Well, I’m back. Not sure if you all remember me. I had MVD surgery a year ago with a myriad of post-op complications including blood clots, CSF leak, and shunt placements. After all has been completed, I still have the same terrible headaches I had before MVD surgery. So honestly I’m right back at square one.
I have a terrible pain around the right hyoid bone area and it radiates out to the right neck, right clavicle, right TMJ, and right temple areas. I also have very tight suprahyoid muscels. Once the pain has been present for a while, it turns into a terrible headache. I already know I have hyoid bone syndrome, diagnosed by Dr. Brad DeSilva and Dr. Chhetri. Per Dr. Chhetri, it’s one of the worst he’s seen.
I’ve included a copy of my neck CT showing the right greater cornu basically touching the cervical spine. For those familiar with this condition, can this cause significant headaches? Have you known anyone to get the steroids injection and it helped? Please advise. @boogs99 , @KoolDude@Isaiah_40_31@jules’ …I’d be curious to get your take on the situation. Thanks a bunch!
@1speechpick - Of course I remember you! Your journey has definitely been unforgettable for me. I still pray for you as God brings you to mind. I’m so very sorry that your pain continues to be awful after the surgeries & post op blood clot, etc.
Hyoid Bone Syndrome can produce identical symptoms to ES including vascular compression, however, its most often the internal carotid artery that is compromised by HBS. To me, your hyoid appears to be rotated to the right, not elongated, & the greater cornua look very wide, but I’m not exactly sure what it’s supposed to look like in a cross section such as the one you sent. I would speculate that both the rotation & the width of the greater cornua could be causing the pain you’re having. When elongated, the hyoid greater cornua can press/rub on the ICAs which definitely can cause headaches. Neck & clavicle pain are caused by spinal accessory nerve irritation (I had those symptoms caused by my styloids); TMJ pain is likely from trigeminal nerve irritation. The suprahyoid muscles are possibly tight due to the position of your hyoid, & it’s possible that if you got some PT or other therapy to help them relax especially on the right side, your hyoid might gradually move back into a more normal position. That said, I’m not sure what type of therapist would be knowledgeable about that part of the neck.
I think it would be wise to get a second opinion about your hyoid from Dr. Cognetti as he does hyoid bone resection. He’s closer to you than Dr. Chhetri & possibly more experienced.
I tried Dr. Congetti today and unfortunately couldn’t even get an appointment. I even resorted to emailing them personally myself and did not get a response.
I know this isn’t my post, but just wished to remark on how excellent, helpful and knowledgeable your reply is! (A quick question - I can’t quite work out what cross section axis of the neck is shown?)
@Blodyn - I’m glad what I wrote is helpful for you. Jules wrote some good longer posts about ES symptoms & their causes that are in the Newbies Guide section under the Welcome category on the Home page (click on the butterfly avatar above left to get there). They’re well worth reading to get a better understanding of what may be causing symptoms you have. Here’s a link to one of them:
I assume it’s a slice from a CT scan. The image appears to be looking down at the hyoid from the above as opposed to from the side.
Hi @1speechpick, first I would like to welcome you back and I am happy that you are feeling bit well now. I really can’t say whether it does or not since I am not a doctor but given your past medical challenges, it is hard to attribute headache (which has many causes) to hyoid tip rubbing against a cervical bone. Pain around the neck, yes.
Thanks @KoolDude. I happened to find this photo which shows the depression of the hyoid on the right, especially the right greater cornu. My suspicion is that the suprahyoid muscles get really really right causing some of the pain, then the headaches. As you can see the suprahyoids are likely stretched beyond capacity.
I see that but the mechanism of that causing headache is bit over my head. But then anything can cause or contribute to the development of a headache. How do we know, for example, that CSF fluctuations (increases or decreases) is not to blame in your case.
Well, the saga continues. I’ve continued to have progressive symptoms. I met with Dr. Chettry and he thought I had something additional going on, stating that HBS symptoms aren’t progressive. As it turns out, he was totally right. I landed in the hospital for 3 days where they did a lot of testing, and I learned some things.
Meet Esmerelda (pictured below). She’s a 7mm x 5mm pituitary adenoma secreting growth hormone and causing early-stage acromegaly. No wonder I’ve continued to get sicker despite medical intervention. I’m working on scheduling her eviction but don’t have an exact date as of yet. On the upside, the brain MRI and MRV all looked good. Hope everyone is well.
@1speechpick - WOW! WOW! WOW! What a sneaky little devil Esmerelda is (I love you gave your adenoma a name )! While you had your brain looked at for vascular constrictions, she was subtly growing in the background & causing other problems. Any possibility that the extra hormone secretions contributed to your other problems? How fantastic that Dr. Chhetri recognized your symptoms & caught this early!! God is good!!!
I hope this is THE END of your health challenges & you experience full recovery of your ability to enjoy your life & family fully. You’ve had quite the interesting medical journey. Thank you so much for staying in touch & allowing us to support you each step along the way. Please keep us in the loop during your recovery, once Esmerelda is removed.
I do have HBS but Dr. Chhetri pointed out he thought something else was up, because HBS is not a progressive condition. Ironically, I’ve been talking to my neurologist about possible endocrine issues for a few months. Finally I demanded a pituitary MRI, and there was Esmerelda. This fills in a lot of gaps. My endocrinologist says that elevated IGF-1 levels (in acromegaly) can cause the brain to not re-absorb CSF well, causing higher pressure. But honestly I haven’t researched it. I hope everyone is well!
Good job advocating for yourself!! Will Dr. Chhetri take care of the HBS surgery for you & has he referred you to a surgeon for the adenoma removal, @1speechpick?
@anon67578920 - Actually, headaches can occur even without vascular compression. I have had migraine level headaches caused by my trigeminal nerve. It seems once nerves are irritated by ES, they can maintain a level of hyper-sensitivity long after the styloids are removed or the hyoid bone’s greater horns are reduced in size. Many of our members take nerve pain medications far beyond the time of their surgical recoveries simply because nerves haven’t fully healed or are too easily excited & continue to cause pain.
There is only direct injection of a substance into the nerve from its pain, blockers. After operations, there is swelling of the muscles, which puts pressure on the nerves and also on the blood vessels. There are no nerve blocking pills; there are blood thinning and muscle relaxing pills.
)! While you had your brain looked at for vascular constrictions, she was subtly growing in the background & causing other problems. Any possibility that the extra hormone secretions contributed to your other problems? How fantastic that Dr. Chhetri recognized your symptoms & caught this early!! God is good!!!
