Tuesday, November 24, 2009

Four Weeks Post-Op: Gnarly Scar Pictures!

I’m good with titles – hopefully the “Gnarly Scar Pictures!” title was enough to get you to read. It’s been almost four weeks since my Chiari decompression surgery, and I’m recovering beautifully. I could not have imagined what this experience would have been like, but I’m better for it and so thankful that I had the surgery.

My neurosurgeon completed the surgery in 45 minutes (he was planning on one and a half to two hours) and apparently, my anatomy is pretty darn perfect (insert joke here). Because of that, he was able to reposition the dangly tonsils and move them up a bit back into my skull, which according to him is very rare. After surgery I spent four nights in the hospital and can’t say enough about the staff at CMC. From the ICU to the 9th floor of the Neuro wing, every single nurse and staff member took remarkable care of me. Minus some wicked nausea and a wee bit of pain (okay, maybe more than a wee bit), every day gets better with more activity, function, and time spent awake. Working through the fatigue is the biggest hurdle at this point. But I’ll gladly take the fatigue since most all of my Chiari symptoms have disappeared: no more tingly legs and pain in the arms, all the tension in my neck and shoulders is gone, and when I step out of bed in the morning my feet feel normal, not asleep and weak.


It’s amazing how a community can come together to rally around someone who needs help. I have never understood just how important that can be to someone until my brain surgery. Twenty four meals, countless well wishes and cards, elves who raked my yard, a husband who never let a ball drop, family and friends who never let our girls miss a beat – countless examples of how lucky I am but more importantly that the world is indeed full of good and gracious people.


So on this Thanksgiving… oh jeez that sounds so sappy given the author. But I’m having a hard time making a joke about this or being sarcastic. So I’ll go back to sappy. On this Thanksgiving, clearly I’m thankful that I had successful brain surgery. But I’m most thankful for everyone in my life (family, life-long friends, elves and friends on Twitter, Chantilly Montessori friends, parents, and staff, neighbors who make this ‘hood my favorite place to be…) who have helped me, Troy, Kate, and Emma stay afloat during one of the strangest experiences this family has been through.

Happy Thanksgiving. And *cheers* to my happy brain!


26 DAYS AFTER SURGERY


Monday, November 2, 2009

Happy Monday

Molly made it back home today. They discharged her around lunchtime and Troy brought her home. She was very relieved to be back in her own bed again. There were some very sweet banners and cards waiting for her at home. Troy's step-dad and mom are staying at the house and are helping take care of the house and the girls.

The nausea continues but will hopefully abate with some non hospital food. Molly still has very little stamina and needs lots of rest. She will probably be ready to receive visitors by the end of the week.

Many thanks again for every one's patience and support.

Sunday, November 1, 2009

Tomorrow

Hello All

I thought this was posted earlier. Apparently the iPhone is fallable. Molly is doing better. She was much more alert today and is trying to eat more than just saltines. As of lunchtime, she had been on a walking tour of the floor and was planning another for later in the day. The doctors say that if she continues to progress, she will be sprung tommorow! She appreciates everyone giving her the time to heal and looks forward to seeing everyone once she is home.

Saturday, October 31, 2009

Happy Halloween

Molly had a decent night's sleep. She even asked Troy to stop snoring! She is very nauceous still and has not eaten. The doctor says that Molly needs one good day eating something and getting up before they will send her home. They now are looking toward Monday. She is still very tired.


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Friday, October 30, 2009

New Room

Molly has been moved to a regular room. She was able to get out of her bed and be transported over in a wheelchair. Her nausea is better and for now she is very, very tired. She sends her love and asks that everyone please wait to come and visit. She will let you know when she is ready.


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Moving to a regular room

Molly us moving to a regular room this afternoon! The doctor says she is progressing nicely. Will let everyone know when she is settled.


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Day 2

Molly did get some sleep last night, but also had some nausea from the anesthesia. She has some pain in her neck and they are trying a new medication for help with this. She did wake up and say hello this morning and was able answer all the right questions. The doctor will be in later today to see how Molly is doing and she will have to be able to move her neck before they will transfer her to a regular room. Troy is still with her and plans on staying until Molly is out of the ICU. More to come later...

Thursday, October 29, 2009

Progress

According to the family, Molly continues to make progress. She drank some water and asked for some pain medication. Her response time is quicker and she seems more alert.

All done

Molly is settled into the neuro ICU. She looks great. She has her eyes closed but is giving the thumbs up signal when asked questions. I know she and her family are vey grateful for everone's support When she goes to a "regular room" I will let you know.

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No more food please

Sheri would like everyone to know that the carrolls have plenty of food. She is now taking names for a waiting list. :)

More

According to doctor all went well. It could not have gone better. She will be in recovery in two hours.


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Closing up

They are closing up now. Phew!

Surgery update

Surgery is underway and it is going well.


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In the OR

Molly has been taken in for surgery. Someone will check in from the surgical team as it progresses.


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Almost time

Molly is ready to go. Troy is still with her and her parents have been back to see Molly as well. The surgery may start as early as 7:15.


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Good morning

Molly has been checked in and taken back to be prepared for surgery. We are waiting in the fifth floor family surgery waiting area. Troy will go back to see Molly when she is ready and then the real waiting begins


- Posted using BlogPress from my iPhone

Wednesday, October 28, 2009

Molly's Brain Eve

Hello All

Molly and Troy are scheduled to arrive at CMC tomorrow at 5:30a. I will be there with them waiting in the wings in case they need me. Also, I just can't stand to not be there and they don't have the courage to tell me to go away. The surgery is scheduled for 8:00a and will be hopefully done by 10:00a. From there, Molly will go to recovery where we think Troy can be with her for a few minutes and then over to the Neuro ICU. This is a new unit and is supposed to be a great facility. The visiting hours there are only 20 minutes every four hours, so there will be very little interaction.

The girls are with us tonight and I feel lucky to have them. At least there is a part of Molly in my home. I think it is the part playing the music loud and looking for more Halloween candy. They are fine and seem happy to be having a sleepover.

I will post as much as I can as soon as I can tomorrow. Thanks again for all the support you have given the amazing Molly.

Peace Out, Kris

Saturday, October 24, 2009

I've Got Brains that Dingle, Dangle, Dingle

Next Thursday, October 29th, I’m having Chiari Decompression surgery at CMC Main. I have an Arnold Chiari Malformation Type 1 with a syrinx. Sounds complicated, but it’s actually very simple. My brain has “tonsils” in the back lower section that hang out of the base of my skull. No, my brain is not too big for my skull. Kate says that my skull is too small for my brain. I just say that my brain “dangles.”

The tonsils impede the flow of cranial fluid which has formed a syrinx (cyst) of fluid in my spinal cord. The syrinx is growing, so my doctor has recommended surgery to prevent any irreversible damage to my spinal cord. The surgery will release the pressure on my brain and allow the cranial fluid to flow as normal, theoretically minimizing the syrinx.

Here’s how the surgery works: Going in through the back of my head and neck area, the doctor will remove a portion of the bone at the base my skull and first vertebrae. He’ll then cut an incision in my brain’s dura (the brain’s protective outer layer). The incision will create a “Y” opening in my dura that will release the pressure it’s currently putting on my brain. He’ll patch the expansion in my dura with some type of patch (most likely the lining of a cow’s stomach, or perhaps cadaver dura), sew up my head, and send me on my way. I’ll be in the ICU overnight, and then in the hospital for an additional 2 – 3 days. And then, most likely craving Chik-Fil-A (get it? Because of the cow stomach lining?).

About three years ago I went to the emergency room with a violent headache. The doctor performed an MRI and discovered the Chiari and syrinx of fluid. We’ve been monitoring it ever since with annual MRI’s. I have been very lucky – most people with Chiari have pronounced symptoms that affect them daily (debilitating headaches, tingling in appendages, tension in head and neck area, nausea, dizziness, imbalance). Thankfully I would only experience an awful headache about twice a year, three times at the most. But in the past nine months, my symptoms worsened. And when I had another headache in August, I went in for my MRI and they discovered that the syrinx had grown. Now I realize that I, too, had been experiencing all of the more pronounced symptoms, but I linked them to stress. I never linked them to Chiari.

Recovery – that’s the unknown part. I’ll be exhausted, physically and mentally, for a couple of weeks after the procedure. They’ve told me to plan to be “doing very little” for six weeks (does “very little” include a matinee premiere of “New Moon?” on November 20th? It does? Good). My doctor said that every available energy cell will direct itself to my head and neck area as I heal, and that I need to rest as often as possible to allow the process to work properly. Stitches come out about 10 days after the surgery, and I’ll hopefully be cleared to drive about three weeks after the surgery. Just in time for Black Friday shopping after Thanksgiving. I’m kidding. (Am I?)

So that’s pretty much it. Feel free to joke with me about my dangly brain, or about the cow lining I’ll soon have in my head. I’ve been laughing my way through this entire process. In the grand scheme of things, this is really no big deal. Sure, its brain surgery, but it’s also preventative surgery. And it’s (hopefully) a one-time only deal. I consider myself lucky that I don’t have anything wrong that can’t be fixed. And while this surgery is rare, I have complete faith in my doctor. He said to me “We don’t perform Chiari Decompression surgeries all the time. But the procedure is the beginning and ending of every craniotomy I do, just without all of that stuff in the middle.” Like removing a tumor, or eradicating cancer. So I’m considering myself pretty low on the neurosurgery totem pole.

We’ll keep you posted with updates, and I’ll most likely include silly, rambling posts to occupy my time. Much thanks to Kris Daniels for setting up this blog. And to Sheri for arranging the meal train (food is love, a certain friend always tells me). I know I’m a good person, and that people (generally) like me, but good gracious, folks – nothing like having a bit of brain surgery to fully understand how much you are truly loved. I can’t thank all of you enough for the positive vibes, prayers, thoughts, laughs, and hugs.

More to come…

xoxo

Molly

Friday, October 23, 2009

Update

Hello All

Molly should be posting soon herself. In the meantime, she has been to CMC and has had all the necessary bloodwork done and pre-admission paperwork. Everything is a go from here.

Thanks for checking in here!

Saturday, October 3, 2009

Here we go!

As of October 4th, Molly's surgery is scheduled for October the 29th. The surgery will be at Carolinas Medical Center. For approximately the first 24 hours Molly will be in the Intensive Care Unit. There are no visitors allowed in the Intensive Care Unit except for direct relatives. After, she will be moved to a regular room and will stay there from one to five days.

As the date approaches, we will let you know any additional information we have. If you have anything you would like to share on this blog, please contact me, Kris Daniels at krisdanielsis@gmail.com or 704-200-8075. I will be glad to share it with everyone.