@Chrickychricky Hi Chricky, I remember you commenting once about eustachian tube dysfunction. What symptoms did you have? I’ve had ear and sinus issues for like a decade. Runny nose, wax issues, and now constantly dry ears with discharge. Any relief after your first surgery? Thank you
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@Andy89316 It feels like my ear is full all of the time, like the eustachian tube won’t stay open. I think I saw that you had a tongue-tie release? I did as well, about 5 years ago and then my symptoms started. I wonder is having all of that tension from a grade 4 tongue tie most of my life contributed to the calcification of the styloid ligament. Curious.
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That’s realy interesting @Chrickychricky , I wonder if it did play a part…
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Wow, a grade 4! I’m sure that changed a lot!! I’ve seen some in my FB group. I had a 2/3. I was hoping a lot of my symptoms would go away after therapy and release, but of course they did not. My DDS thought my styloids grew from clenching a lot…which maybe I did to breathe better?? I dont’ know, but an interesting correlation for sure. Did you mention it to Nakaji? It is an under-diagnosed condition in adults, maybe something worthy of research
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@Isaiah_40_31 Got referrals from my local ENT today. Coughlin, Old, Kremple, and Nakaji. Probably between Coughlin and Old. Kremple is a maybe, but I think equal with the other 2. Old may have done the most surgeries though between the 3; he should get all my imaging and reports tomorrow, then hope to hear from them Friday. Nakaji is mostly just for diagnostic review. It will be a balance of who can answer those questions y’all recommend the best and what is the overall timeframe. I’d like to do the 2nd side like 3 or 4 months after the first.
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That’s great news @Andy89316! You’ve sure been proactive about getting in touch with the doctors you’re interested in seeing! Good job!! Friday might be a bit fast to hear back as some offices tell patients it will be two weeks after imaging/reports are received before they’ll hear back, but it would be great if any of them do get back to you by Friday. I look forward to reading your updates once you do hear back.
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That’s good, I hope you get good answers, let us know how you get on…
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@Isaiah_40_31 Mostly a good day, but sorta interesting too. Drove to Omaha, thought I had plenty of time, but stop in KC took longer than expected. So had to do 15-20 over the speed limit for 3 hours…not my proudest moment, but I wasn’t going to miss the appointment with Coughlin. I got there a little late, but in time.
I was mostly impressed. He said he has done probably at least 100 or more, covered the risks, did warn of the common recovery issues, and did mention 1 patient he had this year that had partial paralysis after (but it was improving, but the patient stopped treatment at the facility). He stated he takes it off at skull base. The time he likes between surgeries is just a minimum of 6 weeks. He was familiar was Drs. Old (OH), Constantino, Cognetti, and Hackman.
He did a physical exam. Confirmed symptoms. I kinda narrowed it down to painful swallow, voice issues, headaches, and ear/neck pain. At first, he was not actually keen on surgery. He is not 100% confident it will actually fix all my issues. He cites the ear pain and headaches as not classic ES. He those symptoms are caused by my nerves in the area having problems. Which, I conceded could be true, but that I am okay proceeding with surgery due to the other symptoms and knowledge that the styloids can interfere and agitate nerves. He was agreeable to do the surgery. I figure, I can work with my local neurologist if needed as I recover, but I think for long term health the styloids need removed.
I am scheduled for left styloidectomy on 11/11. The right will probably be mid January. So, hopefully mostly all good by April. I will be able to go home after a couple of hours post-op; a relative is driving me to and from. I am still waiting to hear from Old, but unless he says something very influential I think my plan is set. I do though need to send his nurse some of the questions just to clarify. Are nerves monitored? Can he notice IVJ compression? (Not noticeable on imaging, but I would want to know if he sees any issue) Are calcified ligaments removed? (don’t think I have any, but should ask)
He does dissolvable stitches with glue. No drain or steroids for swelling. Most patients are fine with Tylenol for pain. Its an hour procedure.
Feels sorta incredible to be here. I get his concern, but I just can’t go on like this and am pretty dang confident about a good outcome.
Side note: my new local ENT noticed I have a small hole in my sinus and my nasal passages are narrow. I am currently using Nasonex and it is helping. She did though recommend a minor surgery to repair the hole and clean my septum area. I will probably do that after these surgeries, the recovery is kinda tough she says, but just a week.
Please let me know what you think and again thank you for all the Help. Bens Friends is getting a good donation tomorrow (can you link the donation page please)
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Hi Andy89316 -
Thank you for your very thorough update! Dr. Coughlin sounds great! The only bone I’d pick with him is that ear pain & headaches absolutely can be an ES symptom. They both can be caused by trigeminal nerve irritation (I’ve had those); headaches can be caused by the trigeminal nerve or, as previously noted, IJV or ICA compression. If he removes your styloids to skull base, there’s a good chance your ear pain will go away over time.
Do you know what was paralyzed? A temporary one-sided lower lip droop &/or eyelid paralysis on the operated side can occur when the facial nerve is irritated during surgery. I woke up after my first one w/ half my tongue paralyzed because my glossopharyngeal nerve had been wrapped around my styloid & had to be moved so the styloid could be cut back. That’s the most common reason for post op paralysis - a nerve needing to be moved out of the way during surgery to protect it from major damage. Nerves are very sensitive & just don’t like to be touched.
Do you think you’ll see Dr. Old if his office gets back to you?
WOW! THANK YOU SO MUCH!! Ben’s Friends “operates on a shoestring” & finances have been a bit short this year. Your donation will be much appreciated!!
I’m also happy to know we’ve been helpful & encouraging to you along your ES journey. Looking forward to hearing about your surgery on 11/11. I’ve put it on my calendar so I can pray for you then.
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Brilliant that you felt comfortable with him as a surgeon & that he’ll help! Good that he explained the risks with you; we have had quite a few members who’ve had facial muscle weakness due to irritated facial nerve, tongue issues with irritated hypoglossal nerve & arm/ shoulder weakness through irritated spinal accessory nerve, but these are usually temporary & resolve with time, & occasionally with PT. I expect that he probably monitors nerves, most doctors do, but a good idea to check.
And glad that BF’s have been helpful & you’re being so generous 
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I’ll update Dr. Coughlins responses to the questions and when I hear back from Dr. Old. I have to have my primary clear me for surgery. I also need to ask Coughlin about restrictions post 2nd surgery. At work I have to be able to lift like up 75 lbs. Plus I’d like to be able to workout, but don’t want to compromise the recovery
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@Isaiah_40_31 I would consider a telehealth with Dr. Old. Unless he tells me something very influential when they call me, hopefully this week, I don’t see any point in flying there just a for a consult and I don’t think his surgery timeframe would be any quicker. I think they are both good Drs. and Coughlin is in driving range. The patient had partial face paralysis. He said it was the first time a patient had this issue with him.
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There is another Doctor in Ohio that does Jugular Eagles as per his office but I was told he can’t do a telehealth visit for the first visit. Dr. Lamarre at Cleveland Clinic. I am impressed with all the due diligence you are doing. It will be helpful for future patients! Please let us know what Dr Old says about his surgeries.
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It will be interesting to see what the doctors say about post-op recovery- as you’ll be using neck muscles when you lift , my personal opinion is to give it 4 weeks if you before lifting at least. I was lifting a hefty toddler with the voluntary work I did when I had my surgeries & gave myself that time to heal properly. On the whole we do see that many doctors don’t understand the recovery and often tell members they’ll be back to normal within days or a week, & that’s not often the case!
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@Isaiah_40_31 Got a reply back from Dr. Coughlins nurse and not thrilled with the answers. I will put the question and then the answer.
Are nerves monitored? If not, can I request it? no, this is not indicated (I don’t know what ‘‘not indicated’’ means in this case and I think since nerve damage is the one of the risks in this surgery that would be standard or request-able)
Can he notice IJV compression? Does he agree it does not seem present in the imaging?not shown on scan (agreed, my question was more ‘can he notice during surgery’)
Are calcified ligaments removed? Don’t believe I have any—that is actually what is removed; your calicified styloid process (duh…is there maybe a better way to word that? I’m referencing those extra little ligaments that are visible in scans, I dont see any in mine)
Recovery time? 2 weeks (hard disagree, I’m planning on 8-12, I’m not risking my long term well-being to get back to work)
Still not heard back from Dr. Old, which is frustrating because they reiterated ‘a few days’ is all they need to review imaging. I do plan to talk with my Neuro about nerve blockers at my next appointment because I’m wondering if it would make recovery more comfortable. I feel like a lot of my most annoying symptoms are because of nerve irritation.
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@Andy89316 - Not all doctors do nerve monitoring. Some do enough ES surgeries they feel comfortable about where the nerves are in the neck so don’t bother. I do agree with you that it should be request-able in cases where a patient would be more comfortable having it done. Usually there are only a few nerves monitored i.e. not all of the cranial nerves that can be affected by ES as some are too deep to monitor. The facial for sure, & trigeminal & possibly glossopharyngeal are the ones I’d think would be monitored.
Doctors who don’t see IJV compression on a scan won’t look for it during surgery which is a bit of a travesty, thus the reason to be sure it’s not a problem. It’s not worth the extra testing to diagnose it unless a person has symptoms consistent w/ vascular compression i.e. either IJV or ICA.
This question is ambiguous for some doctors as they consider an elongated styloid to be caused by calcification of the stylohyoid ligament & not just the styloid alone elongating. We’ve gone round & round w/ the “which came first, the chicken or the egg?” scenario here. Does the styloid elongate on its own or is it the s-h ligament calcifying which causes styloid elongation. I think both scenarios can occur. Removal of bits of calcified ligament that exist beyond the end of the styloid usually doesn’t happen, only if there’s a separate, significant section of calcified ligament beyond the end of the elongated styloid is it necessary to have it removed. I have small bits of calcified ligament down by my hyoid bone that I suspect are still there, but they have not been a problem.
Dr. Coughlin has demonstrated by his answer that we need to re-think how we word the question about calcified ligament removal.
I applaud you for being conservative w/ your recovery time before starting back to work. That should also go for hard gym & aerobic workouts, strenuous housework/gardening, etc. Your body will thank you for giving it the extra time to heal before jumping back into life full speed ahead!
Be a proactive patient & call his office again on Monday to ask if Dr. Old has reviewed your scans yet. The polite “squeaky wheel” can get “the grease” sooner that way than by stewing about a lack of response.
Some of our members have gotten good relief from nerve blocks, some have gotten no relief, & some have had symptoms worsen from the extra pressure the injected meds put into the area. I hope your neuro is honest about that when you talk to him/her.
You are among friends, as many of us had/have a number of awful nerve symptoms caused by ES. That’s where getting the irritant (styloid) removed (like removing a sliver - too bad the surgery isnt that simple! 
) can help stop the irritation & begin the healing.
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@Jules I followed up with Dr. Olds office because I talked with my insurance and there was a little mixup that Methodist Hospital is out of network, but I double checked and its IN. I actually scheduled an appt with Dr. Old, but will be calling to cancel, not sure what happened, but idk if I can talk with him on the phone and the first available was Dec 15.
I don’t think I have mentioned this yet, but I am also having nose surgery. A septoplasty and turbinate reduction so I can breathe better. I’m planning on doing this between the 2 surgeries, so mid-December. Both Drs are okay with this I believe, but I need to double check. Its gonna be an interesting winter!!
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Goodness, you are going to have a busy time! That’s alot to need to have done… 
@Andy89316 - I had a turbinate reduction in 2019 & it wasn’t a big deal to recover from, however, the addition of the septoplasty may make it a bit more of a challenge. I hope the nose surgery goes very well for you.
I also hope Dr. Old will do a phone or Zoom consult so you don’t have to travel to see him.
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@Jules Hi to both of you. I’ve been re-reading recovery posts the last couple days in preparation for the 11th. My only question is about massaging the surgery scar. Is that something we can do or do we go to a professional? I’m for sure planning on taking at least 2 months after the 2nd surgery before returning to work, probably 3+ honestly, it seems a lot happens in that 8-12 week window and better to take it slow. Thanks.
Edit: Also, how long for soft foods?
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