I was able to have my first surgery mid December and while I am healing well from the surgery it self, it has been really rough. I needed a C1 shave and the bony area still is very tender and I get some pain from it.
I didn’t really get 1st bite syndrome, but had alot of GI issues from the antibiotics they gave for surgery and post op.
There is a noticeable difference in the sensation on that side of the neck, that pressure and stabbing is gone. Its a general ache now, and I will have numbness in my lower ear lobe for the next 9 months or so because they had to cut the accessory nerve.
I am scheduled for the next surgery on Feb 17th this month and hope that it goes a bit smoother. My stomach is still very touch and go and am worried that more antibiotics will cause further issues. I don’t fully understand why, but have developed a depression after the surgery, maybe I was not anticipating how involved it would be or over estimating how much benefit I would get from it.
I did notice that the CCI symptoms really got worse after the operation, I am laying down most of the time now because of severe fatigue and dizziness, hoping that I didn’t make a mistake by not getting the fusion done first.
I do think the blood flow is better, and while I still get severe headaches, there seems to be some less pressure at times when I am rested.
The left side has bone on bone contact between the styloid and c1 and am hoping that the pain relief from that will give me a good boost mentally as I recover from it. I’ll have my neck brace on more and hope that I can figure out how to arrange for the fusion as quickly as I humanly can.
I am new and have no advice but I want to send you healing thoughts. Thank you for sharing your experience with surgery and I hope you start feeling better SOON!
It is a big surgery, so not surprising you feel rough
Although you probably won’t feel the full benefit until you have both sides done, is it worth putting off the second side for a bit longer, especially as you’ve had GI issues ? It could be that your vagus nerve has been irritated with the surgery & that can cause GI issues?
Praying that you see more improvements soon, take care & God bless
@Disabled_Inventor I’m sorry to hear that you aren’t feeling well. I can think of a couple of physiological reasons for your post-surgical depression. First, our gut health plays a huge role in mood. It is it’s own nervous system called the enteric nervous system and (via the vagus nerve) has many more nerve fibers traveling from the gut to the brain than the brain to the gut. When our digestive systems out of whack our mood takes a hit. Antibiotics are amazing but they also take a scorched earth approach to the gut microbiome. Without proper care we can end up repopulating with bacteria that is not commensal. For example, our gut microbiome is made up of anaerobic bacteria and if we have a bit of a leaky gut due to stress, poor eating, etc., after a course of antibiotics, aerobic bacteria can take hold and muscle out the bacteria that is supposed to live there causing dysbiosis. This can cause discomfort, bloating, heartburn and mood changes to name a few. You might consider working with a functional medicine practitioner to work on sealing up the leaks, a natural antimicrobial protocol to eliminate the ‘bad’ bacteria and then a good diet and maybe certain probiotics to repopulate your gut. I imagine if you asked ChatGPT to set you up with such a program you could get a basic framework. Personally, (and not a medical opinion), I like Thorne’s Enteromend and GI Encap to soothe my gut when it is acting up. I use 1 scoop of the orange flavored Enteromend and empty 2 Encap (sort of licorice flavor) into water and drink it a couple of time per day. I use berberine as a natural antimicrobial. After a course of antibiotics I always use a product call Probutyrate as butyric acid helps develop a healthy gut. Some foods, like butter, are naturally high in butyric acid. Then I try and eat all of the colors of the rainbow in my food choices, including different herbs and spices to support a healthy microbiome. Hopefully a happier gut will lead to an improvement in your mood.
My second thought is that all of us go through so much getting to the point of surgery and then the stress of the surgery itself. We are so frequently in an activated sympathetic nervous system (flight/fight). And then we have the surgery and our bodies hit the vagal brake too hard leading to a dorsal vagal response (freeze). So for so long we have too much activation energy and then suddenly not enough. So anything you can do that gives you a little activation energy by moving toward feelings of safety, satisfaction and connection in small, healthy ways will help you take your foot off the vagal brake so to speak. Including offering yourself compassion and giving yourself permission to rest and heal. Arielle Schwartz and Deb Dana have both written excellent guides for working with these nervous system states.
I hope you find some of this useful as you continue your recovery journey. I’ll be keeping you in my thoughts.
I’m so glad your first surgery is behind you & you’ve had some positive results but am sorry for the post op struggles. I think the information that @Chrickychricky has given is excellent. My first thought about your gut issues was very similar to hers but I would have only recommended starting on a good prebiotic & probiotic to repopulate your gut flora beneficially. She’s actually provided the science behind what could be causing the problem.
Since your IJV compression & styloid situation are/were pretty extreme, I am hopeful that your second surgery will start you on the road to a more full recovery & the cervical fusion will complete the process.
I agree with @Jules that perhaps waiting a little longer to have your second surgery would allow you to “get your feet back on the ground” a bit more substantially before going through surgery/recovery all over again. Many doctors recommend having them 3 months or more apart. My first surgeon wouldn’t do them closer than 6 months apart though he’s changed that to 3 months now. Just something to think about.
Please let us know what you decide regarding the next surgery. I’m putting 2/17 on my calendar for surgery #2 so I can pray for you then. I’ll update that if you decide to wait a bit.
I’m new here as well, sending good wishes for your recovery.
I also had a question. I’ve read stories on here that people have both sides done at the same time and then ones like yours where you do one at a time. Is that because of the complexity of your ES or something else like surgeon or patient preference?
@Bay , the answer to your question is a bit of both! There are only a few doctors that we know of who do both sides at the same time as there can be significant swelling, although members who’ve had this surgery seem to generally do very well, like with Dr Hackman in NC. With the Vascular ES surgery though, & especially if there’s a need to shave the C1 process as well , it’s not done bilaterally in the US. The vascular doctors check to make sure that blood is flowing properly after the compression is removed, and sometimes only one side needs surgery for this & an improvement in symptoms with time.
Dr Aghayev in Turkey does, but it seems to be a rough recovery, although all over in one go!
