Surgery Date!

Hey guys!

It's been a while since I last posted.  Here's a little update on how things are going:

I'm feeling a lot better!  I still get headaches and pain/stiffness in my neck, but it has been very manageable.  If I put ice on wherever it hurts and take some ibuprofen, it subsides.  I still get the pins and needles sensation and numbness in my hand every once in a while, but other than that I haven't had any of those other crazy symptoms in a long time.  I attribute this to the thoughts and prayers of all my awesome family and friends!  I was so blessed to be in good health to enjoy the holiday season!  Here are a few pics:

 I have been enjoying lots of "baby therapy" with my nephew Lucca Clayson (left) and my niece Grace Lerdahl (right).

On December 22nd we got a call from a doctor from the neurological offices at Stanford (CA) who had looked at my images that Justin had sent him.  Justin's dad had a connection there and had helped us get in touch with him.  We were so surprised and grateful that the doctor himself called us!  He spent about 20 minutes on the phone with us answering our questions about the condition, treatment options, future pregnancies, and recovery if surgery is needed.  He asked all about my symptoms.  He said that from looking at my MRI, my cerebellar tonsils were about 17 mm below where it should be, which is pretty severe.  Most people with a Chiari Malformation have their tonsils at about 5-10 mm below where they should be.  He said that based on my symptoms, and how severe my CM is, he would highly recommend surgery.  He explained how he goes about surgeries like mine.  There are 3 specific things that he does, which I won't describe in detail right now, but basically he does everything he can to alleviate the pressure on the brain. He said he would be more than happy to perform the surgery for us, but encouraged us to find someone in Utah so we wouldn't need to travel.  We were relieved to hear this.  We told him about our appointment with Dr. Schmidt the next day.  He looked him up while we were still on the phone and he said that he looked like a great doctor.

On December 23, we met with neurosurgeon Dr. Richard Schmidt at the University of Utah hospital.  We were lucky that through my dad's connections we were able to get an appointment that quickly. (Thanks Dad!!!)  I was really nervous about the appointment.  But we prayed a lot that we would know if he was the right doctor.  Well we got a great feeling about this guy!  He really knows his stuff.  He performs lots and lots of Chiari surgeries, and has lots of patients come to him to fix the mistakes other surgeons have made.  So he knows what to look out for.

 He showed us my Cine MRI, which shows the flow of CSF (cerebrospinal fluid) in the brain.  We could see that, like Dr. Smith from Provo had said, the fluid was blocked from the back side of the brain and was all rushing through the front.  He also pointed out that my cerebellar tonsils were squished down really far (17-18 mm), calling my case one "in the big leagues."  We talked about my symptoms and the way the condition had been affecting my daily functioning.  He said that since it is a structural problem (the bottom of my skull is too small and the tonsils are squished in there), it needs a structural solution- surgery.  Medications for pain could help, but the problem would always be there.

He told us his specific surgery techniques, and they were EXACTLY what the doctor from Stanford had said!  It was very reassuring to hear two respected professionals who are experts in CMs have the same opinion on the surgery.  As we have researched, there are a lot of differing opinions on the specifics of the surgery among doctors in the country.

The surgery is called posterior fossa decompression.  Basically, they go in and remove part of the bone at the back of the skull and spine to relieve pressure on the brain stem and spinal cord and restore the normal flow of CSF.  They sew in a patch to expand the area and keep everything in place.  The procedure takes about 6 hours, and you stay in the hospital for 3-5 days.  Recovery is about a month long, and is quite painful because during the surgery they make an incision in the back of the neck to get to the skull.  While it's healing, the muscles hanging on it- back, neck, arms, cause a lot of pain.  It takes about a month for the pain to completely subside.  You manage the pain with medication, heat and ice, and particular neck stretches to regain full range of motion. 


Justin and I felt really good about Dr. Schmidt, so we scheduled a surgery date.  The first day they had available was..... January 23rd, none other than Justin's birthday!  Too bad there won't be a ton of celebrating going on, but hopefully we will always look back on that day as the beginning of the end of all this craziness. 

We are so relieved and grateful to have found this great doctor and to be moving forward.  I am nervous about the surgery.  Not so much the actual surgery, but the pain I'll wake up to.  But I know I'll be under the care of great doctors, nurses, and of course my husband and family.  And getting rid of the symptoms will be worth it!

I want to thank everyone who has reached out to me!  All of your kind comments and prayers have meant so much!  I am sorry I haven't responded to everyone personally, but please know of my gratitude.  I am also grateful for the people who have recommended doctors- we considered all of them very carefully.  I count myself very blessed to have such a great support system. 

We would like to invite anyone who is interested to join me and my family in a special fast on January 18, the Sunday before my surgery.  For anyone who isn't familiar with fasting, it's going without food and drink voluntarily for a period of time- usually 2 meals.  Fasting combined with prayer is a really powerful time to focus on your relationship with God and ask for certain blessings. I have had some really amazing experiences with it, myself, and I know it will help prepare me for the surgery. 

Thanks again everyone!  I love you all very much!