Sooooo this was going to be a very short post but the more I thought about it the longer it got … Sorry! Random thoughts for today that are flitting through my head. My ADHD is probably fueling this jumping of my mind all around so good luck keeping up.
1. Medicine Theory
While I would certainly love to be pain free and on heavy narcotics I made the decision recently to scale back. This was for several reasons if I am being honest. The foremost reasons is I was scared I wouldn’t be ready to be functional for work in 2 weeks if I hadn’t even tried functioning without drugs. Another is I wanted to ease back into the game rather than suddenly stopping my all medicine cold turkey. But honestly … I was also getting sick of this medicine regimine. It gets old quick. Imagine taking medicine every 4 hours. My wife has been so gracious waking up and not complaining because this means we also wake up to take medicines at 2 am and 4 am.
2. Change in Sense of Smell
Today I have become a superhero! Bet you didn’t know! My superhero name is snuffleupagus and my super power is a super enhanced sense of smell. I declared that I wanted waffles this morning and as I walked into the garage to get to the car I was overwhelmed with the smell of gas. I mean so bad that it smelled like some arsonist was getting ready to burn down the house. Well it always smells like gas in there because we have two 5 gallon gas containers for the riding lawn mower and one 2 gallon gas container for the weed whacker. Normally I can smell it but it smells pretty mild. Today I smelled it so strongly it almost knocked me over. I thought that was weird but just noted it and moved on.
Then we get to the Cruizers so Adri can gas up the car. She cracks my window and I was floored. I LOVED riding in the car with the window down smelling the air and feeling the breeze on my skin. I could not enjoy this moment at all I was simply overwhelmed with the smell of pollen and allergens if that is even possible.
So we leave the Cruizers and go to the Lowe’s Foods in the same parking lot to get syrup for the waffles. The walk from the car to the store was almost too much. I felt as if I could smell and was being assaulted by every single granule of pollen or pollutants in the air.
When we finally got back into the car after the shopping trip it was the same thing. The best way I can describe it is to imagine a hot summer day sitting in a really old car with leather seats. You get that effect where you are overwhelmed by the odors of old car and leather and feel like the air is being sucked out of your lungs because it is so hot. That is exactly how I felt when getting in the car even though it wasn’t hot.
3. Surprise!
If I have already blogged this forgive me. Narcotics, remember? So just when you think you have a handle on something you realize you don’t. When we went to the ER last Friday because of my obnoxious headaches, the doctor insisted I had a laminectomy and asked if they told me what vertebrae. I argued with him a couple of times to no avail because his response was simply “I am reading directly from the surgical report”. Silly doctor! You have no clue! I know what they did to me better than you!
Apparently not. When I had my follow up with Dr. Zomorodi and recounted my experience at the ER where I tried to gently explain to the ER doctor that I had not had a laminectomy because my surgeon told me it would not be needed and when I awoke in the ICU and he gave me the report on how the surgery went he didn’t mention that he had done one. I should have realized when he looked at the PA after I mentioned that.
Later after the stitches were removed Dr. Z invited myself and my wife to his office to show us the CT scan that was taken at the ER and go over with us what he had done. In some ways it was fascinating because you could see where he had removed the bone and where he had sewn in the patch. You could also see the fluid pocket (which by the way has completely disappeared and come back fully twice since the appointment … so much for being healed). Now the doozy was when he zoomed to another view and said “and this is where we removed half of C1 to make some space and allow me to cleanly seal the incision”. Dang it … I guess now I have to finally admit I did have a laminectomy. While I am certainly not happy about the added pain I am happy that at least there possibly is an explanation for why I have been having so much more post-op trouble than had been expected.
4. After Care? What after Care?
So I now have come to realize in full force what the chief complain is of almost every Chiarian I have talked to and why these various foundations and organizations exist. As if it wasn’t bad enough that there is no standard treatment and no consensus on what works (many doctors perform their own version of this surgery which is why it is so important to do your research and make sure you are comfortable with your surgeon, their background and experience, and exactly what is being done to you). I had taken for granted that everybody I talked to knew what Chiari was and what I had done to me. Hmmmm must be those handy narcotics making me forget that duh! it is because they were all in my surgeons network or the same practice. I have now started facing doctors who have never heard of CM / SM and am starting the struggle of learning how to explain this disease and the “treatment” to others when I still feel like I haven’t fully wrapped my own head around it. I know I had said this many times but I truly can’t understate how hard it is to explain to people why I had head surgery as a remedy for back pain.
And this is one of the biggest problems with this disease to date (besides the fact that the treatment is brutal and has no real guarantees). There isn’t really any good aftercare and no hope of standard or good aftercare until there is awareness. After all, how can I expect to go to doctors and follow up and discuss the problems I am having and expect to hold a meaningful conversation and receive an appropriate resolution to my problem if the doctor has never heard of my condition?
5. Exhausted? Who me? Absolutely!
The other thing I am struggling to take positively is the ease at which my good times go bad. I have not been very athletic or in shape in quite a while now but I still struggle to comprehend how doing such simple things that we all take for granted can cause so much trouble. Imagine just simply walking to your mailbox and back. Not even briskly, you are walking very slowly with purpose taking it easy not to hurt yourself. Seems innocent enough. Until you feel as if you have walked across the entire United States and you suddenly have a headache so bad that combined with the exhaustion you don’t feel back to your pre-walk self until after you have taken a 5 hour nap. Talk about frustrating!
And so there it is. I am done ranting for the day. All I can do at this point is hope that my random rants and ramblings about my experiences into uncharted territories (at least for me) can help someone in the future who finds themself in the same situation as me … not knowing what to do or what the future holds and scared about the immediate future and what is to be done.
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