It is hard to believe that it has been over 6 Years since MK was diagnosed with Chiari. Since her surgery she graduated from High School, graduated from Clemson University with two degrees and is at the University of Virginia working on her PhD. We are truly blessed.

3 Months Post Op MRI Results

MK had her follow-up MRI last week and we met with the doctor yesterday to go over her MRI. We had great news - the syrinx (cyst) has indeed collapsed and her spinal fluid is flowing as it should. The decompression surgery worked and her cerebellum "tonsils" have plenty of room. The doctor said she should be fine from here on out and she can put this behind her.

As parents this has been a tough journey, there is nothing tougher then watching your child go through something like this. Emory University Hospital in Atlanta was outstanding and DR. Barrow did a great job.

Please feel free to contact me at any time if you have any questions that may help you or you family member get through a similar situation.

d263moore@gmail.com

Five Week Post Op Appt With Dr. Barrow

Today we had our post op appointment with Dr. Barrow. Everything looks good and MK has a full release to do what ever she would like, to include driving, and jazzercise. I kept telling her I have veto rights on all activities.

She will have a 3 month MRI on June 30th to see if her syrinx has decreased in size.

Thats all for now.

Four Weeks Post Op

Hard to believe it has been 4 weeks already. MK has been going to school full time this week and is doing ok. Her neck does get sore some after sitting up all day at school, but she seems to be handling it well.

Her range of motion on her neck is much greater turning to one side then the other. Since we meet with Dr. Barrow next week, I figured we would wait until then to see what stretching exercises or physical therapy he recommends.

My next post will be May 5th after we meet with Dr. Barrow.

Three Weeks Post Op

Tuesday was three weeks since MK had her surgery. She has been going back to school this week for half days and is doing well. It is hard to believe she had major brain surgery and is back at school already. Our next appt. with Dr. Barrow is May 5th.

Third Day Back Home

Mk is continuing to make a great recovery. Since we have been back from the hospital she has not had any headaches. She is rapidly catching up with all of her homework, with some help from some of her friends.

I just read a comment to one of my posts that on May 3rd the TV show HOUSE will be about a girl with Chiari Malformation. I hope it is realistic and factual.

Based on how well things are going I probably will not post again until next week once MK has gone back to school. Here is a picture of her incision area (minus the stitches) after she had been able to wash her hair for the first time in two weeks.

Second Day Back Home

MK is doing well. When I woke up this morning around 8 AM she was already up and in her brother's room using his desk and doing home work. The kid is driven. Yesterday while I could barely keep my eyes open she was printing off her assignments.

She went to bed last night around 9 PM and slept till around 7:30. I went to bed around 9:30 and did not wake up until around 8 am. After seeing that MK was ok I decided to go into work since Holly will be off today and tomorrow.

Holly and MK went up to the local bird feed store and to run a few errands. MK loves to play with the dog at the bird feed store. She seems to be doing very well.

More later

Home Again

Well we are back home!! I can't tell you how good it is to be home. MK is doing great. The last two days have been the best since her surgery. Only needed a couple of Tylenol for the past 48 hours. What a change compared to Sunday. Now we are just on steroids and antibiotic. The stitches came out this morning as planned and her incision area is looking good.

Next order of business is laundry, rest, rest, rest.

More tomorrow.

Day Four Back in the Hospital

All news is still good. Dr. just came in and said we should be going home mid day. A medical student just came in and took out her stitches. The cultures are still negative which is good news.

Mk woke up hungry and ready to go home.

I will add to this post later today.

Day Three Back at the Hospital

Good news today. Shortly after my last post MK woke up around 2 AM and was hungry and wanted to talk. Since she had just started taking the steroids at 5 PM the night before, I was amazed at how quickly it made a difference. Since then she has been eating all her meals, with the exception of dinner tonight and that is because she just finished a big milkshake.

All of her vitals are good and the infectious control doctor stopped by and said that the cultures are still clear, which continues to tell everyone she does not have bacterial meningitis. By ruling out bacterial meningitis then it would be chemical meningitis and thus the treatment with steroids.

Since that time her headaches have been minor and infrequent. Today she had visitors and then watched tv for many hours and played on the computer ( she had to watch the latest version of House on the computer. You would think she had enough of the doctor thing). She is taking a nap now. So all in all a very good day so far.

All the doctors are saying that if the cultures still show no infection tomorrow then MK will be able to go home tomorrow. We are all very hopeful.

If we go home tomorrow they would prescribe her some antibiotics for the urinary infection and some more steroids. This is much better then if she did have bacterial meningitis where she would have to have a port installed so that she could continue to take IV antibiotics for over a week.

MK will most likely get her stitches removed tomorrow and then they want us to wait two days before she can get the incision area wet. A couple of more days with the greasy kid look.

Thats it for now, if anything changes I will add to this post.

Day Two Back at the Hospital

Later in the day on April 12...the doctors are thinking this may not be a bacterial infection after all but that MK may have aseptic meningitis as a result of her surgery. This could be caused by her body reacting to the patch that they put on her dura. The treatment for this is steroids and they have just started her on a course of oral steroids. She is still on all the antibiotics as well and will remain so until they rule out a bacterial infection (about another 36 hours to 48 hours). (As one doctor put it, she's being hit with a bazooka of medicines that should knock out whatever ails her.)

MK has been very sleepy today and had some pain from the headaches. We hope that she'll rally some tomorrow but the doctor said the rest may be just what she needs. The steroids should help with her headaches, too.

Well it is 12:15 AM,

Pretty boring this time of night when you can not sleep. Holly and MK are both sleeping which is good. I am hoping the steroids she is getting is doing the trick. I can't tell you how disappointing this set back is to everyone. We are still very impressed with everyone at Emory. The ER has a little to be desired. Maybe it was because it was so crowded and we spent the first couple of hours in a bed in the hall way. Once they moved MK into a room in the ER everything was as expected, very impressive.

Excuse my rambling if I go on and on. There is not much to do at this time of night. Do you know how many times someone comes in to check things, take vitals, or other things, you got it -- All the time.

That is it for now, I am going to move to computer card games. Next post tomorrow. Keep MK in your prayers.

Back In the Hospital

Well things were going along ok until late Friday. Early Friday I took MK to Walmart to get her out of the house. Things had seemed to be going ok with her pain under control. That night she got a bad headache and then it continued into Saturday until around 5 PM. At that point we celebrated Ryan's birthday and had some cake. That night MK slept well but when she woke up on Sunday and had her headaches again. At that point Holly and I decided to take her to the ER at Emory. They saw she had a low grad fever and a urinary track infection. They then decided to do a spinal tap to see if she had an infection there also.

The results of the spinal tap were positive so she is now on some heavy duty antibiotics. At this point we are not sure how long we will be in the hospital. Right now it is 2:45 am and she is sleeping well.

As I learn more I will continue to update the blog.

Post Surgery - One Week

It is hard to believe it has been a little over a week since MK had her surgery. Looking back on the past week I want to let everyone know how impressed we all were with Emory University Hospital. All the Drs., nurses, staff, and facilities were top notch.

Recovery is going well. About once a day MK is getting a strong headache, but other than that she is eating and feeling well. She is scheduled to have her stitches removed on April 16th. Dr. Barrow's nurse likes to keep them in a little longer than most. MK's follow-up appt. with Dr. Barrow is scheduled for May 5th.

Hopefully after MK has her stitches removed she will then be released to go back to school. From our perspective we need to work on stretching her neck muscles and making sure we feel comfortable with her going back to school. I am glad that she will be staying home next week also. I don't want to push her recovery.

No more posts until after her stitches come out.

Day 6

Mk slept very well last night until about 5 AM and then needed some pain medication. When she later woke up around 7 AM she had a bad headache. After taking a muscle relaxer and an Advil she started feeling better and moved to the chair. At that point she was ready for breakfast and had some honey nut Cheerios.

Tomorrow we will call the doctors office to set up her appt. to have her stitches removed. Based on the discharge papers her stitches should be able to be removed somewhere around 10 to 14 days after her surgery. Until one day after her stiches are removed she can not get her incision wet, so that means she can not wash her hair.

Six weeks after the operation she will have a follow up with Dr. Barrow and then I would imagine she will get an MRI around 3 months after surgery.

Today's goal is to have her come down stairs, she wants to plant some of her flower baskets she had received a while back. We will also work with her on stretching her neck and walking.

Day 5

Well after a good night's sleep it was time to get the house in order for MK. I went to get a hand held shower head, 50 feet of TV cable, and a baby monitor. I put the shower seat together and installed the hand held shower head in our walk in shower. Now MK can sit and take a nice shower and not worry about getting her incision wet. She will not be able to wash her hair until after the stitches come out. That would be about 14 days after surgery.

I ran the tv cable so that MK now has a 32 inch TV with DVD in the guest room. We also set up the baby monitor in the room so that when she needs something or wants us to bring her something, all she needs to do is just talk. Yes she now has a first class room. Above are some pictures of her in the guest room.

MK took a shower in her new top of the line walk in shower room, and then had a P&J sandwich, banana, and cookie.

Two of her friends have been visiting for the past hour and just left. That was good for her even if it tired her out. Above are a couple of pictures of her incision. Sorry they are blurred.

Day 4

Day 4 was kind of a blur. The night before we had moved to a normal room, which was nice but much smaller. They said MK would be able to rest there better, but they seemed to come in that room more than they did in ICU. Above is a picture of the room.

Mk was able to get up and with the help of Holly take a shower and put on her own pajamas instead of the open back hospital gown. Those two actions made a world of difference in how MK felt.

Later OTs and PTs came in and worked with her then had her walk the hallway.

I decided to go home and do some laundry, get the mail, and maybe get some rest. If only things went as planned. Just after I got home Holly called and said that they would be releasing her soon. So as soon as the laundry was done I headed back down town. Then we were in hurry up and wait mode. We saw Dr. Barrow one more time and then around 4:45 we were released to go home. Just in time for Atlanta rush hour on a Friday evening before a holiday. To all of our surprise traffic was light. With us driving in the HOV lane we made it home in about 40 mins. I must say I did a great job on making it one of my smoothest rides MK has ever had.

Once we were all home, MK sat in a chair in the living room while Holly went to get the prescriptions filled. I then move the Lazy-boy chair up to the guest room. That wore my butt out since it came from the basement. MK walked up stairs and sat down in the recliner while I worked on getting the bed ready. I placed a bunch of blankets and pillows under the mattress so that it was inclined. By sleeping and resting in the inclined position it takes any pressure of the back of her head.

Mk ate a bowl of Cheerios and half of a McDonald's hamburger.

Holly and MK slept in the Guest room last night and I got to sleep in my bed. Everyone slept very well. Mk only woke up once to go to the rest room and to take a pain pill. It is amazing what a good night's sleep did for everyone.

It is good to be home.

Wrapping up day 3

Well we finally moved out of ICU. We are in room G332. Nice but not as big as the ICU Room. With everything we have and Holly and I it is a little cramped. MK made the move fine. She has been having an upset stomach, mainly because of the medications and the fact that she is not eating very much. Right after we got to the new room, MK threw up, the good news was it did not hurt her doing so. Holly and I are going to push the food and drink from now on.

Holly is taking a nap while I watch MK.

That is about it for day 3. I will add some posts tomorrow.

Day 3

Day 3 is going well. Mk's Fever has gone down and the pain is under control with perkacet (sp). The best news is the only thing left attached to her is the IV line. Mk was just able to get up and walk (with assistance) to the toilet in the bathroom. She is now setting up in a chair in her room and texting her friends.

I am sure she will have her ups and downs but we are very happy with her progress.

We are still waiting for a normal room, but I must admit the ICU room is wonderful.

Ryan stopped by again this morning before heading back to college.

More to follow later on this post.

Day 2

MK had what would be an expected evening. She made sure the clocks were all working perfectly. She knew exactly when she was due her next pain medication and made sure she got it on time.

Holly was able to get a couple of hours of sleep. I have not been as lucky, either doctors came in or I just could not fall asleep.

This morning doctors, interns, nurses, and more doctors. They just keep coming. They removed the bandage from the incision and it all looks good. She is moving better. Holly just put her hair in side pony tails, that seems to help.

Later today they will move her out of ICU into a normal room. They plan on her getting up and moving a little bit. Once she can get up she will have the cath removed. She never felt comfortable with the bed pan so the cath was the best bet.

Other than that everyone is doing well. I will add to this post later today

It took me a while but here is the final update for day 2. It is now 1 am on day 3.

MK is still in ICU, at first is was because they did not have a room for her, which turns out to be a good thing. After a good 3 hours of sleep she woke up in a lot of pain and a fever. The took some blood and urine and are running tests. It is amazing after having such a good afternoon, that they pain came back so strong. The good news is they have it under control now. Oh I forgot to mention some of the pain medication she was taking caused her to itch all over. So we have added another item that MK is allergic to. Right now she is awake and talking to Holly. On my next post I hope to have the results of the tests they ran on her blood and urine. Please excuse any typos or other errors, writing is not one of my strengths and when I am tired I am sure I will make many mistakes. Ryan did stop by tonight. I am sorry he saw her not at her best. Next update soon.

ICU - Day of Surgery

MK was moved to ICU around 12:30. The ICU at Emory is very new. There is a little room off each ICU room where we can stay and the chairs make into beds. Sort of. MK has been getting some drugs every two hours and a Valium about every four hours. Pain management is the main thing right now. Currently she does not like moving her head much because of the pain. The evening nurses checked in around 7:30 tonight. Our nurse seems very sharp. Mk liked her.

Dr. Barrow stopped by earlier and said everything went as planned today. He said she would most likely move out of ICU sometime tomorrow. Not sure if I like that since MK is getting such great care here. The plan is for her also to get up tomorrow.

Hopefully the pain will be much less tomorrow. Not sure if Holly and I will get a lot of sleep tonight. Holly is giving it a try now, since we have been up since 3:30 AM.

Next post - tomorrow.

Day of Surgery

Everyone was up at the crack of dawn since we had to be at the hospital at 5:30 AM. It is amazing how fast you can get some place in Atlanta when there is no traffic.

We arrive at the waiting room around 5:15 and were called back to the prep area around 5:50. MK was very nervous all morning. It was the first time she was openingly emotional. Who could blame her. Her biggest worry was she wanted to make sure she was completely out before they did anything. Once the IV was in and they started giving her happy juice she alternated between laughing and crying.

As a parent there is nothing worse then seeing your child in pain (emotional or physical). Holly is the rock this morning. I try to cut some jokes to keep it light. I kidded MK about the cost of all the kleenex.

Well they rolled her back at around 7:20. They still had not shaved the area of MK's head yet.

We now wait in the waiting room!

Appointment with Dr. Barrow - March 10th

Wednesday March 10th at 9 AM, we had our first appointment with Dr. Barrow. Prior to our appointment we had heard nothing but positive feedback from everyone who had him as a surgeon.

A nurse came in and took MK's vitals. I commented on how I wished my blood pressure was as good as MK's. I guess youth, exercise and weight gave her a huge advantage over me. Then Dr. Barrow's main nurse came in and proceeded to get MK's history and symptoms. Other then the headaches it was tough for MK to identify all the symptoms because either she does not have that many compared to most Chiari Malformation patients, or they may have just come on so slow that she does not realize they are a symptom. MK explained about her headaches, some dizziness every now and then, stiffness in her neck and I added that she seemed to be tired a lot, but I was not sure if that was a symptom or just being a teenager. After all the information was taken by the nurse we waited for Dr. Barrow.

Once Dr. Barrow came in, he confirmed everything we had heard about him. He was very personable and spent most of the time talking to MK, which made her feel good. He did a great job explaining what Chiari Malformation was while he was drawing a picture of it. He explained to us that MK would need decompression surgery to relieve the pressure and to resolve the syrinx in her spine. He walked us through what he would do during surgery. He would remove a small piece of the base of the skull to provide more room for the brain. He would also remove the back half of the C1 vertebrae, also to make more room. The Dura would then be opened and a Dura patch would be installed. All of these procedures are to increase the space for the brain and relive the pressure at the foramen magnum. He said he would not do a shunt at the location of the syrinx, since the decompression surgery will most likely resolve the syrinx over time. He said if needed we could always do that at a later date, but he did not want to do it if it was not needed. Dr. Barrow said that a small strip of hair would need to be removed on the neck and base of MK's skull. He said that since MK's hair was long that after surgey her hair would cover the incision area and not be visable unless she wanted to show it to people. I think that was a big relief to MK and Holly. Since I am losing my hair any way I was prepared to get the same hair cut MK got, but it looks like I will be able to keep what little I have.

I was glad to hear him walk us through how the surgery would be performed. Based on some research I had done, Dr. Barrow and the research matched. Here is a study I had found. Study

Dr. Barrow did say that the surgery was not an emergency, but MK did need the surgery before her condition got worse. Dr. Barrow stated that most of his patients say the worst part of the whole process is waiting for the surgery and as a result most want to proceed right away. I agree waiting stinks. Based on that, we decided to have the surgery on March 30th. We choose that date since it was the week before MK's spring break. Dr. Barrow was optimistic that MK would be able to go back to school after spring break. I hope he is right, but it will not be a big deal if she has to be out an extra week.

Dr. Barrow did say that normally when he does neuro-surgery on patients there is not much pain after the surgery, however since the entry point on MK's surgery is on the back of the neck he said that would not be the case. He said that since there are a lot of muscles on the back of the neck that is where the recovery pain would come from. This is one of the main reasons they keep people in the hospital for about 3 to 5 days so they can manage the pain in addition to make sure everything is ok. I know this is one of MK's major concerns.

Dr. Barrow stated that as far as neuro-surgery goes this is not that complicated compared to other procedures. While I was glad to hear this, it is still major surgery and we are still apprehensive as any family would be.

So Pre-Op is scheduled for Monday March 29th and surgery is scheduled for March 30th. We will have to be at the hospital at 5:30 am. Based on other peoples experience I am guessing surgery will start around 8 AM and will be completed around 11 to Noon. Here is a link to a wonderful blog and it gave a time line for her procedure.

That is it for now. Next post will be after the surgery

How It all Started

During the month of February 2010 my daughter, who I will call MK, told us she was having headaches behind her left eye. Since she is not a complainer, my wife Holly and I decided to go ahead and set up an appointment with an ophthalmologist to have her eyes checked out.

Other then her eyes being a little dry, the ophthalmologist did not see anything so he recommended that we see a neurologist just to be on the safe side. On February 11 we met with Dr. Kennedy. On that day he did not see any symptoms or issues either, but once again to be on the safe side he decided to order a MRI of her brain just to make sure.

MK had her MRI on Saturday February 20th 2010. During the MRI the technician must have seen something because they did a second MRI of the neck. Well that Monday morning I received a call at work from Dr. Kennedy's office asking that we come in right away. You can imagine that I was pretty scared not knowing what the problem may be. I called Holly at work and told her and then proceeded to go to MK's school and check her out.

Once we were all at Dr. Kennedy's office he did some more reflex tests and asked MK a lot of questions. He told us that MK had a Chiari malformation with part of her cerebellar tonsils below the foramen magum and a syrinx in her spine.

Having never heard of Chiari Malformation or Syrinx, Dr. Kennedy took time to explain what this was and let us know that if this was not taken care of it could cause some neuro problems later in life. He recommend we go see a Neuro-surgeon and provided us a list of possible surgeons. He was almost certain that surgery would be needed. He also recommended that MK stop her aerobics until after we met with the Neuro-surgeon. Dr. Kennedy did say that we were lucky that this has been caught early before any serious symptoms developed.

Numb and In Shock

After leaving the office all of us where in shock. MK decided to go back to school, Holly decided to stay home so that she would be there when MK got home from school, and after spending some time on the Internet reading about Chiari Malformation and Syrinx, I decided to go back to work. Many tears where cried that day by all.

Day Two After Diagnosis

I am sure nobody in our household slept very much last night. Because it was so hard to discuss this without getting emotional, email became the best way for me to communicate with my family and friends.

The second day after diagnosis became the day that Holly and I started researching the best Neuro-Surgeons in the Atlanta Area. This challenge was complicated since MK was 16, so not all Neuro-Surgeons might take the case.

After doing extensive research (as much as one can do in a day) we decided on Dr. Barrow of Emory University Hospital. I faxed the MRI report to his office on February 23rd and then we had to wait until he was in his office and could review the report on Wednesday. I can't tell you how agonizing the waiting was. The following day I was able to confirm with his office that he was going to take the case and our first appointment was scheduled for March 10th. Yes more waiting, the next two weeks were very tough.

With two weeks before our appointment, we all spent time researching everything from the doctor, to the hospital, to how the surgery should be performed. During this time we found out that some of our acquaintances had Dr. Barrow as their doctor. Everyone had great things to say about him. Dr. Daniel L. Barrow, MD is the Professor and Chairman Department of Neurosurgery and also the Chief of the Neurosurgery Service at Emory University Hospital. Here is a Link on Dr. Barrow


The day before the appointment, I was glad and concerned at the same time. I was glad we were moving forward, and concerned on what Dr. Barrow might say.

First Post

To all prospective readers, this is the first time I have ever blogged, so please be patient while I try to get this site up and running.

The main purpose of the blog is to keep my family and friends up to date and then maybe provide a little insight to others who might be going through the same thing.

Check back soon for more detail.