We dropped our children’s belongings off at our friend’s house. Moving in would be a better description. She must have wondered when she saw all the stuff coming in! I teased her that she put a jinx on me the day before because she called to see how I was doing and asked me if I was sick or anything! After a few parting words, we were on our way just after 9:00a.m. We drove about 45 minutes, stopped at a Bob Evans for some breakfast and I am just not hungry at all. Normally I love to eat breakfast there but the cold has really drained me and the drainage (and probably some nerves, too) is making my stomach queasy. Of course now I’m worried that if I happen to have any vomiting they will definitely not do surgery.
Upon leaving Bob Evans, I drove for a while, thinking it would take my mind off my own condition and also give Dean an opportunity for a quick nap in case he needed to be the driver for the rest of the day. The rain was pouring, which only added to my misery. Every minute I am thinking of the surgery and, believe it or not, giving very little thought to the spasms. After driving about 40 minutes I stopped, just feeling too miserable to continue. Dean took over and I napped. Somewhere in Ohio we stopped at a rest area and I enjoyed Chicken Noodle Soup at Panera Bread, with a cup of ice water. Normally I like some soda pop (without caffeine) with my lunch but know that water is the best thing for helping flush out the cold, which now is feeling like a sinus infection because my face is beginning to hurt.
After lunch it’s back to snoozeville for me and Dean presses on towards Pittsburgh. We have reservations at the Hampton Inn on McKnight Road and driving along McKnight towards the motel, I notice there is just about every kind of restaurant imaginable (Red Lobster, Damon’s, Bob Evans & more plus all kinds of fast food places) as well as a couple of malls. This will be nice for recovery and I wish I felt like heading to the mall tonight to shop. For what, I don’t know, but I do like to shop! We checked into the motel about 4:00p.m. and while Dean hauls our stuff up to the room, I make a few phone calls. The first was to the hospital for my surgery time. I’m told to arrive at 8:30a.m. and that I am scheduled for 10:30a.m. with 3 ½ hours blocked in the OR for me. Already I’m thinking that surgery will be done about 2:00p.m. and if all goes well I should be in ICU by 4:00p.m. Told you I’m a planner. Next, I telephone our pastor and give him the news so he can share it with our friends at church tonight (potluck supper night and I’m missing it…bummer!) and then I call Marcia Licata.
Marcia sure has a way of helping me relax! I told her about the cold and she said if I have a fever that could mean infection and Dr. Jannetta probably won’t do surgery. She was in the midst of tutoring a student so we only spoke for a few minutes and talked about calling each other later. To be perfectly honest, I feel so bad at the moment that the last thing I want to do is talk to anybody. Dean will tell you I must be REALLY sick because my mouth often starts going before my feet hit the floor in the morning. Sometimes I wonder if it stops when I sleep!
I’d like to encourage anyone who’s coming to Pittsburgh to give Marcia a call when you arrive. Even though I couldn’t have found my way out of a paper bag at the moment, just talking to someone who has both been down the same physical road as me and also lives in the area was very comforting. I knew instantly that if I needed anything I could call and she would help.
After settling into our room we headed out for supper and stopped at Red Lobster. I love broiled flounder but tonight did not feel like eating anything. I did manage some baked potato and salad and about half of a cheese-garlic biscuit, along with a glass of water and lemon. By now I’m really feeling sorry for myself but beginning to see another side of this bug that has latched on to my head. The other side is in the open when Dean says almost what I was thinking - “If you can’t have the surgery tomorrow, then there’s a reason for it.” I think that was a turning point because everything has worked out up until now and I know there is nothing I could have done to prevent the cold. Even though my head is pounding, sinuses throbbing and throat is still sore, I do begin to feel a little better.
Towards the end of our meal, Dean leans over and says he thinks the woman in the booth next to us (we were in a corner booth sitting in the actual corner facing the entire dining room) might have HFS. I tried to look but didn’t want her to think I was staring. Finally she leans over a bit and I see it - her right eye and mouth twitch. I believe she does have it! This is the first time I have ever seen anyone who might have it. For a fleeting second I think about going over to talk to her but decided against it. For one thing, I don’t want to expose her to my germs and don’t know if that would make her feel self-conscious. It’s a surprise to see someone else with a twitchy face but guess it’s to be expected in a town where there are doctors who have performed MVD's on this for decades!
After supper it’s back to the motel for more water, Tylenol and a warm bath. My preference is a hot bath but I will keep the water temperature lower in the hopes of keeping my body temperature down for tomorrow morning. I’m in bed about 8:30 and sleeping soon after. Even though I know I’ll sleep much of the next day or two I am tired and know that sleep now may help me feel better in the morning.
We were awake early and my throat is better but my sinuses are throbbing. I had a little tickle in my throat last night but no real cough and thankfully no vomiting so hope that things improve more between now and surgery time. My temperature this morning is 99.1, which I feel is good considering I’d been sleeping all night under the covers. I wash my hair, dress, and make sure Dean knows where all my important stuff is like wallet, cell phone, etc. Dean went to the motel lobby for breakfast and I asked him to please not bring any coffee along on the ride to town this morning. I am not a coffee drinker and the way I feel I do not want to smell it this morning. We head out to the hospital at 8:05a.m. I’m a bit nervous but still more because of the dreaded bug I have than the surgery itself. As we leave for the hospital, we take out my suitcase and pillow. I suggested this for two reasons - one, if I need something in ICU Dean will not have to drive back to the hotel for it and, two, he would be moving us out of the double room and into a suite on Saturday and it would be less for him to keep track of during the room switch.
Marcia Licata was right - when we arrive at the lobby registration desk, it is like an airport. There are people moving from hall to hall to elevator and the waiting area is in the center of the room. I glance around to see if I can see anyone else twitching. Nope but I don’t exactly stare at everyone either. Within a few minutes I’m called to the patient registration and get the lovely irritating plastic armband. Then I’m sent up to the 11th floor. A nurse greets me and asks me to give her just a minute. This sure is a busy place - there is a nurse’s station in the center of the section where we are and rooms and medical staff everywhere. I can’t imagine how they can keep everything organized. The nurse speaks with someone else for maybe 10 seconds and is promptly back to escort me to my prep room. She thanks me for my patience and I ponder this for a minute, shaking my head because she seems so efficient that I can’t imagine anyone would ever not be patient with her!
After getting into the gown and slippers, I tape on a “lucky badge” my 8-year-old daughter made or me before I left home. It says “your #1, this is your lucky badge”. I’m honored to wear it and wonder if my children are thinking about me this morning. The nurse returns to ask a few questions and I tell her I have a cold. She said another nurse will be in shortly and I still wonder how they can keep everything so organized. When the nurse comes in she asks all kinds of questions and the most important ones are about drug allergies. I told her I can’t take sulfa drugs and name a couple of other antibiotics that upset my stomach. Then I mentioned that I see spiders when I have codeine and she makes appropriate notes on my chart and presents me with another plastic arm band, this one is red. All I need is a blue one and I’ll be patriotic.
Next, she comes in with the stockings. I have read about others wearing these but did not realize they were thigh-high stockings. Haven’t worn anything like this in years and for good reason - the elastic can be bothersome on my thighs. They are a little long and I feel like I’ll have excess material bunched under my toes. What am I thinking…that I’m really going to be walking around in these things??? I wonder if I’m going to have some device on my legs for circulation but forget to ask. She takes my temperature using the ear thermometer and says my temp is up a bit, to 100.2. Oh no! She thinks out loud (good for me) that maybe she will check it with an oral thermometer and Dean and I both encourage this. Dean told her we had an ear thermometer at one time and never could get an accurate reading. The thing would sometimes have a range of 3-4 degrees and even when we used it when we were not sick it would show a temperature! Off she goes to obtain the oral thermometer and 2 readings are normal or below. Hooray! Maybe we can get this show on the road.
It is now around 10:10a.m. and I wonder when an IV will be started and if I’ll be in the OR at 10:30a.m. as scheduled. Knowing things can get behind quickly in the medical world I decide to try to watch TV and think about something else. I was hoping for an early surgery time, thinking I’d be awake and talking in ICU shortly after lunch, maybe even eating some lunch. Well, this schedule is out of my control so I sit and wait. About 10:20a.m. someone is ready with a bed to give me a ride to the OR holding area. Time to say goodbye to Dean and hope that when I see him again I can smile without spasms!
A nurse named Roberta wheels me down a hall towards the elevator and I notice another nurse bringing a patient from the opposite direction. Our gurneys cross paths and as the other gurney is rolled into the elevator I realize it is the same woman who was sitting next to us at Red Lobster last night. I’d like to talk to her now because I’m almost positive she is there for an MVD but with the elevators opening and people moving quickly about there is no time.
Roberta wheels me into a holding area for a minute or two then moves me to another area. As we roll past the central desk, a man calls out “Good morning Mrs. Frederick”. I had never seen the man in person before but knew instantly it was Dr. Casey. We exchanged a couple of emails last fall and I had seen his picture somewhere online, too. I felt very much at ease. Dr. Casey and the anesthesiologist (Dr. Bahtia) talk to me, answer any last minute questions I have and I explain my cold, nausea after surgery and seeing spiders with codeine. Dr. Bahtia reminds me of Al Roker and is very kind. They explain that in over 90% of cases such as mine that the problem is a viral problem and not an infection and we decide we’ll proceed. I told them I know my throat is going to be raw when I wake up anyway so won’t be any different than now!
Next, Dr. Bahtia starts the IV and when we have finished talking with Dr. Casey he rolls me back to the other side of the holding room. I ask where Recovery is and where I’ll be. He explains that just on the other side of the room is the Recovery area. I told him I have a request and that I’d like someone to hold my hand when I am put to sleep. He said that would be done and I would be just fine. He must know that I am starting to get a little nervous now! A resident comes by to introduce himself to me and he looks so young! He tells me he’ll be with me during surgery but I don’t think to ask him what his role will be. A nurse anesthetist (who’s name I can’t recall) gives me a shot in the IV and says it’ll make me feel like I’ve had a couple of glasses of wine. I do not drink but certainly do like the feeling. I vaguely remember the ride into the OR and climbing onto the operating table. I see something that looks like foam with an indent in it, presumably for my head. I remember telling them I know my head will be at the foot of the bed. I remember that from the book “Working in a Very Small Place, The Making of a Neurosurgeon”.
Once I’m settled on the bed, Dr. Casey is there, too. I see my MRI films on the viewer and ask Dr. Casey to show me where the blood vessel is that is pressing on the nerve. He does and I am amazed that anything can be determined by that picture! I had looked at all of my films the night before and couldn’t figure out anything except that I did have a brain. Dr. Casey put the film back on the viewer and both of my arms are stretched onto boards to the side of the OR table. Dr. Bahtia begins to rub my hand and is smiling at me. I sure am glad to have that bit of comfort! The last thing I remember is someone putting a plastic mask over my mouth and nose and asking me to take deep breaths.
Going to sleep for surgery is interesting. When I sleep at home, I am conscious of what time I turn off the TV, when I awaken during the night and when I get up I know how many hours I’ve been sleeping. With surgery it seems as soon as I have said good night someone is calling my name to wake me up. Today is no exception. There is a woman calling my name and possibly patting me in the face. I think I have a mask on my face. Yes, I do and it is removed as soon as I start talking. There are several people around the bed though I don’t get my eyes open well enough to see who they are or if they were with me before surgery. They asked me if I knew where I was and I can’t remember if I answered or not. The next question was “what did you have done” and I tried to say “Microvascular Decompression” but could not say “Microvascular”. After a few attempts someone was patting me on the arm and saying “it’s ok, we know you know” but I was determined to get it out - and finally did. They asked if I had any pain and I said that my head hurt and I was nauseous. Neither was terribly bad but enough that I noticed them. Whether it was a few seconds or many minutes later, I remember saying again that I had a headache and was nauseous (or at least I thought I said it) and that was the last I had any nausea.
My eyes were blurry and I asked if I could wipe them. Someone did it for me and I was certain my left eye would be gouged out. The person wiped so hard that I scolded him or her and said “Don’t be so rough”. There was an apology and I couldn’t believe that I had fussed at someone already. Guess I’m on the road to recovery and will soon be back to my old self!
The next thing I remember is waking up in ICU. I was in the unit across from the nurse's station and there was a large clock on the wall. It was 4:20p.m. and my nurse was Natalie. Unfortunately I said very little to her because her shift ended so soon after I got there and someone named Leigh took over. I remember Natalie had a beautiful smile and looked so perky compared to how I felt. Leigh was great and checked my vitals and offered pain medicine whenever I needed it. My head was not excruciating but something was and it took a while to figure it out. It was the outer part of my ear - the entire part that sticks off from the side of my head. For years prior to surgery, if I lay on that ear for more than an hour or two it throbs - always has and probably always will. I can’t imagine why it hurts to bad but I definitely want something for the pain. Within a few minutes of waking up enough to realize where I am, I notice that my face is calm except for some mild flutters. I know I will enjoy this later but feel too “out of it” at the moment to give it a lot of thought. I am aware of someone putting something around my legs and ask about it. The stockings are still on and they are putting big white things like blankets with Velcro on my legs. They have hoses and they feel funny. Finally I ask if they are “doing something” and I’m told they are and it is to help circulation. Doesn’t feel too bad, actually feels pretty good, a slow regular massage. If only they could do the bottoms of my feet.
Leigh names various meds I can have, including Morphine and Fentanyl. She said the Fentanyl is shorter-acting but gives quicker relief. Sounds good to me and within a few minutes the pain is easing and I feel very comfortable. Short-acting is right - it seems to be wearing off in about 20 minutes. She explained I can have this every 30 minutes. I wonder to myself, “why don’t they order enough to last for hours” but never ask the question.
Around 6:30p.m. I ask when Dean will be allowed to come in to see me. I think it was Natalie who went to the waiting room to get him. By the time he gets to my area I am talking and feeling pretty good. I’m wondering if I’m hungry and know that my lips are dry and I am definitely thirsty. He asked me if I have any spasms and I’m almost scared to say it but no! There are no spasms!! I’m not sure what felt the best - having no spasms or seeing his smile and being able to return it like a normal person! We talked about 30 minutes and I knew that I wouldn’t remember much of the conversation and would be asking him the same questions tomorrow. He helps me have some ice chips and I’m beginning to think I really don’t feel so bad considering what I’ve been through. I ask if Dean would be allowed back in so he could get my pillow from the van and that was wonderful!
Throughout the rest of the evening, Leigh was very attentive and kept my ice chips replenished. She also offered conversation and when she needed assistance sliding me up in the bed, there were a couple of male nurses that always helped. I remember thinking how well everyone worked together and how nice they all seemed to be. Leigh is finished at 11 and my new nurse is Lisa. About 11:30 I ask Lisa about the Morphine and ask if it’ll help me sleep. She says it will and I take a dose. I did fall asleep and knew that I’d been sleeping for hours when I needed some bed pan assistance. The male nurse stopped to tell me he’d get Lisa and I asked him the time. It was 12:15. Oh my, this is going to be a very long night but it is fairly quiet and I figure I’ll take the pain meds and doze all night if need be. Throughout the night the nurse asks me questions such as my name, where I am, the date, why I’m there, who is my doctor, etc. I’m able to answer every question. They also ask me to blink, pucker, squeeze fingers, whistle, etc.
At one point I ask Leigh if it’s possible for her to track down the mystery woman that I know had spasms. She looks around and returns to tell me there is confidentiality, which I understand since I am a medical transcriptionist. I later offered to write my name and email address and just ask Leigh to deliver it and that she won’t even have to tell me if she did find the person. She said she would but I never got “with it” enough to ask for pen and paper or write anything down. Oh well, guess this woman will always be a mystery unless she shows up at the HFSA conference in July.
My neck is very stiff and hurts though no pain from the incision. My ear is still throbbing and I finally ask if I can raise the bed up a bit. That brings a little relief. Back to sleep I go for what seems like a day or two only to awaken again about 2:30a.m.. For the next couple of hours I wake up every 5-10 minutes though remember dreaming during the short times I sleep. I decide Morphine may not be the best drug for me and think I may have had some Fentanyl at times during the night. Around 5:00a.m. the ICU seems to come to life and groups of residents begin to descend upon the area. At 5:40a.m. a female resident (can’t remember her name either) stops by to check on me. She puts me through the physical test of blinking and such and asks the questions of where I am and so forth that by now I feel I can answer before I am asked. I just realized that although I do still have my cold that my sinuses are not hurting and neither is my throat. In fact, my throat has not hurt at all since waking up from surgery!
Friday, May 9, 2003, 1 Day Post-Op:
7:00a.m., shift change and my new nurse is Cheris. She sure seems perky, too, but I have been through surgery and she’s been home sleeping in her own bed all night. She is very helpful and laughs at my stupid jokes. By late morning I have had enough of the SCD’s(the circulation devices on my legs) and feel like I need a bath. Cheris removes the bandage on my incision and the back of my neck feels like there is sawdust on it. The only thing we can figure out is that perhaps that area was shaved and/or irritated by the tape holding the bandage on. Ricky (Dr. Jannetta’s PA) told me removing the bandage would feel like a bikini wax. I’d never had a bikini wax and wondered if Ricky had. After having the bandage removed I decide that a bikini wax is not for me. It was only mildly uncomfortable and quick, but just seems senseless to pay money to have hair pulled out of your body, knowing it’ll only grow back.
Dr. Jannetta and Ricky come in around 7:40a.m. and I was so happy to see Dr. Jannetta! It felt good to smile and I talked about my outer ear hurting, the flutters and my neck being stiff. They were both reassuring that things would improve and said I’d be moved to a room this morning.
If I remember correctly, my breakfast this morning was Jell-O and grape juice and other things that I can’t recall. I may have had this late morning but do remember eating some of this sometime before the next dose of meds. My mouth is very stiff and hard to open to get the fork or spoon in. Then I realized that my back teeth were not touching when I tried to chew so asked the nurse about this. Am told it’s most likely from swelling and should resolve. I also started noticing funny sensations running through the numb part of my head. This, too, is normal. The nurse said I’d feel all kinds of feelings as the numbness wore off. Every little bit of information helps me feel more comfortable. I’ve never had any kind of surgery where half of my head has been numb so don’t know what is normal and what is not.
I took another dose of Morphine later in the morning but had the same effect as last night - I sleep soundly but awaken after a few minutes. By lunch time I was ready to get out of that bed! The ICU had definitely come to life and there were employees yelling from one end of the room to each other, literally. There were cell phones, pagers and so much noise that I couldn’t help but feel like I was a caged animal at the circus. Finally, I pressed the nurse call button, the light went on and nobody came. After a few minutes I called out loudly “I would like some assistance please” and a few minutes later in pops a very pretty blonde with a happy smile named Jane. When I told her I’d like some help washing up she asked me if I’d like to get out of the bed. She sure made my day! Within minutes she was back with pans of water, towel, and wash clothes and was disconnecting the SCDs. It was this time I finally thought to ask how long I’d have to wear those things. Jane said until I’m up and walking so I figured I better try to do that sometime today. Jane washed my back and helped with the overall bird bath and I sure felt good. I asked if I could wet the front of my hair to freshen it up a bit and Jane tells me to hang on. She’s out and back in no time with a shampoo cap - it is warm and she puts it right over my head and we stuff the hair up into it. It’s actually hot and irritates my incision so we adjust for that. She rubs my head in this thing and that just feels so good! I asked her about rinsing and she said that it is a no-rinse solution. Then I realize I don’t have a pick and wonder how in I’ll ever look presentable (for what I don’t know) with using a comb. Jane to the rescue again - she helps comb around the front of my hair and I honestly don’t care about the back.
Now I’m beginning to realize that I haven’t heard anything about being moved into a room so ask Jane about this. She said there were rooms made available and about an hour later I asked again and she said “they took them back”. This could be a very long day if I have to stay in here many more hours.
Lunch arrives and I realize that I am really getting hungry. Jane brings my tray and asks if I want to remain in the chair to eat. What a treat! She uncovers the lunch and I see macaroni and cheese and something in a little cup. I ask “what is that?” and she tells me it is stewed tomatoes. I like stewed tomatoes but there is something about seeing that after brain surgery that I just can’t bring myself to put it in my mouth. There is a little cup of tomato soup - nah, not too appetizing. There is coffee (yuck) and I ask her for some tea. She rinses out the cup and returns with hot tea but it smells like coffee so I stick with water and a few sips of apple juice. I nibble on the roll and that is lunch. Dean stops by and I offer him the remainder but he declines, too! He probably had a great breakfast at the motel this morning but I don’t get my thoughts together enough to ask specifics.
The afternoon is pretty uneventful. I can hardly wait to get into a room and take some short naps. I notice that I am smiling at everybody that walks by and I like having the curtain to my area open. Even if I’m not able to be up and around it’s nice to see some action, especially if I have to listen to all the noise and loud talk anyway.
Supper comes about 4:30p.m. and I guess it’s close to 5:00p.m. by the time my tray is delivered to me. From where I am I can see the main doors of the ICU so see everyone that comes and goes. Sometime after supper the mystery woman is wheeled out of ICU, never to be seen by me again.
Supper was baked potato, green beans, a blob of some kind of fish, cheesecake and coffee. The baked potato and beans were delicious, I passed on the fish. Dessert was very good, too. I managed about half of the potato but it was a slow process. I could not get my mouth around the beans so decided to use my fingers and fold them together. I must have looked like an ill-mannered child but I was hungry and didn’t care. Dean was back for evening visiting and about 6:45p.m. I asked him to check at the nurse’s station to see if there was any word on a room for me yet. He did and we learned a room was being cleaned for me. Yes, freedom would come soon! The nurse told Dean he could wait with me but we decided he’d go to the parking garage for my pajamas and toiletries and meet me at the floor.
7:00p.m. and it’s time for another shift change of nurses. Cheris briefed the new nurse (Sharon, I think) and my ear began to throb again…a lot. I pushed the button and could hear them talking but nobody came. Several people passed by my bed by nobody seemed to acknowledge the nurse call light - though I did see some looking at it. Finally about 7:25, Sharon comes in to introduce herself and seemed very abrupt and snappy. I asked her for pain medicine and she said very rudely “Just a minute” turned and was gone. It as another 10 minutes or so before I saw her again. She gave the Fentanyl injection and I asked for assistance on the bed pan. I’ll spare you the details but will say that she was not willing to help - I has to ask for specifics and she seemed bothered with me from the very start. After the bed pan ordeal (which it was compared to the assistance of the other nurses) she opened the curtains all the way and there I lay. She began picking up trash and seemed that she did not want to have anything to do with me. I finally asked her about a room and she offered a snappy answer saying that they were getting a room ready. Finally, Estella returned - I was told by the desk nurse that Estella was cleaning the room, which would be mine. If only Sharon could have some of Estella’s happiness I know I’d feel better!
Sharon comes to the computer by the bed, types a few notes and then puts the finger monitor back on. The morning nurse had removed it saying I was doing so well that she didn’t think it was necessary. Sharon shoved it on my finger without a word then lifted up my gown to look at the electrodes from the monitors. She yanked (literally) off a few, dropped my gown and said in an agitated tone of voice, “These need to be removed.” I asked if she could help because I couldn’t see where they were. She pulled another one or two and that was it. She never said anything more and I assumed she got them all.
Finally, a call comes from the floor wanting a report about me. Sharon moseys to the phone and rather than getting to business at hand she has a very casual conversation with the caller about things in general. I was really getting hot under the collar and wanted to give her a piece of my mind. But I took a deep breath and reassured myself that I’d be out of there that night. I also began to think what could have happened before Sharon’s shift that made her so irritable. Maybe it was trouble at home, job problems or maybe she wasn’t feeling good. Still, that was no excuse for her to treat a patient in the manner she treated me.
She calls for Fred to take me to my room. He asks how I’ll be transported and she says by wheelchair. I wonder how I’ll make that trip since the only time I sat out of the bed was almost 8 hours ago at lunch! When she came back to my area for something I asked her if I could please (and I was being very polite, not sarcastic) have another gown. She snapped, “what for?” and I told her because my gown was open in the back and I did not feel comfortable getting into a wheelchair like that. She picked up a blanket on the foot of the bed, dropped it on my stomach and said, “Just use a blanket”. OK, if I’m not out of here in the next 5 minutes I’m afraid I am going to lose my temper. She wanders around, appearing to do nothing important as far as I can tell, then comes back with a gown and mumbles, “I forgot you were going in a wheelchair”. I’m still wondering what her problem is and also wondering if I should say something to her. I decide not to but hope and pray that she treats the other patients better tonight than she has treated me.
Fred arrives with the wheelchair and we were off. As soon as we cleared the ICU doors I remember telling him it was like Heaven. He said the ICU is like that 24/7, 365 days a year. I hope I never have to be in there again from the noise aspect but other than the last nurse I had, the care was wonderful and the staff was very pleasant and they all seemed to work well together.
I finally arrived “home” to my room, #997, and was greeted by a nurse named Libby. She was so nice and the quiet was very welcome - I felt like I was dreaming! I asked her if I could wash up and if she had a bath chair. She helped me remove the SCD’s and I asked about removing the stockings. She said I’d have to put them back on and I told her I wasn’t going to take a bath with them on. Then I asked her what I’d need to do to keep them off permanently and she said to walk and do some leg exercises (like flexing the foot and rotating the ankles). She could not find a bath chair but brought in a regular chair and lined it with towels and Dean helped me get washed up again. It felt so good to wash my face and get my hands into some water! What was that? I don’t believe it…there were still electrodes all over my chest and sides. I thought Sharon removed them in ICU and guess she was really serious about me doing it, even though I couldn’t bend my head to see them. After more pulling and feeling, they are finally all off, much to my satisfaction.
Although I was tired, I asked Dean to help me go for a walk. If Libby had told me to walk all night I would have just to be freed from the stockings. Neither those or the SCD’sthat were used for circulation were miserable but just confining and uncomfortable and my patience had been worn very thin by both my extended time in ICU and the last ICU nurse. We walked around the block of the floor and then I got on the bed and flexed and rotated my feet for 25 minutes! When Libby returned she chuckled and said what I’d done was sufficient and I could leave them off. She offered me some Lorcet for pain and a sleeping pill (I didn‘t ask the name of that). I was so comfortable even before the meds that I knew I’d have a great night! Dean left about 9:30 and I was soon sleeping soundly. I remember after dozing a few minutes paging the nurse’s station to have my door closed and it was so pleasant compared to the noise in the ICU!
Another plus of arriving on the floor is that Libby had a pitcher of ice and a cup of ginger ale poured for me on the table. I thought that was a thoughtful gesture and it was very much appreciated. Be sure to let your nurses know when you appreciate something - I tried to thank them for everything - even Sharon in ICU. Maybe nobody appreciated anything she had done before.
I woke up about 11:10p.m. to the sound of someone doing something at the computer in my room. I haven’t been in the hospital in 7 years and found it fascinating that everything there is done by computer. I like computers anyway and think saving all the papers and writing has to be much easier. Can’t believe I’m thinking rationally about something but am noticing how much better I feel already! The night nurse was Ellen and when I first laid eyes on her I thought I was hallucinating - she looked like someone I knew from home! She helped me to the bathroom and was very pleasant and attentive through the night.
Saturday, May 10, 2003, 2 Days Post-Op:
7:00a.m. - Ellen comes in to tell me goodbye and wish me a speedy recovery and she is replaced by Gwen. I can only hope Gwen is as nice as Libby and Ellen and am not disappointed. All three ladies were very caring and seemed to truly enjoy their jobs. Gwen checked me over and helped me to the bathroom then it was back to bed to wait for breakfast. Around 7:30, Ricky came in and laughed at me - said I looked good and that I cracked him up by sitting there watching TV. We talked about my being discharged and what I could do and when. He encouraged walking as I was up to it and cautioned that I’d be tired but it was good to do. He said I could wash my hair tomorrow. Tomorrow? I was hoping for today but since I could only see the front around my face and that looked ok I didn’t really care what the rest looked like! He said there weren’t any prescriptions left for meds and asked if I’d be ok with Tylenol and Motrin. I said I would and assured him if I needed something more I’d call the office. I talked with him about the stiff neck and he encouraged me to turn and rotate my head and to do so until it hurt to help loosen the muscles. He proceeded to show me how far I could go and it really hurt but gave me some comfort to know I wasn’t going to pop staples or do damage by doing so. He ordered a steroid shot (don’t remember what of) in the IV to help get rid of the headache and was gone.
Someone from Environmental Services showed up to take my lunch order and I told her I’d be discharged and wouldn’t need it. Gwen suggested I pick anyway in case of delay. Smart thing to do because it took the Pharmacy until about 11:30a.m. to get the steroid to the floor (they were out on the floor) and by then I had decided I’d rather eat after the steroid before trying to leave since I was getting kind of hungry again. Lunch was delicious though I couldn’t eat it all. There was turkey, mashed potatoes, gravy, some veggies, tea (finally no coffee!) and cookies for dessert. I guess I ate about half before feeling full. Around 1:30p.m. I was in the wheelchair and about to leave the hospital!
We arrived at the motel around 2:00p.m. The ride over was interesting. My neck was so stiff and sore that I just knew I’d never be able to hold my head up to get there but I did. Dean bought me a neck pillow (sometimes called a “Bucky Pillow”) at a rest area on the way down and said it was an early Mother’s Day present. It helped a lot and I was grateful the ride to the motel was only 4 miles. Once I was in the new room (which was very nice) I thought I’d need a nap but I did not. I seemed wide awake and other than the stiff neck and my ear throbbing I was quite comfortable. I had some Tylenol and I took a short walk through the unit. By suppertime I was hungry but not up to going anywhere. My legs felt like Jell-Oand I didn’t think I could tolerate restaurant noise with my ear feeling kind of full. I asked Dean to drive down to Eat-n-Park for some soup and he didn’t want to leave me. I had my cell phone and told him I’d be fine. Well, before he got to the van I was getting kind of nervous about being left so called him to come back and suggested we order something for delivery. He was happier about this and I was relieved I wasn’t left alone not being able to fully ambulate on my own. Supper was good and after supper I decided to check email on the laptop.
This is the first activity I have tried besides watching TV and it was interesting. My eyes were focused and clear but looking at the cursor moving or scrolling as in a web page made them hurt a lot. There were times I’d close them or look away while scrolling to avoid the pain. I checked email and sent several messages, rather proud that just 2 days after brain surgery I was back at the computer!
Later in the evening I had a bath and figured I’d sleep soundly. I did sleep ok but getting to sleep was a chore. I could not get comfortable no matter how I tried to lay. Ricky told me I could lay in any position I wanted, even on the incision, but with half of my head numb and the fact I’d laid in bed the last 2 days, I just felt miserable. I took some Tylenol and tried a high back chair. Before the trip I asked Dean to bring our new recliner. We laughed about it but I would have given anything to have that chair now! I slept in the recliner a while then back to the bed propped up on pillows and found that I’d sleep 2-3 hours then wake up. Not bad I guess but I’m already looking forward to my own bed back in Michigan!
Sunday, May 11, 2003, Mother’s Day, 3 Days Post-Op:
It is raining today…what else is new. Seems we have seen only a few hours of sun since we got here on Wednesday. I’m not feeling the greatest but not feeling that bad either. It was exciting to think I could wash my hair but I wondered how I’d ever get it done. I asked him to go get me some breakfast and had a muffin and some cranberry juice - it was delicious and I was not at all nervous about him leaving me in the room to do this. I notice I am feeling stronger. The suite has a whirlpool tub and the hand rail is in a very bad place for someone needing help! It’s at the back of the tub, way out of reach of the water faucet and controls. Even though I felt a little stronger my legs were still quite weak so we decided Dean would start the shower and I could just sit in the tub to wash my hair. It sure felt good to wash it and having someone there to help was great - Dean could see if there was still gel or even blood left in my hair and guide me to get it out. I think I lathered up 3 or 4 times to be sure it was clean.
After the bathing experience I walked in the room some and then we just hung out for a few hours. I checked email again, even replied to some, and around 2:30 or 3:00p.m. we headed out. The sun had come out and it looked to be a very nice afternoon. I was already tiring of the motel room and ready to get some fresh air. Still not being up to going into a restaurant I asked to go to Eat-n-Park and get some soup and we decided we’d drive to the Observatory for a picnic of sorts. We drove through the park and stopped at the Observatory to eat. The potato soup was delicious but after a few bites I was full. I normally like dessert but other than Popsicle's I really don’t have much taste or craving for anything sweet. We walked around the Observatory (don’t know what they observe there) and by the time we were back to the van the rain had started. I believe the weather changing is part of my headache problem - I always have a bad headache when it rains or snows.
We are back to the motel around 4 and I took a nap. I finally got into a propped up side position on the sofa and slept very well. After the nap I rolled onto my back and then I noticed it…the flutters were gone! I have no idea when they actually stopped but for the first time I realize just how calm my face is and how good it feels! Sunday evening we watched TV and snacked and when it was time for bed I was once again miserable with the stiff neck. I tried the sofa bed, no good, so back to the king bed. I finally fell asleep after some rearranging of the pile of pillows. During the night I notice how aggravating the air conditioner is. Even though it is cool outside we must have the a/c on or the room is just stifling.
Monday, May 12, 4 Days Post-Op:
Once again we awaken to rain and wind. I’ll be so glad to see the sun again! Thinking on Ricky’s orders to walk in the mall or go to a museum I decide after breakfast and a bath (with hair washing again) that I’d like to try going somewhere. We drove to the mall and my legs were much better but still wobbly enough that I did not feel up to going in to walk. I notice that I am really getting hungry again and was craving fries and a fruit smoothie. Dean drove around locating the food court area and went in for some food for us. We sat in the van and ate then decided it was too windy and messy to try going somewhere else so went back to the motel. We walked in the halls for a while and I notice that my legs are feeling better as is the rest of me. I also notice I’m up about 4 hours before I need to sit and rest. Not necessarily take a nap, but I do need to sit and close my eyes as the eyelids seem to hurt if I’m up much over 4 hours.
Around 5:00p.m. I’m starting to get hungry and suggest we call for delivery again. The rain is still pouring and the wind still blowing. It’s just awful weather for May! Dean hands me the menus and the first thing I saw I wanted - a Rueben without kraut. He placed the order and the food arrived about 40 minutes later. It was ok, nothing to write home about. I can’t remember the name of the place but we selected from a variety of menus provided by the motel for local businesses that will deliver right to the motel room. The corned beef smelled like it had been overheated in the microwave but I was able to eat about half of the sandwich and some dill pickle. I figure even a few bites of food is better than nothing and was thankful I did not have to go back outside in the dampness again today. We watched some TV and around 8:45p.m. I was so sleepy so washed up a bit and got ready for bed. Then I was wide awake. Guess the bath perked me up! I tried watching TV but my eyes were hurting so arranged the pillows for comfort and got in bed around 9:30 with the lights out and slept.
Tuesday, May 13, 5 Days Post-Op:
This is a big day indeed! I have an appointment with Dr. Jannetta at 8:30a.m. and if all goes well we’ll be driving back home today. I’m not completely over the wobbly legs but am definitely feeling better. I decided to save my strength and although I washed up a bit, I did not wash my hair this morning. Dean packed everything and we decided to make the appointment first then come back to load up the van.
Dr. Jannetta entered the room with a broad smile and I felt so good! At that moment I realized I could smile freely at others besides Dean and how wonderful it felt. We smiled at each other for what seemed like a long time though was probably just a few seconds. He turned to Dean and said “she looks good” then told me my smile was almost back to normal. Talk about words of encouragement! He looked at the incision and we talked about my wobbly legs and he assured me I’d feel better if I kept moving. He said Tylenol PM was ok to take and I discussed taking this to help me sleep on the way home. At the conclusion of the visit, I asked if he’d mind having his picture taken with me and he seemed very proud to do this. I promised I’d email him the pictures and as we posed I could not help but smile - the first really big NORMAL smile I’d had in 3 ½ years! As many before me have noticed, one does not leave the room without a hug from Dr. Jannetta. I was so proud to be in the room with such a wonderful physician and person that I eagerly returned that hug! We were in the car and leaving the parking garage shortly after 9:00a.m. Back to the motel to gather up our things and we were off.
The drive home was nice considering the Tylenol PM helped me sleep most of the way! When we left Pittsburgh it was still cloudy but not as windy and rainy as previous days. As we drove further into Ohio the sun became brighter and it was warmer out and I was beginning to feel even better! Some of you might laugh, but we brought the porta potty just in case I wasn’t comfortable using a public restroom. Dean stopped once for something to eat and I was so thankful for that porta potty. I had been sleeping so hard thanks to the Tylenol PM and with the wobbly legs and thinking I’d have to go into a bathroom alone, it was comforting to me to have my own private bathroom of sorts! A few hours later, he stopped again and although I still did not feel like going inside to the bathroom, I was able to get out of the van and we walked. The sun felt so good and the wind of earlier in the day had calmed down to a nice breeze. I’m going to make it! We arrived back to Clinton around 4:30 and the first thing I did was sit in my recliner. Words can’t explain how good that felt and I told Dean that if I ever had to do it again I wanted to take the recliner with me!
We went for supper (though ate in the van) then to pick up our children around 6:00p.m. I don’t know who was more surprised - our daughter (she’s 8) or our friends when I walked up to the front door. I was still wobbly but it was so nice to see the children, be around friends and, for the first time, smile at someone other than Dean or Dr. Jannetta! When we got back home I napped in the recliner and really enjoyed my own bed that night, even though it was hard to get comfortable.
Wednesday, May 14, 6 Days Post-Op:
I’m not quite up to standing in my own shower so opted for the tub and used the sprayer hose to wash my hair. I feel about 50% better than yesterday just being back in my own house. I had a goal in mind before surgery - to attend one of my son’s baseball games tonight. It looks like I might make that goal! Throughout the day I walk slowly through the house and notice that every hour I am feeling better than the hour before. By afternoon I am ready for a short rest in the recliner and then we head out about 4:00p.m. for our son’s game. I am not strong enough to walk to the field so we sit in the van and dine on Taco Bell. My head and eyes still hurt at lot at times and I start to realize this happens more when I’m tired. It’s difficult to turn my head to watch all the action so I find that watching one or two players works best. By the time the first game ends around 7:00p.m. I have had enough. We stop at the store for a few groceries and are back home about 8:00p.m. I am tired but it is a good tired.
Thursday, May 15, One Week Post-Op:
Today has been very quiet. I spent some time using the laptop and watching TV. Reading makes my eyes hurt so guess my counted cross stitch project will have to wait a while longer. This evening I had my first phone call - a friend called and we talked for a long time. It was nice to finally feel up to talking to someone on the phone!
Friday, May 16, 8 Days Post-Op:
During the night I finally got to sleep on my right side though rather propped up. I am so tired of sleeping on my back because of the numbness in my head and irritation from sleeping so much in that position. In fact, the night is kind of miserable and I wake up every hour from sleep though do feel that I have been sleeping pretty good. At 3:00a.m. I notice when I sit up that my right ear is draining. The first thought that comes to mind is a spinal fluid leak so I grab a tissue and start blotting. It is colored, like wax and I suspect it is from my cold or maybe the beginning of an ear infection. I was able to go back to sleep but still kept waking up every hour until 6:00a.m. so finally gave up on sleeping any longer.
I called Kathy around 8:00a.m. and asked her about my ear as well as a couple of other questions. She assured me the ear drainage was nothing to worry about and I thanked her for her reassurance. The rest of the day was quiet. I talked on the phone a couple of times this morning and noticed afterward how tired I felt. After some lunch and a shower it was off to the recliner again for a rest before another ball game tonight.
We left here again around 4:00p.m. and I notice that riding in the van is much more comfortable and I’m able to look further out the windows. I forgot my Bucky Pillow but am sure I won’t need it tonight. My eyes still hurt with all the motion of the scenery passing by and cars approaching so I close my eyes from time to time. We pick up supper at Pizza Hut tonight and the only discomfort I notice was one side of my shoulders were stiff when we got the ball field. I even felt up to taking the camcorder to capture some video of our son.
The game started at 5 and about halfway through the sun came out. I got out of the van for a while and noticed how beautiful the night was and more importantly how comfortable I felt smiling at the players and being out in the nice night. Friends were sitting further down the fence but I wasn’t yet up to walking down and engaging in a conversation - maybe by the next game I’ll be ready for that. When we got back home I couldn’t help compare how much better I felt tonight than I did just 2 nights ago. Every day is better than the day before and one of my cousins has already teased me via email that I’m probably going against doctor’s orders and overdoing it! No, I’m not overdoing - I am doing exactly what I feel comfortable doing and even giving some consideration to walking on the treadmill in the next day or so. Ricky told me I could do this as soon as Sunday at the motel but my legs were just too wobbly for me to even consider such a thing. I should mention that the wobbly legs is something I always feel after being put to sleep rather than something to do with the actual MVD procedure.
Sleep tonight is much better! I am able to lay further down in the bed without as many pillows propping me up and after a bath I am in bed about 10 and ready for lights out around 10:30.
Saturday, May 17, 2003, 9 Days Post-Op:
Today is a beautiful day! I slept so good last night, only waking once or twice and slept until about 9:00a.m. today! What a treat both to sleep late and to feel so rested after getting up. Friends are bringing dinner this evening and I am looking forward to some homemade potato soup! Dr. Jannetta said that if I get Bell’s Palsy it will come between days 9 and 14. So far so good as of now (1:39p.m.). I hope that I will not have it but can’t do anything to prevent it.
I’ve noticed the past few days that chocolate does not have much taste. I do enjoy chocolate but am not addicted to it at all. Other foods taste fine and my hearing does not seem to be affected. I don’t know if not tasting chocolate will be temporary or permanent but it is a very small price to pay for getting a normal face once again. I find that I am smiling more at Dean and the children than I did before and I am looking forward to going to church tomorrow and sharing that smile with everyone. I just hope I won’t get Bell’s Palsy…that’s the latest worry on my mind.
Dean picked up some transcription from my primary care yesterday so I begin to work on that. It feels so good to be getting back into a regular routine.
Sunday, May 18, 2003, 10 Days Post-Op:
We’re up kind of early and after a shower I decided maybe I would rather try going to Sunday School at 10 and if I feel up to it will stay for church. It’s good to be back! Our Sunday School teacher (who’s also a very close friend) noticed the difference in my face immediately as did others. They also noticed my neck is stiff but I manage to stand up, turn around and show off my body piercings. Within minutes the pastor is eagerly volunteering his wife to remove them (she is a Medical Assistant). Sunday School is an hour and went very well. Originally I figured if I was tired Dean would bring me home at 11:00a.m. but I’m feeling very good so go back upstairs for worship service. Other friends greeted me and during the announcement/prayer time, the pastor asks me a couple of questions. I share about my lack of taste for chocolate and share that I am not paralyzed, my hearing is fine and the spasms seem to be completely gone. Throughout the service I notice little things. I’m not afraid to look around and smile at other (well, as best as I can look before my neck hurts). It’s wonderful to be able to read the music and sing without half of my face in spasm and I can even read the Bible, looking up toward the pastor, without my eye jumping and closing. This is a great day indeed as there were a lot of prayers on my behalf and I everyone is as happy as I am that they were answered!
During the service I notice something else…for the first time since surgery I believe I am ready to go to a restaurant to eat lunch! YES! I’ll have to mention it to Dean after the service as we’re sitting in different places. After the service ended others came to look at my incision and that’s when I realized they were reacting - I could hear them - but I couldn’t see their faces. Were they surprised, relieved, couldn’t believe the incision had so many staples? Guess I should have taken a hand mirror to see their reactions. Anyway, I don’t care…I can smile and I am feeling good today! One man even pulled out his Swiss Army Knife and offered to get rid of the staples for me! I suggested to Dean that we go out to eat and he offered a compromise. He and our son wanted to watch the basketball game at 1:30p.m. so he proposed they watch, I rest, then we’ll go out for supper. Sounds great to me!
The afternoon was very nice. After lunch I worked on transcription until about 3:00p.m. then it was to my recliner for a nap. Around 4:00p.m. my uncle from Virginia called to check on me. He was the first family member I had spoken with since surgery and I was so happy telling him how I was doing better and better. After we hung up I thought Dean would be ready to roll but he was outside playing with the kids so I did a little more transcription and we left here around 5:00p.m., heading to Damon’s in Ann Arbor.
I feel so good now - I feel like I could conquer anything! When we arrived at the restaurant I eagerly told the hostess “4 for non-smoking” and didn’t think I’d ever stop smiling. When we were seated I realized I could not sit on the end because I couldn’t turn my head very well to see the waitress and with my ear feeling full the noise bothered me. After some rearranging I was very comfortable and had a great meal. The best part wasn’t getting out, or even the food, but the best part was talking to a waitress and smiling without spasms. I did not feel self-conscious at all and kept telling Dean how happy I was!
Monday, May 19, 2003, 11 Days Post-Op:
I emailed Kathy over the weekend to inquire about exact day to have staples removed and she said “10 days or later”. This is good. Dean scheduled an appointment for me at 10:00a.m. today and I was awake when the children were getting ready for school. I don’t know what I’d do without Dean - he is great about helping around the house and making lunch for our daughter until I’m feeling up to getting up that early again. I slept until about 7:10a.m. and after the bus comes at 7:25 I ask Dean for breakfast. Poor guy…he’s beat so is going back to bed. That’s ok…I actually go back to sleep, too, and we’re both up around 8:30 and he fixes me another delicious sausage and egg breakfast. I know all that stuff is bad for you but considering how little I’ve eaten the last week, that’s what I’m craving and I enjoy every bite.
We’re at the doctor’s office right at 10:00a.m. and since I had finished part of the transcription I go in the back to deliver that. The ladies all ask about my surgery and I can see the looks of happiness, even surprise, as they discover I am not twitching any more. Bell’s Palsy is still on my mind so I explain about that, saying I’m at day 11 and so far so good. One of the nurse practitioners removes my staples and said the incision looks very good. I’d never had staples before and told her one person in the HFSA reported feeling like she’d pass out because it hurt. She explained that wherever there was a lot of scabbing it would pull more and she was right. Of the 17 staples in the back of my head, only 1 or 2 had slight pain. She was done in no time and my head and neck felt instantly better. There were 3 staples in my forehead. People asked me about those and I figured it was a drain tube. Kathy replied to my email that it was from the equipment that held my head in place during surgery. I can just picture me on an OR table held firmly by a vice. Hey, whatever it takes so the surgeons can do their thing!!
Because my ear is still bothering me, I ask the NP to check it out, thinking surely I must have an infection. She said the tube (which has been in place since 1996) looks good though she could see either some wax or dried blood at the edge of the ear drum. No infection, which is great. She told me if I develop any headache or other symptoms that are out of the ordinary to call. Then she told me if I feel my ear is not getting any better and want her to check it again to call - she’ll be there all week. It’s amazing how little things like this bring such comfort when recovering from something totally new to me. On the way out, the other nurse practitioner sees me and her expression is priceless - she is genuinely happy for me, too, and I get a hug! Then she tells me it’s her birthday and I have really made her day by showing her I’m doing so well. I think she really made my day. I’m blessed to have such a great physician staff. The only person who wasn’t at the office yet was my primary care physician himself. Well, he’ll just have to wait until I’m up for a drive to the office myself to see the great work that’s been done.
We’re back home around 11:15a.m. and after lunch it’s time for a short walk on the treadmill and a nap. I actually walked on the treadmill Sunday evening for about 12 minutes, going at a fairly slow pace. Today is the same as far as pace (about 1.8 mph) but I walk about 10 minutes and am ready to get off and into my recliner. The nap was very restful but short, about 30-40 minutes. Dean left about 11:30a.m. for work and, unlike the first time he tried to leave me in the motel, I am completely comfortable being left alone for several hours ahead.
This evening I continue to work on the transcription and finish it, but not before my head and eyes are hurting, especially my right (HFS) eye. Hope I haven’t overdone it but feels good to have my first batch of work completed in such a short time after brain surgery. I notice that my eyes and head will have a dull throb behind the eyelids when I am getting tired so will have to take care to avoid this in the coming weeks.
Tuesday, May 20, 2003, 12 Days Post Op:
Today is the first day since before we went to Pittsburgh that will be like a regular day. Dean left for work right after the bus came and I have a whole day to myself. First order of business is to do a little dusting and straightening up in the kitchen and laundry room. I know I need to be careful and not overdo but am not lifting anything heavy or doing anything strenuous. After that, I’m ready for a shower then it’s time for lunch and a nap. I think I slept about 30-40 minutes again. Over the past 12 days I have learned that sometimes just closing my eyes without sleeping helps but appreciate these short naps, too! After the nap I tried doing some counted cross stitch but my eyes bother me looking at it (that pain behind the eyelids). Guess that’ll have to wait until I’m a little stronger.
Because of so many other activities later in the week, we have decided that tonight is the night we’ll clean house. Dean helps the kids upstairs in their rooms and I work downstairs on simple things - like the bathroom sinks and mirrors and getting the trash out. I’d like nothing more than to vacuum, mop the floor or something like that but am not sure what I’m really allowed to do yet. The post-op booklet says normal activity can be resumed after 2 weeks but I’m not sure if the things I want to do fall into that category or not. I’ll take it easy and do the little things I know are ok to do.
Wednesday, May 21, 2003, 13 Days Post Op:
I continue to wonder about what I should or should not do and have noticed a very sort spot on my wrist where one of the IVs was in place. It doesn’t feel like something is stuck in there but more like the vein or tendon is very swollen. An email to Kathy will put my mind at ease so I send her my list of questions. Within a few hours she has replied and the arm problem will resolve though she said it is an irritated vein and can take several weeks, warm compresses will help. Good…nothing serious to worry about here. She also tells me I have no restrictions and I can do the things in question whenever I feel up to it. Hooray! That means I can begin doing laundry, cleaning, bending over, and soon!
After lunch I’m on the treadmill for a 5 minute walk and am just so sleepy. I’m in the recliner about 1:00p.m. and slept for 2 hours, waking only once. I slept hard and was very comfortable when I woke up so know this long nap was very much needed.
Our son has a ball game and our daughter is going home with friends after school so she can go to church tonight. Dean, William and I leave about 4:15 and after we drop William off we’re headed back to Taco Bell for supper. We eat in the van and although it is breezy, it’s about 60 degrees and we decide to get out the chairs and walk over to where other parents are. I did not last long - the breeze was more like wind and even though I had a sweater and jacket I was cold and after a couple of innings I headed back to the van. I notice how much better I feel than the week before - no wobbly legs and my neck is moving much more freely. I brought my cross stitch so decided to bask in the sun (and actually got hot in the van) and work on it. My eyes are doing much better and I’m able to get a good bit done before the game ends. Guess I should have brought that parka after all if I wanted to be outside the whole game. Next time for sure.
On the way to the game I had a bad headache and am puzzled by this. The weather is good and no rain in the forecast so maybe it’s just hunger. Yep, as soon as I eat supper it is much improved and gone within a short time after eating.
Twice today I have noticed some dizziness, not bad but enough to be bothersome or cause any major concern. The first time was on the phone. I had been talking with a friend for nearly 2 hours and was hungry, too. Once I stopped talking and ate I was fine. The second time was tonight after we got to our friend’s house to pick up Carolyn. I’m sure it’s because I am getting tired again. I’ll have to pay more attention to these little warnings and not overdo (or over talk!) myself.
Thursday, May 22, 2003, 14 Days Post Op:
Sleep is interesting throughout the night. I fell asleep around 11:00p.m. last night on the bed but woke up about 1:00a.m. and could not get comfortable. If I lay all the way down my ear fluid moves around and annoys me and if I’m on my right side the ear will still drain a little. So I head out to the recliner and sleep great until just after 4:00a.m. Then it’s back to bed for a couple of hours. This seems to be a good pattern for me and I notice the nights I rotate sleeping locations I’m more rested than trying to force myself to stay in one place or position.
Wow! Today is 2 weeks after my MVD. Thus far no Bell’s Palsy. I asked Kathy about this and mentioned the percentages Dr. Casey shared with me. She said I probably do not need to worry about it. Hopefully I will not get it later than today because I am feeling great. The percentages, if I recall them correctly are this - Dr. Casey shared with me that studies have shown that if you’ve had between 2-20 Botox injections (as I had) that the risk of developing Bell’s Palsy is 6-7%. He said for more than 20 Botox injections the risk goes up to 40%. I’m glad I have reached today’s 14 days milestone but if I should get it after today I can handle it - it’s temporary, unlike the aggravating spasms!
Since I’m cleared for bending over and washing my hair in the tub I do just that this morning and it feels great! I do not like washing my hair in a shower and that could also be part of my ear problem - getting water in the ear when I shouldn’t. I called a friend this morning and after talking with her then washing my hair, I’m ready for lunch. Around 1:30p.m. I’m comfy in the recliner and ready for sleep. Sleep comes quick and I sleep almost 2 hours. I awoke feeling good but a bit tired still. I know that with the minimal activity since coming home that I have not overdone it at all. I actually think that I slept so much the first few days after surgery that when I first came home I just did not need the long naps that I seem to need now. I still don’t have a heavy feeling of fatigue, just that I recognize when I am getting sleepy and plan my day to allow for the afternoon naps. Next week is another very busy week of evening activities so I plan to schedule a nap or at the very least some time to put my feet up every afternoon. Although I like to keep busy, if at any time I feel that I’m not up to going out in an evening, I will stay home and rest. I’ve come too far to push myself now and end up needing even more rest to get back up to speed.
This will end the beginning of my MVD Diary. If I remember to do so, I’ll send some updates at various intervals. If you would like to contact me, please feel free to do so. Ask questions any time and I will do my best to answer. I am looking forward to the July HFSA conference and have actually offered to help. This is a big deal for me because with the spasms getting worse I was not willing to jump in to do anything out of the ordinary. Even after just 2 short weeks, I continue to be surprised at not only how much better I feel every day but how happy I really am without the face spasms. The other day I emailed photos to family and friends and it’s been very encouraging to receive their replies - some are surprised, some can’t believe what I went through, and others telling me how happy I look now! In the coming weeks we’ll have a family or at least a couple picture taken - I haven’t had my picture taken professionally since before the spasms took hold and I am really looking forward to posing in front of a camera.
For those of you just finding our support group, hang in there, ask questions, and lean on the many members who have walked in your shoes and who understand what you are going through. You will never be alone in this journey. I never dreamed I’d need a support group and now don’t know what I would have done without the HFSA the past 8 months. In the coming weeks, months and even years, I hope to remain an active member of this group and to make myself available to help others with some of the same concerns I faced over the past 3 ½ years. It is my prayer that many others around the world will locate the HFSA and hope that you will share us with your family and friends. Remember, you are not alone in this journey.
