Ashley's SGB (Stellate Ganglion Block)
Donation protected
Hi all,
My name is Ashley and I have parosmia and dysgeusia. In regular people terms, it means that many things taste (dysgeusia) and smell (parosmia) like rotting garbage and/or food from the compost bucket covered in moldy garlic.
These conditions were caused by my infection with covid-19; I have long-covid. I was so careful. So. Freaking. Careful. I made my family and friends wear masks when they held my baby. I distanced. I sanitized. I ordered online. I was judgemental...hello Karma. I literally hadn't personally gone into a store for 12 months. Once I did start going out, I *always* wore my mask and stayed six feet away from everyone. The suspected interaction of infection happened within a minute. It was so fast. I guess you could call it bad luck. In any event, I lost my smell and taste completely from April 2021 to July 2021. In late July/early August 2021, things started changing for the worse. It was gradual at first, but then I started "losing" foods pretty rapidly. By mid-September, I couldn't eat any meat, and only had a handful of "safe foods" -- safe foods are foods that don't taste or smell correctly, but that I can eat without needing to immediately spit them out. I should note, that some safe foods actually taste ok at first, but then give a really terrible aftertaste. Currently, I can eat carrots and a sweet potatoes in the freezer bag with brown sugar sauce, plain pasta (or pasta with a plain béchamel sauce, no seasoning past salt), brown rice, uncooked button mushrooms, two types of yogurt, dried cranberries, avocadoes, frozen blueberries, pancakes (real maple syrup works), most salmon (pan fried, no seasoning or "blackening"), King's Hawaiian rolls, and one brand of vanilla protein shake. That's pretty much it. Imagine eating only these items for a year...every day. Birthdays, Thanksgiving and all other holidays, picnics, road trips...all affected. Every day requires me to pack a yogurt or make a special meal to heat in the microwave -- no running to the sandwich shop or through the drive thru for me.
Anyway, I was originally told by my local ENT not to worry about the disorders as time would heal them. Each appointment was the same. No change, no concern. Until this past March, when he told me that he's never seen anyone have these conditions for so long and I might want to move forward as if I might have them forever. Forever. I was 34 at the time. No chocolate ice cream? No turkey dinner? No olive garden?! Forever? I was devastated. Between August 2021 and March 2022 I had tried antibiotics, nasal and oral steroids, vitamin A, vitamin C, Alpha Lipoic Acid, essential oil smell training, reiki, and sepia. I also had a CT scan that showed no visible reason for my conditions. Recently, I've tried a nasal spray containing horseradish and cayenne pepper. Nothing has worked, and time has not healed me thus far. I've also recently seen a neurologist who was essentially gaslighting me by saying he thought my anxiety was causing this. Unreal.
Mentally, this journey has been so difficult. Last August, I joined a Facebook group with nearly 52,000 (current) members all with the same conditions as me. All of the members either have the conditions themselves, or represent someone in their family who does (ex. a wife in the group has a husband who isn't on Facebook but is looking for help). Most of the above suggested treatments came from this group and have worked for some folks here and there. This group has honestly been my saving grace for support. These folks know *exactly* what I'm personally going through, and they provide a level of empathy that can't be matched even by loved ones around me who desperately want me cured, but really have no idea what I endure every day.
One treatment I haven't tried is the Stellate Ganglion Block (SGB). Google says "the stellate ganglion block (SGB) is a procedure in which an injection of a long-acting local anesthetic, using ultrasound or fluoroscopic guidance, is made in the right side of the neck around the main nerve that controls the “fight or flight” response (the sympathetic nervous system)." Essentially, it's a shot in the neck that's supposed to "reset" automatic things...like (in my case) broken olfactory nerves causing funky taste and smell. This treatment is relatively new to the covid-treatment world, and not covered by insurance. My understanding is that the treatment was found to work for the smell and taste issues by chance. Many people in the Facebook group I'm in have gotten these shots and have had improvement. Over the course of the year I've been in the group, it seems to be the one consistent thing that helps most people who do it, minor to major (up to 100%) improvement.
I've thought a lot about this treatment over the last 6 months or so, hoping that my conditions would go away on their own, or with another one of the "easier" or cheaper treatments. But as I've reached this one year mark (15 months without normal taste and smell) I've decided it's time for me to give the SGB a try. As I said, the SGB is not covered by insurance, and they cost $500 each. The treatment for long-covid requires a shot on each side of the neck, totaling $1,000 out of pocket. I've decided if I'm going to go through with this, I'm going to the expert: David Gaskin, CRNA, NSPM-C, CPT USAR, in Bryan Texas. Yeah, Texas. He's done the most blocks for these conditions of anyone in the country, and has the highest success rate. Going to Texas means added costs for me on top of the $1,000 for the shots: flights, hotel, car rental, parking, gas...it adds up quickly. But I can't sit around and wait any longer. I've scheduled my SGB with David Gaskin for August 25th.
I've started a gofundme because I've had lots of people reach out to me with love and support, and they've offered to help. I can't tell you how good it has felt to be out in public and to have people talk to me about these hidden conditions. It has helped me feel "seen" and loved to no end. If you're one of those kind folks who have offered to help, please feel free to help me cover the cost of these incredibly expensive shots in an attempt to regain some of my pre-covid, normal, life back with (hopefully) corrected smell and taste. The SGB is not guaranteed, but if I don't try then I'll never know. I'd be happy to answer any questions about my conditions that you have. Thank you so much for your love <3
Organizer
Ashley Van Zandt
Organizer
Lyndonville, VT