After 5 very long weeks of waiting we had our visit with Dr. Brockmeyer, the Neurosurgeon at Primary's.  He showed us Brinley's image and told us the basics, which we already knew, that she does in fact have Chiari 1 Malformation.  He was not at all surprised that she is having the symptoms that she is having, and while I was over prepared to plead her case to him, it was unnecessary. He said that her brain is acting like a cork and blocking her spinal canal so the flow of CSF fluid is interrupted, causing her symptoms.  He stated that based on her image and her symptoms, he strongly recommends decompression surgery and was very confident that it would be helpful to her.  We felt very comfortable with him as her surgeon.  We know he has done hundreds of these surgeries and is competent.  He's not the kind of guy you want to give a big hug to afterwards, and we know long-term we may have issues, but he knows what he is talking about and that is more important to us right now.  I felt a little rushed and had to interrupt several times as to not be rushed through and leave more confused than we came.   I was expecting that though, so I didn't mind.  He was extremely confident, and that really put us at ease with the decision to do the surgery.  He did, however, give us the choice between two surgeries.  One is a bony decompression, where part of the skull is removed to make more room for the brain.  It has a fairly high success rate, however Brinley's herniation is a large one, so he said we would have a better chance of alleviating her symptoms with the decompression with duraplasty.  It has more risks involved, but also has a higher success rate, and a less chance of having to re-do a brain surgery, which we don't want.  It involves removing the part of the skull to make more room, then opening up the dura, a membrane surrounding the brain, shrinking the cerebellar tonsils, and patching the dura with another material to make more room for spinal flow.  It is more involvement with the brain, however it would be devastating if we did the surgery only for it to not be successful.  We scheduled the surgery for Feb. 20th and have a week and a half to decide.

He also wants to take a look at her spine to make sure she doesn't have a syrinx, a pocket of spinal fluid built up in her spinal canal.  He will also check for tethered cord syndrome and make sure she does not have a leak where she received dozens of lumbar punctures during her cancer treatment.  If she does it would have to be repaired as well or it could potentially cause the same problem again.  We are hoping it is just a typical chiari 1 malformation and nothing else is involved.  That MRI is scheduled for Tuesday.

David and I both felt good about this during our meeting.  Although I have been having a difficult time when I think too much about it, I still feel that we felt good about it because it is right.  We still have decisions to make about the surgery, but feel we will be guided to what is right for Brinley.  We could not do this without that guidance and peace of mind.  I know that the Lord knows everything, and without being able to turn to someone who knows all to help us we would be lost right now.  My faith is stronger than ever.  We are in a good place spiritually and that is a huge blessing.

The next day I had anxiety about the decision to schedule the surgery.  A good friend with similar headaches as Brinley has told me if she had the choice to relieve her pain without the extra decisions of a family needing her, school she would miss, financial ramifications, etc.; if she could think of only HER she would do it without a doubt.  That helped so much.  It's so difficult to make a decision like that for someone else, especially your own child, but I imagined Brinley as an adult, trying to make the decision to have a surgery that her parents were too afraid to get her, and having a family to figure out, finances to work through, a life to put on hold, and I realized that we would be doing a great disservice to her by not trying to help her now, when she doesn't have all those things to deal with.  Thank you for following a prompting to tell me that.  You know who you are.

Brinley has a mixture of feelings right now.  She is so excited at the thought of being pain free and is literally counting down the days to surgery.  She knows it will be painful and hard, but she is ready for it.  She is nervous and asks a lot of questions.  She asked me tonight if you can die from surgery.  So I know she is nervous and thinking about it.  She is so, so brave.

We will be fasting on Sunday, February 17th for Brinley and would welcome anyone who would be willing to join us.  We feel at peace, however there are a lot of things that can happen and a lot of stress involved right now for all of us.  Jade is very worried about her little sister, and said that she liked it better when she had cancer because it was easier.  I think her being older and understanding things better has put some extra anxiety on her that she didn't experience during Brinley's cancer treatment.  Taylor is very quiet about it, but Taylor doesn't share her feelings as easily and I know she is worried.  She tries not to think about it.

Brain surgery sounds big to me.  Too big to think about, so I keep it factual for now.  As it nears I know my nerves will get the best of me.  I pray with all my heart that this will all be okay, and that Brinley can live a pain-free life.  The NS said that it is amazing when these kids realize what life is like without pain.  As David and I look back, we realize she has been in pain for many years of her life.  We just didn't know this was contributing to it.  It makes us both sad, that she is so familiar with pain.

Thank you to those of you who have asked and cared so much.  Thank you to those of you who have looked into my eyes and said it will be fine.  I really helps, even if it's just words.   I truly hate that we are asking for prayers again for Brinley, it feels so redundant.  Yet she needs them, so we ask for them.


Stacy said...

Thanks for the update. Sounds so overwhelming and difficult. What is the recovery time like? Love you guys and I wish this wasn't happening to you all!

Michelle said...

i'm not saying my situation is the same as yours, but i too was faced with brain surgery suddenly in 2008. i had a shunt placed and had revision surgeries in 2009, 2010, and in 2011 had a further brain surgery with a week spent in Neurosurgical ICU. i was a month shy of 22 and could understand things more easily, but i started getting chronic migraines when i was just 5 years old (due to an unrelated genetic condition). i saw what my parents went through and it's hard to see your kid go through this, but keep focusing on the benefits and trust that if God kept your girl alive through cancer, this is just a relatively small bump (even though it really isn't small at all, you've been through so much already).

praying for you guys!

Just SO said...

I am a friend of M-Cat and took pictures at the Cancer walk last year. Praying hard from here that all will be well with Brinley and that this surgery will bring her relief from pain.