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