47 M New Diagnosis
All of this acutely started about 4-1/2 weeks ago after breathing improperly during weight lifting. It wasn’t immediate, but within a few hours a headache started coming on. By morning I was at a 7/8 out of ten with most pain around back of my head, but also neck and behind my eyes with light sensitivity.
Historically I have gotten maybe 4-6 bad headaches a year, only one of which has ever lasted overnight prior to this. Normally I’d take two Excedrine Migraine’s, rest in the dark and would have relief by the next morning.
This headache has been different; it literally has not gone away in the past month. It improved down to an average of 2-3 out of ten for a while but has been back up at a 5 for the last few days.
Initially saw an NP as my PCP was in Hawaii on vacation. NP was confused as she said symptoms of my headache included those of migraines, tension and a third type related to neck tension. She gave me toradol injection anyway and sent me on my way. No real relief so when my PCP was back he ordered brain MRI and angio brain MRI as I told him my husband was worried about a potential venus malformation.
Well as you can probably guess by this post, I just got results from Brain MRIs back which indicate a Chiari Type I malformation at 5mm which I know is the cutoff for diagnosis
I have started going down the rabbit hole of information. My PCP says first referral is to a neurologist and they make determination when to whether to refer to neurosurgery. It sounds like closest expert to me is Samuel F Ciricillo, M.D.
at Sutter Health in Sacramento who seems to have good reviews.
I started looking at all of the Chiari potential symptoms and a ton of stuff started clicking for me potentially explaining some things that have been going on for years if not decades unexplained.
Clearly the 4-6 bad headaches a year for last twenty or so years are likely related, though I wish I would have been able to identify something that could have triggered those at the time, they always seemed so random.
I have had stiff neck and neck and shoulder pain for last close to four years slowly increasing with tingling and numbness in my right arm and hand initially now in both. It happens while sleeping, driving, bike riding, and working at computer. I always assumed it was too much mousing, but when it started on the left side in last few months I was a bit confused.
I don’t generally have vertigo or dizziness, but I do get motion sickness very easily whether in cars, on boats or carnival rides and when it happens it takes a long time for me to recover from it, sometimes more than a day.
All of a sudden in the last 2-3 years I have started sweating profusely from my scalp, and only my scalp, even when I am not really doing all that much. I have also noticed that I am constantly having to adjust bed covers to have different amounts of layers over different parts of my body as if I don’t I am overwhelmingly too hot or too cold overall.
Brain fog/memory/exhaustion. I am 47 with a 2 year old and a 3 year old. The last three years my brain has been beyond foggy and my inability to recall words has been beyond frustrating. I also am exhausted constantly and have to constantly push myself to keep up with work, the house and the kids. I had assumed being an older dad and getting a lot less sleep was the sole explanation for all of the exhaustion, but now am wondering how much the malformation has contributed.
Slower than normal resting heart rate. My husband has always been in better shape than me and is always frustrated by the fact that my resting heart rate is so low. During waking hours it is around 55-60 bpm, overnight it averages between 38-45 bpm.
A few other things include trouble swallowing. I have gotten things stuck in my esophagus since I was maybe 10-12 years old. I’d either have to cough them back up or massage my chest and wait for them to eventually painfully go down. When I was a child they diagnosed me with a “funny tummy” which was basically their non-diagnosis saying imaging didn’t show anything. Later in life endoscopies explained it as it must be related to GERD scarring. Now I am wondering if it was the chiari the whole time?
Similarly since childhood I have had horrible hand/eye coordination, am clumsy, was bad at sports and my handwriting/drawing is just horrific.
Obviously not all of my symptoms are necessarily 100% Chiari related and I don’t want to sound like I am blaming all of my problems on it, but I also don’t want to leave things out when talking to the medical professionals as it sounds like some have the potential to not take you seriously.
From what I am gathering it sounds like neurology isn’t going to be able to do much and perhaps I should just try to get in with neurosurgery asap?
What are the options aside from decompression surgery are there? Are there any that actually provide relief? I realize from reading there are a lot of folks dealing with symptoms that sound a lot worse and more debilitating than mine. If there are non-surgical options that could actually provide relief I’d give them a shot, but if decompression is what is needed I’d rather just get it over and done with as soon as possible.