MVD Diary - Lori Krol
Wednesday, November 12, 2003 - Day before MVD
I finished my last day of work today and said my goodbyes to my co-workers. I work with a great group of people and I am going to miss them a lot. My husband, Mike, and I went to our favorite restaurant and had dinner with my friend, Camille. We got home around 8:30pm, so I talked to Darlene (who’s also in the HFSA Support Group) online and she answered all my last minute questions. After we were done, I finished packing my suitcase and off to bed I went. I didn’t sleep very well because we were having a terrible thunderstorm with high winds, and I was afraid that our electricity would go out and we would miss our wake up time of 3:30am! 3:30 am came in no time and off we went to the hospital. I was so nervous I thought I was going to jump out of my skin!
Thursday, November 13, 2003 - "MVD-Day":
Mike and I got to Allegheny General Hospital at 5:30am. My surgery was scheduled for 7:30am. We met my mom, brother, and 2 sisters in the lobby and we went to the registration area on the 11th floor. I didn’t get registered until 6:05am and then I was led into a semi-private room where I had to change into my hospital gown. I gave my clothes to Mike to take home with him. Rick, Dr. Jannetta’s Physician’s Assistant, came in and explained the procedure and answered any questions that my family or I had. The nurse then came in and asked me some more questions. I was then taken to the pre-op holding area at 7:30am. In this area, there are doctors and nurses coming in an out. There’s a lot of activity occurring and the recovery room is on the other side of the room. Rick came over and talked to me. He asked if I had any last minute questions and I couldn’t think of any. A few minutes later, Dr. Jannetta and Dr. Casey came over to me and joked a little to help calm my nerves. They explained what was going to take place and I asked them both that they just do their best, and they promised me that. The anesthesiologist came over to me and answered any questions that I had. The only concern I had was that I would become nauseous and she said she would take care of that by giving a medication in my IV to prevent that. I felt much better already. At 7:45am they started an IV with just fluids. My anesthesiologist was very nice and comforting. At 8:14am I was finally wheeled into the OR. They asked me to get onto the operating table, which I did. I saw Dr. Casey in there looking at something on the wall (It must have been my CT Scan or X-rays), but I was too nervous to say much of anything. The anesthesiologist said that she was going to inject something into the IV to make me sleepy and then a mask was going to be put on my face. Well, I don’t even remember the mask being put onto my face. I was out cold. The next thing I know was that I was waking up in the recovery room and it was 1:30pm. (I asked my mom later what time they were notified that I was out of surgery, and she said Dr. Casey went out to the waiting area to see them at 12:30pm and even drew a diagram of what they did to me in surgery. She said that he was very nice and informed them of everything). The nurse was asking me my name and what I had done. I was still pretty groggy, but I was able to answer the questions. I think Dr. Jannetta came over to me also and asked me to squeeze my eyes shut tight, but I’m not positive about this. I was still pretty groggy at the time and don’t remember much. In the Recovery Room...
Friday, November 14 and Saturday, November 15, 2003 - "Day after & Two Days Post-op":
I was moved to a regular room at 2:15pm on Friday. The nurses (Amy and Peggy) were wonderful!! They gave me lunch and dinner and pain medications; whatever I needed they were right there for me. My entire family came to visit me and it felt so good talking to them without any spasms. They commented on how calm my face looked and how much younger I looked. It felt so good to hear those words! Well, around 8:30pm, after my family left, the tide turned and I got violently ill. I vomited a couple of times throughout the night and most of the day on Saturday. I didn’t feel “at my best” anymore. The nausea subsided Saturday night.
Sunday, November 16, 2003 - "Three Days Post-op":
On Sunday morning Rick stopped by to see me. We decided that since my nausea subsided I could go home, which is only 50 minutes away. Mike and my mom came to the hospital at noon and I got a shower before we headed home (boy did that feel good!). I said goodbye to the great nursing staff, my roommate, and off I went to home sweet home. Home...
Monday, November 17, 2003 - "Four Days Post-op":
I felt better today, but still didn’t have much of an appetite. I was so focused on my vomiting and nausea that I didn’t notice that I am still spasm free! No twitches, no flutters, nothing! I smile a big smile for my hubby. My head feels a little tight because of the staples and stitches, but it’s not unbearable. It’s just an annoyance. My neck’s starting to feel tight also, and I remember reading in Darlene’s diary that you should keep moving your head around which I did, and it really helps! I’m also just taking extra strength Tylenol for my headache. It’s really not that bad. Tonight though I’m going to take a Tylenol with Codeine to help me sleep.
Tuesday, November 18, 2003 - "Five Days Post-op":
Feeling better! No nausea and still spasm free. I’m still very tired though and take lots of naps. My back starts to really ache because of how much lying around I am doing. My mom starts rubbing Aspercreme on my back to help with the pain. I’m still taking the Tylenol as well. I wake up in the middle of the night with terrible back pain and a headache. My collar on my pajamas is also wet, but I think it’s just sweat(little did I know that it was a spinal fluid leak). I look for the Aspercreme and can’t find it so I have to wake up mom. She gets it for me and rubs it on….Ahhh Thank God for Mom!
Wednesday, November 19, 2003 - "Six Days Post-op":
Once again I’m feeling better, except I have a little nausea this morning. I think it’s because I have some drainage going down the back of my throat. I call Dr. Jannetta’s office and they say it’s ok and that I can take Allegra or Actifed to help with that. My stomach started to feel better so I ate an egg. It didn’t taste too good. In fact, it tasted like metal. It seems like my taste buds have changed. Later on I help my mom peel potatoes and carrots for dinner. Since Monday, I’ve been walking to the mailbox at the end of the driveway to get some exercise, but it was too rainy to do that so I walked on the treadmill for five minutes. I am pretty pooped, so I take a nap for about an hour. After dinner, I play a board game with Mike and my mom, but I had to quit after the second game because my back started to hurt. I also notice that I am starting to leak some clear fluid out of my incision but think nothing of this.
Thursday, November 20, 2003 - "Seven Days Post-op":
I felt more energetic today, which in my case isn’t always good! I decided to “use up” some of the energy and vacuum the dining room floor. Well, let me tell you, I was totally exhausted! I had minimal energy for the rest of the day! I got some company today, my brother and his family came to visit! I was tired, but it felt so good to have visitors. My best friend and another friend came to visit too! Before I crash into bed I notice that my incision is still leaking this clear fluid but still think nothing of it.
Friday, November 21, 2003 - "Eight Days Post-op":
Well, I ventured out today for the first time. We went to Wal-Mart and to our favorite restaurant to eat dinner. It felt good to get out of the house and to show off my new face! However, when I got home I noticed that my turtleneck was drenched! I also noticed that I had a very bad headache. I went to bed early and kept waking up with a very bad headache.
Saturday, November 22, 2003 - "Nine Days Post-op":
In the morning, I checked my email and there was one from Darlene. I had asked her the day before if she had this leakage after her surgery. She responded in this email saying that she didn’t have the leakage and that it sounded like a spinal fluid leak and told me to call Dr. Jannetta’s office. It was Saturday and the office was closed so they had the on-call physician call me back. He told me to get to the Emergency Room. So, I called my friend Maureen (my husband wasn’t home at the time) and she took me to the AGH ER and eventually Dr. Casey came in and examined me. He said that I did have a Cerebral Spinal Fluid Leak and they would need to put a lumbar drain into my back. I had a leak in my second layer of stitches that was causing pressure in my head, and that’s what was giving me the headache. Then Dr. Casey’s resident physician, Ernie, came in and he pulled out my staples and re-stitched my incision. He numbed half my face so I didn’t feel anything. Then at 3:30pm they put me into a regular room upstairs and Ernie said that he would wait until I got situated in my room and then he would put the lumbar drain into my back. By this time my headache was getting worse. Needless to say, Ernie didn’t get to my room until 10:00pm! He had some emergencies that he needed to attend to in the ER. By this point my head was ready to explode! My terrific husband kept rubbing my temples, which helped a little, but I was in a great deal of pain. Ernie put the drain into my back, which hurt because there were shooting pains down my legs. This pain only lasted maybe 20 seconds though (my nurse Sandy stood there and held my hand and talked to me. She was wonderful!) and then it was instant relief!! My headache was gone! It felt so good! I couldn’t even feel the drain. I got situated in my bed and Mike came back to the room and at this point we were both pretty exhausted. So Mike left and I fell off to sleep. At 3:30am I woke up and my head was hurting again. Sandy, my nurse, said that they would have to keep adjusting the drain and that I would be having some headaches for a few days until the drain was adjusted just right.
November 23 - 27, 2003 - "Days 10 - 14 Post-op":
Dr. Casey came in on Sunday morning and said that if my incision didn’t leak anymore, then I could go home on Thanksgiving Day (which was still 4 days away), but if it did leak then I would have surgery again and they would repair the second layer of stitches in my head. He said that the lumbar drain works only 30% of the time, so I knew that the odds were against me. So, for the next five days I was in bed at no more than a 30-degree angle and had to do my bathroom business in a bedpan. Every morning Dr. Casey would come in and make me hold my breath and bear down to see if the stitches would leak which they didn’t!! I thanked God everyday! On Wednesday night, I noticed something “wet” running down my neck and thought “Oh No! Please God don’t let that be fluid!” So, I called the nurse in and she said it looked like there was scab on the area where the last staple was pulled out and there was a pus-like substance leaking out. So she put a bandage on it and said she would keep an eye on it. On Thursday morning, Rick and the doctor on duty looked at it and said just to keep it covered. Rick then took my drain out of my back and said I could take a shower…finally!!! It took me an hour to get into the shower because I was so weak from not being out of bed in six days. Mike came in and helped me get a shower. Boy did it feel good! Rick then came back, looked at my incision, and said I could go home for Thanksgiving! I was so excited! We ended up leaving at 2:00pm and got home at 3:00pm. Mike put the turkey in the oven, fixed all the trimmings, and I ate dinner at 6:30 with Mike and my two stepdaughters. It was delicious! The rest of the evening I watched TV and slept. It turned out to be a nice Thanksgiving after all!
November 28 - 39, 2003 - "Days 15 - 18 Post-op":
I’ve been doing well these past three days. I have been getting my energy back slowly. Mike and I actually went to Giant Eagle on Sunday. It felt good to be out. The only concern I have is that I still have a brown milky discharge draining from where my last staple was. I will call Dr. Jannetta’s office tomorrow to see what can be done. I thank God everyday that I haven’t leaked any spinal fluid. So far so good!!
Monday, December 01, 2003 - "Day 19 Post-op":
I called Dr. Jannetta’s office and they gave me an appointment for tomorrow morning. I went to Sears today to do some Christmas shopping and it felt good to get out. I got tired pretty quickly and needed to take a nap when I got home. My incision is still leaking so I’m looking forward to my appointment tomorrow.
Tuesday, December 02, 2003 - "Day 20 Post-op":
I had my appointment with Dr. Jannetta today. He said that my incision is infected and he gave me antibiotics. I also have to put a hot compress on it three times a day. He wants to see me again on Friday. He also said that if I start running a fever or get a bad headache to go to the ER. After the appointment, Mike and I went to Wal-Mart. Boy was I pooped at the end of the day! But I got a lot of Christmas shopping done!
Wednesday - Friday - (12/03/03-12/05/03) - "Day 20 - 23 Post-op":
I woke up on Wednesday with a massive headache, and it seemed to get worse as the day went on. Around 7:00pm I took my temperature and it was 100.7. So my husband and I headed back to the ER. They did a CT Scan and saw that I had an abscess in my head. Ernie said that the infection wasn’t responding to the antibiotics, so they admitted me. The nurse then came in and gave me some morphine in my IV for my headache. At this point I was ready for anything because my head was starting to hurt bad. When he put the morphine into my IV I started to get extremely woozy. It was such a weird feeling and I got scared for a moment because I never experienced this feeling before! I told the nurse to stop but he told me I would feel better in a few seconds and kept giving it to me. Well, in about 20 seconds or so I felt absolutely wonderful!!! No more pain! What a feeling! Now I know why a lot of people like that drug! On Thursday, Dr. Casey came in at 2:00pm and said they were going to operate on me again. So I called my family and told them this. They all came to the hospital to see me and at 5:00pm they took me into the OR, re-opened my stitches, washed out the infection with an antibiotic fluid, took out the metal plate in my head (my hole was closed and they didn’t want a foreign substance in my head) and checked the inner incision in my head to make sure it was sealed (and it was!). I woke up in the recovery room at 6:30pm with some thick stitches in my head, but I felt good. On Friday, I was still feeling good so they released me. I went home with an antibiotic and some pain medication. I didn’t get sick from the anesthesia either! The anesthesiologist told me before I went into surgery that the reason I got sick after the first operation was because of the operation itself and not the anesthesia.
Saturday - Tuesday - (12/06/03-12/09/03) - "Day 24 - 27 Post-op":
I have felt good during these four days. I have had minimal pain (except for the incision which is real tight) and have been sleeping a lot. We started putting up our Christmas decorations, and I find myself getting tired fairly quickly. We plan on going Christmas Shopping on Thursday. I can’t wait to get out of the house! I did call Dr. Jannetta’s nurse on Tuesday because some blood is leaking out of my incision and she said that this is normal and it should stop.
Wednesday – Sunday - (12/10/03-12/14/03) - "Day 28 - 31 Post-op":
The last five days have been very good. My incision is still leaking some blood and antibiotic fluid, so I called Dr. Jannetta’s office once again and Kathy said it’s normal and will eventually stop. Mike and I have gone to the mall and to some Christmas parties. It has felt so good to get out and show everyone my spasm free face! I am also going back to work on Monday (12/15/03) for three and a half-hours per day. I’m excited to see my fellow workers and to get back to doing something productive. I am a Mental Health Specialist, so most of my work is deskwork. The next event I’m looking forward to is my appointment with Dr. Jannetta on 12/23 and hopefully I will get my stitches out. They’re starting to become very uncomfortable.
Tuesday, December 23, 2003 - "Six Weeks Post-op":
Today, I am going to see Dr. Jannetta. This past week has been very busy, but no major crises have occurred. My incision stopped bleeding four days ago and it’s very itchy! I’m hoping to get the stitches out today. I started working last Monday (12/15) for 3.5 hours per day. After work, I’ve been going home and taking a nap, which makes me feel better. Ok, now off to see the doctor! Well, my stitches didn’t come out. Dr. Jannetta wants to leave them in for one more week. I think I can handle this. He said the incision looks very good. I asked him some questions while I was there such as: when can I exercise and do housework? He said to take it easy, but I could start doing my spinning class if I want but no lifting weights for a while. I asked him about bowling (because I bowl in a league) and he said I could try it but if I start hurting to stop.
Tuesday, December 30, 2003 - "Seven Weeks Post-op":
Well, I had a very good week. Christmas was wonderful with our family and friends, but I was pretty tired and nearly passed out at the end of the day. I did try bowling on Saturday but only threw four frames. My head started to really hurt and I could feel the stitches pulling, so I needed to stop. I saw Dr. Jannetta’s nurse, Kathy, today and she took out my stitches. Her and another nurse had a little trouble getting them out (these were the stitches they put in after my second surgery for my infection), but it feels so much better! The incision is much looser! Kathy said I don’t need to be seen by Dr. Jannetta again for 3 months. In the meantime, I should get my strength and energy back and be like my “old self” again (minus the spasms!).
Tuesday, January 06, 2004 - "Two Months Post-op":
Well, it’s been almost two months since my MVD and I am still spasm free. I do have a few very mild flutters around my eye, but this only occurs when I am very tired at the end of the day. But these have even subsided. This has been a very long, difficult journey for both my family and I, but in the end it has been well worth it! I want to thank Dr. Jannetta, Dr. Casey and their entire staff for their genuineness, honesty and most importantly their expertise. Not only did they take my spasms away, but they also gave me my life back! I also want to thank my dear family who has been so wonderful! Especially my husband, Mike and my Mom who were godsends for me. They helped me tremendously in my recovery and gave me lots of Tender Loving Care. The rest of my family and friends were also so supportive and caring and I want to thank them as well. Most importantly, I want to thank God. Without him I would not be the happy, smiling spasm free person that I am today. This journey really opened up my faith and to reconfirm that God is always with me everyday of my life.