Camden was diagnosed with Chiari Malformation type 1 not too long ago. The first two weeks were spent just processing. Trying to figure out how I felt, what was going on, and trying to process all my emotions. There was a lot of crying and a lot of keeping to myself. Mostly I think there was just a lot of surprise. I hadn't been worried about Camden's MRI. Camden had so much going on the MRI was kind of a random test in the midst of several other random tests. When the doctor began to explain the abnormality within Camden's brain I was still shocked.
Anyways, I feel like for the most part I am past all the very surface level emotions now. I have been able to find my stable ground which includes the elements of gratitude needed to navigate everyday life. I've come to terms with the fact that there are much worse things happening to people everyday and I'm not being picked on. I have established that I will take this a day at a time and I will eventually be guided. I have accepted that there is a definite plan, and I'm working on being okay with the fact that I'm just not currently in the know for what that particular plan is.
My knowledge of Chiari has grown immensely since the last time I wrote. Once I processed and stored the emotions I could delve into the facts and figures. That part has been really hard and yet really good. Researching feels simultaneously like self torture as well as taking control again. I've been added to two Chiari groups on facebook, one specifically for pediatric chiari. Initially it completely depressed me to be added and begin reading people's stories. It hit me hard that this a very real issue, and very much a life-long thing. Even with surgery there are life-long repercussions, and monitoring. Without surgery there is possible life long issues and definite life long monitoring. It still isn't easy to read adults describe the symptoms and feelings my 1 year old can't yet put into words. I didn't expect to see that there are Chiari walks and races for awareness, chiari groups all over, chiari centers, etc etc. For about two days I struggled with the idea that this wasn't something I would be able to fix and walk away from. But then I began my research.
I have spent countless days reading medical journals, published research and studies, and different personal accounts and stories. I have read entire blogs and studied more medical statistics than is probably normal for a stay at home mom. I go out and I do normal things, but it is always there in my head--literally always. I know I'm a bit quieter, and truthfully I am not depressed-- I am quite hopeful, but I have so much to constantly think about it just never goes away.
Let me give you a slight sample of the medical rabbit hole I have ventured into:
I have learned that there is a huge division amongst neuro-surgeons on chiari and recommended treatment. A recent survey of 250 neuro surgeons found a huge division in their choices they would make for 3 different mock scenarios.
They disagree on what warrants the need for surgery.
More and more research points to the fact that the size of the herniation (how far the tonsils of the brain come down into the spinal cord) does NOT adequately determine the need for surgery. Symptoms must be taken into consideration. More studies have been done and cine MRI's have become a regular tool in Chiari patient's care. These are special MRI's that are a series of images meant to actually measure the flow of the CSF. (Cerebral spinal fluid). Most patients who have blocked or limited flow are symptomatic. Lack of flow is a serious issue with serious repercussions, many of them doing permanent damage. Camden is symptomatic. We do not yet know if his flow is ever blocked or restricted beyond the one image we have.
At Camden's age he has to be put under for every MRI he has. He is about to have his second one. Garth and I have been pushing for the NS to do both the spinal MRI and Cine MRI at the same time. She doesn't feel there's enough reason to do a cine MRI yet, but we don't want him to be put under for a third time when they could get all the info in one sweep.
Plus we have a second opinion scheduled and from what we've learned most NS want the cine mri with everything else to get the full picture. It is nice to be able to feel educated enough to be an advocate for my son, but frustrating to experience resistance and hard to know when to keep pushing.
Camden's spinal MRI will look for a tethered cord and/or a syrinx (a cyst in the spinal cord). Either one would likely mean surgery. The risks of a syrinx are high, the possibility of becoming paralyzed is just one of them. A syrinx can be developed at any time with out without symptoms in Chiari patients. It is the constant risk of not doing surgery. The longer there is pressure on cerebral tissue the more permanent damage can be done to it. The more permanent symptoms that are irreversible can pop up.
It is hard to not lean into surgery so badly because the fear of the unknown/uncontrolled.
Surgery is not without risk. There are SO many types of surgeries.
Removal of part of the skull and spine are the general standard procedure, opening the dura (sack around brain) is the tricky part.
Opening the dura involves the largest increased risk, however, it involves the highest rate of success and lowest rate or repeat surgery.
Removing the bone causes a ton of pain, a large incision, and the possibility of the brain slumping in the skull because too much was removed. Some doctors advocate only opening the dura and cauterizing the lower end of the tonsils. This sounds terrible, but has evidence to back it.
Chiari patients have abnormal tonsil tissue (again this is part of the brain) and they don't know if its abnormal due to having been damaged by the chiari or if it is abnormal because they are chiari. Some doctors argue the tonsils don't even function in chiari patients. (The actual purpose of the tonsils is still relatively unkown).
Duraplasty (The surgery where they open the brain sack) involves a patch being added to the dura. This has risk of a leak. Which is obviously a serious risk. Doctors disagree about the type of patch that should be used. Skin graft from patient, cadaver, cow heart (this is rare now) etc.
Anytime the dura is opened the system resets. Patients take a long time to recover, all senses are heightened, and exhaustion lasts for a long time post-op. It is a MAJOR surgery.
Surgery is terrifying and going to be immensely painful for Camden. I don't know how to choose that option.
The option of waiting is hard as well. Chronic pain for Camden's life, symptoms Camden can't even tell me he's experiencing--and may never know to tell me because he has had them since birth and knows no different. Vomiting due to head pain. Dizziness. Numbness. Possible neurological damage. Possible spinal damage. Of course it is also possible to have no progression and just minimal head aches forever. *this option is hard for me to believe being as Camden has been symptomatic his whole life. (swallowing issues, reflux, benign myoclonic movements, head pain, random vomiting, struggle eating solid foods initially, temporary developmental delay -- these are all things Camden has experienced that fall under the scope of Chiari symptoms).
Some doctors advocate surgery as a last resort. Others do not believe Chiari is a life-long disease. They believe it is simply an anatomical abnormality that can be corrected. I tend to agree that it makes logical sense that the sooner it is corrected the better off people may possibly be. The longer there is pressure left on the brain the more damage there is to the tissue. However, surgery is not a cure and has about an 80% success rate, which is a relative statistic because success means different things to different patients.
I've come to realize I will have to make not only the choice about surgery, but also what kind of surgery, what doctor do I trust to perform it? Needless to say I feel so much pressure. To know things I simply cannot know. To understand things doctors themselves don't even yet understand.
Which should explain to all of you why I am so quiet all the time. So so so much thinking is going on in my brain right now.
I don't even know how to spill this to people and explain the feelings I am feeling all at once 24/7. I don't cry often anymore, because It just simply isn't productive.
I'm determined to be educated enough to feel confident when I feel guided.
I recently had a very special person look me in the eye and tell me she knew I would make the right decision, and that has meant the world to me. More tests and more time will hopefully select for us the seemingly most beneficial path, but I pray when the time comes I feel at least 90% positive of my choice.
Again, I KNOW there is a plan for Camden. There are just some plans I don't know how well I will be able to handle.
We shall see.
Hopefully this explains a little more of what's going on in our busy, hectic brains over here. Be patient with us!
