@Jules thank you!
@Ddmarie thank you!
Any updates for us? Just got my bilateral sryloidectomy with Hackman yesterday. Have some swelling and numbness right in my ear canal and my jaw hurts when opening my mouth but other than that I feel pretty damn good!
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@Msdstc WowâŚHappy to see the operation went smoothly. Too toooo early to ask this but did you see any immediate improvement on symptoms. Since we have similar symptoms, I am very much interested in your case, specially visual & cognitive issues.
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Msdstc,
Iâm so glad your surgery is done & youâre doing well. Please remember youâre still on your âanesthesia honeymoonâ. Post op swelling will begin in earnest in another day or so & will last 3-4 days or maybe more since you had bilateral surgery. Dr. Hackman doesnât routinely Rx a post op course of prednisone so a number of our members for whom heâs done surgery have had to ask him for that during the first post op week. If you get very uncomfy & ice /pain meds arenât helping, please try to get yourself an Rx for prednisone. It will help reduce your swelling significantly.
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So happy to hear that you are feeling well!! And glad to hear you are on the other side of surgery! Are you staying in NC? Or are you home? I have my appointment with Dr Hackman in august so flying down for that. Hoping he will schedule surgery before the end of this year!
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We stayed a night at a hotel, now driving back to Florida for a week and a half. Then flying back to Boston haha. Iâm feeling pretty great. Canât comment on my long term symptoms yet. The worst part by far is sleeping. Im a side sleeper so having swelling on both sides makes it difficult.
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So pleased that youâve had the surgery & are feeling good enough for your journey home! Take care & heal well 
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I really appreciate the info! And I am SO thrilled to hear how well you are doing! I am definitely praying it continues and only improves! I know what you mean about the sleeping lol Iâm a side sleeper as well and had surgery in April for something else and wasnât able to sleep on my side for weeks! So I get that!! Time will fly by and you will be side sleeping again before you know it! Be sure to keep us posted when you can! Safe travels!
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@Msdstc great to hear that your procedure went well! I just had my 3 month post-op call with Dr. Hackman today, and my recovery is going well. Symptom-wise, my sleep & anxiety levels are the biggest winners so far - sleep has gone from 2-3 hours a night max to 6-8 hours, my anxiety levels are much improved, and head pressure is much better.
I am still having many issues, but those are likely more related to my CCI issue than the ES. But overall with regard to the surgical recovery, Iâd say the numbness is about 50% better after 3 months - I still have some numb spots near my neck incisions, and some odd sensations near the ears, and my left ear canal still has a little numbness. My left TMJ also still has some pain and feels like thereâs some swelling & scar tissue, but again, Dr. H said that it should improve over the next few months. So just being as patient as I can.
I have had a few other odd things like spitting stitches, that I was able to simply cut off and they have been fine otherwise.
Some advice: ICE a LOT the first couple weeks, take anti-inflammatories until the acute phase is over, be careful about making sure you sleep upright so you donât swell more, donât take the surgical glue off too early (until Dr. H clears you to do so), eat as healthy of a diet as you can (I have gone full paleo and nearly keto diet, obviously this isnât medical advice but it did work well for me).
If youâre careful, follow the care instructions, and take things one day at a time/have a long approach to healing, you should be in good shape! Dr. Hackman really is great, and really cares about your progress, so you are in good hands as you move through this recovery phase.
Keep us updated & let me know if you want further updates!
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Thanks for your update Dobbs, & so pleased that youâve found improvements after surgery. Really good advice 
Itâs so hard with complicated medical conditions,I hope that you can get some treatment for the CCI nextâŚ
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So I feel great from the surgery. My scars are basically already invisible, my jaw has a tiny tiny bit of soreness if I really open wide, but otherwise I am back to 100% activity and whatnot
Unfortunately my long term symptoms like visual issues, tinnitus, face and head pressure, dizziness, etc hasnât been impacted much if at all :/. Gonna get some follow up imaging in a few months but I fear I need work on c1 and I donât know that I can keeep chasing this
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@Msdstc Itâs great to hear that your surgical recovery is going well! I am still having some issues with my ears & jaw after surgery, though my procedure was much more complicated than most.
With regard to the other symptoms, if they have not been alleviated after a certain amount of time, I would encourage you to look into CCI. I am currently working with Dr. Christopher Centeno in Colorado for treatment of my CCI, and in discussion with him, there is a certain amount of people that become symptomatic with ES when their CCI happens as well. Think about it this way: if the structures had been there for a long time without causing symptoms, what started the symptoms? In my case, we are fairly certain that my eagle syndrome became symptomatic because of the ligament damage to my cervical spine. The gold standard for checking for CCI is a digital motion x-ray, paired with either a cervical spine MRI or upright MRI. I know how frustrating it can be to have a successful surgery and still have so many symptoms. We have very similar symptoms when it comes to visual problems, tinnitus, head pressure, neck pain, etc. I would encourage you to check on this sooner than later because if it is CCI, it is a progressive disorder and will only get worse until treated. Obviously Iâm not a doctor, and Iâm not saying you have CCI, but with those symptoms itâs definitely worth looking into.
Keep fighting the good fight! We only get one life, and I have faith that youâll be able to find a root cause if you keep searching.
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@Msdstc so sorry to hear that old symptoms did not improve. I was equally hoping there is progress on those symptoms since they plaque me as well. A word of encouragement since I know you have gone through a number of surgeries without tangible success but donât let ES discourage you, keep fighting for solutions as you have been doing since you came to know this.
I think one quick step you can take is to do ballooning since that can easily be done with less invasiveness. Since they have been compressed for such a long time they could be fibrotic so stretching them a bit might allow more blood to flow. If that fails and new CT scan show C1 compression, have the worst side shaved, and then the other side. If they still do not improve, now it is time to entertain stent ( I know that sounds crazy since I am known for advocating against it) and only on the worst side to see if it improves. There are some research papers showing that stents usually improve residual symptoms after Styloid removal alone did not improve them. So you still have some cards to play.
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Agree with these steps as well ^ the IJV could still be causing some issues - Dr. Hackman said it could take some time for things to open back up bc of surgical swelling & time for healing. He told me to have my CTV repeated after six months to see if things are improving or not. It could be something that simple, or something a little more complex like CCI. In either case, keep grinding! For those days when you wanna throw up your hands, thatâs what this forum is all about!
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@Dobbs said it! Thatâs what this forum is about SUPPORT for all of you who are being challenged pre & post-op. We are here no matter what - to help lift you up! 
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So sorry that surgery hasnât made a difference to your ES symptoms, itâs so difficult when thereâs more than one thing going onâŚthe others have given you good advice for next steps when you feel up to it, so canât add any more than that. But thinking of you & will keep praying
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Msdstc, hang in there. I knew going into ES surgery I had other issuesâŚTMJ and CCI, now possible TOS. I knew it was going to be a process of elimination so I went for the ES surgery first. My TMJ seemed to calm down with steroids and botox. I seemed to be doing fine for about 6 months after ES surgery until a tooth extraction sent me off the deep end worsening my TMJ and triggering more ear issues - tinnitus, vertigo and sudden hearing loss. 18 months later, Im now looking at suspected cervical compression issues. Im tired of chasing this as well so I know how you feel but give your self some time to heal (3-6 months) from this round as it can be overwhelming.
I caution you Dobbs about Colorado people although I will say that my EDS hand surgeon does refer there. Having tried prolotherapy (essentially what they are using but a âpatentedâ application) for almost 10 years, I may have had some short term relief but long term not and it just created nodules and more scar tissue in my neck from the injections. Ive had several facet joint injections along the way too. My recent research shows some decent studies that support PRP or stem cell injections for osteoarthritic joints but I personally donât see enough data to support its other âhealingâ claims. I have spent the last couple years doing botox injections (some steroids) into jaw and neck with some pain relief. I recently tried a round of numbing injections in my temples and neck. Somewhat like dry needling but takes it to another level. Ive promised to Oral Facial Pain guy to give it a chanceâŚfor now as I do believe the needles just as in dry needling do disturb the ligaments. I am about âinjectionedâ out and not sure that any amount of injection of any substance yet can replace the collagen defect that can contribute to unstable neck/CCI - re: hypermobility. Maybe in non-EDS patients? Im assuming since you have POTS, GI issues, etc that you do have EDS. My daughter has much of the same.
In the meantime, I am having a dynamic CT Angio, which I had to fight thru 3-4 doctors to finally get ordered. Im still searching for that root cause.
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@Msdstc Do you think your incomplete fusion of the posterior arch of the atlas may play some role in this?..
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I donât think so. Apparently thatâs extremely common and has no effect on mobility of c1, itâs more about the transverse ligament. My neurosurgeon called it a red herring
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