Surgery date set

[Ice_dragon]

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.

[Tjmhawk01]

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

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

[Ice_dragon]

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.

[vdm]

How did it go @Ice_dragon , and how is your recovery now eight weeks later?..

[Michael123]

Hope things are going well.Your story help me.After seeing my ct results it kind of scared me.I know the risks but willing to take them to feel better .Now im waiting on a surgery date .happy healing ice_dragon

[Ice_dragon]

Hi Everyone, They did push back my surgery a month due to a doctor having to reschedule, so I did end up having to have it scheduled for the 5th of July.

I apologize for the lack of response. I am still slowly recovering. It is a long process, and my nerves are still sensitive.

They discovered that the calcification on my left Stylohyoid ligament had actually recently completely started forming into early-stage trabecular bone tissue, complete with bone marrow. If that’s true, I had this for a very long time.

I am doing alright. I am feeling a slight bit of relief, but this has been going for so long, without me knowing, that my concerns are shifted to some possible level of atrophy due to the tethering of my hyoid bone.

My recovery is still in-process, and my doctor had informed me that I should contact him in 6 to 8 weeks for an update, I intend on doing this next Monday - after which to discern what the next approach is, if I’m still having some trouble eating.

There have been some slight tactile changes, and slight reduction in sensation faculties (This is likely due to what I perceive to be some atrophy) and although I do feel the “pull” of something along the inside of my neck, Thankfully, post-surgery, it doesn’t feel like a significant shearing and stabbing pain during those random events. but that pain does still exist, but has reared its head on the other side occasionally.

My bottom front teeth, though when I do an effortful swallow, the swallowing does irritate my nerve branch still, but that could possibly mean that the source of that is the opposite side.

Incidentally, I have found that my level of mental clarity has improved dramatically after the procedure. It is possible that the calcification had put pressure on the nearby structures, causing possible unnoticeable circulatory symptoms, and even affected my anxiety levels. Based on what I have read, I guess the nerves nearby may be a cause for some of the anxiety I have had.

I had recently started feeling a familliar sensation of a fluid running down my neck, which kind of confirms my suspicions of an event that happened when I was 22 years old at college, following “cracking” of my neck for neck tension release that produced that identical sensation.

I would not use my experience as a baseline experience, as it “seems” like it came to a surprise to the doctor that a portion of the stylohyoid ligament that calcified had bone marrow in it.

The portion that was excised was 3.8 cm long, of a something that was greater than 6 cm, But the length is less important as the width, I had been told, which usually determines whether one is symptomatic or asymptomatic.

the recovery process took me 3-4 weeks following the surgery to regain my full energy levels, and I slept a lot the first week.

I will say, without question, having an elevated pillow helped immensely, as I could not for a few weeks easilly elevate my neck without experiencing pain from the incision site. I am grateful for receiving that advice. Make sure you have something in place to elevate your head, otherwise even getting up out of bed without pain will be a bit of a challenge.

The amount of pain I felt without aggravation was minimal. I still feel some pain, but Tylenol does help that when I do feel pain flares. I was prescribed more powerful pain medications, which I actually quickly discarded, as the stuff makes me immensely nauseous, whilst simultaneously being very addictive.

when I get the pain flare, the pain is probably a 2 or 3 on the scale. More of a minor annoyance that I can ignore than anything. Occasionally there is a little bit of a painful “pressure” that occompanies it, but often times I don’t even really notice it.

I was terrified going in, but I faced it head-on. My grandmother’s spiritual wisdom has given me a great deal of comfort, and, strangely, despite having been agnostic most of my life, it did produce a bit of a spiritual re-evaluation for me.

I thank all of you for your concern. It is my hope that I am able to recover more fully…

Incidentally, I’m finally having enough mental clarity to actually think of having a shot at being more functional. I don’t know - Maybe learn business and accounting skills to offset the fact that I still have good and bad days. My best days, I actually have much better mood than I used to… and then on my worst days, I don’t eat much, and have a lot of muscle-tension, but again… Mileage may differ.

@Michael123 I am grateful that I was able to make a positive impact in someone’s life. That means a lot, and I thank you for it. I sincerely wish for great success on your part. Don’t be afraid to ask questions from your doctor, and don’t be afraid of getting a second opinion. You will thank yourself for it. Best wishes to you.

[Michael123]

Ty​:pray: For your recovery. . Im just so glad everyone is having some relief right after surgery. My apointment coming up really soon.Willl keep you guys updated.Again just happy its people like us can come together and share.I was really feeling lonely with this condition now Im feeling Im not alone .

[hyperichard]

Good luck at your appointment (: @Michael123