Upon the suggestion of a couple of friends (and based upon the recommendation of some others), I scheduled an appointment with another Ears/Nose/Throat doctor here in town to get another opinion.
His believes without a doubt, I will see relief from headaches (he can’t guarantee 100%) by opting to go ahead and have surgery. Not only are there numerous cysts in one sinus cavity, I also have a “horribly” deviated septum and what appears to be chronic sinusitis in the cavity opposite the cysts. He said that it wasn’t any wonder why I was having headaches in response to weather changes.
This appointment made me question whether the first doctor even looked at the MRI images or just read the radiology report as it never mentioned anything other than a single cyst.
Right now, I’m set for surgery on September 16th. I’m beginning to feel like I should apply for a frequent flyer discount.
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Two years ago today I heard the word Chiari for the first time. Two years ago I walked into my NP’s office bracing myself for a possible diagnosis of multiple sclerosis; I walked out stunned, confused, anxious and scared. I needed more information but was afraid to find out more at the same time. Afraid of what could lay ahead.
I’ve come a long way in the past two years. A successful decompression surgery, a brand new baby and a slowly growing business. Life is crazy busy but it’s good. I’m grateful to have the craziness and to feel well.
We found out a couple of months ago that I have a cyst in my sinus cavity. I had a nasty sinus infection just before the baby was born — my guess is that the antibiotics I took didn’t completely clear the “junk” out, causing the cyst. Just after delivery I started having some random headaches again as well. I’m wondering if the cyst is what is causing them. The doctor has offered surgery as a possible solution but can’t guarantee it will solve the problem. Right now his prognosis is 50:50.
I’m still on the fence about surgery. I’d love to be headache free again but don’t know if a 50% chance of relief is worth having surgery for. When we were faced with those odds regarding my brain surgery I didn’t think much about it. I knew I had to try it. But in this case I just don’t know.
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Another beautiful baby girl joined our family just after midnight on January 1st, making her the official New Year’s baby for the area.
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In the last couple of weeks I’ve continuously found myself comparing “today” (i.e. whatever day it was) to a year ago. I’m not sure if it’s a good thing to do or not because the situations are so completely different but it’s a habit I just can’t break.
It amazes me how far I’ve come in a year. A year ago we were delicately navigating our way through recovery — facing encounters such as H1N1 — and watching my progress day to day for signs of improvement. Today we are hurdling towards the arrival of a new baby and the start of yet another new chapter in our lives.
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One year ago today, I told my husband I loved him and tried not to cry as they wheeled me toward the operating room. My thoughts vacillated between the scary “what ifs” involved with brain surgery and the hope of a new, improved life.
The summer had been a whirlwind with the Chiari diagnosis in early July, appointments with neurosurgeons and neurologists and then planning for the surgery we felt was the best path for us. As much as I tried to cherish the moments leading up to October 2nd it felt as they had slipped so quickly through my fingers. So much of my memories were veiled in pain and fear of the unknown.
With the help of a fantastic neurosurgeon and the support of an amazing network of family and friends–too many to list right now–I came through surgery with flying colors. The first few days following the ordeal are very fuzzy, which now mimic the memories of the headaches and pain that used to plague me as well. As my body healed in the first few weeks after surgery it became evident how successful the procedure had been.
Now, a year later, I’m grateful for the opportunity I’ve been given. I’m grateful we made the decision to travel to Salt Lake to meet with Dr. Schmidt at the University of Utah instead of relying solely on the opinion of a local neurosurgeon. I’m grateful that I never had to find out about the scare “what ifs” of the surgery. I’m grateful to live (mainly) pain and symptom free with an occasional headache peppered into my life to keep me humble. I’m grateful that I was a positive statistic in this game of what appears to be chance at times.
A year ago, with the help of many, I kicked Chiari’s ass.
I AM A BRAIN SURGERY SURVIVOR!
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We kept it fairly under the radar, but I had an appointment with a neurologist here in town a few weeks ago. Throughout the summer I’ve had a smattering of headaches and some point tenderness at my surgical site. My OB thought it warranted a trip to the neuro just to make sure there was nothing going on with the Chiari.
Thankfully, the neurologist doesn’t believe for an instance that it’s Chiari related. Instead he believes they are probably pregnancy induced and exacerbated by not being able to take any typical migraine meds for them. He started me on magnesium and riboflavin supplements as a preventative measure to see if it was deficiency related.
The supplements haven’t seemed to make much difference but it’s become increasingly apparent to us that these headaches are weather related. I had suspicions early on that was the case. After 2 horrible headaches in the last week, on days with almost identical weather patterns, my suspicions are pretty well confirmed.
It seems as though I get headaches when we have a change in weather blow through. Especially when we have high winds bringing in a storm front. My guess is that it’s the change in barometric pressure that is triggering the pain.
Perhaps they’d be easily managed with my normal meds, but for now I’m trying to combat them with fluids, tylenol, sudafed and a pain pill (per the approval of both my OB and neurologist) when they get bad. Hopefully fall will make its final appearance soon and these weather changes will stabilize.
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Yesterday marks the 1-year anniversary of our trip to Utah to meet with the neurosurgeon. In a short 6 weeks we’ll be drawing close to (or passing by) the one year anniversary of my decompression surgery.
It may sound trivial for me to mention this stuff here, but it continues to baffle me that it’s been a full year since we were in the thick of that part of our chiari journey.
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