Surgery tmrw (9/29) with Dr. DeLacure

Greetings folks,

Surgery tomorrow at NYU - fingers crossed! I am cautiously optimistic though at this point, it’s so hard to imagine living without all of the symptoms that ES causes me. It’d be a dream.

Been feeling pretty terrible with intense ear/head/throat aches that completely knock me out for hours of every day. I find myself just staring off into space, which is not like me, because I just don’t have the energy to do other things. I’ve even noticed a few new symptoms that are concerning such as a buzzing sensation in my face when I lay down and also some pretty intense fogginess, slowness, and forgetfulness. It’s so hard to describe to my loved ones that, at 38, I just don’t feel vital right now. But I take a tremendous amount of comfort that you all know what I’m going through.

I appreciated both of my pre-surgery conversations with Dr. DeLacure. He is thoughtful, straightforward, willing to discuss how he has changed his technique over the years to better his outcomes, and willing to answer questions without promising certainty. I will definitely keep you posted after surgery on my experience with him and his team. So far so good.

Thank you all for sharing your experiences - I’ve been reading along and thinking of each of you!

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I am very new to this group, but I just wanted to wish you the best of luck on your surgery tomorrow. I am sure you are in good hands.

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EagleInBrooklyn -

I’m so glad you’re seeing a great surgeon & you’ll be on your way to recovery from ES starting tomorrow. You are definitely in good hands w/ Dr. DeLacure. I will pray for your surgery to go perfectly & your recovery to be complication free.

Please remember the first week post op is the worst as far as pain & swelling go. Also pain meds cause constipation so make sure you have a remedy for that at home or have someone pick up whatever would work best for you (I favor magnesium citrate in capsule or powdered form). There are many products on the market that work well. Keep your head elevated to 30º+ for the first week or more & ice your neck 15-20 min on & at least 45 min. off as many times a day as you need it.

We look forward to hearing how everything goes for you & to encouraging you as you recover.

:blush: :hugs:

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Glad that you’re able to have surgery, & hope that it goes smoothly, I’ll be praying for a quick recovery & successful surgery. when you’re able let us know how you are. :hugs: :pray:

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Best of luck.
I am very curious to hear about his evolving techniques. It is so interesting that he was willing to discuss that with you. Prayers for peaceful healing.

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Day 1 post surgery -

I had a very good experience with all the teams at NYU Langone, especially when dealing with some pretty terrible post-anesthesia nausea. The PACU folks told me the surgery went well but I didn’t get to speak to the doctor afterwards because he went directly into another long surgery. I’ll call the office today and see him for a follow up next week.

I had the left side done - immediately I notice that I no longer have an intense boring-type pain and pressure in my occipital and temporal regions! In fact, my left occipital area is not tender to the touch at all, which hasn’t been the case for years. What sweet relief even amidst deep soreness in my neck and jaw. I imagine it will take a minute before I can tell if some of my more severe neck and jaw symptoms have been resolved due to post op soreness (and just general healing trajectories) but I will say that I used to get a crunching sound when I move my jaw forward - no longer.

So far no FBS, facial drooping or numbness that I can tell.

There’s a host of symptoms that are in the to-soon-to-tell category but that seems pretty normal to me. Overall, I think I feel pretty good considering my surgery was less than 24h ago. Have only taken ibuprofen and used ice since I got home. Slept terribly but that’s not too surprising - not so easy to sleep half sitting up!

I’ll keep you all posted! Thanks so much for your time and attention. It’s been helping since the first day I found this forum, and still does.

My best from Brooklyn!

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Shayney, right? I was fascinated. I definitely don’t want to butcher Dr. DeLacure’s words in writing or in public since he was describing things that I have a very limited understanding of but I’d be happy to have a private convo with you. For me, his ability to speak to his process honestly and tell me how he has actively worked to reduce FBS (he was careful to tell me it was still a risk but also said he hasn’t seen a case in a few years) gave me so much confidence in him as a professional.

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WOW this is great Brooklyn! So glad to hear you already seen improvements so quickly and in the midst of immediately after surgery. This really helps others that are on the fence and scared about taking steps to go for surgery. Take care of yourself these next days.

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Hi EIB!

So glad all went well. WOW!! Ibuprofen & ice & that’s it?!? I’m impressed! I took Percocet for nearly 6 weeks post op (very infrequently in the last couple of weeks). If you were going to have facial droop, you would have come out of surgery w/ it. FBS often doesn’t show up for a week or so after surgery then one day…SURPRISE!! That’s not to say you’ll get it. I’m glad Dr. DeLacure has a technique for helping to avoid his patients ending up w/ it.

Great news that you’re already noticing positive changes, & I guarantee there are more to come over the next many months. Just a reminder that if you have bilateral ES the remaining styloid can begin announcing it’s presence more loudly as your recovery progresses.

I totally agree!! Sleeping nearly sitting is not great but you kind of get used to it after awhile. I had to keep my head elevated for a number of weeks post op to keep my throat from feeling like it was swelling closed. It was such a relief when I could finally lie flat again!! :zzz:

Just remember to take it really easy for at least 2 weeks then enter back into your normal schedule gradually while listening carefully to your body & resting often.

:blush:

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So pleased that you’re noticing improvements already! That’s great! Just be prepared for ups & downs, will be praying for a smooth recovery, take care & God Bless :bouquet: :hugs: :pray:

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Hi all,

I’m two weeks out from the removal of my left styloid, though this pic was taken at 10 days.

True to all of your accounts, the intense pain and swelling really kicked up after day 3 and lasted until day 8 or 9. As of today it’s been two weeks exactly and I still have a bit of pain/swelling on the upper portion of the incision toward my ear and in the very back of my throat that gets activated when I yawn. The upper part of my incision is very hard to the touch as is right under my ear. I have a fair amount of temporal and mandibular fatigue and tension but I haven’t had any nerve-type pain or FBS to date. Though I do have buzzy feelings in my face (mentioned in another post) that haven’t let up. Though Dr. DeLacure didn’t know what to make of the buzzy feelings, he didn’t seem concerned. He also said everything else was normal, and that I can expect to feel a bit out of sorts for at least another two weeks.

I’ve made it through the entire recovery without any of the prescribed meds and was down to 600mg ibuprofen twice a day by day 10 with 5mg of cyclobenzaprine (muscle relaxer from a previous prescription) to relax my neck muscles and help me sleep at night. I used the wedge for three nights but found that it really aggravated a herniated disk in my lower back so I stopped - a real toss up for me because it really did help with neck pain at night.

I have a fair amount of ES pain relief since the surgery. The following symptoms have improved significantly:

  • nagging left side neck and occipital pain and tenderness
  • deep interior boring headache
  • crippling left side temporal headaches upon waking
  • difficulty breathing
  • anxiety
  • inconsistent slightly blurry vision
  • palpitations
  • clicking when I swallow

While none of the aforementioned symptoms are gone entirely just yet, overall I think things are moving in the right direction. Now that I am through the worst of surgery recovery, I feel comfortable saying I’m glad I did it.

One more thing I wanted to note for you all. Dr. DeLacure did not remove my s-h ligament. We had multiple conversations prior to the surgery about this and he stated that, in my case, he wanted to make a game day decision. While it would have been comforting to hear that he was going to remove it no matter what, I appreciated that he favors using his expertise over a one size fits all approach. On game day, he chose to leave it in. It is what it is! Only time will tell, I suppose. All that said, he did take the styloid all the way back to my skull base.

Ok you all, thanks for reading! Happy to chat more if anyone has questions or thoughts. So appreciative of this community. I’ll continue to keep you posted.

My best from Brooklyn!

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Hi EagleinBrooklyn!

Thank you for this encouraging report! I’m so glad for the positive changes you’ve seen & especially that your post op pain was manageable w/ ibuprofen & no Rx drugs were needed. That’s fantastic!!

Your incision looks absolutely great!! It will stay swollen & firmer in places for awhile yet, but as time progresses & swelling recedes, those things will go away. You can try gently massaging it w/ Bio Oil or coconut oil can help loosen up the area.

I can relate to the buzzy feeling in your face & am guess it’s nerve related & will also subside as you heal. I’ve recently started getting acupuncture to help w/ bad tinnitus I have from Meniere’s Disease, but have noticed that a day or so after the acupuncture, my chin starts feeling intermittently “buzzy”. It’s pretty weird. All I can figure is that some nerve affected by the acupuncture needles is also associated w/ my chin. The feeling does go away after several days but starts up again after the next session.

As far as the s-h ligament goes, it really only needs to be removed if it’s got calcification on it. If it’s “clean” then leaving it in place is fine. We will assume yours was pristine so didn’t need to come out.

:blush:

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So glad that you feel having surgery was the right decision! And very pleased that you’ve seen improvements already, hopefully you’ll see more as you heal in the weeks ahead.
As Isaiah says hopefully your ligaments weren’t calcified; mine weren’t so were detached from the styloid & left in.
Will keep praying for more improvements, just make sure you don’t overdo things as you heal, it’s easily done & can set things back!

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Hi! I’m glad your surgery went well and you did not have to take too many pain meds! I have an appointment with Dr. DeLacure in a couple of weeks. My worst symptoms are pain in the back of my head the side of my neck near my temple, cheek and ear. And also constant pain above my eyebrow. I feel very anxious about all of this. How are you feeling now? I had a few more questions if you wouldn’t mind answering, if not don’t worry about it and just take care of yourself! I was wondering how many of these surgeries has the doctor done? What is FBS? Is the surgery very risky? I worry because I have a vascular symptoms also like vertigo, nausea and black out feelings in my head etc. No fun! Thanks and feel better!

Chasingophelia,

FBS is First Bite Syndrome which is a somewhat common side effect of having surgeries in the neck & jaw areas. It’s caused by “over-excitement” of the parotid gland when you first start to eat. It causes shooting pain in the jaw/cheek area of the face for a few seconds when you take your first couple of bites of food then goes away. Some foods are worse for causing FBS than others. I’d guess about 1/3 of our members have gotten FBS post op. It usually goes away w/in 2 weeks to 4 months after surgery but sometimes hangs on longer. It does become less intense over time.

As far as surgical risk goes, there is risk w/ any major surgery. Having surgery done by a doctor w/ lots of experience in the area of the body concerned is very important. I believe Dr. DeLacure falls into that category. Your questions are good ones & you should ask them of Dr. DeLacure when you see him.

Having your styloid(s) removed will allow your compressed vessel(s) to recover & the feelings of vertigo & blacking out will go away. Compressed blood vessels can take a little time to decompress post op so symptoms may linger for a week or two as the vessel re-opens. If you have bilateral compression, it will require that the second styloid is removed before your symptoms will totally subside. Occasionally, a compressed vessel requires stent placement to help the vessel stay open but this is very rare. Your nausea is likely related to the vertigo so when that’s gone, the nausea should go, too.

Thank you so much! So helpful! It’s just all so new to me!

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