Chiari Update

SO much has happened, where to even begin?

After our last appointment with our first Neurosurgeon we were told that we would monitor Camden, keep track of his symptoms, and meet again in 3 months.
We were shooting for making it to the age of 3 years old before Camden would have his surgery.
Initially this felt like a good and reasonable plan.

As we began to keep track of symptoms I began to feel worse about the idea of waiting a year for surgery. After keeping track for a couple weeks we established that the longest Camden was going between days of bad symptoms was 3 days. We also began to see new symptoms popping up.

Chiari is a progressive problem, and there are a lot of things that it can cause that are permanent. Without getting into too many of the complicated details I will give two examples. The longer there is pressure on the tissue of the brain the more damage can occur. Brain damage is not reversible, once it's there--it's there. Surgery won't take it away. Some with chiaris see regression in developmental areas. Chiaris also block the flow of CSF and it can cause a syrinx or a cyst in the spine. Once you have a syrinx, you have a syrinx. Surgery does not guarantee it will go away, and a syrinx carries the risk of permanent spinal damage and paralyzation.

It's hard to navigate because brain surgery is brain surgery and carries significant risk. Not all people with a chiari malformation end up developing symptoms, and some never progress. So it is impossible to know what route Camden's would take. However, I began to feel like there was/is more occurring than Garth and I can see from our perspective. I feel that things are progressing for Camden, and that a year would just not be an appropriate waiting period for Camden's situation.

I began reaching out to those I know who have children with Chiaris and talking about ages of surgeries, recovery, etc. I started to feel in my mind like it was going to come for Camden probably in October.

So we met with our second option of a Neurosurgeon for the second opinion on Thursday. We hadn't really expected to like him, as we did really like our first surgeon. Both come highly recommended and both have performed surgery for chiari's hundreds of times. Both are also pediatric neurosurgeons, which is what we wanted.

We actually really, really liked him. We were warned that some feel he is a little blunt or even a little arrogant, but he just had a dry sense of humor that really reminded me of my dad lol.
He explained to us that the images of chiari's alone do not define the need for surgery or not.

Some people have TERRIBLE herniations and no symptoms, others have symptoms and mild herniations. Statistically speaking, usually those who have symptoms have a restricted or blocked flow of CSF which warrants a need for surgery.
He explained that it is all about the story you tell. So he asked Camden's story.

Camden's story and issues basically begin at three months of age and he listened and wrote down all we said. He agreed that surgery for Camden is reasonable and would likely help.
He did not feel that there was a need to wait until he's three.
When you are three the veins in your dura (brain sack) become more organized and it's easier to avoid a brain bleed when cutting the dura. However, if you do cut a vein it is fixable--simply becomes a longer surgery. So the surgeon explained its not a reason to put off relief for Camden, and it's also not a common thing to happen.

However, this surgeon would like to do a different surgery than the first. Though he's willing to do either one-- it is our choice.

The standard "full blown" surgery for chiari goes like this:

Removal of piece of skull.
removal of portion of spine.
cut into and opening of the dura
add a patch to the dura (usually a skin graft from tissue higher up on the skull)
and sometimes cauterizing or removing the tonsils of the brain.

This was the surgery the first surgeon recommended. It has the highest success rate for removing the symptoms and lowest risk of repeat surgery-- however, it has the highest risk and the highest rate of complications post-op.

The lesser surgery is the one the surgeon suggested he would prefer to do. He also clarified he will never cauterize or remove any part of the brain, which I really liked.

This "lesser" (if you can call brain surgery lesser) surgery involves:
removal of piece of skull
removal of a portion of the spine
and then instead of fully opening the dura he adds slits to the outer most layer of the dura so the dura itself can expand.

He has performed this surgery many times, and only once has he had a repeat surgery after, but for a different reason.
The issue is it is less "thorough" we may not see a full reduction of Camden's symptoms. However, usually the risk that comes with opening the dura is warranted when there is obvious neurological damage occurring. Camden doesn't show any developmental delays or issues with balance or anything like that so he feels he would do best with a minimal risk surgery to alleviate his debilitating pain.
The issue here is Camden is two, we are fully aware we cannot even know the full scope of his symptoms, because he lacks the ability to communicate all he is feeling.

However, one of the possible side effects of opening the dura is chronic head-aches and vomiting-- a symptom we are trying to take away.

So that gave us a lot to think about. The Dr. has agreed to do whatever surgery we feel most comfortable with. He assured us that he would not recommend the surgery if he didn't think it would help Camden because, again, it is a major major surgery.

Luckily for us our pediatrician is awesome. His son is a neurosurgeon in new york and works with a chiari specialist. He has offered to send all of the opinions and images to the specialist for us so he can help us decide which surgery he recommends for Camden personally, as well as from the perspective of someone who knows a lot about chiari.
We are so so grateful for that.


So as of now, surgery is on the books officially. October 12th is the date, just need to pick the type of surgery in the meantime.

We are terrified, and hopeful, and grateful all at the same time.
Right now life feels a little hectic and it seems to always feel wonderful and terrible all at once all the time. We hope we can continue to feel guided and comforted as we struggle to make the right choices for our little man, and we are grateful for all the support and prayers that have been going out to us and to him!!