Kelly's Chiari

1 YEAR ANNIVERSARY

2009-09-14T07:11:00.000-07:00

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.

3 Months Post OP

2008-12-16T09:24:00.000-08:00

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.

6 1/2 WEEKS POST OP

2008-10-27T13:35:00.000-07:00

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.

3-4 WEEKS POST OP

2008-10-05T22:26:00.000-07:00

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

Doing better....September 27?

2008-09-27T22:08:00.000-07:00

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 alive and wide awake!

2008-09-24T00:44:00.000-07:00

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

8:00 P.M. CDT - I'VE GOT IRONING TO DO!!

2008-09-21T18:21:00.000-07:00

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.

8:00 P.M. CDT - HAPPY TO BE HOME!!!

2008-09-20T17:53:00.000-07:00

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.

10:30 A.M. EDT - LAST DAY HERE

2008-09-18T10:56:00.001-07:00

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.

2:00 P.M. IN THE VARIETY HOUSE

2008-09-18T10:56:00.000-07:00

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.

9:00 A.M. EDT WEDNESDAY

2008-09-17T06:20:00.000-07:00

We got a reasonable nights sleep last night, but Kelly slept directly on her back, rather than on her side, which put pressure on the head incision and gave her some pain and dizziness this morning. Kelly had some Cream of Wheat, Cheerios, and hot tea for breakfast.

Maryilyn is packed, looking like a million bucks, and ready to go home this morning. I will get her off to the airport around 12:30. We haven't seen the doctors yet today, but we expect to be released from the hospital sometime today.

7:00 P.M. EDT - CONTINUING RECOVERY

2008-09-16T15:50:00.000-07:00

TWO bowls of cereal for dinner tonight and now she is disinfecting the room with germ junk. Previously, when we walked, I was holding on to her elbow and supporting her, but tonight she is walking by herself with a cane for assistance.

Marilyn is planning to head home tomorrow on a 4:oo Southwest flight and arrive in OKC at 8:20. Kelly will be moving out of the hospital and into the variety house tomorrow. Probably looking at getting Kelly home on Saturday.

HI

2008-09-16T13:06:00.000-07:00

Hi Mom Hi Dad Hi Grandma Love You All.

1:00 EDT - CLEAR HEADED AND HUNGRY

2008-09-16T10:09:00.000-07:00

The old Kelly is returning. I could see the wheels in her mind turning this morning. She woke up going through lists of things that needed to be done, planning, and organizing her bedside tray. She has been awake all day today, with no catnaps and no dozing off. So, the medications must be wearing off. She is also in much less pain today. She was actually excited about lunch arriving. I have a feeling I will soon lose control on the updates of the blog....

The therapist came around today and gave us all a little training on how to develop Kelly's neck muscles. The doctors are likely to keep us here one more night. We will be moving to the variety house tomorrow. Looks like we may be heading back to OKC on Friday or Saturday depending on how much Kelly progresses.

10:00 P.M. - STILL RECOVERING

2008-09-15T19:06:00.000-07:00

Kelly is walking much better. She is able to walk from her bed to the bathroom in her hospital room by herself now. However, she is still nowhere near 100%. She didn't keep her food down again today. She is still doing a lot of basic neck exercises, shoulder shrugs, turning her head back and forth, etc. It is important to do them frequently to break up the scar tissue, and if done correctly now, will increase her neck mobility later.

For those curious about the tube coming out of Kelly's incision at the base of the neck, I should have mentioned that this is for drainage. There was quite a bit of fluid created by the trauma of the operation. They removed that tube yesterday.

For those following the blog to learn more about the Chiari surgery and recovery process, Kelly wanted to mention that they are constantly checking your blood sugar and may need to give you insulin. Also, due to a significant amount of time flat on your back that could result in respiratory problems, they give three Heparin shots in the stomach each day. Risks of Heparin include low blood-pressure, vomiting and other side effects.

Also, I see our kids hacked us again. Guess I'm going to have to improve that password. Don't let anyone at Devon, especially Internal Audit, know that my password wasn't secure enough!

LOVE YOU!!!!

2008-09-15T17:18:00.000-07:00

Love You Mom, Love You Dad WE MISS YOU. HI GRANDMA

Hope You Are Having Fun!!!!!!!!!!!!!!!!!!! LOVE YOU ALL

MONDAY 4:00 P.M.

2008-09-15T13:09:00.000-07:00

More progress today with a few walks of about 30 yards each. One of the poor nurses forgot to bring the pain medicine, and well, lets just say that probably won't happen again. They are talking about releasing Kelly from the hospital room in the next day or two. We would then move her to "the variety house" for a few more days until she has recovered enough to travel.

I have attached a photo of Kelly when her back was turned. DON'T LOOK AT IT if you are squemish!! Also, I have been telling Kelly they didn't take much of her hair, so let's just keep this little photo to ourselves, at least until I get home and have a more comfortable doghouse to sleep in.

MONDAY MORNING - 9:00 A.M. EDT

2008-09-15T05:55:00.000-07:00

Kelly had her first decent nights sleep since the surgery. Being in a regular room without as much in-and-out from the nurses was great. She woke up feeling good and ready to take a walk. We disconnected her from her IV, took off those pump-it-up air booties and went for a short walk. She got tired fairly quickly but did very well.

So far, all her neurological functions seem to be doing fine. Walking, coordination, movement, eyesight, etc. all seem to be good. She is having some trouble swallowing, but the docs say that is probably a result of swelling in the neck that is normal with this surgery.

Kelly is doing neck exercises every 30 minutes to help reduce scar tissue and improve her neck movement. The scar on the back of her head is pretty long, going from the crown of her head down to where the neck touches her shoulders. It seems to be healing very well. She is sleeping again now and we're looking forward to a great day.

SUNDAY 8:00 P.M.

2008-09-14T17:14:00.000-07:00

Kelly took one look at what she said looked like dogfood on her hospital tray tonight and sent me to the cafeteria for a box of corn flakes and milk. Kelly really enjoys her cereal at night, even here in New York. We went for another short walk tonight.

By the way, I am really enjoying all the comments that you guys are making on the posts. Thanks so much for following along with Kelly's progress. Just so you all know, she isn't up to reading yet, so I am reading them to her. I'm sure as soon as she gets off some of this pain medicine we'll go through them all again. She says to tell everyone thanks and that she loves you all. Also, I am not smart enough to use Kelly's phone, but I see it has a lot of calls and emails on it. I doubt that she can get to that phone for at least another day or so.

Marilyn was talking to Debbie today and made the mistake of handing her cell phone to Kelly. It was like taking crack cocaine from an addict to get that phone out of her hands. Her hand strenth and grip are better than I thought.

Marilyn is now staying at a house across the street called "the variety house", kind of like a Ronald McDonald house for families of patients that have long stays. I met another woman there today who had a Chiari surgery 4 years ago, but had to come back for the tethered cord surgery a few days ago.

I have been promoted from a chair to some type of chair that pulls out into a bed. I tried to pull the bed out earlier and it looks like it would fit Kylee or Bailee just right, if they could handle the screeching of those springs....oh, well, better than that chair in the ICU.

SUNDAY 4:30 - MOVED TO REGULAR ROOM - HURRAY!!

2008-09-14T13:30:00.000-07:00

Kelly slept much better last night! I stayed with her again. This morning she ate a few bites of breakfast and made a couple of laps around the nurses station. They have disconnected most of the tubes and wires. She is still getting some IV fluids (40 ML/Hour) and she has some leg booties on that inflate and deflate to help with the circulation since she isn't up and around much yet.

We moved on the regular floor in the Neurology wing. We are at North Shore University Hospital, 300 Community Drive, Fourth Floor - Cohen Wing, Room 473, Manhasset, NY 11030

Marilyn and I had to give the room a little spit shine with anti-bacterial wipes before Kelly could get comfortable. I have to admit, it needed a little wipe down! Marilyn just got Kelly out of her hospital robe and into her pajamas that she brought. She is getting better each day.

7:00 P.M. EDT - NEUROLOGICAL CARE UNIT

2008-09-13T15:53:00.000-07:00

Kelly has had a better afternoon. She has eaten small bites of grilled cheeze, some soup and some apple sauce. She has been taken off the pain medicine pump and transitioned to pills. This has resulted in increasing her blood pressure back to normal, and elimating some of the dizziness and nausea she was experiencing. She has sat up several times today and walked about 30 yards or so. This afternoon I also learned that they didn't remove the portion of her brain that controls her temper, but that is another story.

We have learned there are seven other Chiari patients here at the hospital. I met the husband of a woman who had the surgery the day before Kelly had hers. He only had positive things to say about The Chiairi Institute and the doctors here.

SATURDAY 10:30 A.M. - STILL IN NEUROLOGY CARE UNIT

2008-09-13T07:44:00.000-07:00

It was a long night for both Kelly and I last night. They told me the icu didn't allow visitors after 8:00 p.m., but they couldn't find anyone willing to try to forcibly remove me from the room, so I stayed in a chair in Kelly's ICU room last night. Kelly is still in a lot of pain. The pain management group says that the Chiari surgery is very painful due to the neurological impact of the procedure.

Her blood pressure is slightly lower than normal, so the blood pressure alarm was going "bong...bong....bong" all night long. Between that and an army of Doctors, Nurses, Pain managers, Housekeepers, Food Providers, Trash Collectors, Linen Changers and Administrators, there was no sleep for either of us.

She ate 2 spoons of broth, 1 spoon of yummy cherry jello, and a half of a cracker this morning. She got out of bed and sat in a chair for that meal. We then disconnected her from all her wires and tubes and took her for a 12 step walk. She is more alert, talking better and looking stronger this morning. Progressing on schedule.

STILL IN NEUROLOGY CARE ROOM - 6:00 P.M.

2008-09-12T14:55:00.000-07:00

Kelly ate a few spoons of broth, some jello, and a little orange sherbert. Then she tried to get out of bed and sit in a chair for the second time....and lets just say that she now has an empty stomach again. She is doing some stretching exercises for her neck by moving her chin from one shoulder to another. This is more difficult than it sounds due to the swelling from the surgery and the sensitivity of the muscles in the neck, but she already has much better movement of her head than she had this morning. She is still in a lot of pain. Doctor B came by on his rounds and said she was doing well.

STILL IN NEUROLOGY CARE ROOM - 2:00 P.M.

2008-09-12T11:08:00.000-07:00

We got Kelly out of bed and into a chair, which was a big accomplishment. She is now asking for ice chips and broth which is good.

KELLY IN NEUROLOGICAL CARE UNIT - 10 A.M.

2008-09-12T08:29:00.000-07:00

Kelly had a long night in the recovery room. They poked and prodded and wouldn't let her sleep, so she is a bit grumpy this morning. When I asked her how she was feeling just now, she said "my head hurts". She is giving the nurses a hard time and staying on top of them. She is about to try to sit up so we'll see how that goes. All's well so far.

FRIDAY MORNING - 8:00 A.M. EDT

2008-09-12T06:05:00.000-07:00

Sorry, nothing new yet. They didn't allow visitors all night. Now they are moving her from the recovery room to the Neurological care room. We should be able to see her within the next hour of so.

KELLY STILL IN RECOVERY - 8:00 P.M. EDT

2008-09-11T17:46:00.000-07:00

I just got to see Kelly again. She is still heavily medicated and groggy, but she looks good. She spoke to me (ok, mumbled is probably a better description) for about 30 minutes. She is in good spirits and has quite a peace about the surgery which she is attributing to a lot of prayer. I was just told that she will be in the recovery room under constant supervision until tomorrow morning when she should be moved to a Neurological Care Room (kind of like a private room for neurological intensive care patients). I will not be able to see her again until tomorrow morning.

Thanks again for all your prayers.

Charlie

2008-09-11T14:20:00.000-07:00

Hi Mom and Dad,

I "hacked" the blog so I could say I love you.

Love You,

Landon

KELLY IN RECOVERY - 5:00 EDT

2008-09-11T14:00:00.000-07:00

Marilyn and I finally got to see Kelly (only for 5 minutes) in the recovery room. She is looking and sounding great. Even though still heavily drugged, groggy, and barely able to speak, she wanted to know how the surgery went and reminded me that I needed to be taking lots of notes. She also reminded me to call some people to update them on her status. She also mumbled "spelling test tomorrow" to remind me that one of the kids (I don't even remember which one) has a test tomorrow. When I told Kelly about all the notes, calls, and prayers, she said to tell everyone she loves them.

Staying in normal form, Kelly also mumbled "can you move me away from this chick next to me". The lady happened to be a loud New Yorker who had some type of bowel surgery and Kelly could hear her talking through the curtain. Marilyn responded with "they're going to move you to a room soon", which momentarily satisfied Kelly. But then, the recovery nurse blurts out, "sorry, we have to keep her in recovery until tomorrow morning to monitor her". I don't know how Kelly heard or processed this conversation since she was really out of it....but she mumbled, "oh no, just shoot me now". I'm sure that most of you can hear Kelly saying this.

We will be able to see her once again at 7:30 p.m. tonight for a short time. Then we won't be able to see her until tomorrow morning.

Please keep the prayers coming, praying for a speedy recovery, no infections and that she doesn't pull the plug on the poor New Yorker recovering next to her.

Charlie

TECHNICAL DETAILS OF THE SURGERY

2008-09-11T10:51:00.000-07:00

Now, for those of you interested in some of the technical details of the surgery.... They were able to create the space in her skull that she needs by removing about 2 square inches of skull on the back of her head. They removed a little more skull than they planned in order to be able to access some portions of her Dura (brain covering) that needed some repair. They also removed a portion of the C1 vertebrate, as well as just a small amount of the C2(less than they had planned). The doctor indicated that instability (due to the removal of these vertebrates) should not be a problem. He indicated that Kelly's skull was quite thin, due to the constant pressure and bone erosion caused by the clogging of the brain and the brain stem, but followed up by saying this should not create any specific problems.

Additionally, they repaired 7 small holes in her dura that were also caused by pressure and erosion. The erosion (to both the skull and the dura) was caused by trying to squeeze the CSF fluid though very small spaces in the skull for all these years.

The length of her brain herniation was significant, 27 mm on one side and 22 mm on the other. Additionally, the fourth ventrical of her brain had been pushed down almost an inch which is also quite notable. That puts her in the 94th percentile of patients they have seen (this portion of the brain should not be pushed down out of the skull). However, that issue by itself doesn't necessarily mean there will be neuroligical symptions. Kelly has previously mentioned a potential follow-up surgery called a tethered cord surgery which might also help this. But, the doctor wants to give her a few months to determine if there are any more symptoms from the fourth ventricle being so low, but he is optimistic.

They shrunk the herniations that were hanging down (like fying bacon the doctor says) and inproved the CSF flow dramatically as a result. The doctor has indicated that Kelly doesn't use this portion of the brain for anything.

We have not seen her yet, but should soon. She will be in the recovery room for a while, and will move into a special room - neurological intensive care- for a couple of days. After that she will move into a regular hospital room for about 3 days. Then we'll see how she is doing and whether she needs to move into the off-site location here by the hospital.

I will post again once we see her in recovery room.
Charlie

SURGERY OVER - GOOD RESULTS

2008-09-11T10:32:00.000-07:00

We just spoke to Dr. M about Kelly's surgery. As a reminder, the objectivews of this surgery were primarily 1) to make more room in her skull, 2) to shrink the tonsillar herniations that were putting pressure on the brain stem, and 3) restore the circulation of the Cerebral Spinal Fluid (CSF) in the brain. The good news is that all three objectives were met and Kelly has done well during the surgery.

More technical details to follow.

MORNING OF THE SURGERY - 7:00 a.m.

2008-09-11T05:01:00.000-07:00

Hello everyone,

Well, Kelly was smiling and in good spirits as she went into the surgery room. It will take a couple of hours just for the preparation time. The surgery will start around 9:00 a.m. EDT. It is expected to take several hours. We really appreciate all your prayers. We won't know much about how the surgery went until around 3:00 p.m. today, but I'll keep you posted if anything new develops.

Charlie

NIGHT BEFORE SURGERY

2008-09-10T17:59:00.000-07:00

It is the night before the surgery. Mom and I were up at 5:00 to start the day. Several comments that were made throughout the day made me even more comfortable about being here.

First, on the way to our testing (MRI, X-rays, etc.) our cab driver told us that his daughter had surgery for Arnold Chiari years ago BEFORE TCI was established. He has meet approximately 40 patients over the past few years with ACM. He said that every single one of them has had nothing but good things to say about TCI. Listening to him share stories about how bad off these people were confirmed my decision NOT to have surgery locally.

At noon, we went to the hospital for pre-surgical testing. The nurse was surprised that I didn't take medications on a regular basis. She said most people with what I have are on several medications. Then she said that out of all the people she has seen with Chiari I was in the best condition. She stated that most are "really messed up" when they get to New York. We were there for about 1 1/2 hours. They asked a panel of questions, took my blood, and performed a electrocardiogram.

I spent the next 3 hours at TCI. Dr. S meet with me for over an hour. He was very informative. He stated that the amount of pannus formation was significant and further explained in detail the potential dangers of basilar impression and retroflexed odontoid. After talking to him it did confirm that surgery is the best alternative at this point in time. Then, Dr. V spent a very long time discussing the surgery tomorrow. I was very disappointed that I didn't get to talk to Dr. B. Dr. V told me that my herniation was the longest that he had ever seen. I was really surprised by that... Previously, Dr. B told me that I would have Invasive Cervical Traction while I was here and then Tethered Cord Surgery in a couple of months after I was decompressed. However, Dr. V told me that he thinks I should adopt a "wait and see" approach. Sounds great to me....but I would like to discuss this with Dr. B if possible. Dr. V and S explained to me why they think I should adopt a "wait to see" approach to the tethered cord and craniocervical instability surgeries. I really, really was impressed with both of these doctors.

All three of us were pretty comfortable about everything when we left TCI tonight. When Dr. V mentioned mortality rates I specifically asked what TCI's rate was...0%! That made me feel great. I feel SO MUCH BETTER. Also, even though my brain herniation is so severe, the part that they are going to "fry" is not important...good. Also, the rate of dura leak is .2% here compared with a MUCH, MUCH higher rate at other hospitals. I will have NO STAPLES. That is a nice surprise! Also, Dr. B and Dr. M pioneered some cool procedure to detect leaks. (NOTE TO FRIENDS: As I am writing this, Charlie is sleeping. I am looking at his notes from the discussion to provided more details about what the surgeon stated. I found NO notes from the discussion from the surgeon, but Charlie did write down the name of the steak restaurant that the surgeon recommended for dinner tonight!! Burton and Doyes in case anyone is interested!)

HAIR LOSS: As you know...huge concern for me...ha/ha. I was told to go and fix my hair one last time because tomorrow a bunch of it was going to be gone! He explained that they will take a section from the upper part of my head and form a patch over my dura. So, that is why they are going to shave so much hair. Again, no notes from Charlie so I can't be specific. In summary, they do not use human cadaveric pericadium or bovine pericardium. This is good news for my health, not for my hair.

The most surprising new of the day: Charlie actually talked my mother into having a pedicure! It was the best part of the day! The weather was incredible. We had a great meal tonight under the stars to celebrate. At this point, I am so comfortable with the decisions made thus far to get us to this point. Had I decided to have surgery 4 years ago, the surgery would have been competely different. So much has changed in the past few years. They have performed literally hundreds of surgeries since then and altered the approach (for people that have ACM, RO, and BI). I have this unexplainable peace right now. I know that I have literally dozens of people praying for me this week. The peace I have right now could only come from above. Thank you so much for your prayers.

Much love, Kelly

PS. I know that I have received several calls, and would love to return the calls right now because I am NOT TIRED AT ALL since I consumed a bucket of tea tonight. However...Charlie and Mom are asleep so I can't make any phone calls. Please forgive me. I have to be at the hospital early, so we are getting up at 4:15. Please feel free to call mom or Charlie as much as you want tomorrow. I love you all....

DR. B'S DIAGNOSIS

2008-09-03T10:51:00.000-07:00

Chiari I Malformation with 22mm of tonsillar herniation, Retroflexed Odontiod, Basilar Impression, Severe Brainstem elongation (67mm), highly suggestive of tethered cord, occult variant. RECOMMENDATION: Invasive Cervical Traction, Posterior Fossa Decompression followed 1-3 months later by a section of the filum terminale to address the teth cord; will watch for craniocervical instability, possible craniocervical fusion in extraction CCF at a later date.

Background

2008-08-16T19:28:00.000-07:00

I started experiencing symptoms after my third daughter was born in 2000. It started with terrible "sinus" headaches...at least that is what I thought. At first the headaches happened only when I lifted weights, worked out, laughed, etc. I am grateful that I was diagnosed on my first trip to a neurologist. MRI confirmed Arnold Chiari Malformation. The first neurosurgeon recommended surgery. I didn't like the answers he gave me to my many questions. I heard about TCI on the internet. I meet with Dr. B and Dr. Kula at TCI. I was told that I have a retroflexed odontoid. It was explained to me that they would typically recommend surgery for someone in my situation if they were functioning at 70%. However, since I had a RO, I should wait until I was functioning at a 30%. They recommended Dr. M in Iowa City for another opinion. I flew to Iowa City. At this point, I decided to wait for surgery. Now, several years later and another trip to New York, I am scheduled to have surgery September 11, 2008. See links below to sites that provide additional information.

The most information on the surgery (for those interested):
http://www.chiariinstitute.com/Videos/index.html The Chiari Institute has several videos on their website. Click videos. Click Patient Education. Click Chiari Malformation Surgery. Other links:

http://www.chiariinstitute.com/contact_us.html , http://en.wikipedia.org/wiki/Brain_herniation , http://www.csmc.edu/5722.html http://www.csmc.edu/5722.html , http://www.conquerchiari.org/index.htm http://www.conquerchiari.org/newly%20diagnosed_files/frame.htm ,
http://www.chiariconnectioninternational.com/