Only the best can touch my brain

Why do we travel across the country to have brain surgery?

I have chiari malformation and a list of comorbid conditions such as Ehlers Danlos, intracranial hypertension, mast cell activation disorder, etc.  If I had ONE of these issues, then maybe I wouldn't have to travel for treatment, maybe I could find help here at home. But, each of these conditions feed on each other. One affects the other.  A surgeon may tell me that he can fix my brain, correct the chiari. But, will he understand that having EDS means that if he removes the tiniest bit too much bone that I may develop severe instability between my skull and upper vertebrae and that it may be as deadly or more so than the chiari? Will he understand that I may react badly to all of the normal medications and anesthesia because of the mast cell issues?  Will he be familiar with the fact that we are more prone to have clotting disorders, more likely to stroke with these surgeries? I could go on and on but I won't.  Lets just say that no, the majority of neurosurgeons do not see or accept the entire picture.  But you have to if you want to live.  There are a small handful of surgeons who have put time, hours, years into studying us, learning how to help us.  And some of us are only willing to trust our lives to them.

I found a surgeon who understands me and what I live with. Twelve days ago he decompressed me, cut out the herniated part of brain, made room in my skull. Then he opened the top of my head and inserted a shunt. Then he closed off the failed shunt in my lower back. Twelve days. And I am here to write about it, tell you about it, advocate for all of you like me. I am already healing, thinking more clearly, moving better. Twelve days after a major ten hour brain surgery, I am home and living again. I believe that its because I traveled to one of those surgeons. I traveled from Kentucky to New York to regain my life. And I am here now to tell you all about it.

A New Surgery, a New Me

I am not very good at sharing my feelings, my emotions, but for you all I will try. I’m going to try and give an unedited view of my new life.

 

Healing. It seems like such a simple word. Nerves regenerate, tissue grows, and symptoms ease.  But, it’s not as easy as all of that. There is so much more to it, aspects that we don’t know about, sides that we don’t expect.  Healing, especially when a chronic disease is involved, is a multidimensional process. 

I have been sick in some way as long as I remember. I was so broken that I didn’t even know I was. My pain, my aches, my difficulties were my normal.  After learning that I was sick, that my body was broken, I began the fight for healing.  I fought hard for a long time. I used every resource, any medical knowledge I had, and any strings that I could pull.   And still it was a heartbreaking and difficult journey.

Last week I finally had the “big” surgery, the major one that I have waited so long for. Last week I had brain surgery. I had some pieces reshaped, some cut out, some added. My head is now different. It is shaped different, it has spare parts.  And it is bald.  I have had some adjustments to make

First, I watch every day to see what is new and different. My new normal amazes me. I just can’t get past how this feels. I’m not sick, my head is better, the physical healing has begun.  It’s so much to wrap our mind around. There are the ecstatic moments when I realize that I have no pain. There are the somber moments when I see that some other aspect hasn’t healed yet.  This is an emotional roller coaster.

And then comes the support, and sometimes lack of. I felt like people weren’t listening, didn’t believe that I was sick. I have an invisible illness. On the outside I looked normal. And then I had surgery. I came out with three large cuts into my head, down my neck and two large ones across my abdomen. My invisible illness could finally be seen. This is the time to teach and to fight and to show the world what we live with. I am tired, recovering, but I have to use this time well.  Suddenly, I have friends and family calling, texting, sending me messages and well wishes. I’m hearing from everyone that I know, people that I’ve not heard from in so long. This is a new and unexpected turn in everything.

And now I look different, too. I wasn’t a very vain woman, not especially pretty. But, I am a woman. I went to sleep looking like me, with long red curls that everyone touched and talked about. I woke up with no hair. None. It’s OK. It’s worth the loss for my health.  But, I see myself differently and I wonder how others see me. I look in a mirror and that woman isn’t me. I walk through a store and am self-conscious. I want to dress up and go celebrate but what do I do with my head? It’s such a silly thing but its one thing that we deal with, still.

And I’m tired. Just tired. I want to jump in and be a mother again, take care of my family. I want to be a wife, wanted and important. I want people to see me as they did before but I know they won’t. That’s part of this.  I am not the same person. Why would they see me as her?

And, for whatever reason, I want to share my store, the hard and the easy parts. I want my friends, my loves, others like me to know that they aren’t alone. I want people to know that there are more of us that they can reach out to, those of us that can help, lend a shoulder and just understand.  In that way, maybe I can make an even greater difference for someone else. Maybe I can bring something good from my story.

An overdue update...

I've not posted in quite a while! It doesn't mean that I'm well or healed, that this journey is over.  It just means that life has been busy, pulling me other directions.  I find a lot of things to keep me busy.  I've been putting a lot of time into my daughter who is very sick.  There is always something else to be done, someone else needing us.

Where are we on this journey?  I've not had any more procedures, any more visits out of state, since last summer.  I am very much due a follow up with a neurosurgeon, though.  So many things have been worked on, some are better.  But, so many more are falling apart.
Currently, I believe that my biggest problems are in my neck and head.  I have instability in my upper vertebra, between c1 and c2 (also called atlantoaxial instability).  These are the vertebra that support the skull and the motion when it turns.  Like so much of our EDS bodies, our vertebra slip apart and/or overextend.  When mine was last measured, there had been some significant change.  Now, I am becoming much more symptomatic.  So, what are the symptoms of upper instability?  They are vertigo, dizziness,  neck pain, balance problems, blurred vision, pain in shoulders, poor gait when walking, and more.  I have all of these thing and the more that I mention. :D 
Now, to accompany my instability, I have progressive chiari and intracranial hypertension symptoms.  My headaches have increased in frequency and severity.  I have much more pain in the back of my neck and head.  I have high pressure when I wake every morning along with difficulty with my vision.  I have developed spots in my peripheral vision.  I have near constant nausea that is caused by neurological damage.  I have tremors and occasional contractions in my hands.  I have, I have, I have....

I still need to see a neurosurgeon but there are other things that come first for me right now.  I am thankful that I'm not confined to a bed, that I can still enjoy my family.  I know that there are bad days, hard ones, sick days, dark days.  But, you'd be surprised how tough we Zebras can be.