Appts set with Hackman and Chan - several questions

I have several questions so I appreciate any info you might be able to share.

I have initial appts set with Dr. Hackman and Dr. Chan in Dallas mid February. (Just a note that I saw Dr. Chan in 2016 and she didn’t feel my symptoms matched Eagle syndrome. My pain dr sent 2 patients to her with positive outcomes so I’m going back). My pain dr performed a Glossopharyngeal block about 1 week ago which resulted in pain relief for several hours confirming Eagle Syndrome. Plus the locating of the left styloid in my throat clinches the diagnosis as well!

  1. I read about a carotid version of Eagles and others talk about vascular. Not sure if that is determined by the CT or symptoms. I am going to list my main symptoms and want to understand if this means I have compression of carotid, etc. These symptoms all began within a few weeks of each other about 17 yrs ago (2006), so I know they are related: Trigeminal neuralgia, glossopharyngeal neuralgia (constant extreme ear pain), tinnitus, migraines, TIA’s, pass out when vomiting. (No throat pain only slight swelling)

  2. In 2012 I was to get a surgery because the dr thought I had Geniculate Neuralgia. I was intubated then went into cardiac arrest therefore never getting surgery. I’m wondering if being intubated could have caused the movement of the styloid in my throat and the result was cardiac arrest?

  3. In 2016 I had a ENT surgeon inject lidocaine in my eardrum as a diagnostic tool to see if the pain went away, it didn’t. But a few days after that procedure the left side of my face began trembling so I was given a steroid. Then all the muscles in my upper body began trembling both day and night. The face stopped but the tremors continue from my neck down to including my upper body. The tremors occur as I’m going to sleep, while sleeping, and a few minutes once I wake. Externally my husband said it feels like the rumble of a diesel engine, to me it feels like very fast muscle contractions (not the type where a body part jerks). My neurologist could visibly see the tremors and diagnosed me with essential tremors. Propranalol helps. I’m hoping this will go away with surgery. Anyone have something like this or any idea what this is?

  4. I have a CT with contrast from 2015. Should I get another before seeing Dr Hackman and Chan or wait until I see them?

Appreciate anyone’s insight!

Hey there,
I am returning home from surgery w Dr. Hackman in Chapel Hill this past Monday… So I will leave you a quick note (as am a bit loopy from meds for travel).

First of all so sorry for all your suffering. I hope that there is relief in sight.

For Dr. Hackman, I had a CT scan with contrast sent to him.

With your symptoms I would get a CT with contrast. My internist ordered the scan…but we have a 25 yr history… seems many won’t do it. Not sure if Dr. Hackmans will order prior to seeing you… (?).

Dr. Hackman will have his radiologist read the scans and then will go over the results with you.

From my experience, it occurred to me late in the game, that we really need three/four doctors involved in this type of situation. Ideally, you’d like a neurologist to understand what is going on, a vascular/neurosurgeon to address compression, and then a skull base surgeon who will navigate the space to get the styloid and offending structures out (and throw in a neurosurgeon).

This doesn’t happen unfortunately except in a couple of rare cases (Hepworth). It is hard enough to find one doctor who knows what we’re dealing with. Much less three that will work in tandem.

Others will chime in and help with your questions. All the best … )))

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@Laluloh - The carotid variant can be seen on a CT scan with contrast if the styloid is in the position where it’s compressing the ICA during the scan. Unfortunately, diagnostic CT scans are usually done w/ the head in a neutral position (i.e. looking at the ceiling) which sometimes doesn’t show compression because it occurs when the head is turned left/right, or looking up/down.

Re: symptoms - your neuralgia symptoms are likely from the styloid irritating the nerves you mentioned. The migraines could also be nerve related, but in comgination with the TIAs & passing out when vomiting, it definitely sounds like the ICA is being compressed or irritated by your styloid.

I don’t know the answer to this question, but can speculate that being intubated moved your styloid into your vagus nerve which responded by shutting your heart down. I’ll include an image of the vagus nerve incase you haven’t seen it on our forum so you can see how extensive it is in the area of the heart.

For what it’s worth, I also had pre-ES symptoms - BPV & a serious problem with choking on food when swallowing i.e. needed Heimlich Maneuver to stay alive. These two problems occurred several years before my pain symptoms showed up.

I don’t know what this is or how injections into your ear + steroids could have caused it. It does sound like an extreme reaction to irritation the lidocaine shot may have caused to your nervous system. Have you had lidocaine since then, & if so, did your tremor symptoms worsen? I did note you said they’re somewhat controlled at the moment.

Getting another CT w/ contrast now would be an excellent idea since things have most likely changed somewhat significantly in your neck since 2015. I think having an updated scan will be very beneficial for you. If you can get it done dynamically, that would be even better.

I hope both doctors are willing to help you. It would be great for you to be able to stay in your home state for surgery!

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Thank you for all the information! I have had lidocaine several times since 2016. Anytime I get a nerve block Trigeminal and the recent Glossopharyngeal my Dr uses lidocaine and a steroid. These tremors have been reduced to mainly when I sleep which can make sleeping impossible if I don’t use propranolol. The muscle tremors make the ear pain worse because it feels like they are whacking the glossopharyngeal nerve. My pain Dr said it sounds like my fight or flight response is getting activated and adrenaline is getting released. He said this is typically not functioning when one is asleep. It is curious that the propranalol lowering my heart rate helps reduce the tremors. My heart rate is typically in the 50’s when sleeping even without the meds. What makes it better is if I don’t eat for 7 hours before I sleep and take propranolol. I discovered the not eating thing by accident but it definitely helps. It’s a strange thing but hoping it goes away with surgery.

Fortunately I have a pain dr and neuro that will order any testing I would like to prepare for the surgeon appts. I just wasn’t sure if I’m supposed to wait until I meet with the surgeons to find out what’s needed or come with updated labs.

Thanks so much!

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Thanks so much Leah! And I wish you smooth days ahead!! I fortunately have a decade+ relationship with my pain Dr who I see monthly, a primary, and neurologist. So whatever testing I need ordered they will get it done, I just need to let them know what I need. Yes I was hoping to see Dr Hepworth but he’s not taking patients at the moment. If that changes in the new year I will make an appt. Appreciate you responding in your present state.

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Hope that you recover well from your surgery :hugs: :pray: :bouquet:

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@Laluloh - If it is a fight or flight response that’s triggering your night time tremors, it would be worthwhile getting your cortisol levels tested over a 24 hr hour period. This is done w/ an at home test kit & uses only saliva samples you provide various times of day & at night. I mentioned in another thread that I took this test due to sleep issues & found my cortisol is high at night when it should be low & low during the day when it should be high. I’m now taking an OTC cortisol reducer at night which has helped tremendously with my sleep.

Fight or flight is also involves the vagus nerve so it’s entirely possible the tremors will stop or reduce significantly once your styloids are removed.

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I’m so glad your surgery is behind you and you’re on the road to healing, @Leah. When you feel up to it, we’d love to hear how everything went for you while in NC.

I’ll be praying for a complication-free recovery.

:hugs: :pray:

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Thank you @Isaiah_40_31 ))) I have done better than I expected in some ways and challenging in others (although nothing terrible). We drove 8 hours yesterday which was day 5 from surgery. Only left as airbnb was not available for longer…I had in mind to stay longer if I thought was necessary… and didn’t expect as much traffic on our ride, so in hindsight, would have stayed until at least tomorrow.

Paying for that long drive today. It is the worst day for pain but haven’t taken oxy yet today. I took one each night Tuesday - Thursday and then 3 (1 every 4 hours) to get home yesterday. Have all the usual suspects in my system (Ibuprofren (asked Dr. H if could start back), extra strength tylenol, gabapentin)… but succumbing to taking an oxy now. It is very effective and quick at pain relief. Such a bummer regarding it’s addictive properties. Seems to me, that we (collectively) don’t have good options for pain control after surgery.

EDIT to add @Isaiah_40_31 s inciteful comment … "In defense of oxy - it does work better than the OTC pain relievers & isn’t addicting over the short-term, but can be with long-term use. Since most people only need it during the first week post op, the bigger challenge is managing its negative effects on the digestive tract. If that part of the equation is dealt with early on, then taking the oxy every 4 hrs during the first week of recovery shouldn’t be a problem. " TY @Isaiah_40_31

Speaking of that, overnight in the hospital, they were dosing regular tylenol every 4 hours and then I had to ask for oxy. Seemed really ridiculous considering the incisions in my head and neck :neutral_face:. I told them it was not doing it and they doubled the oxy which I didn’t really like either …As I would start to fall asleep, my oxygen levels kept dropping and I had to ask to be monitored and then when it would drop no one would come. I suspected it was due to oxy and gabapentin but Dr. Hackman said was leftover from the anesthesia.

So I just stayed awake all night and tried to ice. Night shift staff were very elusive and not helpful… literally. Luckily I was able to leave by 11 am, which was 24 hours from when I checked in and that was wonderful.

My left styloid and at least part of the stylohyoid ligament was removed. The ligament was under “significantly unusual tension” and Dr. Hackman said both were contributing to my problems. The ligament to the jaw was also very tight. It has felt like I have had a guitar wire running from under my ear to under my chin. So as things calm down, I’ll see how things are. I am expecting improvement but will have to wait a bit to see how it lands.

I will add this and other notes to my post when I get this inflammation down. Back at you all shortly ))).

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Thank you for the update, Leah. I’m so glad you’re home safely & recovering where you have more control over your environment, medications, & ice. In defense of oxy - it does work better than the OTC pain relievers & isn’t addicting over the short-term, but can be with long-term use. Since most people only need it during the first week post op, the bigger challenge is managing its negative effects on the digestive tract. If that part of the equation is dealt with early on, then taking the oxy every 4 hrs during the first week of recovery shouldn’t be a problem. I didn’t start spreading out my Prednisone till sometime in the second week post op (tried to during the first week & put myself in a world of hurt so decided sticking w/ the prescribed schedule was best).

Looking forward to future updates & am hoping for great news as your inflammation settles down. :hugs:

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Thank you! I will try the cortisol test. Appreciate the insight.

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Glad you’re home, take care of yourself, praying you heal well and the surgery is successful! :pray: :hugs:

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Thanks @Jules… so good to get it behind me. )))

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@Laluloh - I would call Dr Hackmans office and speak to his scheduler for anything you may need. I would think he would need an updated CT with contrast. If he knows in advance he could schedule it for the same day. you don’t need any other doctors. He will read the CT scan. He is a skull based specialist so he is very skilled in taking out styloids and moving through the nerves. I would ask Hackman about your cardiac arrest. My carotid artery was compressed but once the styloids were out my symptoms went away. I can’t say enough about him. He does bilaterial removal weekly for years and not many surgeons are confidant or skilled enough to do both at the same time. People can say all day long that this is too dangerous but as of yet he has not had any permanent nerve damage. I am sorry you have had such a bad time and hope you get relief soon with whom ever you feel most confidentt in.

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@adriene61 So good to see you. How are you??

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I am doing good as far as Eagles syndrome symptoms. However I have something attacking my central Nervous system that they are trying to figure out. My pulse is running in the low 40’s. The doctor has check my heart out and all is good but the nerve that controls the pulse rate isn’t regulating it properly. He said we are probably going to have to put a pacemaker in to regulate. I hope you are doing well.

That’s a worry @adriene61 , I hope that they can improve things for you :hugs:

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I’m sorry to hear you’re having trouble w/ your heart rhythm (which dictates your pulse rate). I hope a pacemaker is tremendously helpful for you, @adriene61. I also want to thank you very much for introducing us to Dr. Hackman. He has helped many of our members at this point and we’re very grateful! :hugs:

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Thank you!

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@adriene61 I’m so sorry you’re going through this. I am so hopeful for you. I work with Medtronic, one of the medical device companies that make the pacemakers. If you need a pacemaker, ask them if they are using a Medtronic pacemaker. If so, I can find out which clinical specialist would be in your procedure and ask to set up a call to answer any of your questions :-).

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