time.

Vertigo – The first time they let me get out of the hospital bed I felt fine until my feet hit the floor. All of a sudden I felt there was a weight pulling my right ear (MVD side) towards the floor. The nurse had to hold onto me & I held onto her & the wall as I made my way to the bathroom. My symptoms only appeared when I was on my feet. I had no problem when I was sitting or lying down. I never really felt dizzy or that things around me were spinning. I just felt that something was pulling the right side of my head towards the ground. I could walk around as long as I had a wall or something to hold on to. This improved everyday. Within about 3 weeks I was able to walk without holding the walls, but I swerved & swayed like I was drunk. Within about 8 weeks it was completely gone & I just didn’t notice the need to hold on to things anymore. That said, there are times that if I turn too quickly I feel that old sensation again & stumble a little. I find this the worst when I am walking on my treadmill & someone speaks to me. I have actually got hurt when I looked in their direction & lost my footing. I feel that this is 99% corrected.

Tiredness – Everyone mentions that you need to rest a lot after the MVD. I found this true & that my vertigo was worse when I over did it. I also found that I got headaches when I tried to do too much too soon. One thing that I didn’t notice other members mention is that you may never regain 100% of your energy. I admit that my MVD happened at a very life changing time for me (a month before my 43rd birthday). I mean that I understand that I am starting to notice a few things about me that aren’t like they used to be (my weight, my vision, my hair getting a few grey strands and such), but I don’t think this is all age creeping up on me. 6 months after my surgery I went Christmas shopping with a friend. We made about 5 or 6 different stops before we were finished & I felt like my legs were heavy. It felt like I’d been playing out in the hot sun all day. I was physically drained. It took about 2 days to recoup my energy from that outing. Since then I have noticed that I require more rest before & after outings like that. I don’t have the energy level I did in June before my surgery. Again – I don’t know if this is due to the surgery, age or what.

I saved the hardest for last:

Hearing – Hyperacusis & Tinnitus – Immediately after my surgery I heard what I thought was some large piece of equipment sitting to the right side of me. The next day I learned that the sound was in my head. I suffer from damage to my hearing nerve. For me, this caused Hyperacusis & Tinnitus. The Hyperacusis (for me) is a very strong sensitivity to certain sounds & pitches. High pitched noises are very painful to me & so is anything loud. There are 2 people I work with that are naturally loud talkers. They hurt me when they talk. It will make me flinch like someone has hit me. I usually cover my ear while they talk to ease some of the pain. One is very observant & usually lowers her voice immediately when she sees me flinch. The other doesn’t get it & doesn’t seem to know how to adjust her own volume (who knows – she may have a hearing problem too). I have learned to avoid loud people & places as much as possible. I went to the movies once since surgery & won’t go again. The sound is so loud that I was in constant pain. I tried ear plugs, but eventually learned (through trial & error & through websites) that this actually causes more problem than helps.

The Tinnitus is basically noise. Some think it is the sound of the blood rushing inside the head that is magnified or that our bodies have learned to ignore until you are struck with Tinnitus. Sometimes I can just barely notice a hum in my right ear. Other times it sounds like an outboard motor on a boat or an air conditioning window unit stuffed in my ear.

When sound irritates my Hyperacusis, the Tinnitus gets louder. The longer & louder the irritation to my ear; the louder the noise of the Tinnitus. They seem to build on each other.

My hearing has gotten better & worse & gone back & forth since the surgery. I am learning to live with my odd hearing. I still feel that this side affect I’ve been left with is much better than the twisted face HFS had given me & all the fun that went with that.

Permission granted the HFSA to post MVD Diary on website.
Billie Jo Sepulvado, July 27, 2003

 

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