Surgery date set

Hey everyone.

Been on the quiet side for the past several weeks. I finally met with Dr. Annino. My surgery is set for June 9th.

I am quite hopeful, but also simultaneously a bit scared.

Upon discussion with him, he said that he recommended the surgery, to which, I felt before this discussion, like it was really going to be an illusion of choice, having had to suffer for this for three years.

For those unfamilliar, My Stylohyoid ligaments are calcified, but it turns out my left side is far worse than my right, which incidentally is the side where I feel a “tearing pull” like I swallowed a bone during strong yawns, or effortful swallows.

A second opinion from someone more practiced was probably the best choice I could have made for myself, as the doctor who diagnosed it sugested an intra-oral approach, which according to the expertise of Dr. Annino conflicts with what is required to be done for minimum complications, and maximum efficacy, to which suggested a different approach. This also made sense, because of the extent of my calcification. Incidentally, I asked that a conversation will be had between the two doctors, as I feel it is very important for any doctor who has differing views, discuss it amongst themselves, to come to understandings for future encounters.

I am quite scared of the premise of a failed treatment, or complications.

I have never had a surgery this major, in my life. The closest surgery I’ve ever had was related to a broken bone in my youth. I know that this could be life-altering in either direction, but the doctor whom I am having do the surgery has done many of these, so this significantly lessens my anxiety over it.

The plan of attack is to remove the more major of the calcifications, and see if it alleviates symptoms, and go from there.

My knowledge of anatomy and physiology is somewhat elaborate, so, the reality of having to do a procedure that is so close to so many nerves and essential arteries is a little distressing, it does the exact opposite of keeping me calm. I have a strong feeling I will have trouble sleeping the night before… haha…

In all seriousness, To those of you who have completed the procedure, It would be wonderful to hear your input, anything I can do to make the process easier - pre, and post-procedure. Even some advice to help me with the anxiety leading up to it would be helpful. I realize, at this point, It is quite literally a leap of faith, but absolutely anything that any of you can offer for input will be treasured in my days leading up to, and after the operation.

I am grateful to have found this site, and look forward to hearing from all of you.

Hi there!
First off…congrats on having a date! This is a significant part of the battle we all face here…getting diagnosed and getting a date with an experienced surgeon!

Second, your feelings about surgery are every bit validated! I just had my surgery on 5/4 so am two weeks post op today. So those feelings and all you’re now thinking of are still pretty fresh for me :blush:

Every surgery carries risks…we know this. Rest assured this is what your pre-op appts will help with. To assure you’re in good health to give the best possible outcome! I’m not familiar with your surgeon but most experienced surgeons who have performed ES surgery or neck/skull-based surgeries in general are intimately familiar with this delicate area…it sounds like your surgeon fits this bill. If you haven’t already, you may want to inquire what is done to protect/monitor nerves. This may give you further peace of mind going in.

My surgeon told me that all the major nerves are located behind the SP the with the exception of the facial nerve. They monitored this but you’re still almost guaranteed to have numbness just from irritation during surgery. It should mostly if not all go away in time- I read that often it’s the earlobe that stays a bit numb. A small price to get rid of all the other debilitating symptoms of ES. My face (ear and jawline) was stupidly numb right after surgery- I knew it would be, but I wasn’t totally prepared for how much. Now, my jaw line is coming back at maybe 50% and my ear might be 5-10% less numb. My incision area is starting to itch a bit and I can’t feel much to scratch it. Still weird, lol!

I felt anxiety pre-op- wondering if I was making the right decision, was it the right diagnosis, have I considered ALL of my options, was I ready for surgery/recovery? You name it, I felt it. I can say the gentle support here was my biggest gift. I’ve leaned on folks here quite a bit…and they’ve been just amazing!

Surgery day itself (my experience) was good! Hospital staff are trained to ease your fears and getting wheeled into the OR they gave me something to calm my nerves…and boy did it! I kept telling the OR staff how great I felt, lol! The last thing I recall was the oxygen mask and the nurses telling me to breathe deeply. Next thing I knew, was in recovery getting ice chips.

I had to stay one night. And sleep is unheard of in the hospital. They check on you around the clock and assure you’re taking meds on schedule. They assured the right progression of foods (clear liquids, to soft food, to no limits). My advice- get ice packs around the clock. You’ll need them. I couldn’t wait to go home so I could sleep!

Once home, I felt pretty good- as others mentioned here it’s the “honeymoon phase” when the pain meds and anesthesia are still in your system. By day 3 post op, I was a bit less than great- and that may be a stretch. Lots of rest, tons of ice (I used those old fashioned ice bags with the screw off top…I felt they conformed to my neck well and the cold lasted longer than gel packs), have soft foods ready in case you have some stiffness, lots and lots of water to flush your body and help with swelling and seriously, just rest! Don’t be afraid with taking meds to ease inflammation and pain. It’s temporary and needed during this phase. You may get First Bite Syndrome- which is a shooting pain in your jaw upon the first couple bits. For me, it was a little more intense the first few days I had it. Not as bad now but I’ve also leaned that I just clench my jaw until it subsides. This should fade over time too.

As others will mention too- sleep a bit elevated. I had a wedge pillow and it indeed helped to control swelling. Use it as long as you need! There’s lots going on during recovery.

At two weeks I still feel my stamina is a bit weak come noon-1:00 and I need to take a little rest. I’m still using ice several times a day because whether I am or not, I still feel inflamed under the incision. My symptoms are improving slowly. The reminders I get here that this is normal are of huge value in keeping my anxiety in check when I feel like I should be further along. I took two weeks off work to focus on healing and have needed it. I’ll go back part time next week.

I’m certain there’s loads more of advice that I’m over-looking. Just be easy on yourself, lean on the folks here…no feelings are off limits, and embrace that this is a slow & steady process.

Im excited for you! Knowing that there’s a diagnosis, a scheduled surgery and the light is straight ahead! You’ve got this and we’re all here to help you through it :purple_heart:

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Thank you immensely.

I don’t expect this to be an easy process.

The biggest concerns I have is it worsening my already poor ability to swallow from this condition.

The last 3 times I’ve swallowed pills have resulted in the pill going down the wrong way. Pills are currently a frightening prospect to me, and I intend on informing the nurses and doctors about this. I generally don’t take pills often, but I suppose that’s expected for a calcified pair of ligaments. This has gone on for so long, I don’t remember what a normal swallow feels like very well. The tactile “grip” sense I long to experience has been gone for a long time, and had been replaced with a sharp dental pain and/or that “bone swallow” shearing pain… but I do have hopes that this is in fact the source of all my problems.

It’s all still quite surreal to me, that 10 years ago, I thought I had eagle Syndrome, presented from presyncope (Graying of vision) from self-manipulating my neck for a “crack” in college. I still don’t quite believe it, and my father hilariously doesn’t think these two were related.

I was never diagnosed for it at that time though, but was treated with gabapentin to resolve suspected nerve irritation perceived to be idiopathic.

I often count my blessings, and really empathize with those that suffer from this ailment, because of how easily it can destroy a sense of normalcy.

hearing your experience has been helpful, and I hope your recovery goes smoothly.