Diagnosed after 2 years seeing Dr. Annino on Feb 27th, Possible IJV

My symptoms were also somewhat cyclical for many, many years. Until they became constant.

I wonder if I would be in better shape going into surgery (I’m extremely depleted now) if I’d had it the opportunity to have it before my symptom/clinical progression, including bilateral IJV compression and a host of autonomic nervous system problems (including heart rate issues) that are likely due to vagus nerve compression/irritation.

It’s not a thought experiment I engage in because I didn’t have the diagnosis and couldn’t have known surgery was an option, but I do think it’s a point worth considering/discussing with prospective surgeons.

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@Isaiah_40_31 Thanks for pointing that out. I hadn’t noticed that what I thought were the “lesser cornu” were a lot bigger than they should be. I’ll be sure to mention that to Dr. Annino on Monday.

Yeah, I started an episode yesterday after about a month of no symptoms, and needless to say, with how I’m feeling right now I’m convinced I need surgery at this point.

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Thanks for your insight. I’m sorry to hear your symptoms worsened and became permanent after many years, that’s one of my biggest fears right now.

I won’t allow this to go from cyclical to permanent if I can help it, so fingers crossed I can iron out the details for getting surgery on Monday.

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I hope your consult goes well, and that you’re able to chart a course towards effective symptom relief.

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Any news? How did you like Dr. Annino? We are scheduled to see him next week with our 18 year old son. He has bilateral calcified styloid ligaments and they measuee 5.7 and 5.6 cm. We are traveling a long way to see him. I hope your experience is successful.

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Hey, @Pcrowe, thanks for asking! It went well! Dr. Annino is nice and very professional.

It was evident from the get-go he has a lot of experience treating ES. We went over my history and symptoms, and he went through the CT Scan with me and quickly recognized everything I mentioned in my first post and the ligament calcification mentioned by @Isaiah_40_31 in the images prior to me pointing them out to him, despite the fact that two other ENTs and a Radiologist claiming my CT scan was 100% normal.

He even caught a thing I didn’t see. My greater cornu on my right Hyoid bone is in between my carotids which is not normal, and he will be reducing the size of it as well since it’s a risk for vascular symptoms. My right side is my symptomatic side, so we’re going that side first, and he said he could do both through the same incision.

He explained how he does the surgery and monitors everything during surgery and would remove the styloid above the IJV compression as close as possible to the skull base but explained that things get tight at the top and decides how far up he goes during surgery based on what his judgment, the ligament, and the piece of Hyoid bone.

When my previous surgeon suggested surgery, I had a lot of doubts and asked for time to think about it. With Dr. Annino, I felt comfortable enough to schedule my surgery by the end of the consultation.

My surgery is scheduled for March 17th. I’m still nervous, but the consultation helped to ease my nerves a lot, thanks to Dr. Annino for sure. My symptoms have been bad this week, so I’m excited to be free of these awful symptoms.

I hope everything goes well with your son’s consultation and he can get some relief from any symptoms soon!

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Also, now that I’m scheduled for surgery, I was wondering if there’s a compilation somewhere on the forum of some good steps to take to prepare my apartment for post-op. I found some thread mentioning ice packs and wedge pillows and was wondering if there’s a more complete list.

My new found friend who had surgery with Annino suggested renting a lift chair.

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@Matheou & @Pcrowe -

The typical things you’ll need post op are a wedge pillow (I bought mine at Bed, Bath & Beyond $25) & put extra bed pillows on it to increase the slope to close to 30º suggested by my ES surgeon, but there are better/more expensive ones on Amazon - for example: https://www.amazon.com/dp/B07ZP6SJDQ/ref=redir_mobile_desktop?_encoding=UTF8&ref=ppx_pop_mob_b_asin_title&th=1

or this one from MedCline: GERD Pillow: Acid Reflux Relief for Side Sleepers | MedCline

Costco in my area is also selling a memory foam wedge pillow at the moment for about $40.

I highly recommend buying 2-3 gel ice packs so a couple can be freezing while one is being used. They come in different sizes so a smaller size is better than large. You want it big enough to wrap around the curve of your neck so it stays in place. I bought mine at CVS & Walgreens.

I preferred the top one as it was more streamline. Icing for 15-20 min on with a thin washcloth or dishtowel between the ice & skin & waiting at least 45 min before icing again is ideal. In rare cases, ice didn’t work as well for a few members so they used heat. There is some trial & error in finding what’s most helpful w/ pain relief.

You won’t need to rent a lift chair because you’ll be mobile & able to get up & down from a regular chair, recliner, couch, bed, etc., once you’re home from surgery. The first day you’ll be loopy/sleepy from anesthesia, & possibly from pain meds for a few days, but it’s not so bad you can’t walk around the house & even do some light food prep.

Other things to have ready are soft foods for the first few days to a week. We have often noticed that the jaw is stiff/jaw joint on operated side is sore post op & swallowing can be a bit challenging due to a sore throat. Things like yogurt, smoothies (make sure to add some protein powder if you make these at home to add some staying power), soups (if they contain meat/veggies run them through a blender before consuming), mashed potatoes, mac & cheese, fruit sauces, hot cereal, etc. Some people have commented that sucking on popsicles was very helpful w/ the throat pain.

Rx pain meds are often very constipating so have a stool softener & laxative handy at home & start taking them daily as long as you’re taking Rx pain meds. I preferred to use CALM - magnesium citrate powder - because I could titrate it to the strength that worked best for me & not be subject to a pre-measured amount of medication in a pill/capsule.

I highly recommend staying very hydrated (60-70 oz of fluid/day - preferably low sugar) as this will help your body heal faster, & if you end up w/ First Bite Syndrome it helps reduce the pain a bit.

I expect others will add things that helped them.

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Matheou,

So sorry that you are going through this! I suffered with ES for 17 years and I was literally dying and nobody could diagnose me…the initial onset of ES happened to me on December 24, 1987. On December 8, 1987 I had just had a baby so, when I felt like a fishbone was sticking me on my left side, I was told that I was going through possible Post Partum Depression!

Yeah, right! I was so miserable and I was losing the battle with the pain. I went to so many doctors and none of them had answers for me and they just kicked me down the road. I moved to Oklahoma and it was then that I went to University of Oklahoma Hospital and it was there where I found Dr, Krempl. He was able to diagnose me with ES and I decided to do the surgery.

Yes…it was a very hard surgery and while I was recovering and in pain, I thought I had made a mistake because the pain was so unbearable but, through prayer and taking it one day at a time, I started to feel better each and every day. I am a Diabetic and I heal very slowly, After about 4 months of recovering, the poking in my throat stopped and I got stronger and stronger.

I made the right decision…My life became better and I was able to enjoy eating. Before the surgery, I was down to eating baby food. I NEVER ever want to live with the fear that I had to endure for 17 years,

Life is better and my advice to you is, let go of the fear and have the surgery so that you can have a positive outlook in life. Before I had the surgery, all I wanted to do was just go to sleep and never wake up. I am healed and life is so much better.

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Pursue your healing…ES will only get worse,

You might have to sleep upright in a recliner or on a couch. That’s what I did for about 4 months. It didn’t kill me! You do what you have to do for you. I was totally by myself after surgery because my sons were in school and my husband had to work.

It was hard but, I got through it. Stay close to God…

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So pleased that you’re confident and are ready to go forward with surgery. And that Dr Annino pick up everything on your CT!
There’s a surgery shopping list a member compiled, I think @Isaiah_40_31 has covered everything anyway, but just in case there’s anything different, here’s a link:
Surgery shopping list - General - Living with Eagle
Will make a note of your surgery date & will be praying for you!

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@Pcrowe Thanks for the suggestions. I had no idea those even existed until just now; I’ll look around nearby and see if they have them.

@Isaiah_40_31 I appreciate you taking the time to compile a list of things to have ready. It’s extremely helpful.

@Hadassa Thank you for sharing your story and words of encouragement. It helps a lot, I feel like I’ve made the right choice, and I am going to pray everything goes well!

@Jules Thanks for the link to the shopping list and your prayers!

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Update! I had surgery yesterday it went well. Dr. Annino resected my right styloid (4.5cm up to the top of C2) and stylohyoid ligament as well as the greater cornu of the hyoid bone (5mm), which was sitting on the carotid bifurcation, compressing both. The pain was pretty bad when I woke up, but menthol lozenges, 15mg of THC tincture, and Tylenol have helped a ton! (They gave me opiates but I’m trying to avoid using them if I can.)

Immediately after surgery, most of my symptoms were gone. I honestly forgot how it felt to swallow without pain, clicking, and everything being knocked left in my throat, and even the blurry vision in my right eye is already improving (I read the forum on chrome at 100%, clearly covering my left eye which was impossible prior to surgery.)

They had to move my hypoglossal nerve to get to the hyoid, so the right side of my tongue is partially paralyzed and numb temporarily. They said it should recover with time that the nerve was preserved, so I shouldn’t have any long-term issues. It’s a little hard to control swallowing due to it but I have been able to solid food with no issues.

I appreciate everyone’s support and advice leading up to the surgery, and all the post-op recommendations have been a life saver. On to recovery now; I’ll update after I have my follow-up with Dr. Annino on the 27th.

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@Matheou,

Great news that your surgery went so well especially since it was pretty extensive! Very awesome that you’ve noted significant symptoms reduction. Please be aware that some of those may come back for a bit once the operative meds wear off, but the good news is, over time, most if not all should disappear. I can’t remember if you have bilateral ES, but if so, remaining symptoms could be caused by the other styloid so don’t worry that the surgery “didn’t work”.

I had the same problem w/ my tongue post op but was told it was my glossopharyngeal nerve that caused it. I must say, it makes more sense that it was the hypoglossal. I’m glad you’re able to eat solid food already. That’s pretty amazing! I had trouble chewing (moving food around in my mouth) & swallowing for a number of months after surgery. Talking w/o sounding drunk was also a challenge. :joy:

Looking forward to your next update!

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Great news, thanks for letting us know how it went…I hope that you keep recovering well & notice symptoms keep improving. God bless, praying for you :pray:

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Hey, everyone! Had my appointment with Dr. Annino yesterday.

He removed my steristrips and said my surgical wound is healing nicely.

He told me the hypoglossal weakness should resolve within 6 weeks to 6 months and that it’s only considered permanent if it lasts more than a year.

We decided to postpone my second surgery until I’ve hopefully regained full function of my tongue to avoid the risk of having it happen on both sides (highly unlikely but better to be safe.)

My left side was largely asymptomatic prior and I didn’t even know it was long until I saw my CT scan. The only symptom I have is thumping pulsatile tinnitus at night (which seems to be worse now than it was before the surgery, I’m guessing my right was so bad I just hadn’t noticed my left I also think my left neck is just tight from the fact that it has been used more recently. So I’m hoping it doesn’t get much worse while I wait.

The post-surgery pain is almost completely gone and my laundry list of symptoms in my original post is almost completely resolved hoping the remaining discomfort goes away once I’m farther out from my surgery. (Only 11 post-op days currently).

I’m back to non-weight-bearing normal activity for the most part, glad recovery hasn’t been too rough.

Thanks, everyone, I appreciate everything this group has helped me with and will definitely give back in any way I can to help other members.

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It’s so great to hear how well your recovery is going! Sorry for the ramped up pulsatile tinnitus but I think you hit the nail on the head regarding why you may be noticing it more now. Additionally, you do have extra swelling in your neck at the moment & things may have shifted a bit w/ one styloid gone. Those two factors could be contributing, too.

I hope your healing progresses consistently & your tongue function returns to normal soon. I know from experience how annoying a half functional tongue is!

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That’s great to hear @Matheou! so pleased that the surgery has helped you, & I think it’s sensible to wait a bit for the second surgery, I hope that side doesn’t ramp up too much…take care :pray:

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