I just got a call from Gary at MD Anderson. He's helping me get several appointments set-up just so I can get started on radiation treatments.
Step 1 is to meet with the dentist so that he can make a stint for my mouth. Hopefully we'll get that appointment set up for next week while we're already in Houston. That appointment will just consist of making impressions of my teeth. They will then make a stint that I think is supposed to keep my tongue out of the way during treatments.
Monday, March 8 I'll pick up the finished stint from the dentist. Then I meet with the Radiation Oncologist, Dr. Garden. From there I go for the Simulation where they basically make a netted cast of my face that will hold it in place for each treament. While my head is held down, they will do a CT Scan so they'll know exactly where to radiate.
Tuesday, March 9 I'll go to a class to learn more than I ever wanted to know about RT. From there I will have a multi-disciplinary appt with several doctors in the Radiation Dept. They all want to make sure they agree with the course of treatment.
I should start treatments the following week. 30 treatments. Now begins the logistics nightmare again. I already miss my family.
Friday, February 26, 2010
Tuesday, February 23, 2010
Dead Face
Shortly after my first surgery my husband and I started dating. We discovered during our courtship that I didn't have any feeling in my right ear. It was then dubbed the "dead ear." Eventually, I did gain some feeling back in it. However, I'm now told that I will never regain feeling in the new skin on my face so now we have "dead face."
We just returned from a very long day in Houston. We would have enjoyed the snow day much more had we stayed home than we did driving it in (and sitting in traffic!). I had two follow-up appointments today. Here's the summary:
Dr. Weber:
Pleased with the results. There are indicators with the slight movement I do have on the right side that everything will heal nicely. There's still a chance that I will have some permanent weakness in a few spots, but I can live with that. The greatest risk at this point is to my eye (more specifically, cornea) so I'm hoping I start blinking soon! Dr. Weber said the eye looks good so far, so the drops & ointment are doing the trick. He said that he had no idea how many tumors he took out, but that he took them out in one large mass. (I'll stick with the MRI report that counted at least 30.) The pathology report confirmed that everything is still benign. Yea! I asked about Frey Syndrome -- no sign of it yet. He said it could take 6 months for that to appear. I had another minor complaint... my wrist has been bothering me from the IV's. He said warm compresses & Advil. (Didn't seem like a big deal, but it's bothering me. Oh well.)
So, the big question of the day was radiation: to do or not to do? We're doing it. They'll set up an appointment for me to see the Radiation Oncologist in a couple of weeks to get the ball rolling. Ideally, radiation will STOP the tumor growth. Of course, there are no guarantees. Dr. Weber wants me to heal before getting started, but doesn't want to give the tumors time to start growing again. If they start growing, the radiation is much less effective. Dr. Weber doesn't think the radiation will slow the healing of the nerves.
There were a couple of things he said I should talk to Dr. Gidley about -- hearing & an ocassional sharp pain in my tongue when I drink something very cold. Guess I should get around to that, but not high on my list right now.
Go back in 8 weeks.
Dr. Skoracki:
The PA came in first and took out all the stitches in my face. Yea! Everything is healing nicely. Then Dr. S came in. I started out by telling him that I had a bone to pick with him. He told me to get in line! I informed him that I did not like being awakened in the OR after surgery. He said that he wanted to see me smile and I told him it was a bit unnerving to wake up in the OR. He said he'd make sure I have more drugs next time so I don't remember!
I had a list of questions so I'll just run through the answers...
*It's possible that I'll need a revision surgery on my leg & face. We'll wait at least 6 months to see how it all settles out. My leg pooches out a little bit at the top of the incision. My face may need to be re-contoured (or something like that).
*I can use any kind of cream or ointment on my scars that I choose in 2-3 weeks. He said the ointment doesn't really do anything, it's the massaging that helps.
*I can lie flat now as long as I can tolerate it and the swelling doesn't get too out-of-hand.
*I can turn my head a little more, but still don't overdo it. Can't lift it all the way up and shouldn't look over my shoulders.
*At first he said I had no limitations as far as my leg was concerned. Then he revised that saying I should not run or go to spin class or anything like that. Whew! I was just about to join a gym. Really. ha! However, he did say I can now soak in a tub. That's more like it!
*Most nerve function should return in about 6 weeks. He disagreed with Dr. Weber and said that radiation would slow it down.
*Radiation doesn't affect swelling, but it does shrink/firm tissue which will help the extra padding on dead face.
*If I am going to be on my feet for any length of time, I need to wear the Ace bandage on my leg to prevent fluid from building up.
*No restrictions on driving since I'm off the narcotics.
*He said the sharp pain in my leg that pops up on ocassion should be temporary and I can massage it out to help relieve the pain.
*I shouldn't lose any tone in my face since he expects the nerve loss to be short.
*The flap will always be discolored, but we can address other options later.
Go back in 4 weeks.
We just returned from a very long day in Houston. We would have enjoyed the snow day much more had we stayed home than we did driving it in (and sitting in traffic!). I had two follow-up appointments today. Here's the summary:
Dr. Weber:
Pleased with the results. There are indicators with the slight movement I do have on the right side that everything will heal nicely. There's still a chance that I will have some permanent weakness in a few spots, but I can live with that. The greatest risk at this point is to my eye (more specifically, cornea) so I'm hoping I start blinking soon! Dr. Weber said the eye looks good so far, so the drops & ointment are doing the trick. He said that he had no idea how many tumors he took out, but that he took them out in one large mass. (I'll stick with the MRI report that counted at least 30.) The pathology report confirmed that everything is still benign. Yea! I asked about Frey Syndrome -- no sign of it yet. He said it could take 6 months for that to appear. I had another minor complaint... my wrist has been bothering me from the IV's. He said warm compresses & Advil. (Didn't seem like a big deal, but it's bothering me. Oh well.)
So, the big question of the day was radiation: to do or not to do? We're doing it. They'll set up an appointment for me to see the Radiation Oncologist in a couple of weeks to get the ball rolling. Ideally, radiation will STOP the tumor growth. Of course, there are no guarantees. Dr. Weber wants me to heal before getting started, but doesn't want to give the tumors time to start growing again. If they start growing, the radiation is much less effective. Dr. Weber doesn't think the radiation will slow the healing of the nerves.
There were a couple of things he said I should talk to Dr. Gidley about -- hearing & an ocassional sharp pain in my tongue when I drink something very cold. Guess I should get around to that, but not high on my list right now.
Go back in 8 weeks.
Dr. Skoracki:
The PA came in first and took out all the stitches in my face. Yea! Everything is healing nicely. Then Dr. S came in. I started out by telling him that I had a bone to pick with him. He told me to get in line! I informed him that I did not like being awakened in the OR after surgery. He said that he wanted to see me smile and I told him it was a bit unnerving to wake up in the OR. He said he'd make sure I have more drugs next time so I don't remember!
I had a list of questions so I'll just run through the answers...
*It's possible that I'll need a revision surgery on my leg & face. We'll wait at least 6 months to see how it all settles out. My leg pooches out a little bit at the top of the incision. My face may need to be re-contoured (or something like that).
*I can use any kind of cream or ointment on my scars that I choose in 2-3 weeks. He said the ointment doesn't really do anything, it's the massaging that helps.
*I can lie flat now as long as I can tolerate it and the swelling doesn't get too out-of-hand.
*I can turn my head a little more, but still don't overdo it. Can't lift it all the way up and shouldn't look over my shoulders.
*At first he said I had no limitations as far as my leg was concerned. Then he revised that saying I should not run or go to spin class or anything like that. Whew! I was just about to join a gym. Really. ha! However, he did say I can now soak in a tub. That's more like it!
*Most nerve function should return in about 6 weeks. He disagreed with Dr. Weber and said that radiation would slow it down.
*Radiation doesn't affect swelling, but it does shrink/firm tissue which will help the extra padding on dead face.
*If I am going to be on my feet for any length of time, I need to wear the Ace bandage on my leg to prevent fluid from building up.
*No restrictions on driving since I'm off the narcotics.
*He said the sharp pain in my leg that pops up on ocassion should be temporary and I can massage it out to help relieve the pain.
*I shouldn't lose any tone in my face since he expects the nerve loss to be short.
*The flap will always be discolored, but we can address other options later.
Go back in 4 weeks.
Wednesday, February 17, 2010
Surgery recap
Some of this may be a repeat of the past two posts, but I was on drugs for one and didn't write the other. I wanted to write a record of the past week as best I can remember it.
Surgery day:
We got the hospital at 5:15 to check-in. The whole family (mom, dad, sister) met us there. I got checked in and realized that I forgot the ID bracelet I had been given the day before. Kelly ran back to the hotel to get it which only took about 15 minutes then we were all set. I was taken back pretty quickly to get prepped. At 6:50, I got my "margarita" and that's the last thing I remember until they woke me up in the OR when it was all over. Apparently that was around 6PM. I was a little confused because it felt like I had just gone to sleep. Then the pain hit. I remember being in recovery with Dad, Marian & Kelly. Marian got in trouble for pushing my morphine button. Apparently I'm supposed to do that myself. The nurse asked what I had been given for pain in the past that worked for me. I said I didn't know because I had never been in that much pain before. (On a scale of 1-10, I think I said 9.) I think I was in recovery for a couple of hours before being moved to a holding room... still recovery, but not ICU... my bed just wasn't ready yet so I stayed the night there. They moved me to a hospital bed and that was no fun at all. Lots of flopping around and then they got me cleaned off and changed. That part is a bit fuzzy. I think it was midnight before I got settled in and Dad & Marian left.
Thursday:
I don't remember much through the night. They kept telling me that I had a room, but it wasn't ready yet. That seemed to take a long time, but what do I know! Mom came by in the morning just before I got moved. I still had the morphine button, but now my family members made sure it was constantly being pushed. For the most part I stayed in bed and doped up. The catheter was removed so that did require making it as far as my personal port-a-potty. Dad went home Thursday and then got sick. That caused a shuffle in the plan for my kids, but it all worked out thanks to dear friends & family!
Friday:
I woke up feeling better and Dr. Skoracki (plastics) came in to check on me. Said it was ok to shower. I thought that was a grand idea and jumped on it. Maybe not such a bright idea after all. I spent the rest of Friday trying to stop the pain. They juggled my meds a bit. Something they gave me made me nauseous. We finally settled on Dilaudid. My new friend. Occasionally morphine would have to make a comeback. I think this was the day the first neck drain came out.
Saturday:
My kids came to visit! They were making the hand-off to head to Dallas with Auntie M. It was so great to see them. Nathan was a bit cranky (found out later he had pink-eye. Great.) Ella was in a great mood and adjusted well to seeing mommy at less than her best (OK, at her worst.) I was sad to see them go, but knew it was best for everyone. It was really hard to tell Marian good-bye. I don't think I couldn't have gotten through those first 3 days without her! Saturday night my dear friend, Linda, came by. Great to see her. Mom & Kelly both got a break and she stayed with me for a couple of hours.
Sunday:
Mom sent Kelly home (i.e. hotel) in the morning (as she or Marian did every morning). I sleep off & on and she reads her book. We settled into a nice routine. I was feeling much better. Kelly needed to get some rest before our big Valentine's date. We always have pizza and rent a movie and this year was going to be no different. I did have another visitor in the afternoon -- Dr Alford and his wife. It was so great to see him and meet her. I was in the hall walking around and mom had gone to ask the nurse something when I saw him roll in. We said our greetings and then he started asking questions. He wanted to know about medications and what I was getting to prevent blood clots. The nurse walked up and we asked her. She looked at him like, just who do you think you are???? He explained that he was my referring physician and so she answered his questions. (I don't remember her name -- not my favorite nurse!) We made it to my room and chatted for a bit. Mary asked if there was anything we needed while in Houston and I told her we needed a recommendation for a great pizza place. Star Pizza. Awesome. Kelly missed the visit, but came back shortly after they left. We got our pizza and watched Paul Blart, Mall Cop. Funny. Dumb. As expected. Kelly brought me a special Valentine's dessert and we exchanged cards. Awww.
Monday:
I got to go home! They pulled the other neck drain, but said I'd have to go home with the leg drain so we received instruction on how to care for it. Mom headed out shortly before we did. Before she left she made sure to get a walker, potty seat & shower seat all lined up for me. Awesome! We decided to spend one more night in Houston...just in case. We had a nice lunch at La Madeline. My first appearance in the outside world. A little self-conscious. We went to our new hotel and I took a nice long nap. Uninterrupted. We ate in and played games. Didn't sleep too well that first night out.
We came home on Tuesday and I've only taken a few prescription pain meds. Pretty much on Advil now. The leg drain came out today. I didn't sleep great last night, but took a good nap this afternoon. We went to church this morning (Ash Wednesday). For the most part, people tell me I look good (my mother says I'm beautiful, but I can promise you this is a face only a mother could love!!). Then you have the one truth-teller (which I appreciate & find refreshing.) She told me that I looked good and then I pulled my hair back. She gasped and looked horrified. Thank you! To be clear, to look at me head-on with no expression on my face and my hair strategically placed, I don't look too bad. Mostly normal in fact. However, I am mostly paralyzed on the right side of my face. Half-smile. Talk funny. Dribble when I drink. You get the idea. I can close my right eye, but it doesn't voluntarily blink. There are indicators that this should definitely be short-term. Not sure exactly what that means. Then there are the scars and swelling. We measured the facial scars... 16 inches. The incision on my thigh is 11 inches. The swelling is rather extreme right now, although I'm told that it has gotten much better. Yikes! (I didn't look in the mirror until Saturday.) Honestly, it looks like I swallowed a cantaloupe and it is lodged in my throat. The bruising is nice too. Yellow bruise that goes from my face, down my neck to the front my chest.
I go back to the doctor(s) on Tuesday. I'll try to keep this updated with my progress.
Surgery day:
We got the hospital at 5:15 to check-in. The whole family (mom, dad, sister) met us there. I got checked in and realized that I forgot the ID bracelet I had been given the day before. Kelly ran back to the hotel to get it which only took about 15 minutes then we were all set. I was taken back pretty quickly to get prepped. At 6:50, I got my "margarita" and that's the last thing I remember until they woke me up in the OR when it was all over. Apparently that was around 6PM. I was a little confused because it felt like I had just gone to sleep. Then the pain hit. I remember being in recovery with Dad, Marian & Kelly. Marian got in trouble for pushing my morphine button. Apparently I'm supposed to do that myself. The nurse asked what I had been given for pain in the past that worked for me. I said I didn't know because I had never been in that much pain before. (On a scale of 1-10, I think I said 9.) I think I was in recovery for a couple of hours before being moved to a holding room... still recovery, but not ICU... my bed just wasn't ready yet so I stayed the night there. They moved me to a hospital bed and that was no fun at all. Lots of flopping around and then they got me cleaned off and changed. That part is a bit fuzzy. I think it was midnight before I got settled in and Dad & Marian left.
Thursday:
I don't remember much through the night. They kept telling me that I had a room, but it wasn't ready yet. That seemed to take a long time, but what do I know! Mom came by in the morning just before I got moved. I still had the morphine button, but now my family members made sure it was constantly being pushed. For the most part I stayed in bed and doped up. The catheter was removed so that did require making it as far as my personal port-a-potty. Dad went home Thursday and then got sick. That caused a shuffle in the plan for my kids, but it all worked out thanks to dear friends & family!
Friday:
I woke up feeling better and Dr. Skoracki (plastics) came in to check on me. Said it was ok to shower. I thought that was a grand idea and jumped on it. Maybe not such a bright idea after all. I spent the rest of Friday trying to stop the pain. They juggled my meds a bit. Something they gave me made me nauseous. We finally settled on Dilaudid. My new friend. Occasionally morphine would have to make a comeback. I think this was the day the first neck drain came out.
Saturday:
My kids came to visit! They were making the hand-off to head to Dallas with Auntie M. It was so great to see them. Nathan was a bit cranky (found out later he had pink-eye. Great.) Ella was in a great mood and adjusted well to seeing mommy at less than her best (OK, at her worst.) I was sad to see them go, but knew it was best for everyone. It was really hard to tell Marian good-bye. I don't think I couldn't have gotten through those first 3 days without her! Saturday night my dear friend, Linda, came by. Great to see her. Mom & Kelly both got a break and she stayed with me for a couple of hours.
Sunday:
Mom sent Kelly home (i.e. hotel) in the morning (as she or Marian did every morning). I sleep off & on and she reads her book. We settled into a nice routine. I was feeling much better. Kelly needed to get some rest before our big Valentine's date. We always have pizza and rent a movie and this year was going to be no different. I did have another visitor in the afternoon -- Dr Alford and his wife. It was so great to see him and meet her. I was in the hall walking around and mom had gone to ask the nurse something when I saw him roll in. We said our greetings and then he started asking questions. He wanted to know about medications and what I was getting to prevent blood clots. The nurse walked up and we asked her. She looked at him like, just who do you think you are???? He explained that he was my referring physician and so she answered his questions. (I don't remember her name -- not my favorite nurse!) We made it to my room and chatted for a bit. Mary asked if there was anything we needed while in Houston and I told her we needed a recommendation for a great pizza place. Star Pizza. Awesome. Kelly missed the visit, but came back shortly after they left. We got our pizza and watched Paul Blart, Mall Cop. Funny. Dumb. As expected. Kelly brought me a special Valentine's dessert and we exchanged cards. Awww.
Monday:
I got to go home! They pulled the other neck drain, but said I'd have to go home with the leg drain so we received instruction on how to care for it. Mom headed out shortly before we did. Before she left she made sure to get a walker, potty seat & shower seat all lined up for me. Awesome! We decided to spend one more night in Houston...just in case. We had a nice lunch at La Madeline. My first appearance in the outside world. A little self-conscious. We went to our new hotel and I took a nice long nap. Uninterrupted. We ate in and played games. Didn't sleep too well that first night out.
We came home on Tuesday and I've only taken a few prescription pain meds. Pretty much on Advil now. The leg drain came out today. I didn't sleep great last night, but took a good nap this afternoon. We went to church this morning (Ash Wednesday). For the most part, people tell me I look good (my mother says I'm beautiful, but I can promise you this is a face only a mother could love!!). Then you have the one truth-teller (which I appreciate & find refreshing.) She told me that I looked good and then I pulled my hair back. She gasped and looked horrified. Thank you! To be clear, to look at me head-on with no expression on my face and my hair strategically placed, I don't look too bad. Mostly normal in fact. However, I am mostly paralyzed on the right side of my face. Half-smile. Talk funny. Dribble when I drink. You get the idea. I can close my right eye, but it doesn't voluntarily blink. There are indicators that this should definitely be short-term. Not sure exactly what that means. Then there are the scars and swelling. We measured the facial scars... 16 inches. The incision on my thigh is 11 inches. The swelling is rather extreme right now, although I'm told that it has gotten much better. Yikes! (I didn't look in the mirror until Saturday.) Honestly, it looks like I swallowed a cantaloupe and it is lodged in my throat. The bruising is nice too. Yellow bruise that goes from my face, down my neck to the front my chest.
I go back to the doctor(s) on Tuesday. I'll try to keep this updated with my progress.
Saturday, February 13, 2010
Baby Steps
Maybe I should call this "one step forward, two steps back." Night before last was really good so I went all out yesterday morning, then paid for it the rest of the day. Who knew that a shower could be so taxing? Late last night I finally got caught up on pain meds although those have a whole new set of side effects, namely nausea and loss of appetite. Yes, I actually lost my appetite! We have again adjusted the pain meds today and I think we might have a winner.
I just got back from visiting my sweet babies downstairs. That took a lot out of me, but it was worth it. I know that I'm quite a sight, but they took it in stride. I even managed to get a few kisses out of them. They went home with Auntie M. I know they are so excited to see their cousins. Kelly is on his way up with some lunch. Whoever said that hospital food has improved is lying. I'm done with hospital food. Except for maybe the cheese ravioli and the ice cream.
I did graduate from the antibiotic today and lost one of my drains. Progress!
I just got back from visiting my sweet babies downstairs. That took a lot out of me, but it was worth it. I know that I'm quite a sight, but they took it in stride. I even managed to get a few kisses out of them. They went home with Auntie M. I know they are so excited to see their cousins. Kelly is on his way up with some lunch. Whoever said that hospital food has improved is lying. I'm done with hospital food. Except for maybe the cheese ravioli and the ice cream.
I did graduate from the antibiotic today and lost one of my drains. Progress!
Friday, February 12, 2010
Hi! This is Natalie's favorite sister. Here's the latest.
Surgery was considered a success. Twelve hours was on the low end of the estimate and that's exactly how long it was. Dr. Weber told the family she had more tumor than he had ever seen. He said it was tedious but that he got everything he could see. Best news we heard all day was that he spared the facial nerve!!!!! Dr. Gidley performed the mastoidectomy without a problem and Dr. Skoracki did the thigh flap.
She spent the night in recovery and was moved to a room yesterday. Morpine was her new best friend and the mean nurses took it away early this morning. She misses her old friend. Seriously, the day has been rough. She's in a lot of pain and is fighting nausea. She gets shots in the stomach to thin her blood in order to prevent blood clots and she's not fond of those.
She's been up for potty breaks and that's about all she can handle out of the bed. Her leg bothers her as much as her face and neck. The graft seems to be taking well and has great circulation. Although she hasn't seen it, I can tell you that her swelling has already begun to subside. As expected she has some paralysis on her right side which will resolve in the coming months.
Let the healing begin!
Surgery was considered a success. Twelve hours was on the low end of the estimate and that's exactly how long it was. Dr. Weber told the family she had more tumor than he had ever seen. He said it was tedious but that he got everything he could see. Best news we heard all day was that he spared the facial nerve!!!!! Dr. Gidley performed the mastoidectomy without a problem and Dr. Skoracki did the thigh flap.
She spent the night in recovery and was moved to a room yesterday. Morpine was her new best friend and the mean nurses took it away early this morning. She misses her old friend. Seriously, the day has been rough. She's in a lot of pain and is fighting nausea. She gets shots in the stomach to thin her blood in order to prevent blood clots and she's not fond of those.
She's been up for potty breaks and that's about all she can handle out of the bed. Her leg bothers her as much as her face and neck. The graft seems to be taking well and has great circulation. Although she hasn't seen it, I can tell you that her swelling has already begun to subside. As expected she has some paralysis on her right side which will resolve in the coming months.
Let the healing begin!
Tuesday, February 9, 2010
Countdown - less than 11 hours
Surgery is less than 10 hours away although I do have to be there at 5:15. Yikes! Should I even go to sleep?? Let's see if I can re-cap the appointments today:
Audiology
A ridiculous amount of beeeeeps in each ear. Oh, and let's add wind noise too. After about 30 minutes of that, I was told I have high frequency hearing loss. Apparently no big deal. I'll go back about a month after surgery to make sure that doesn't change.
Anesthesology
We covered the basics. No problems in the past with anesthesia. I'm supposed to get the "good stuff" about 30 minutes after I arrive. Good thing because I imagine I'll be a bit antsy by then... a bit MORE antsy by then. I wanted to verify that the breathing tube will be long gone before I wake up. We also discussed the recent episode of "Grey's Anatomy" where the patient woke up during the middle of surgery. I'm not really concerned about that, but had to bring it up anyway. The anesthesiologist said there would be 2 people monitoring me the whole time, but they will give each other breaks periodically.
Gidley
Nothing new. Reviewed the same risks. The most likely side effects will be taste disturbance & dizziness.
Weber
Re-iterated that nerve loss is a very real possibility. They are going to try to save the facial nerve, but no promises. Even with a nerve graft there's a less than 50% chance of re-gaining facial function. There was also mention of a few other side effects, but he said those should be the least of my worries. One was Frey's syndrome and I forget the other one, but it would cause a sharp pain in my mouth when I first eat or drink something. He also said that he thinks there are more tumors now than when I first saw him (this from the man that couldn't remember my name, but he remembers my tumors!!) And those pesky tumors seem to be crawling down my neck now. Good golly, let's get these things out of there and zap them!
Dr. Gidley will work with Dr. Weber to identify the facial nerve. After he's done his part, he expects to leave about 2 hours into the surgery. Then Dr. Weber gets to work on clearing it all out. He said it would be a very long process. The plastic surgeon probably won't be called in until later in the afternoon. I'm fully expecting the ALT flap which means one night in ICU. Not sure when I can update again, but I'll do my best. Maybe I can dictate.
Audiology
A ridiculous amount of beeeeeps in each ear. Oh, and let's add wind noise too. After about 30 minutes of that, I was told I have high frequency hearing loss. Apparently no big deal. I'll go back about a month after surgery to make sure that doesn't change.
Anesthesology
We covered the basics. No problems in the past with anesthesia. I'm supposed to get the "good stuff" about 30 minutes after I arrive. Good thing because I imagine I'll be a bit antsy by then... a bit MORE antsy by then. I wanted to verify that the breathing tube will be long gone before I wake up. We also discussed the recent episode of "Grey's Anatomy" where the patient woke up during the middle of surgery. I'm not really concerned about that, but had to bring it up anyway. The anesthesiologist said there would be 2 people monitoring me the whole time, but they will give each other breaks periodically.
Gidley
Nothing new. Reviewed the same risks. The most likely side effects will be taste disturbance & dizziness.
Weber
Re-iterated that nerve loss is a very real possibility. They are going to try to save the facial nerve, but no promises. Even with a nerve graft there's a less than 50% chance of re-gaining facial function. There was also mention of a few other side effects, but he said those should be the least of my worries. One was Frey's syndrome and I forget the other one, but it would cause a sharp pain in my mouth when I first eat or drink something. He also said that he thinks there are more tumors now than when I first saw him (this from the man that couldn't remember my name, but he remembers my tumors!!) And those pesky tumors seem to be crawling down my neck now. Good golly, let's get these things out of there and zap them!
Dr. Gidley will work with Dr. Weber to identify the facial nerve. After he's done his part, he expects to leave about 2 hours into the surgery. Then Dr. Weber gets to work on clearing it all out. He said it would be a very long process. The plastic surgeon probably won't be called in until later in the afternoon. I'm fully expecting the ALT flap which means one night in ICU. Not sure when I can update again, but I'll do my best. Maybe I can dictate.
Monday, February 8, 2010
Countdown - less than 36 hours
I'm in Houston with less than 36 hours until surgery. Tomorrow I have 4 appointments: Audiology, Anesthesia, Gidley & Weber. I'm assuming that I will find out what time to be at the hospital Wednesday morning. It will surely be some ridiculous hour, but I guess it'll be good to get an early start since it will take ALL DAY! I'm glad that I get to see the doctors one more time tomorrow because I have a few more questions.
Last night I had a hard time falling asleep and then I woke up early. I'm hoping that tonight will go better, but I'm not holding my breath. I'm now to the point where I have a constant knot in my stomach. I think about it pretty much every minute of the day. It's difficult to tell myself that everything will be just fine while still preparing myself, just in case, for the worst case. (Actually, worst case is something we won't talk about; I'm referring to the nerve graft scenario.)
Tonight I will close my eyes and think happy thoughts...
Last night I had a hard time falling asleep and then I woke up early. I'm hoping that tonight will go better, but I'm not holding my breath. I'm now to the point where I have a constant knot in my stomach. I think about it pretty much every minute of the day. It's difficult to tell myself that everything will be just fine while still preparing myself, just in case, for the worst case. (Actually, worst case is something we won't talk about; I'm referring to the nerve graft scenario.)
Tonight I will close my eyes and think happy thoughts...
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