MVD Diary - Paula Jackson
Diaries and information from the HFS site were tremendously beneficial to me and helped me make the life changing decision to have MVD surgery on October 26, 2004. Details on how I lived with HFS and came to the decision to have surgery are posted at the HFS Personal History Link. What follows covers 1-week pre surgery to 4-weeks post surgery.
One Week Pre-op
Surgery is set for October 26, 2004 in Winnipeg with Dr. Kaufmann. Most of the plans are in place. As I’m too frightened to fly we are taking the train from Union Station, Toronto. I get home from work and my husband is sick. He’s sneezing and coughing. Oh no, I can’t get sick too! What if it means I can’t have the surgery? I don’t think I can wait any longer. I run around disinfecting, and changing towels. Later I check in on the postings by the group and I am very touched by a few, cry and feel better afterwards.
4 Days Pre-Op
We leave tomorrow. I’m getting really teary now. A few different friends drop by throughout the evening. Most don’t stay long; they just want to give me a hug. I’m so blessed to have such wonderful family and friends. I know I’m not going to die from this surgery but I can’t help thinking every time I say goodbye to someone "please don’t let this be a permanent farewell." Why such gloom and doom? Could it be the distance we are traveling is giving me a real sense of separation?
3 Days Pre-Op
2 Days Pre-Op
We arrive around 3:00 p.m. at the Winnipeg Union Station. What a beautiful place! The smell of popcorn draws me over to the popcorn stand and of course I can’t resist buying some. A taxi comes and off we go to the Lennox Bell Lodge. Dr. Kaufmann’s staff had sent us a brochure about the lodge and we booked a room because it is attached to the hospital by a tunnel. Without a car this will make things easier for us. I can’t believe how nice it is here. As we sign in I’m handed a note that is from another member Tracey Stangel. She just had her MVD with Dr. Kaufmann on October 22nd There is a phone number where I can reach her and I’m happy I’ll get to talk to her later. We continue to look around and see a kitchenette with fridge, stove, microwave and a spacious living room that is shared by anyone staying there. They even have laundry facilities, not that I think I’ll be worried about dirty laundry! We head towards our private room. It isn’t a very big room but is clean and very quiet. There is a washroom, single bed, cot, dresser, desk, nightstand, TV, and the room door locks. Good enough for me! We decide to order in some Chinese food and enjoy it thoroughly. I call Tracey and I’m elated to find out she isn’t experiencing much pain or fatigue. As a matter of fact she’d just been shopping! I feel a lot more at ease about the surgery now. Having not slept on the train last night I have no problem drifting off tonight.
1 Day Pre-Op
October 26, 2004 – Day of Surgery
Well if I thought sleeping on the train was difficult, last night was even harder. I’m awake before the alarm goes off at 4:30 a.m. I take my shower and dress. Wish I could have a cup of tea but that’s out. Finally we head through the tunnel to the hospital. I can’t believe how many people are awake and about at this time of day. We arrive at the admitting station. Everyone is so organized. Never am I left to just sit and think. Before I know it I’m being handed a purple bag with my name on it and asked to change into the hospital gown and put my belongings in the bag. Next thing I know the IV is going in, long white socks are put on me and they’re wheeling me down the hallway. Boom, I’m in the operating room and I look around and I’m surprised how small the room is and how many people are in it. Next thing I know there is nurse with a great big smile gently holding a face mask above me and saying ever so cheerfully "it’s time, it’s time for your operation". I wonder why I’m not going under yet? I thought I’d be asleep by now? All of a sudden I can hear myself saying 1954. Why am I saying my birth year? There are people all around me and I’m aware that they are asking me questions. Where are you, what day is it today? I must have answered incorrectly because I later learned that they kept me in recovery a few more hours during which time I slept. I was told that Dr. Kaufmann came to see me but I have no recollection. My husband however remembers seeing him. Dr. Kaufmann told him the surgery went better than expected. The vessel wasn’t nearly as imbedded as he once thought. It was just a matter of lifting it off the nerve. My husband is very relieved that I’m ok and is so emotional he needs to take a walk outside. Next thing I know I’m in the step-down unit and being asked to squeeze my eyes shut, smile, and stick out my tongue. Why are they making me do this? A nurse brings me some ice chips. They feel so good on my lips and quench my thirst. Then comes sleep. Then come the questions again. I vaguely remember my husband talking to me and telling me my face isn’t in spasm. Then comes more sleep. When I awake my head feels really heavy and I have a really stiff neck. Slowly it dawns on me that my face isn’t in spasm. I try everything to see if it will but nothing happens. I remind myself not to get too excited because they likely will return for a while. A tray of food is delivered and I have a little. All of a sudden I feel sick and decide not to eat anymore. The nausea starts to wear off and I sleep. My husband comes to visit me again and I’m much more alert. It feels good to have him with me. He tells me how good I look for just having had surgery. I find out that only a tiny bit of hair on my head was shaved. I tell the nurse that I’m surprised. The nurse tells us they’ve found that it is actually better not to shave a lot of hair. The more hair that is shaved, the more chance of tiny little nicks being made, that in turn are open to infection. I’m quite pleased they do it that way now, although I would have gone bald in order to have the operation if necessary. Visiting hours are over and my husband leaves looking a lot less anxious. I’m happy for him. He has had so much to deal with lately. It’s turning out to be a very long night. So much is happening all around me, and the noise or the questions or the taking of vital signs every two hours, constantly interrupts my sleep. The nurse is very pleasant and attentive though. She brings me medication regularly and I don’t remember feeling any pain. She asks me if I want to keep on the white stockings. There is a machine that is wrapped around my legs and pumping air against them (similar to a blood pressure cuff). I ask her if I can keep it on. She’s surprised because most people can’t wait to get it and the stockings off! I love it because it feels like my legs are getting a massage. She’s says no problem, it’s good for your circulation
1 Day Post-Op
That afternoon I’m moved to a semi-private room. I’m surprised and find out that all the rooms are semi-private. There is an elderly woman there and I’m placed in the spot beside the window. I seem to be there for a long time without anyone coming and I fall asleep. I wake up with a massive headache. The pain is dreadful. Shortly thereafter a nurse pops by and asks if I would like something for pain. Yes please!!!! She brings me Tylenol #3 but it seems to take forever for the pain to die down. My husband arrives and decides it’s his job to get me to eat and nags until I get a little down before he leaves. Later, I start to feel the pain again and with it comes nausea. I wait and I wait for them to bring the pain medication but they don’t come. What I don’t realize is now that I’ve been moved to a ward I have to ask for it! My husband arrives later and seeing me this way tells the nurse that he wants the medication to come automatically. She says that’s no problem. It takes a long time for the pain to ease. Apparently that happens when you wait too long to take it. Eventually I start to feel better and my husband urges me to eat supper. He keeps telling me that I need the nourishment to get stronger. I manage to get some broth and Jell-O down.
Another rough night, they are doing a procedure on the woman beside me at 10 p.m. and she is yelling out in pain. The curtain is drawn but I can visualize what she is going through and it upsets me. Finally they give up trying and leave. I look on my bedside tray and notice a piece of paper. I put on the night-light and realize it’s an e-mail from my co-workers. They e-mailed the hospital and asked to have it delivered! I never knew you could do this and it couldn’t have come at a better time. Just reading the words makes me feel better. Maybe now I can get to sleep. I don’t sleep though and I’m starting to feel the pain and nausea again. I realize that I should have had my medication an hour ago. They didn’t bring it. I go to the bathroom and peer out into the hallway. No one is around. I hate feeling so vulnerable and dependent. Now I know why some people bring their own pain medication and Gravol with them. I manage to get back to bed and squeeze the call buzzer. The nurse comes right away and says she’ll be back with something. She brings it quickly and at some point I drift off to sleep.
2 Days Post-Op
Dr. Kaufmann’s assistant and all the others drop by again in the morning. I’ve had my medication and feel really good. I think I’ll go for a shower I tell him. He says I didn’t get to go home yesterday because Dr. Kaufmann didn’t have a chance to come by and see me. I tell him I don’t think I was ready anyway because I had a really rough night. My husband arrives and encourages me to eat some breakfast. The nurse asks if I’m ready to go for my shower. She tells me I can wash my hair too. I can’t believe that I can get my incision wet! The warm water feels so good that I don’t want to leave, but I start to feel dizzy and sit on the stool. Gradually I dry myself and put on my own nightgown, which feels a lot better, then those hospital gowns. Carefully I make my way back to the room. Again comes the pain and nausea but I still haven’t ever actually vomited. I take some more Gravol and pain medication and drift off to sleep. Later comes lunch. Just the site of the shepherd’s pie makes me want to vomit so I decline. After lunch my husband takes me for a little walk and as we are coming back to the room the nurse tells us that Dr. Kaufmann is on his way to see us. He arrives with a nurse that has been looking after me and someone else. They are all smiling. I tell him how happy I am with my "new look" and smile back. I tell him how thankful I am for his work. I can’t believe that this man was actually inside my head! He reminds me that I likely will have a few spasms before they are gone for good. He asks when we are going back to Ontario and we tell him we are staying at the Lennox Bell Lodge until Sunday morning. He says I can go back to the lodge if I want to finish recovering there. If there were a problem I’d be so close to the hospital to be able to get help. I decide that if I have to feel sick, constipated and in pain then I’d rather do it in privacy. I get dressed and we wait for the paper work and prescriptions to be drawn up. Before I know it I’m making that walk back through the tunnel to begin my new SPASM FREE life. My husband goes to get the prescription filled. I feel another slight flutter but it only lasts for a few seconds. Later that day Lucille and her husband drop by the lodge and bring me flowers. I’m so touched. We go into the lounge and talk for a while, swapping our HFS histories and surgery stories. I think my husband is enjoying the chance to talk with another husband who has gone through this with their wife. Lucille reminds me that I shouldn’t over do it and to make sure and get plenty of rest. I sleep well that night and only have to take pain medication once.
3 Days Post-Op
4 Days Post-Op
I sleep through the night without any medication but wake up with a headache and take regular Tylenol. I do feel much stronger now though. We have a wonderful brunch with Lucille and her husband. I feel like I’ve known them forever. They are so easy and enjoyable to spend time with. They drive us around and show us some of the Winnipeg sites and we take a short walk and some pictures. I start to tire and feel shaky. Lucille picks up on this right away and sits us down for a rest and a cold drink. Soon after we say our good-byes and I feel blessed that I’ve been able to meet someone so wonderful, who is also a part of this group. I decide if it’s possible I’m going to the next HFS conference to meet some of the others. I sleep for the rest of the day and then pack what I can and make some phone calls home. I can’t believe we’re leaving tomorrow.
5 Days Post-Op
I wake up pain free and we head home on the train. My husband has arranged for our sleeper car to be next to the dining car so I won’t have to fight the motion of going through numerous cars to get to it. One could get dizzy just walking between cars, sort of like going through a fun house. The attendant keeps my bed down so I can rest when I need to during the day. I think about all the times I dodged the camera and can’t believe how often I’m asking my husband to take my picture. I’m much more sociable. I am looking people in the eyes and actually asking questions and taking part in the conversations. At supper the headwaiter asks to have everyone’s attention and announces that it is my birthday! He is kind and doesn’t mention it’s my 50th. Everyone in the dining car is looking at me and singing Happy Birthday. I start to panic and then realize that I don’t have to hide from strangers anymore. I give them back a great big, wiggle free smile!
6 Days Post-Op
We arrive in Toronto and a very close friend is there to meet us. She is the first person I know, other then my husband, who sees my new look. She is so happy for me. She drives us back to my daughter’s fiancé’s home so we can get our car and drive back to Hamilton. I call my daughter from there and she says she’s on her way over. She can’t believe the difference. She says she really didn’t notice the spasms much before. She was so used to them. However, now that they are gone she says it is very noticeable. My husband is feeling very tired so we end the visit and head back to Hamilton. I realize that it’s true that there really is no place like home when I flop exhausted in to my own bed and sleep like I’ve never slept before.
10 Days Post-Op
I’m going for short walks now and can feel myself getting stronger each day. I still get the odd dizzy spell and I tire easily. I remind myself I have nothing to prove. My incision is healing, but it’s very itchy and driving me crazy! I find I can’t stay in front of the computer screen for long or a headache comes on. My ear on the side of surgery starts to feel plugged. I remember hearing that this can happen. I’m ok with all of this though because I’m so happy. Later that week I have my first dream that the spasms come back. I wake up in a panic only to realize it isn’t real.
2 Weeks Post-Op
I go to visit my family physician and she is so happy for me. She asks me lots of questions about the trip, the surgery and how I’m doing now. She tells me I shouldn’t even consider going back to work yet. I call Dr. Kaufmann’s office as requested. The nurse assures me that the dizzy spells and headaches are normal and will decrease with time. I’m starting to get the odd sharp, shooting pain around the incision site, but they only last for a second. I’m having trouble sleeping and seem to have more energy now then I did before the surgery. I think part of the reason might be because I am so HAPPY ...it's like an adrenaline rush. I wonder why I can’t sleep. Is it excitement because everything is going so well? Why haven’t I had any spasms? I was prepared to wake up with some and watch them disappear with time but I haven’t had any. I find it hard to believe that I could be so fortunate. Could I handle it if they started up now? I think it would feel like a cruel joke.
3 Weeks Post-Op
I haven’t had much pain or dizziness for almost a week. I think I’m pretty much healed and decide to go out for the day. Later that night I go to a Guiding meeting too. It’s wonderful to feel so good. I guess I spoke too soon. I wake up in the morning with a headache as bad as when I was in the hospital. I haven’t had one like this since 2 days post-op! How can this be? It scares the $%%# out of me! Does this mean the spasms will be coming back too? I actually break down and take Tylenol #3's all day, which upsets my stomach, which causes me to feel really nauseated. Could it be I did too much yesterday? Did I overdo it? I get an e-mail from Tracey who tells me something similar has happened to her too, a result of her doing too much. The next day the headache is still there but not as strong. I still need the Tylenol and Gravol though and I don’t go anywhere today either. The next day I wake and there’s no pain or nausea and I feel so relieved. I take it easy all day but I do decide to get out for a few minutes and try and drive again. I’m nervous at first but it gets more comfortable. I have a little pain but I think that is from turning my head from side to side while checking my blind spots. I decide not to drive any long distances for a while.
4 Weeks Post-Op
No headaches, dizzy spells, or ear fullness now. I only have the odd shooting pain, that seems to come from the incision site. It's like a shock...over before you know it and it isn't happening very often. The best part is I'm still SPASM FREE!
Final Comments
I’m going to try hard not to spend time worrying about the possibility of the spasms coming back. I’m just going to enjoy the time I have without them, and if my luck continues I’ll never have them again. If they do come back, I’d definitely look at having another MVD. My experience was a very positive one. I found the staff at the Health Sciences Centre exceptional. Everyone was friendly and helpful. I've heard some horror stories about how people are treated in hospitals but I can honestly say they were wonderful. I am so grateful for my new family physician, because she knew right away what this condition was. I don’t know how I could ever thank Dr. Kaufmann and his staff too. I wonder if they even realize the extent to which lives are positively changed because of them. I certainly couldn’t have done this without the support of my husband, family, and friends too. I also would not have been able to make such a life changing decision, had it not been for the HFSA support group and the information on the site. Thank you all from the bottom of my heart.