I can't believe it has been one year. My wonderful Aunt Lisa and Uncle Don sent me a cookie bouquet with cookies shaped and decorated like brains.
The purpose of this blog was for my husband to communicate with family and friends while I was in New York. However, I thought I would update the blog for those of you that have ACM and need answers for an upcoming surgery.
I feel SO much better than before. I am so grateful that I have had the surgery. HOWEVER, I wish that I would not have waited. I will always wonder if I would be better now if I would have waited. I am so grateful for TCI. Before my surgery I wanted to know what it was like after....
I can sneeze, cough, etc. without feeling like my head is going to explode. However, there is still a small, small amount of pressure in my head. It is not terrible...much improved. I try not to lift more than 10 pounds. When I do, I can feel it...BUT IT IS NOT TERRIBLE. I just feel the heat and the pulling, so I try not to push it.
Now my head feels like it is going to fall off. It feels better when I lift my head and hold it with my hands. This is not a huge daily problem. I mainly notice it when I am driving or riding in a car. I am pretty sure I may need to be fused, but I am in denial. I know I need to get back to New York soon. I try not to turn my head too much. Also, when I look up my neck hurts and I feel like I am going to vomit. So, I don't do that...
My family, specifically my husband, never makes me feel bad about my limitations and for that I am grateful. I have had the opportunity to visit with several people that get much worse because they went back to a normal life after their surgery. Well, I know how bad it was before surgery and I hope to never forget so I try be careful. I would love to go on roller coaster rides, dive head first into a pool, run, etc. but I have decided to not go there. I try to stay positive....and with family and friends like mine it is easy.
You are always welcome to call or post to facebook if you have any specific questions.
Monday, September 14, 2009
Tuesday, December 16, 2008
3 Months Post OP
I am doing so well! I feel normal again. I know it is soon, but I don't think that I will ever be the same again, prior to the symptoms. However, I am doing so much better than I was doing prior to surgery. I still have not done much. I try not to lift. When I do too much, then I feel it in my neck and the back of my head for a few hours. It is not terrible pain like before. For those of you that have this surgery I would consider PT. The person that I had was wonderful. She taught me how to do exercises without straining my neck or head. If you need surgery, get it done. Hope this helps. Again, you may contact me with questions anytime. Oh, and for those women that are concerned about their hair, don't be. It takes less time to do my hair and I don't even see the back of my head so I don't really care about how I look.
Monday, October 27, 2008
6 1/2 WEEKS POST OP
Feeling well....off prescription pain meds. Actually, I felt much better after I got off of them entirely. I am surprised by how quickly I got off of the pain meds. So, that is a blessing from God. I still can't drive, but I have a few times. Thanks to friends, it is rare because they are helping out. I start PT next week, twice a week. I am feeling so great I feel guilty going, but hope that PT will help with the range of motion and the tightness in my neck. The doctors were correct...if I do too much, I can tell for several hours to follow. It isn't the pain from before surgery (pounding and major pain). It is different: more tired, tenderness, pain around the surgery site due to the surgery...not the old "Chiari" pain. Hard to explain....Also, my neck doesn't feel as strong. It feels better if I have something supporting my neck like a neck pillow.
If you need surgery and are waiting....don't. I wish that I had done this earlier.....please e-mail me with any questions. If you are going to TCI to have your surgery I will give you an idea of what they charge. I just received my bill.
If you need surgery and are waiting....don't. I wish that I had done this earlier.....please e-mail me with any questions. If you are going to TCI to have your surgery I will give you an idea of what they charge. I just received my bill.
Sunday, October 5, 2008
3-4 WEEKS POST OP
The purpose of this blog was to communicate to friends and family while we were in New York. Now that I am at home, my friends and family are probably not checking the blog anymore, so from this point forward I am writing this primarily to inform those with ACM that are searching for answers. I will try to post periodically over the next few months to let fellow Chiarians what life is like AFTER surgery.
SLEEP: Surgery was September 11th. I got home September 20th. The first week after I got home the routine stayed the same as when I was in the hospital. I would take meds about every 3 hours. I would stay in bed as much as I could, then during the day get up and walk around a little. During the night I would wake up every 3 hours and take meds and go back to sleep.
My second week home I started having sleeping problems. I would wake up during the night and stay up. No, I am not sleeping all day long so that is not the issue. I don't sleep during the day so I can get some sleep at night. Believe me, if I could sleep at night AND during the day I would because I actually have an excuse right now! It may be the drugs...
Sleeping tips: My sister Deb made sure I had a hospital bed when I arrived home. This helps tremendously. My insurance will actually help fund this expense. In addition, my other sister Andrea, purchased one of those neck pillows for me. I DO NOT put it around my neck at night like one would think. I lay the pillow FLAT and place my incision in the part of the neck pillow that is open. I place a small portion of a standard pillow under each of my arms and shoulders. So, instead of lying on my side, which gets really boring, I can actually sleep on my back with pillows supporting my shoulders and this neck pillow supporting my head. The incision isn't touching the pillow or the bed.
NECK: I perform neck exercises to work the muscles. The doctor told me to do them every 30 miinutes. The first couple of weeks these excercises were not fun. Three weeks out, it is not difficult to do these exercises at all. The past two days I feel a lump inside the back if my neck that is tight. Regardless of how I stretch, I can't make that section feel better. I was told to do 90 days of PT starting October 23. (At first they said Oct. 5.)
ACTIVITIES: I watch tv and read. I try to do stuff around the house that requires no lifting or straining. Let say my label maker is getting a lot of use! I feel like I can do more, but I am listening to others past mistakes and trying to NOT mess this up. I have strained a couple of times and the back of my head will feel like it is on fire. I have only made a few trips out. My sister got married, so that required a long car ride (30 min) there and back. It was only a 3 hour event, but I could feel the impact for 24-48 hours after. I actually went to the movie this weekend. My sisters took me and I leaned against the wall with my pillows. It was nice getting out.
HAIR: So sad....All I can say is after you make it out of surgery alive, the hair seems so trivial and insignificant. Now, I am sure in a few weeks depression will settle in, but right now it is not a big deal to me.
DRUGS: For the past week or more, I rarely take any prescription pain meds during the day. There are exceptions and will continue to be exceptions for the next several weeks. I just lived with pain for so long BEFORE the surgery because I decided NOT to do prescription pain meds prior to surgery....however, when it gets bad I will take a pill. I have tried over the counter pain meds a couple of times. For three nights I have only taken pain meds right before I went to sleep, then slept throughout the night (mostly) and didn't take additional pain meds. However, typically I get up at least a couple of times during the night for medication.
FOOD: Most everything good in the world that I loved prior to surgery stinks....literally makes me sick to my stomach thinking about eating it: pizza, hamburgers, mac and cheese...all of the yummy food I loved in the past. I feel like I want to vomit most of the time. Now, I have only gotten sick twice in the hospital. But, the smells make me nauseous. I will try to figure out if this is due to meds our surgery. I was told before the surgery by the doctor that this would happen, but I didn't think it would last this long. When I do take pain meds, I always make sure I eat something. I also take meds to help with this, but I still have this problem.
Hope this helps....Kelly
SLEEP: Surgery was September 11th. I got home September 20th. The first week after I got home the routine stayed the same as when I was in the hospital. I would take meds about every 3 hours. I would stay in bed as much as I could, then during the day get up and walk around a little. During the night I would wake up every 3 hours and take meds and go back to sleep.
My second week home I started having sleeping problems. I would wake up during the night and stay up. No, I am not sleeping all day long so that is not the issue. I don't sleep during the day so I can get some sleep at night. Believe me, if I could sleep at night AND during the day I would because I actually have an excuse right now! It may be the drugs...
Sleeping tips: My sister Deb made sure I had a hospital bed when I arrived home. This helps tremendously. My insurance will actually help fund this expense. In addition, my other sister Andrea, purchased one of those neck pillows for me. I DO NOT put it around my neck at night like one would think. I lay the pillow FLAT and place my incision in the part of the neck pillow that is open. I place a small portion of a standard pillow under each of my arms and shoulders. So, instead of lying on my side, which gets really boring, I can actually sleep on my back with pillows supporting my shoulders and this neck pillow supporting my head. The incision isn't touching the pillow or the bed.
NECK: I perform neck exercises to work the muscles. The doctor told me to do them every 30 miinutes. The first couple of weeks these excercises were not fun. Three weeks out, it is not difficult to do these exercises at all. The past two days I feel a lump inside the back if my neck that is tight. Regardless of how I stretch, I can't make that section feel better. I was told to do 90 days of PT starting October 23. (At first they said Oct. 5.)
ACTIVITIES: I watch tv and read. I try to do stuff around the house that requires no lifting or straining. Let say my label maker is getting a lot of use! I feel like I can do more, but I am listening to others past mistakes and trying to NOT mess this up. I have strained a couple of times and the back of my head will feel like it is on fire. I have only made a few trips out. My sister got married, so that required a long car ride (30 min) there and back. It was only a 3 hour event, but I could feel the impact for 24-48 hours after. I actually went to the movie this weekend. My sisters took me and I leaned against the wall with my pillows. It was nice getting out.
HAIR: So sad....All I can say is after you make it out of surgery alive, the hair seems so trivial and insignificant. Now, I am sure in a few weeks depression will settle in, but right now it is not a big deal to me.
DRUGS: For the past week or more, I rarely take any prescription pain meds during the day. There are exceptions and will continue to be exceptions for the next several weeks. I just lived with pain for so long BEFORE the surgery because I decided NOT to do prescription pain meds prior to surgery....however, when it gets bad I will take a pill. I have tried over the counter pain meds a couple of times. For three nights I have only taken pain meds right before I went to sleep, then slept throughout the night (mostly) and didn't take additional pain meds. However, typically I get up at least a couple of times during the night for medication.
FOOD: Most everything good in the world that I loved prior to surgery stinks....literally makes me sick to my stomach thinking about eating it: pizza, hamburgers, mac and cheese...all of the yummy food I loved in the past. I feel like I want to vomit most of the time. Now, I have only gotten sick twice in the hospital. But, the smells make me nauseous. I will try to figure out if this is due to meds our surgery. I was told before the surgery by the doctor that this would happen, but I didn't think it would last this long. When I do take pain meds, I always make sure I eat something. I also take meds to help with this, but I still have this problem.
Hope this helps....Kelly
Saturday, September 27, 2008
Doing better....September 27?
Hello!
I am doing well. I still have a problem sleeping through the night, but with such wonderful help at home it doesn't really matter much. I have the luxury of keeping my own schedule at this point.
I just read some medical info that states that I need to go to PT 2-3 times a week for 90 days. Since I can't drive until November 1, I would recommend my friends to check your caller id before you pick up your phone because you probably will be getting a call for a little trip to PT when Mary and Mom are not around! :)
I am trying to stay off as much of the pain meds as possible during the day. There is some pain involved. Lynne has always thought I had a pretty high pain tolerance...I think she may be correct. I thought I would try this in an attempt to sleep at night. However, if this doesn't work, I think I am going to make myself take an afternoon nap each day to force me to NOT get in trouble by doing stuff I shouldn't.
Before the surgery I didn't want to walk, do anything like that...I actually want to walk now....I think that is strange. I have a desire to move. I did a fake cough, so it isn't the same as a real one, but I felt NO pain...other than the surgery pain that I have constantly. I was so excited. I might actually try to laugh tomorrow to see if that works without killing me. ha/ha
Again, I am grateful for everything. People have called for meals. I have received so many flowers. My fellow Christian friends from Henderson Hills actually came to our house to decorate it for fall! Friends have brought over food, cookies, notes, etc. Page is my go to girl. So far she has agreed to get me to Sonic a little over a mile a day, but then makes me go right back to bed. She is doing a great job of making sure I don't do too much.
Mom is coming back tomorrow....poor lady. Charlie practically cried when Mom left last Wednesday. He wanted to get on the phone to call his mom to come, but she had company and needed a break from us. So, ended up doing just fine thanks to Page helping with the girls!
Better go and sleep. Love you all, Kelly (Hope you all understand why I am not doing a better job calling everyone.)
I am doing well. I still have a problem sleeping through the night, but with such wonderful help at home it doesn't really matter much. I have the luxury of keeping my own schedule at this point.
I just read some medical info that states that I need to go to PT 2-3 times a week for 90 days. Since I can't drive until November 1, I would recommend my friends to check your caller id before you pick up your phone because you probably will be getting a call for a little trip to PT when Mary and Mom are not around! :)
I am trying to stay off as much of the pain meds as possible during the day. There is some pain involved. Lynne has always thought I had a pretty high pain tolerance...I think she may be correct. I thought I would try this in an attempt to sleep at night. However, if this doesn't work, I think I am going to make myself take an afternoon nap each day to force me to NOT get in trouble by doing stuff I shouldn't.
Before the surgery I didn't want to walk, do anything like that...I actually want to walk now....I think that is strange. I have a desire to move. I did a fake cough, so it isn't the same as a real one, but I felt NO pain...other than the surgery pain that I have constantly. I was so excited. I might actually try to laugh tomorrow to see if that works without killing me. ha/ha
Again, I am grateful for everything. People have called for meals. I have received so many flowers. My fellow Christian friends from Henderson Hills actually came to our house to decorate it for fall! Friends have brought over food, cookies, notes, etc. Page is my go to girl. So far she has agreed to get me to Sonic a little over a mile a day, but then makes me go right back to bed. She is doing a great job of making sure I don't do too much.
Mom is coming back tomorrow....poor lady. Charlie practically cried when Mom left last Wednesday. He wanted to get on the phone to call his mom to come, but she had company and needed a break from us. So, ended up doing just fine thanks to Page helping with the girls!
Better go and sleep. Love you all, Kelly (Hope you all understand why I am not doing a better job calling everyone.)
Wednesday, September 24, 2008
I am alive and wide awake!
It is literally 2:44 am. I am at a loss of what to do. I cleaned the utility room cabinets, made labels for important things like "felt for chair legs", and organized my laundry cabinet. I am not doing anything that will cause straining, believe me...don't want to do that surgery again! I just can't sleep. This is the third night and no...I am not sleeping during the day also. I decided to finally get on the blog and read a little just to see what in the world Charlie is writing on this thing. I have had several people tell me I shouldn't be ironing, so I had to check this blog thing out!
It is time again to take more meds. I took an entire batch 3 hours ago and didn't sleep for a minute. I have to wait three hours between each dose. I officially think I have sleeping issues! Better go...the oxy is calling me. Thanks so much for the prayers, calls, flowers, cookies, comments, kind words, ....feel so, so loved. I love you also! Kel
It is time again to take more meds. I took an entire batch 3 hours ago and didn't sleep for a minute. I have to wait three hours between each dose. I officially think I have sleeping issues! Better go...the oxy is calling me. Thanks so much for the prayers, calls, flowers, cookies, comments, kind words, ....feel so, so loved. I love you also! Kel
Sunday, September 21, 2008
8:00 P.M. CDT - I'VE GOT IRONING TO DO!!
We are still not exactly sleeping through the night. I have to set the alarm to give Kelly some medications during the night. Kelly told me this morning that she woke up last night when I was still sleeping, couldn't sleep, and decided to get up in the middle of the night to get some things done....you know, things that just can't wait until Marilyn or I wake up in the morning....like picking up some things in the game room, setting the cuckoo clock and ironing!! Yes, I said ironing. Kelly's back!!! First night home after her brain surgery, she gets her cane, and shuffles through the house cleaning and ironing. So, you can see, all of her friends are going to have to help her to remember she is still recovering, and needs to take it very, very, easy.
Also, she had lived with her unwashed hair for too long. The docs said not to wash her hair for ten days, which would be tomorrow. But Kelly couldn't take it any longer, and I have to tell you that I couldn't blame her. I hate to be so graphic with such a broad audience, but she still had quite a bit of blood from the surgery matted in her hair. So, since we still didn't want to get the incision wet (it is held together with glue and steri-strips, not staples like the good old days) we taped some plastic over the incision and washed her hair. She felt much better afterward.
She had a great day today. Ate better. Took fewer pain pills. Got up and around a little more. Sat outside beside the pool with Hank and Marilyn for a while. She is doing great.
Also, she had lived with her unwashed hair for too long. The docs said not to wash her hair for ten days, which would be tomorrow. But Kelly couldn't take it any longer, and I have to tell you that I couldn't blame her. I hate to be so graphic with such a broad audience, but she still had quite a bit of blood from the surgery matted in her hair. So, since we still didn't want to get the incision wet (it is held together with glue and steri-strips, not staples like the good old days) we taped some plastic over the incision and washed her hair. She felt much better afterward.
She had a great day today. Ate better. Took fewer pain pills. Got up and around a little more. Sat outside beside the pool with Hank and Marilyn for a while. She is doing great.
Saturday, September 20, 2008
8:00 P.M. CDT - HAPPY TO BE HOME!!!
It was a long day, but Kelly survived the trip home....it actually went a little better than expected. The only real problems were some pain on liftoffs due to change in pressure and the jolting of the landings. My mother has done a great job at the house. Everything looks just like we left it. Debbie and my mom arranged for a hospital bed to be put in our master bedroom to keep Kelly more comfortable.
Marilyn has already reported back for more duty. She will be here for a while to help take care of Kelly during the day. I wonder if she is making Hank wash his own clothes or what.
Debbie and Andy were also here to help Kelly get situated. I have attached a photo of the kids with their mom. Needless to say they were happy to have her back home.
Marilyn has already reported back for more duty. She will be here for a while to help take care of Kelly during the day. I wonder if she is making Hank wash his own clothes or what.
Debbie and Andy were also here to help Kelly get situated. I have attached a photo of the kids with their mom. Needless to say they were happy to have her back home.
Thursday, September 18, 2008
10:30 A.M. EDT - LAST DAY HERE
Not that much new today. Kelly has been up and around, eaten some cereal, stretched her neck muscles, and is now resting again, so I slipped away to the hospital to update the blog for a final time today. I probably will not be able to update the blog on Saturday.
One funny anecdote....to stretch Kelly's neck muscles, the physical therapist showed me how to place my hands on both sides of Kelly's head to keep her chin up and her head straight up and down, while she turns her head from one shoulder to another. Once she goes as far as she can on her own, I have to apply more pressure to stretch those neck muscles. Ocassionally, Kelly has mentioned to me that I was applying too much pressure, but I was barely touching her head. Well, last night we were trying to comb through Kelly's hair (what she has left) and I noticed a small screw-sized hole just above and behind her temple. We figured out this was one of the spots where they affixed (screwed) her head to some equipment so that it didn't move during the surgery. As you might expect, when I touch this particular spot, it was quite tender and explained why she thought I was applying a lot of pressure and I thought I was barely touching her.
Kelly and I are both anxious to get back home, but neither of us are looking forward to the trip. Kelly is not walking that well yet, so a New York cab ride, some wait time at the airport, a flight, a connection in Dallas, another flight to OKC, and then getting in the car and driving 40 minutes to the house just does not sound that fun to Kelly. We have arranged for special services to provide wheelchairs so she doesn't have to walk the airports, so that will help a lot. But, we would appreciate your prayers that the trip is tolerable for Kelly.
Thank you all again for your support, notes, cards, flowers and kind words, but especially for your prayers. We hope to see you all soon.
One funny anecdote....to stretch Kelly's neck muscles, the physical therapist showed me how to place my hands on both sides of Kelly's head to keep her chin up and her head straight up and down, while she turns her head from one shoulder to another. Once she goes as far as she can on her own, I have to apply more pressure to stretch those neck muscles. Ocassionally, Kelly has mentioned to me that I was applying too much pressure, but I was barely touching her head. Well, last night we were trying to comb through Kelly's hair (what she has left) and I noticed a small screw-sized hole just above and behind her temple. We figured out this was one of the spots where they affixed (screwed) her head to some equipment so that it didn't move during the surgery. As you might expect, when I touch this particular spot, it was quite tender and explained why she thought I was applying a lot of pressure and I thought I was barely touching her.
Kelly and I are both anxious to get back home, but neither of us are looking forward to the trip. Kelly is not walking that well yet, so a New York cab ride, some wait time at the airport, a flight, a connection in Dallas, another flight to OKC, and then getting in the car and driving 40 minutes to the house just does not sound that fun to Kelly. We have arranged for special services to provide wheelchairs so she doesn't have to walk the airports, so that will help a lot. But, we would appreciate your prayers that the trip is tolerable for Kelly.
Thank you all again for your support, notes, cards, flowers and kind words, but especially for your prayers. We hope to see you all soon.
2:00 P.M. IN THE VARIETY HOUSE
Sorry about the frequency (or infrequency) of updating the blog, but there is no wireless access at the variety house, so I have walked back over to the hospital to give you this update. There will probably just be one more update on Friday after this one today. Probably no update on Saturday since we will be traveling.
Kelly got a much better night's sleep, but I am still setting the alarm every fours hours or so to give her medications. If we let too much time pass, the pain becomes quite severe, so we try to stay on schedule even overnight with the meds.
She woke up feeling a little better than yesterday morning. She is walking around a little more, doing her neck exercises, and is a bit more clear-headed than she has been. She is looking forward to getting home. We will be leaving Saturday on a 1:00 flight and will arrive at the house around 7:30 P.M. or so.
Marilyn made it back home yesterday safe and sound. It sure was nice to have her here to get through the hospital stay and pretty much around the clock duty. The nurses try hard, but they have so many patients, they just lose track sometimes, so you really need an advocate in the room at all times to keep up with things.
Kelly now has a bladder infection, so we are starting a round of antibiotics (cipro) this afternoon. We are praising God for a great surgical outcome!! The initial recovery process has been a bit more painful than Kelly expected, and I think the continued recovery process is still going to take a lot of work, but we are sure thankful the Lord has brought us to this point with minimal complicatiojns.
We have received a lot of cards and flowers and they sure brighten the day and the mood over at the variety house. Thank you very much. But, more than anything, we believe that God answers the prayers of his people, so thank you for your continued prayers!
I will make another blog update tomorrow, and then it will likely be Sunday before you see anther one.
Kelly got a much better night's sleep, but I am still setting the alarm every fours hours or so to give her medications. If we let too much time pass, the pain becomes quite severe, so we try to stay on schedule even overnight with the meds.
She woke up feeling a little better than yesterday morning. She is walking around a little more, doing her neck exercises, and is a bit more clear-headed than she has been. She is looking forward to getting home. We will be leaving Saturday on a 1:00 flight and will arrive at the house around 7:30 P.M. or so.
Marilyn made it back home yesterday safe and sound. It sure was nice to have her here to get through the hospital stay and pretty much around the clock duty. The nurses try hard, but they have so many patients, they just lose track sometimes, so you really need an advocate in the room at all times to keep up with things.
Kelly now has a bladder infection, so we are starting a round of antibiotics (cipro) this afternoon. We are praising God for a great surgical outcome!! The initial recovery process has been a bit more painful than Kelly expected, and I think the continued recovery process is still going to take a lot of work, but we are sure thankful the Lord has brought us to this point with minimal complicatiojns.
We have received a lot of cards and flowers and they sure brighten the day and the mood over at the variety house. Thank you very much. But, more than anything, we believe that God answers the prayers of his people, so thank you for your continued prayers!
I will make another blog update tomorrow, and then it will likely be Sunday before you see anther one.
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