MVD (and Chiari) Diary - Julie Genovese
June 2002:
When I first found the HFSA and the COF support groups, and started reading all the information there, I just sat in front of my computer and cried. It had been 16 years of dealing with HFS, and it was an incredible relief to find others who knew what I was going through. I couldn’t believe I had never thought of searching the web before. And as soon as I started reading about the MVD, I knew that I had found my answer. I read all the journals, and I clicked on the many different links, and by the time my husband, Bill, got home from work that night, I told him that I wanted to go in for an MVD. He was surprised and worried, but he was also behind me on the decision since he knew how long and painful my struggle with HFS had been.
July 2002:
I asked my primary doctor to order a MRI so I could send it to Dr. Kassam for an evaluation. My PCP was very supportive and happy to help. After the MRI was ready, I sent the films and a brief medical history on to Kassam’s office and waited for a response. In two weeks, when I called his office, they were ready to set up a surgery date. Yikes! But first I had to get approval from my insurance company.
October 2002:
About 4 months and two appeals later, I finally got authorization from my insurance company to go out of network to Dr. Kassam. Yes! It was hard hanging in there and waiting it out, especially after the first rejection, but it was ultimately worth it. I haven’t had the happiest of experiences with surgery, hospitals, or doctors, so it was really important to me to go to the best for my MVD. I’m also only 4'3" tall (I have a type of dwarfism called S.E.D.) and back when I had both hips and both knees replaced, there were special considerations. So I wanted the most experienced doctors I could find for my MVD, just in case they ran into complications. Which, in a way, they did. I had an Arnold Chiari malformation (what a name!) that had to be taken care of before my MVD.When my insurance company overturned their original decision and gave me authorization to go to Pittsburgh, I immediately called Bill at work and gave him the good news--I’m going in for brain surgery, hooray! It’s so strange to be excited about it, but after 16 years of twitching, I’m soooooo ready to be spasm-free, I can barely stand to wait a minute longer. My family and friends (especially Bill) are very concerned for me, but they also know how horrible this powerful twitching has been and how much it has changed my life. I think I’ve tried every traditional and alternative therapy known to (wo)man but found that nothing helped. I look forward to the day when someone does find a cure other than surgery. But in the meantime...I’m tired of having my face out of control, and I’m tired of being embarrassed. I’m tired of not being able to read easily, and I’m tired of trying to force my HFS eye open while I’m driving. I’m tired of biting my cheek when I eat. I’m tired of not being able to smile wholeheartedly. I’m tired of having no depth perception half of the day (when my eye is slammed shut.) I’m tired of drooling on the HFS side at night because my mouth is pulled open! I’m tired of the fatigue and headaches from all the twitching. I’m tired of avoiding strangers and social occasions. I’m tired of dodging cameras! I’m tired of blaming myself. Soooo--under the knife I go...
Fortunately, my parents live in Somerset, PA, which is an hour and a half outside of Pittsburgh, so my husband and our 2 1/2-year-old son, Spencer, will be staying with them while I’m in the hospital. Leaving Spencer is one of the harder parts about this whole thing. I’ve never been away from him for more than a few hours, so I feel pretty sad and nervous about leaving him now. He’ll be happy with my parents, and they adore him, but I’m sure he’ll be wondering where the heck I went! I just hope I’m out of the hospital in 2 or 3 days. My past orthopedic surgeries were very painful and the recoveries were very long, so I’m worried about what it will be like this time. I keep telling myself that the present doesn’t have to be like the past, but my fears sometimes creep in anyway. Over all, though, I have a peaceful feeling about my decision and my upcoming MVD. The thought of being free is spurring me on, and I feel great confidence that everything will be just fine. Surgery is set for December 4th, 2002.
November 2002:
Lois, at Dr. Kassam’s office, has been amazing. What a gem. Whenever I need help, she is right there with answers and support and kindness. Dr. Kassam is lucky to have her! Today was the first time after talking to her that I hung up without a smile on my face. She told me that Dr. Kassam says my skull has an Arnold Chiari malformation (seen on my MRI.) I need surgery to correct that problem before I can have my MVD. I’ll have to wait 2 months in between surgeries. I feel like I’ve just been kicked in the stomach.The Chiari Malformation is essentially excess bone at the base of the skull. In my case, there were no symptoms of the Chiari (like problems with swallowing, fatigue, dizziness etc) but the MRI showed it. Dr. Kassam said that removing that excess bone would make the already small work area in the brain--the size of a tack--a little bigger. It would make the MVD safer and increase odds for success. But I still just wanted to cry. Two brain surgeries. Two big scars. Two recoveries. That night I went to the COF chat room and told the group about the Chiari. Homer W. said he remembered hearing the term, and before I knew that he was gone, he was back on line with the name of another COF member who had had the Chiari surgery and MVD. I was amazed. I felt renewed hope, and Homer was a hero to me. I immediately contacted Shirley, the one who had the Chiari and she became a great support to me. She said that the Chiari "wasn't that bad" and her MVD had been successful as well. I took a deep breath and decided not to pity myself anymore. (By the way, there is an Arnold Chiari Foundation on the web if anyone needs more information. The recovery, and temporary restrictions, are very similar to an MVD.)
November 30, 2002:
We drove out to Somerset, PA, but then a few days before surgery, I felt a cold coming on. No! I couldn’t believe it--of all times! I was beside myself with worry. Will they do the surgery? How long will I have to wait if they postpone? I called Lois who said that anesthesiology would have to make the final call, but if it was just a head cold (not respiratory) they would probably go ahead with surgery. I was relieved. I really, really didn’t want to postpone surgery, although I decided that if the date had to be changed, there was a reason somehow. I needed to just let go of my worry, and stop attempting to control the universe. I prayed a lot and finally was able to relax with whatever happened.
Tuesday, December 03, 2002 – Day before Chiara:
The day before surgery, I was feeling better, just a little runny nose, so my husband drove me in to UPMC for the long day of pre-admission testing. (They are the same tests that are preformed for an MVD. Read Stacy Denlinger's description of the tests in her MVD Diary at if you want more details--thank you Stacy! Her account helped prepare me for everything--and the tests were all pretty harmless.) As it turned out, the cold wasn’t going to be a problem. Phew. The day was very tiring though, having to march around the hospital and keep repeating my medical history and to have so many different strangers handling me and moving me about. But it was terrific to meet Lois, and to meet Dr. Kassam himself. Both of them are wonderful, kind, helpful, bright (I could go on and on...) By the way, bring your own lunch and snacks for the day of pre-testing. You might not have time to get to the cafeteria.
Wednesday, December 04 “Chiari Day”:
I was told to be at the hospital at 10:00 am. I was staying at my parent’s house (1 1/2 hours away) so I was relieved to not have to get up as early as we did for pre-testing (5:00 am for a 7:30am appointment) The morning of surgery, I said good-bye to my parents and to Spencer (which made me cry.) Then my husband and I got on the road at 8:30am. I cried for awhile on the drive, too, but it seemed to relieve my nervousness, though it made my husband squirm a bit. He was definitely as anxious as I was!We arrived at the hospital at 10am and I was called out of the waiting room after about fifteen minutes, along with another patient, and brought to a hospital type room to get undressed etc. The other patient, a woman in her late forties I’d say (I’m 39,) was very stoic looking and seemed like a tough cookie. I felt so vulnerable and small that I felt no inclination to strike up a conversation with her--though I did wonder what surgery she was there for. I lay in my bed for awhile in my double hospital gown until a nurse came in with some papers. The nurse quickly discovered that my middle initial was still incorrect on my blood work (I thought they had corrected it the day before when I pointed it out.) She told me in a rather indifferent tone that they would have to draw more blood because if the blood lab had the wrong initial, and the doctors requested blood during the surgery, the lab wouldn’t send it! (They have to be very precise.) Now, I don’t really mind having blood taken--I’ve had several other surgeries--but something about her indifference, my nervousness, and the fact that it wasn’t my fault, but it had to be corrected ON me, started me crying all over again. I didn’t even attempt to muffle the sobs since I figured I just needed to let it all out. The other "tough" patient in the bed next to me (behind a curtain) suddenly said in such a kind voice, "Are you okay?" Then I felt kind of foolish, and I told her that I was all right, just scared over my operation. "Well, of course you are," she said like a compassionate Grandma, "everyone gets the jitters, but you’ll be just fine, dear." She made me smile and I thanked her for her thoughtfulness. I was grateful too that she proved my assumption about her toughness wrong. It’s a bad habit to judge others so quickly.
They brought my husband in after the blood work was done (again) and I got a chance to talk (whine) to him for a few minutes. Then another nurse came in to say they were ready for me in the O.R. Ready? For brain surgery? Oh boy. As they wheeled me out, I called out a good-bye and good luck to the tough/nice cookie I had met. My husband walked alongside the gurney until we got to the elevator. Then we had to say goodbye. That was hard on both of us. I really didn’t want to be alone! I cried as the aide took me to the pre-op room and wheeled me into the farthest cubicle/station behind a glass wall (the others were behind partial curtains.) I wondered why they put me so far away in a "sound proof" room. Did they think I was going to cry hysterically loud or something? Well, what the hey, I let myself cry some more. I don’t know why--before my other surgeries (hip and knee replacements) I wasn’t so teary. But then again I didn’t cry after this surgery so maybe there’s a connection.
I was so far away from the nurse’s station that I had to call out for some tissues. My nose was running from the cold AND the tears. A nurse brought some in and then told me that the anesthesiologist would be in to talk to me soon. It was lonely waiting there for someone to appear. The anesthesiologist, Dr. Carol Rose, came in soon after and from then on out I felt better. She was terrific (if you’re going in to UPMC, I recommend that you try to request her.) She had a male nurse working with her, Jim Stit, who was also great. He got my I.V. in on the first shot (which is difficult on my bony hands) and without much pain. I also brought along a small piece of paper--in the pocket of my gown--with some positive affirmations on it. It said things like, "After the operation you will feel comfortable, safe, and pain-free...Your operation went smoothly and you will heal very well." I asked Dr. Rose and the nurse if they would read them to me as I went under anesthesia and as I came out of it. (I have had some scary experiences before so I figured it couldn’t hurt.) I don’t know whether or not our subconscious can hear when we are under anesthesia, but many studies suggest that we can and that affirmations are a healing tool. Some encouraging words apparently help to relieve stress and maybe pain etc. Anyway, they nicely agreed to "talk" to me and said that they do that routinely anyway. News to me.
Then I was wheeled into the O.R and got a sedative so that I wouldn’t be upset by the intubation. I have a small windpipe and I have to be partially awake when they put the tubes down into my lungs. Dr. Rose was so good though that it was uneventful and before I knew it I was asleep.
The first thing I remember was hearing some groaning, and then I realized that it was me. That was strange. Then as I slowly came to, I knew I was in the recovery room. A nice nurse was right there to say hi and that put me at ease. I had on an oxygen mask, but I pulled it away from my face for a second to ask her when I could see my husband--I think she said in a little while, then I guess I dozed in and out. At some point I also asked her for some Chapstick because my lips were so dry--she smeared some on my lips, which felt good. She asked me, "On a scale of 1 to 10 what was my pain level?" I thought about it for a minute and told her a 4. It really wasn’t that bad but a 4 seemed right. I could feel the numbness/pain at the back of my head where the incision was. I thought that my head was propped up on a small pillow or something, but later I realized it was the swollen numbness that had me fooled--my head was actually flat on the bed sheet. My husband came in at some point, which was a big relief. He looked happy and relieved too and he held my hand and sat with me for awhile. He told me that Dr. Horowitz came to talk to him when my operation was over (about 4 hours later) and said that everything went well and that they removed a 2" X 4" piece of my skull. That sounded huge to me! He also said that they didn’t have to use duraplasty over the muscle surrounding the brain since the muscle itself was strong enough on it’s own. Hmmm.
I was in the recovery room for almost four hours because they didn’t have a room ready. The time went quickly though so it didn’t bother me. I did feel a little queasy and the nurse gave me something in my I.V. to help. She also hooked me up to a morphine drip with a hand held button-thing so I could give myself small doses every eight minutes if I wanted to (that’s how the morphine system goes in case you’ve never had surgery.) My husband was allowed to give me ice chips, which tasted great. I had a very dry/sweet/gross taste in my mouth and the ice chips helped a lot.
When they finally wheeled me to my room that evening, I was so pleased to find I had a private one. That was wonderful. They lifted me off the gurney, which hurt, but only for a minute. My husband stayed until around 9pm but then had to go--he had a 1 1/2-hour trip home. I was worried that I would feel lonely and scared, but the night went pretty well. I woke up every hour, but I was relaxed and the pain was tolerable. I could barely turn my head because of the incision down the back of my head and into my neck, but I lay on my side and that worked fine. I turned on the TV at times for distraction.
Thursday, December 05, 2002 – 1 Day Post-Op:
By morning I felt okay except for my queasy stomach. The nurse gave me some Pepcid type medicine in my I.V. and that settled my stomach. The resident doctor came in around 7am and asked me in detail how I was doing, tested the feeling on both sides of my face and tested my strength (hands and feet) and went through the litany of simple tests like stick out your tongue, smile, blink etc. He said that I wasn’t using much Morphine so he’d take me off that and give me pills instead. I told him that the skin on the left side of my head was numb, and he didn’t seem to think that was odd, probably from the clamps on my head during surgery, so I assumed it would figure itself out eventually.I had some tea around 8:00 AM and ordered lunch for later. When lunch came I was able to eat a few bites of a grilled cheese sandwich and a little of this and that without nausea etc. I was elated that I could eat--not because I was that hungry, but it had been a big problem after my other surgeries. A nurse came in to help me get washed etc. She took the catheter out, and took one of the IV’s out. Then I sat up in bed and slowly stood up. I felt a little dizzy but was able to walk without help. I asked her to stay in the bathroom while I brushed my teeth and washed up, though, just in case. It felt good to get back in bed afterward. My neck was very, very stiff and sore and just the weight of my own head felt substantial. I still had a big bandage up the back of my neck and head--the incision was about 5-6 inches long. My long hair was a frightening mess.
The night of my surgery, Pittsburgh had had a big snowstorm and it looked like my parents and husband couldn’t make it in to visit that first day. I felt okay though, and Lois and Julie, from Dr. Kassam’s office, came by because they figured that I wouldn’t have visitors because of the snow. They were so nice to think of me. My husband did make it in by around 3:30 PM. The rest of the day went by--I guess we talked and watched TV but I don’t remember exactly. I was still rather groggy but doing okay.
Friday, December 06, 2002 – 2 Days Post-Op:
The resident doctor came in at 7:00 am again and did the same easy tests and took off the big bandage on the back of my head. Took off more hair with it, too. I told him that I felt really good and was ready to go home. He said he would ask the group (of other doctors I guess) and come back later. I knew I was doing fine, and I was going to insist that I was going home even if they said no. When the resident came back he said I could go whenever I was ready. Hooray! I called my husband at 8am and told him the good news. He was as glad as I was. He said he was giving Spencer breakfast and would get to the hospital by 10:30 am or so. I started slowly packing up my stuff and I took a shower not including my head. That felt great. How I was going to wrangle my hair back into shape, though, was a mystery.Bill arrived as I was having some cereal and tea for breakfast. I was up and walking around fairly well except that I was easily tired out. The nurse went over some discharge stuff and I signed a few papers, then my husband wheeled me out and down to the first level to get our car. By the time we got there, I wasn’t feeling well, but I couldn’t put my finger on why. I felt tired and weak, but I figured it was the excitement. I got in the car and lay down, but then I felt worse. I sat up, then lay down again trying to find a position that would help me to feel better. As we drove out of the city, I was feeling feverish as if my blood pressure had dropped. I sat up and realized that I was going to throw-up. Bill pulled over, quickly handed me a plastic bag from the front seat, and I managed to use it. My throat burned like crazy. And I didn’t exactly get it all in the bag. YUCK. UGH. It was so upsetting. I peeled off a layer of clothes and lay down in the back seat for the hour ride home. I felt worse than I ever had in the hospital!
Later I realized why I had gotten sick. I had taken two Percoset that morning and then barely eaten anything. Not smart. I hadn’t been in that much pain, but I had thought it would help me sleep on the car ride home. The second big mistake. I also had told the nurse that morning that I didn’t need the Pepcid. Third biggie. Apparently I did. My stomach was burning up. When we got to my parents, I took a Pepcid and felt better after a few hours. I continued taking them over the next few days because my stomach didn’t like the pain medication, Vicodin. Looking back, I think that Advil would’ve been enough, but I was afraid to let the pain get ahead of me. Anyway, my homecoming was stressful, but it was great to see my parents and Spencer who lay down next to me on the couch throughout the day and hugged me tight. I missed him so.
Saturday, December 07, 2002 – 3 Days Post-Op:
I took Vicodin before bedtime (10:00 PM) and didn’t wake up until 5:00 am, which was progress. But I had a whooping big headache. I took another pill and slept for three more hours. I woke up feeling the incredible stiffness and some pain in my head. It felt like I was wearing a metal cap that had been nailed and clamped to my skull. Not a good feeling. I felt discouraged a lot (even though I was doing fine.) I didn’t have much of an appetite, but I ate things like toast and tea. The next few days were similar, but a week after surgery, I realized that I was doing much better. I had more mobility in my neck and less pain.
Sunday, December 08, 2002 – 4 Days Post-Op:
I washed my hair! Heavenly. I was nervous about the stitches, but Lois gave me the okay, so I went slowly and gently and managed to get most of the yuck out from around my incision and clean up my matted hair. I felt renewed.
Tuesday, December 10, 2002 – 6 Days Post-Op:
My mom drove Spencer and me back to NJ (my husband had already gone back so he wouldn’t miss so much work.) Dr. Kassam said I could have the stitches taken out by my physician at home instead of trekking back to UPMC. I’d be back in 2 months anyway, so the doctors would see me for a follow-up then. The 5-hour car trip wasn’t great, since I couldn’t get my neck in a comfortable position. But I was able to sleep a bit, and Spencer was entertained by the little car TV with a VCR.It was wonderful for Spencer and me to get home and see Bill again, as well as our dog, Norman, and be in familiar surroundings. I cried in relief. I slept better that night in my own bed, but I still needed pain medication.
Friday, December 13, 2002 – 9 Days Post-Op:
Before my mom took me to the doctor to have the stitches out, I decided to take a look in the mirror at the back of my head. Well, Frankenstein had nothing on me. There was a long swatch of hair missing and the incision, with those big black stitches, went from the middle of my head down into my neck. Thankfully the incision was covered by the hair from the top of my head. But it was pretty gruesome, and I felt a little queasy at the thought of what had been done. When my primary doctor saw the incision, he was quiet for a minute, and then he said, with such kindness in his voice, "Well, you’ve certainly been through a lot." His compassion choked me up a little, but I told him that it was all worth it to be free of the HFS. I meant that. The stitches came out pretty easily (I think there were 17) except for a few that pinched because of the scabs.My mom stayed in NJ to help for about ten days, which was great, and then my dad came out so we could all spend Christmas together. That was a perfect distraction. The day before my parents had to leave, I wanted to try driving to see if my neck had enough mobility. I went out for an easy drive and it was fine. The doctor had said I could drive after two weeks but I didn’t even try until the third week. It was harder to turn my head to look around for cars etc...but otherwise, it felt normal.
Friday, December 27, 2002 – 23 Days Post-Op:
I was very worried when my parents finally left for PA. I wondered if I’d have enough energy to take care of Spencer, but I did! And each week got easier, and my neck and head bothered me less and less.
Wednesday, January 08, 2003 – 5 Weeks Post-Op:
I felt really good. Still had some stiffness in my neck and the skin on the left side of my scalp was still numb, which made combing my hair really weird. Then it itched like crazy for about a week. But I knew these things would work themselves out. All in all, it was a very smooth surgery and excellent care at UPMC. I’m going in for my MVD in 3 weeks. Soon I’ll be spasm free!
Sunday, January 26, 2003 – 10 ½ Weeks Post-Op:
Three weeks flew by, and Bill, Spencer and I headed back to Somerset, PA and then Pittsburgh, PA for my MVD. This is the final, and most important leg, of this long journey. I am so excited at the thought of having a calm face again. It is almost hard to imagine. Sixteen years of HFS have passed in the twitch of an eye. But there were many long, sad times trying to cope, and to understand why I had lost control of my face, and then lost control of myself. My life seemed to go downhill as the HFS got worse. I was very hard on myself over the years. I desperately wanted to accept my strange face and not give a hoot what others thought or saw or believed about me or my twitching. I really thought it was a spiritual lesson of some kind, sent to teach me how to be a better person. And I thought I was failing miserably. I just couldn’t seem to get past this crazy affliction closing my eye and contorting my face into an unrecognizable one. It didn’t make it any easier that I’m a little person and have a long history of people staring at me. The HFS was just salt in the wound. I knew I would never be able to completely accept/ignore the symptoms no matter how hard I tried.Over the years, I did make progress in accepting how I looked with the spasms, and I had learned to talk with friends and family (and even some strangers) about the HFS and let them see the twitching in all it’s glory. That actually helped me to slowly come out of hiding. I also began to forgive myself and realized that the condition wasn’t my fault or some kind of nasty punishment. (I had blamed myself for years--I thought that because I had never fully accepted my dwarfism, or because I just wasn’t "good enough," that I had somehow triggered this other emotionally charged problem. Go figure.) Anyway, when I realized that I didn’t have to be perfect in order to be cured, I decided to let the doctors fix it, since I couldn’t! And if all of that sounded like psycho rubbish to you, it’s because this HFS really messes with your head, right? It brought out every insecurity I ever had and then some!
Tuesday, January 28, 2003 – Day before MVD:
My mom and I left at 6am to get to UPMC for my 7:30 am appointment and pre-admission testing. Bill stayed behind with Spencer, so he wouldn’t be away from him for two days in a row. The day went well except, again, I was pooped from the all the walking about, and also from the nervous excitement about the following day--MVD day. When we got back to my parent’s house late that day, I started packing my bag, and I suddenly got extremely nervous for the first time. Was I suddenly coming to my senses? Maybe I had made a stupid decision... Maybe I should reconsider...I decided to call my friend from the HFSA, Mary Larson, who was scheduled for her MVD with Dr. Jannetta in two days. We had been emailing each other after we discovered that our MVD’s were scheduled for the same day (at first, then mine was moved up a day.) In fact, there were six of us at the HFSA, who were going to either Kassam or Jannetta for our MVD’s in a span of two weeks. Anyway, I had never talked to Mary before, but as soon as I heard her voice, I felt like I knew her. I told her how nervous and anxious I was feeling. I figured she was, too. But actually, she was feeling very calm and certain, and her inner peace rubbed off on me. Within a few minutes I was feeling good about my decision for surgery. I once again knew it was the right thing for me. Mary calmed my fears like an angel. I remember her saying that in reading all the emails and diaries from people who had been through an MVD, no one had ever said they regretted it. Even the ones with lasting complications still felt that the improvement was well worth the surgery. I knew she was right. The odds were in our favor. I wanted my life back, and this was the way I was going to get it. Mary and I signed off and said we would talk again when we were spasm-free! It was great to have her as my MVD partner.
Wednesday, January 29, 2003 – "MVD Day":
Bill and I got up at 5:30 am so we could be at the hospital by 7:30 am. Surgery was scheduled for 9:00 am. I had requested Dr. Carol Rose as my anesthesiologist again, since she was so great during my Chiari surgery. She had said to email her a few weeks before my MVD so she could arrange it with Kassam’s office and put me on her surgery calendar. She even changed her schedule so she could be in the O.R. with me for the intubation (since I had to be awake and she had dealt with it before.) About an hour before surgery, she came to see Bill and me in the nurse’s area. I was so happy to see her again! Just to know that she was looking out for me was very comforting. She really made a difference. A very special person and an excellent doctor.At about 8:00 am, they were ready to take me to pre-op. I couldn’t believe it was finally time. MVD Day. Bill gave me a kiss and a smile and then they wheeled me away. I was ready, and I wasn’t as nervous as I had been for my Chiari. That surgery had gone so well and Dr. Kassam had said that the Chiari was a more difficult recovery than an MVD. The worst was over, I thought. This was just an easy re-run.
Dr. Rose met me in pre-op and got my I.V. started. She gave me a sedative and as they wheeled me into the O.R., I must have asked her how long until the surgery because the last thing I vaguely remember her saying was, "you’re almost there, you may not even remember this conversation." Then everything went black. Next thing I knew I was in the recovery room. I felt very, very weak and tired. I remember seeing Bill’s smiling face, but I barely had the strength to keep my eyes open let alone talk to him. I felt some mild twitching, but I was too zapped to really worry. I also knew that the spasms sometimes went away slowly after surgery.
The next thing I remember was being moved to ICU. My head hurt but the overall discomfort was hard to pinpoint. Opening my eyes seemed painful and sounds and lights really bothered me. I wanted to just keep my eyes shut tight and slip away. I felt pretty rotten but was almost too out of it to realize at first. The drugged/foggy type of confusion felt awful. I remember talking to a nice nurse, though, who offered me some Jell-O, which I reluctantly tried. It came right back up. The nurse got a plastic bin to me just in time. I decided not to try anything else. I just wanted to sleep anyway. Next thing I knew, the bed seemed surrounded by doctors. I guess they woke me up because I was surprised to find them there. Then my eyes suddenly focused on Dr. Kassam and I know I brightened up when I realized it was him. Apparently he knew how groggy I still was, because he held up four fingers close to my face when he told me that all four arteries which could have been involved in the problem, WERE involved in the problem. I guess some major cushioning of my seventh nerve had gone on in the O.R. I think the head resident asked me some questions and I did the same "smile, close your eyes, etc." test. I know Bill must have been around too, but I barely remember talking to him at all. I was really out of it. That night I was awake a lot and very nauseous. I don’t know how the TV got on, but it was annoying. (I remember worrying that there wouldn’t be a TV in the ICU, and I would be bored and uncomfortable, but now I didn’t want the stupid TV at all.)
Thursday, January 30, 2003 – 1 Day Post-Op:
I tried to drink again in the morning, but it came right back up. I felt terrible. I kept my eyes closed as much as possible and was still bothered by lights and sounds. I was moved at some point to a private room, but I didn’t take too much notice since all I did was curl up and try to sleep. At some point, a nurse took out the catheter and she helped me walk, and then sprint, just in time to throw up in the bathroom. My head was thrown forward by the awful wrenching, and I was really worried about the stitches. But everything held together somehow. I stumbled back to bed a quaking mess. I had never felt so miserable. I think they took me off the morphine, but then I couldn’t swallow the Percocet. They offered me Demerol in a shot. I decided to give it a go even though I couldn’t decide if the headache pain was really that bad or if I just felt horrible. The Demerol helped me sleep which was good but I woke up to a very nasty headache and so took more Demerol. That started a long cycle of big needles in my rear end.My butt still hurt 2 months later. Apparently, the shots are deep ones.
Friday, January 31, 2003 – 2 Days Post-Op:
I still couldn’t eat, but I was able to drink a little. I think I had Demerol every four hours. It seemed all I did during the day was wake up and get a shot. By the end of the day (this was the 3rd day in the hospital) I finally got down a little bit of food--a cracker and some milk I think, but it didn’t help me feel any better. The TV was on sometimes, but I couldn’t watch it without my head pounding harder. I noticed a little twitching but, frankly, I didn’t care.
Saturday, February 01, 2003 – 3 Days Post-Op:
I barely remember talking to my husband although I know he was there every day and getting worried. So was I. I couldn’t believe I had been in the hospital 4 days and was still very nauseous and felt so weak that I barely could get up to walk. The staff was great whenever I saw them, but I was really out of it. The night before, when I had felt so miserable, there was talk of a spinal tap to relieve my headache. I knew that this wasn’t as earth shattering as it sounded, but later I found out that my family was in a quite a panic when they heard. I finally told Bill that it had been offered to me as a possibility but not a necessity. I decided against it and that I could live with the headache. I remembered my c-section with Spencer and how hard it was for the doctor to get the epidural started in my spine, because my vertebrae are too close together.I wondered if Spencer thought I’d disappeared for good. I decided that I wanted to go home the following day even though I still had so little strength. I couldn’t stand the thought of the 1 1/2-hour car ride home but I wanted to try. I suddenly realized that I hadn’t felt any twitches. That perked me up a bit.
Sunday, February 02, 2003 – 4 Days Post-Op:
I drank and I ate a little more food although I had no appetite at all. My head was still pounding. I was shocked at how bad I felt compared to after my Chiari surgery when I was able to eat right away, etc. I started thinking that I should have waited longer than 8 weeks in between the two major surgeries. Dr. Kassam said it was enough time but my gut was telling me it was too soon. Oh well, live and learn. Several weeks later I emailed Shirley who had also had the Chiari and MVD done in the same time frame. She agreed that 8 weeks wasn’t enough recovery time before launching into another major surgery.I realized that there was no twitching at all! It was amazing to smile again (not that I was feeling like smiling at all.) The doctors said I could go home, but when my parents came to pick me up at around noon, I just couldn’t get myself out of bed. I thought I might throw-up on the way out of the hospital and then in the car etc. It took almost 3 hours of lying there in my hospital bed before I got up the gumption to get dressed and leave. I held my breath the whole ride home feeling absolutely awful, but I made it.
Monday/Tuesday, February 03 – 04, 2003 – 5&6 Days Post-Op:
I took Advil for the pain since Vicodin had upset my stomach and made me constipated after my Chiari surgery. Both days I lay on the couch with Spencer, usually right next to me. I barely moved and ate very little, but I was happy to be back at my parent’s house. Dad said later that I looked like a helpless rag doll. That’s about how I felt.
Wednesday, February 05, 2003 – 7 Days Post-Op:
I had an appointment at UPMC to have my stitches out, but I was really dreading the car ride. I lay down the whole time and tried to sleep. My dad pushed me in a wheelchair into the hospital because I was so weak. As we went inside, I had a brief moment of habitual nervousness about hiding my face, and then I realized that I no longer had to! I started smiling at everyone. It was the first time I really felt the wonder of being SPASM FREE ! Seeing Lois, and being up and about, also really lifted my spirits. Lois was very impressed by my calm face. She also seemed surprised at how even my face looked (no drooping) since I had HFS for 16 years and Botox for 4 years. She thought my facial muscles would have been weak for awhile, but they weren’t.The stitches came out easily, too.
Dad and I left UPMC and I felt much, much better. So did he. And I was finally hungry when we got home. I ate two bowls of chicken noodle soup and felt human again for the first time since my surgery.
I sat up at dinner too and started to really come alive. I had started to think I would feel rotten forever!
Thursday, February 06, 2003 – 8 Days Post-Op:
My mom drove Spencer and me back to NJ. It was a very uncomfortable/nauseous ride but I made it. I was still using Advil especially at night. I sat at the computer for the first time for about five minutes and got a major headache! I also realized that my vision was blurred in my left eye (MVD side.) No wonder I wanted my eyes closed when I was in the hospital. It was painful to try to focus on anything. My right eye must have been doing most of the work for many years so maybe it was going to take my left eye some time to catch up.
Friday/Saturday, February 07 – 08, 2003 – 9&10 Days Post-Op:
I finally slept well but woke up with a headache and took some Advil. During the day I didn’t need any, though. I was feeling more and more energy but had to be careful not to over do it and trigger a headache. I had a little bit of fluttering or pulsing under my eye and it really scared me at first. But it never progressed into anything so I was greatly relieved. I was indeed spasm-free and feeling happier each day.Salty foods were the only ones that were remotely appealing to me, but one day I decided to try a chocolate chip cookie that my mom made. Oh, it tasted awful. Not because the cookie was bad, but because it tasted salty! I had remembered reading about taste changes in other MVD diaries, so I wasn't completely taken by surprise. As it turned out, all sweets tasted really bad for quite awhile. It was kind of depressing because instead of just avoiding them, I kept trying more sweets in the hopes of finding the same old pleasure I remembered. At around two months post-op, I suddenly realized that the problem was gone. Bring on the cookies!
3 Weeks Post-Op:
I woke up one morning and had the strange fluttering in my upper eyelid. It was actually pulling my eyelid shut a bit and it really scared me! My mouth got into the action on and off that day and I was so upset (even though it was very mild compared to my previous spasms and tonus.) The twitching went on for about 4 or 5 days but it diminished slowly and then disappeared all together. Thank God! After that, I felt happier than ever! I’ve done more socializing in the last week than I’ve done in several months previous to my MVD. I feel released from prison! It’s so indescribably wonderful to be free again.”
7 Months Post-Op:
I’m free! I’m free!, I feel as if my life has been restored! My calendar is all filled up with things that I would’ve previously avoided because of the spasms. I’m actually a little busier than I want to be these days, but I don’t turn down anything anymore, and I’ve noticed a huge change in Spencer, too, who just turned 3. He is also much more social and smiling and just happy to go out. Before my MVD, I was hesitant to really live and move forward and it had rubbed off on my son. Not now though. We are both jumping in feet first and loving it--smiling more than ever.Please feel free to email me at genoves1@optonline.net with any questions at all. .