Friday, September 21, 2012

MRI #3 :(

This was probably my least favorite one so far!  I was called in 30 minutes late, about 1 hour before I needed to pick Logan up from school.  The back of my head was hurting before we were even halfway through, this happened with the first one too, then it took them three tries to find a vein for the contrast ink.  My veins are normally difficult, but three?!  Needless to say I was ready for it to be over! 
A very special thank you to our friend and neighbor, Jessica, who got Logan from school for me. I think Logan was pretty excited about riding home with her and the girls, but I was glad he was happy to see me when I intercepted him in the parking lot. 
A Friday lunch trip to the playground at Sonic was definitely in order for both of us, and another bonus when we saw more friends there :)

Thursday, September 20, 2012

Research and Resources..

I mentioned in the previous post that I started my research as soon as my doctor told me I had a malformation.  One very useful resource has been the ICA (International Chiari Association) FB page.  The head of the association, Pete, responds to everything himself, and he is a Chiari sufferer too, a very experienced one!  Getting a few answers from him and advice from their website really helped me know where to start.  I did as much research as I could on Chiari and decompression surgery, but there was a gap I couldn't fill on my own.  I found little to no information about doctors in my area, even in the state of North Carolina.  That's when I decided to put it out there and ask my FB friends what they knew. I received a few responses from friends who knew people that had Chiari and even had decompression surgery.  I planned to contact them to find out what doctors/surgeons they had seen, until 'the blessing' came along!  My friend Leigh, our little ones go to preschool together, reached out to let me know that her Dad, Dr. Gary Pellom, is an anesthesiologist at Durham Regional and also had brain surgery there years ago.  A neurosurgeon by the name of Dr. Peter Bronec assisted on his surgery and has since become a very accomplished neurosurgeon and is even very experienced with decompression surgeries.  The key with Chiari, as with many other disorders, is not just finding the best neurosurgeon, but finding one with a lot of experience with your specific surgery and who you also are comfortable with. 
I already had an appointment scheduled by my doctor with a local neurosurgeon for September 4th, and in her defense, I really didn't know what to expect.  I hadn't even seen a neurologist yet so I was going to have to start from scratch with a neurosurgeon, I got to go straight to the top!  She seemed somewhat familiar with Chiari and decompression surgeries, but there were some discrepancies between what she said about a few things and what I had found in my research.  She said that even though I have a syrinx (build up of spinal fluid in the cord from the pressure of the Chiari on the spine), that I did not have syringomyelia.  But in my research, I found that the two go hand-in-hand. In my opinion, she didn't have enough experience with my condition to make me comfortable.  She also told me that surgery wasn't necessary, that I could go on as I am now if I wanted to. This definitely made me feel like she really didn't understand how much Chiari affected my daily quality of life or know what my situation could potentially lead to in the future if I didn't have surgery.
I immediately contacted Dr. Bronec's office in Durham and set up an appointment for Sept. 18th with his nurse practitioner, Joey. This time I had much higher expectations. I had done more research and had learned a lot from the first appointment.  Thanks to a very kind neighbor who kept Logan, Kevin was able to accompany me to Durham, and we were as ready as we could be. 
Even with our high expectations, we were still blown away. We were hoping to get to at least shake Dr. Bronec's hand and put a face with the name that day, but knew there was a good chance we wouldn't see him.  Not only did we meet him, he took the time to sit with us for as long as we needed, a good 10-15 minutes, thoroughly explaining everything we heard from Joey and completing the physical tests he had done once again.  His 'bedside manner' was impecable and we can't believe how much time he made for us when he didn't have to.
It was evident even through the NP that they had a lot of experience in dealing with Chiari. We were told that on the scale of Chiari, a malformation of 0-5mm usually doesn't come with a recommendation of surgery, 5-10mm it is considered.  We were then informed that my malformation is 16mm long, definitely at the higher end of the scale, and surgery is almost a must as my symptoms will worsen and new ones will come, even paralysis, which I already knew.  Just in the few months since being diagnosed, my symptoms had already worsened.  I went through a series of physical tests and he couldn't believe with the severity of my Chiari that I still had such good use of my arms and legs.  He also mentioned something I hadn't heard before, that my syrinx should be white on the MRI films, but mine shows up gray meaning that there is the presence of protein, or blood in my spinal fluid.  They're hoping its just from broken blood vessels due to years of chiropractic treatments, but to be sure, we're doing a thoracic MRI to make sure there isn't anything else, like a tumor somewhere else in my spinal cord producing the blood.  Also, the end of my syrinx is not visible on the cervical MRI, it continues down past the end of the scan, so the thoracic MRI should show them where it ends and exactly how big it is.  As far as size goes, my syrinx is off the charts. 
My thoracic MRI is scheduled for tomorrow morning and I should hear back next week as to what, if anything, was found. As always, I'll keep you posted.  Continued thanks for all of the love and support, XO...

How we got to Chiari..

A large part of the reason I want to tell this part of my story is for others who may be struggling and suffering from Chiari but don't know it yet.  The more MRI's that are done, the more that are found. It is a rare, underfunded, incurable disorder so the least I can do is my part. I know there are others who have that feeling that something is wrong with their body, but no one has been able to put a finger on it yet because the symptoms are so all over the place.  Thank goodness for my chiropractors who spoke up and said my newest symptoms called for an MRI, and a new doctor who really listened to me, and agreed. I've always had that feeling that if anyone ever looked inside my head, they would find something wrong.  What do you know, my gut feeling was right..

Anyone who has known me for a while knows that physical health is something I've often struggled with.  My childhood through early adulthood was filled with everything from regular sprains and broken bones to migraines, asthma, Raynaud's disease, Mono, EB (chronic fatigue), inability to keep weight on, etc. Despite all of this, I still managed to excel in sports in middle school and stayed active with some outside of high school.  On top of all that I was in two car accidents within 6 months of each other around age 11.  The first one we were rear-ended, the other hit on the side where I was sitting.  It wasn't but a couple years later that I started chiropractic care for my neck.  During one of those sprains/breaks, I shattered the growth plate in my ankle, which meant that leg would not grow any more, but the other one did (Ei-leen!!).  It fortunately only grew 9mm more since I was such an early bloomer, but that was enough. I ended up needing more chiropractic care for the strain on my hips from my uneven legs. 
The next thing I remember after that, besides a few more rounds with the ankles (Skydiving, Tara ;), is a fall I took onto my tailbone while waitressing.  It was quite traumatic to my lower back and required even more regular chiropractic care.  My whole adult life I have struggled with back and neck issues, headaches, and migraines.  Those of you who truly know what migraines are know why I listed them separately from headaches! 
Pregnancy seemed to help my lower back with the joints becoming more fluid so they could spread and move as needed. Overall my pregnancy was a wonderfully smooth experience, until delivery!  We knew all along that Logan would be a bigger baby. Not record breaking, but difficult for my size and frame to handle, even if healthy. My doctor was concerned that I wanted to give vaginal delivery a try, but never ever did I want to go through what I had to by the time it was over with.  Needless to say Logan's birth was unusually traumatic to my body, because it wasn't healthy.  I now know it was particularly traumatic to my spine, but at that time, we had no idea there was something bigger going on.  Had we known about the Chiari, I would never have been allowed to have a vaginal birth, a c-section would have been required, and will be in the future should it be necessary ;)
I can't remember if it was within weeks or months, but not long after giving birth I started having these pains whenever there was any strain on the muscles in my midsection, in other words, the muscles used in childbirth. Often when I would sit down, get up, bend over, or anything else simulating childbirth (TMI), I would feel this pain and tightness start at the back/base of my head, then creep up over my head to my forehead, where it would pulse and pound for anywhere from 5-15 seconds or so, then stop.  It is completely debilitating, all you can do is close your eyes, clench your teeth, and wait for it to stop. It's kind of like a brain freeze, times a million.  Those 'pains' became more and more frequent, especially anytime my neck was out of place.  I now know that those 'pains' are what is called a True Chiari Headache. Earlier this year a new symptom began. Anytime I would 'crack' my neck to relieve tension, normally a few times a day, or have my neck adjusted by a chiropractor, I would get tingling sensations and pains shooting through my shoulders, down my arms, darting out my fingers, and sometimes down the right side of my core.  This is the symptom that prompted everyone to want an MRI.
Also during the time since giving birth, it was evident not only to me, but also to Kevin that I was no longer myself.  I was often tired, fatigued, rarely had energy, sometimes I felt depressed because I had no energy or motivation to get up and do much of anything.  I ran on adrenaline or nothing at all. Other times I was anxious for no reason. I know part of it was going from a full-time job I was passionate about to staying home, but I was passionate about that too and I couldn't imagine it being the sole reason for how I was feeling. 
When I listed all of my symptoms to my new doctor at the end of July, not only the head pains, shooting tingles down my arms, but the fatigue, lack of motivation, anxiety, etc., we decided on blood work and a cervical MRI (Aug. 2).  The blood work all came back normal, which was disappointing to me because I really expected that to be a factor, but of course the MRI did not come back normal.  My doctor called me herself the day after the scan to give me the results.  She never said Chiari, just that I had a malformation at the base of my brain, that it was brain tissue, not any kind of growth, and that she wanted a brain MRI to make sure nothing else was going on.  She also said she would be sending me to a neuro-specialist, which ended up being a neurosurgeon. My brain MRI (Aug. 9) came back normal, a relief of course. I immediately began my own research (mostly Internet) and the only malformation I could find that occurred at the base of the brain is Chiari. Reading the information was like reading a journal of symptoms I had been keeping.  They were all there, many I hadn't even imagined would be connected. 
So that is how we got to where we are...I told you it was going to be long :(  But if you wanted to know, now you do!  Next time I'll cover a little bit about my experiences with neurosurgeons thus far...XO

Wednesday, September 19, 2012

Why I'm here :)

Wide awake at 12:15 am, mostly from the steroids but also from my mind racing, I started thinking about how I want to stay in touch with those who truly want to know and care about each step of this journey.  Some friends have asked for me to keep them updated every step of the way, but it is difficult and takes a lot of time sending and responding to each text and personal FB message.  I needed to find a way to tell everyone at once!  I also feel like I've been filling my FB wall with too much, that there are probably people who have chosen to 'hide' me from their wall when this all started, plus I just don't want to keep putting it out there like that, it was never my intention in the beginning.  Initially I wanted to keep this somewhat private and small, at least until surgery time, but it started spiralling out of control once I realized the need to search for resources and connections.  I have no regrets though because thanks to those initial posts, I have found the amazing neuro team we plan to stick with (I can never thank you enough for that Leigh!).
There's always been a little part of me who's wanted to 'blog', but I didn't want to do the typical Mommy blog unless it was something that took the place of filling my FB wall full of pictures of Logan, but I decided his is a face I think everyone should see :)  So I guess a small part of me is happy that I now have something to blog about...weird way to think about a neurological disorder I guess!  Anyway, now those of you who want the information know right where to find it and can get it at your convenience!
I will probably end up doing more posts throughout the night, as I don't feel sleep coming anytime soon.  I plan to start with my journey to Chiari, and fair warning, that will probably be a long one.  I promise I will do my best to keep my normally long-winded self under control in the future! 
Thanks to everyone for all of your love and support, and please don't let it stop, we're going to need it and appreciate every bit...XO