I’m so sorry to hear that you are having challenges. I am also having the phlegm but I’m sure it’s from the tube. I have some Mulline tea and it goes away. Sleep is somewhat off also because I can’t stay comfortable or I get too much rest during the day so I can’t sleep at night. Hopefully that will adjust. Recovery so far I think it’s going quite well but I think it’s still too early to tell. Sending a hug and hope things get better.
3 Likes
Oh no, poor you, I hope that the cough soon goes and your incision heals, that is alot to have to deal with. Praying for a better recovery and sending you hugs 
2 Likes
@CoHDa - How is your recovery going?
Hi @Isaiah_40_31! I was just getting ready to crawl out of my hole in the ground with an update.
Mercifully, I am finally through the worst of things. It only took a round of prednisone and two antibiotics, one oral and one topical. I finally have been getting some rest at night now that the coughing and phlegm are quieting down. The area underneath my chin (as well as my lip) is still numb, and eating continues to be a lonely activity. I feel like The Fly, so I don’t want to deal with the embarrassment of eating in front of anyone, and I also don’t want to subject anyone to the horror of watching me try to eat. There’s that and the onset of first bite syndrome. Ode to joy!
As far as the incision goes, it finally closed, and I graduated to silicone tape for the next 2 months. If the tape doesn’t flatten out the incision, my dermatologist said we could talk about intralesional Kenalog injections. I’m hoping the tape will suffice.
I had a CTA of my chest, abdomen, and pelvis to look for any additional signs of FMD. The NP in my primary’s office sent me a message saying everything is “normal!,” which I won’t be assured of until Dr. Taka can take a look at the images. If I had a dollar for every single time someone said everything was normal, when clearly that was/is not the case, I could treat myself to dinner at a Michelin star restaurant (although I couldn’t swallow it).
A blood sample was sent to a lab in California for the latest round of genetic testing to rule out Ehlers Danlos syndrome. It takes about 4-6 weeks to get results. My primary was initially hesitant to refer me for testing stating that vascular EDS is rare. Cue the eye roll. I have VES and FMD, both rare disorders, so as far as I’m concerned the word “rare” doesn’t mean anything to me, unless we’re talking about how I like my steak.
With imaging and labs out of the way, for now, all that’s left for me to do is focus on recovering. Before I forget, I’m happy to say the eye, nose, and headaches are gone. Huzzah! I think that’s owing to the prednisone. Once all the inflammation started to subside, I noticed the aches started to subside too. For the first time in many, many years, I’m not in pain. Of course, the trade-off is the impaired ability to swallow and first bite syndrome (momentary pain), but hopefully, in time, both will be behind me as well.
Last thing before I sign off, I’m attaching Dr. Coniglio’s write-up of the procedure he performed in my case. It might be useful to someone else. I don’t know if others have shared precisely what their procedures entailed, but it might serve to educate and inform others, e.g. patients and surgeons alike, if the forum kept this information in a “procedures file” for members to be able to access. Just a thought…
Anyway, that’s all I’ve got this evening. I hope everyone is healing, on their way to healing, or otherwise enjoying life after healing! x
1 Like
Thank you for your update. I had no idea your hyoid bone was removed & that does explain your troubles swallowing. I didn’t know hyoid bone removal was a thing. My question is - couldn’t it be “shaved” like the transverse processes of C1 are rather than fully removed? I’m not a doctor but full removal of the hyoid seems aggressive & severe. I apologize in advance for my ignorance in this arena, but is your ability to swallow expected to recover since the hyoid plays a significant role in that?
I’m glad you’ve gotten some good from your surgery and hope the leftovers disappear with time.
1 Like
I’m glad that things are improving and that you still have your sense of humour- laughter being the best medicene & all that!
Did he remove all the hyoid, didn’t know that could be done?
Keep strong, keep healing & God bless
2 Likes
@Isaiah_40_31 and @Jules, to answer your questions about my hyoid, I reached out to Dr. Coniglio.
Just as I presumed, he did not remove the entire hyoid. Similar to the subacromial decompression of my shoulder performed years ago that involved removing a section of my clavicle, Dr. Coniglio removed a section of my hyoid that, along with the styloid, was compressing my jugular vein. As for being “thin necked,” he said it was a reference to having a slender neck that made it “easier to operate on than the average neck.”
So, there you have it. There is no need to panic. My head is not going to dislodge from my shoulders if I hit a pot hole while driving or trip over a crack in the sidewalk. Removing a section of the hyoid presents no more risk than removing the styloid. And, in fact, partial removal of the hyoid is commonly done by head and neck surgeons as part of the Sistrunk procedure to remove thyroglossal cysts.
The initial two weeks post-op were hellacious, but I am now over that hurdle and continuing to progress. While the prospect of enjoying a juicy ribeye for dinner tomorrow night or the next night is not in the cards, I am hopeful that, even with a trimmed down hyoid, it will be next month, God willing!
2 Likes
@CoHDa - Thank you for the clarification. I continue to enjoy your sense of humor. 
The hyoid bone is actually the only bone in our bodies that is “free floating” in a sense as it’s only connected via soft tissues. I’m so glad you still have enough of yours to keep your swallowing functional. I do understand how long it can take before one can eat normally post op as I had that experience as well. It’s great to know that you’re beginning to feel better & I hope the option to enjoy that juicy ribeye occurs sooner than later.
2 Likes
@Isaiah_40_31, indeed, as I understand it, the hyoid bone is one of a kind, free floating, so to speak.
I’ll be sure to let you know when I’m able to sit down and fully enjoy that ribeye. Perhaps I’ll even receive a badge for the milestone! 
Thank you for your continued encouragement and support! 
2 Likes
Glad you have that clarified @CoHDa ! Good that they were able to get back to you so quickly… and good that we now know of another doctor who’s willing to do a hyoid trim as we’ve had several members with HBS!
Enjoy your steak when you can manage it; being able to chew toffees again was a milestone for me! 
2 Likes
Checking in on you @CoHDa - how are you doing
3 Likes
Hello, @lilwider! That’s the 10 million dollar question, isn’t it? We’re all asking ourselves and each other how we’re doing. I feel as though, when I’m just about to answer or just answered, something else happens that forces me to reassess my status.
So, I thought the headaches were a thing of the past, but they came roaring back after a recent physical therapy session for, of all things, tennis elbow. I lost my balance back in January and came down hard on my right elbow on the sidewalk in front of my house. Despite what the MRI showed and what the orthopedic surgeon diagnosed, the physical therapist decided the pain in my elbow is attributed to my neck.
It took all of about 30 seconds for the exercise she asked me to do during my first PT appointment to set off a raging headache that lasted through the rest of the day into the night and then lingered several days thereafter. Needless to say, I did not reschedule with her or reply to a voice message seeking to reschedule the next appointment that I had canceled. That physical therapist sent me down a bad stretch of road that had me wondering if she’d just managed to undo everything I’d fought so hard for.
After a few weeks of rest (prior to that PT appointment my activity level had increased to light yard work and gardening), I was able to lean forward again and just move in general without setting off “the headache.” The headache pain I feel sits at the top of the left side of my nose and spreads into my left eye and just above it. Mercifully, the ear pain and fullness have not returned and neither has the jaw pain.
Last week, I had a follow-up appointment with Dr. Taka who ordered a post-op CTA. He also wanted to be sure that I hadn’t experienced a dissection in my vertebral artery, given some new pain that I was experiencing in the back of my neck. The CTA showed no dissection. Phew! Dr. Taka said is also showed much better venous flow on the left side, so in that respect the surgery did what it was supposed.
What was also telling about the CTA is the finding of fibromuscular dysplasia (FMD) at the distal cervical internal carotid arteries bilaterally, left side more than right. The ophthalmic artery is the first to branch off the carotid and supplies blood to the eye, ocular muscles, lacrimal gland, the upper nose, and parts of the forehead, i.e. the entire locus of “the headache.” Eureka!
Mindful of the findings from the post-op CTA, I went to the FMDSA website to review its signs and symptoms. They look an awful lot like symptoms of vED. Now that I’ve had the styloidectomy, it is easier for me to tease out which symptoms were attributed to vED and which are attributed to FMD. Even so, I’m sure there was some overlap, especially with vertigo and dizziness in my case.
How am I doing? I can swallow again and eat steak! The feeling under my chin has yet to return though, and the hematoma that developed under the incision has left me with an itchy often inflamed scar that will likely take a significant amount of time and effort to heal. Sometimes it feels like I have a knot of muscle and tissue that needs to be stretched lest I lose some range of motion in my neck and jaw.
The remnants of any other post-op pain and discomfort are more than likely attributed to FMD not vED, which is to say to people that it is possible to have more than one diagnosis at a time to make a life miserable. But being able to distinguish one from another certainly does make it a bit more tolerable.
I sincerely hope your summer post-op journey has been far less eventful! 
3 Likes
Thank you for a thorough update, so sorry for you that your PT appointment set you off with such a bad headache…my first thought was maybe it set off nerve pain through the Trigeminal nerve path, but it sounds like you’ve worked out the source of the pain…I’ll read up more about FMD. What can be done for it, any treatment?
I’m glad though that you have some improvements after surgery, so I hope that you think the surgery was worth it? And I’m so glad that Dr Taka was able to rule out an arterial dissection, and also that he could confirm an improvement in the venous flow!
I hope that you’re able to enjoy some of the summer now
2 Likes
I am always worried that my posts are far too long, but I do feel it’s best to provide as much information as possible in the event that it’s useful to someone else.
At this point, I think regardless of the source of the pain, no one will be touching me, especially not my neck, without an explicit understanding of my medical history. It was really absurd to me that a fall directly on my elbow would lead the physical therapist to believe somehow manipulating my neck would relieve the pain. But I digress.
There is no present treatment for FMD apart from being vigilant for dissections and taking a blood thinner like low dose aspirin. What I do find to be encouraging is that there are at least 10 or so centers across the states as well as a couple of other countries that are dedicated to researching the cause and treatment of FMD. There is actually an annual conference. I wish efforts to learn more about Eagle syndrome and how to diagnose/treat those who suffer from it were as coordinated!
I’m also just realizing I mistakenly wrote vED rather than vES in my previous post. ED is an entirely different issue! Sorry if I confused anyone.
Yes, the surgery (with the exception of the shenanigans in the hospital with the nursing staff and the two days that followed) was definitely worth it. I feel like being able to check that box off allows me to focus on the FMD, POTS, and possible vascular Ehlers-Danlos. I forgot to mention my genetic test results found a variant of unknown significance. In light of that result and given my highly unusual medical history, I was told I should consider having a full genetic sequence. I won’t go into that entire discussion, but it’s on the table.
Back to vES, both Dr. Coniglio and Dr. Taka are absolute gems. Thanks to them I have been able to do a bit of gardening around the yard and am feeling hopeful that I will be able to move more freely again without debilitating pain and worse.
Thanks, @Jules! I hope your summer has been enjoyable! 
3 Likes
Wow. I’m sorry that you had a rough time at pt- though you aren’t the first person I’ve talked to that has had that very same experience! I have heard before starting with a therapist they need to know and understand the snow is the surgery. I’m glad it settled down for you, I know it takes time to heal and settle our symptoms and any exertion can make things worse. It’s very interesting of your new findings. What is your next step? Do you not have your other side done? Any regrets having your one side done? I too had an issue with a dizzy spell, it was only a few times and shirt lived thankfully. But it was right when I started doing a few more things. Yes it’s nice to eat a little more normal and no choking or aspirating episodes is nice. Swallowing is easier. My scar luckily is wonderful I have most of my feeling back in my face and ear. The scar has no pain and feels normal. I do have tightness in my muscles especially in the shoulder from the dissected accessory nerve. Dr C reassures me it will get better and doesn’t seem to think I need Pt which meant people I speak with is going to pt. But I have been stretching and exercising and concentrating on that shoulder and arm movement. I’m at 75% I would say I feel like may symptoms are gone though some are going to the left side. I’m optimistic with no regrets. And am waiting to hear what Dr C says in September. Sending a hug and hoping you continued healing
3 Likes
Great to hear
1 Like
I am so glad you’re coming along without any major complications, @lilwider! That’s half the battle to recovery. I’ve also realized that I need to do more stretching like you. It wasn’t anything I’d previously thought about until recently when I became aware that certain movements really make the area under my chin feel tight like a knot in a muscle that needs to be worked out. But at this point, having been so inactive for the past five years, my entire body feels like a knot.
Blessings to you as you continue along the path of an uneventful recovery! 
3 Likes
@CoHDa - I’m sorry to read about your new diagnoses & hope that vEDS testing ends up showing negative results or at least if you have some version of it, it’s benign. That’s a horrible thing to have!! Please let us know if you have the learn genetic sequencing. I hope it’s no more extreme than just getting a blood test.
I wish for your ES surgery recovery to continue noticeably & for you to find ways to help your tight muscles begin to relax & work more freely. It’s really great that you had two doctors whom you highly respect helping you & now sticking with you through your recovery.
1 Like