I have been so overwhelmed with my nightmare of a situation at home that I haven’t had the time to post about my symptoms, process and oddities along the way to my first surgery, which is now in just a few days. I am, very thankfully, going to Dr. Samji, in San Jose, so I trust that I am going to the best possible surgeon. My case is complicated, as it seems most are but I am scared that my Trigeminal and Occipital Neuralgias are going to get worse before hopefully things settle down AFTER my second surgery and recovery. I had to postpone my surgery date once so I am determined to get on that plane this Friday morning.
Most recently, my vagus nerve symptoms have been triggering what my neurologist and I both believe to be Mast Cell Activation Syndrome. I am hoping that once my styloid is removed and my vagus nerve can recover, my long list of vagus nerve problems will lessen and hopefully resolve completely. I have also stopped getting my nerve blocks, as requested by Dr. Samji, so that my nerves are responsive to his nerve monitoring during surgery. That said, boy are my nerves getting pissy. I am taking every precaution possible to avoid triggers, but a cool breeze could be all it takes to set my face and head full-on into a blow torch.
I am making my packing lists and trying to get things as battened down at home as possible. My youngest sister is flying in to stay with my daughter and all of our pets and my best friend is flying to San Jose, to be with me for the week. There are extenuating circumstances that are making this trip very difficult and stressful. I am doing everything I can, within my control, to plan and prepare for the worst but expect the best.
My surgery is Monday, Dec, 9, and I am scheduled for 7:30am, which is a nice spot to have. Thank you for all of your support and advice, as I read most of your posts, when I can. I do have some good 3D pics of my styloids but I have had difficulty uploading them. I will try to add them here, but may need to do so in another post.
Your left styloid is extremely long & up close appears to be thinner than your right one. I had the same situation - left was longer & right was thicker, but my right side was growing nearly straight down as opposed to curving inward, so Dr. Samji opted to remove it first. It was my left side that caused the majority of my pain, but in the end, I found I was having vascular & vagus symptoms from the right styloid so his decision was for the best. I know he’ll be able to help you. He is wonderful.
I will be praying your that the pre-op period stressors are manageable & that your ES surgeries will take the pressure off your vagus nerve & the MCAS will cease. Mast cell issues are the worst! I have a friend w/ Mast Cell Disease that has really tangled w/ her digestive system. I truly hope ES surgery turns that around for you.
Hi Allison ,
I will be praying for you on Monday and even before you board your plane on Friday.
It seemed like right before my surgery 134 things piled up to make my situation and surgery even harder too. I really do understand. But it sounds like you are in really great hands with the bestie going with you and being in the care of Dr Samji. It’s just a matter of self-care. You need to do this for you—get on the plane friend!
Will be praying for you, for peace before the surgery as well as for a swift recovery. I hope that the nerve pain isn’t as bad as you think before surgery & afterwards.
Good that you have a friend to come with you, & hope things are okay at home while you’re away!
Having all of these medical issues alone is tough, but additional stresses at home compounds it all. I am sorry that you are going through this. I am also a single mom with two kids - lol I still call my children “kids.” My son, now 23, has really pushed the boundaries of tough love but he/we got through it.
Getting the styloid out is the first step. The healing can take a few months, but it will happen. The anxiety that the affected nerves throw at us can feel insurmountable. My vagus nerve took several months to calm down. I found that my ice pack angled on my chest following the vagus nerve truly helped calm the nerves. (I noticed that hot waves would amp up my anxiety - not an overall body hot flash, but its as if it ran down my vagus nerve. It makes sense then that the ice helped.)
Through all of this keep what you love close to your heart. Be kind to yourself. (I write this as a reminder for me as well. I am having the second side out on 12/10.) I see that you are a birder - me too! NYC is one of the best places for spring migration and identifying warblers is one of my all time favorite things and now learning their call. When we are both healed maybe we can meet on a bird trip somewhere. There are many life birds in the US for me to find.
Sending hugs and prayers for a speedy recovery and for your home life to be less stressful.
BG
Hi. Dr Samji did my surgery on my right styloid July of 2018.i didn’t and don’t have vagus nerve issues but i do have glossopharyneal and some degree of trigeminal neuropathy since then. Sometimes nerve running down my neck into my shoulder. Sometimes a lot of pain along ear, under jaw and pain in throat. In the last month or so I’ve been better and I am grateful for that. I still have numbness in my face/ear but way better than it was. Ice ice ice after surgery. In fact after it my hubby took me to get a frozen smoothie (no milk) after that man that felt good since no food for a long time. Dr samji is really great. He can’t promise results but i trust him and if my left one ever acts up (i have it there too but no symptoms) I’d definitely go back to him again. I avoided the steroids after surgery since i can’t tolerate them so he advised my recovery would be longer than most because of that. I avoid opiates like the plague as they make me nauseous and after i barfed after 2 pills the day of surgery - no more pills. I use medical MJ for all my pain, etc. totally helps and no freaking side affects for me. Best of luck truly - you’re in good hands with Dr Samji. If you need to contact me while you are here - i live about 10 minutes from his south San Jose office .
