I had a correspondence with a headache MD at Yale U. She suggested I explore IV lidocaine or ketamine infusions. I admit that I haven’t had the time to do any research on these options.
Have any of your experienced these treatments?
I can imagine that it might help break the central nervous system perpetuation of pain, yet because it (obviously) doesn’t get rid of our underlying cause, I wonder how long any relief could last.
FYI, it seems these infusions are multi-day in-patient procedures done at some centers like the Jefferson Headache Center:
@PamelaInNYC - I can’t speak to the lidocaine, but I would be very cautious w/ ketamine. It is taken illicitly for its hallucinogenic properties. I knew nothing about ketamine until I had bilateral hip replacement last year & was given IV ketamine as part of the anesthesia for surgery. Immediately upon delivery, I had a horrific hallucination that felt like it lasted for a number of minutes. In reality, it may have only been seconds. Regardless, I would prefer never to go through that again. In that type of surgery, it’s used as a temporary paralytic for the lower body. If you elect to try it, make sure you have a solid understanding of the dosage, rate it’s delivered into your body, & potential side effects.
My son recently did 2 ketamine infusions and it did not help. It actuality made him start having bad headaches that are still constant after 3 wks. This is rare to happen is what we are told. Usually its short term headache.
I’ve read encouraging studies about IV ketamine, both for PTSD and to crack a cycle of neurally mediated pain.
From my minimal research, I get the sense that some (possibly the more sketchy kind) pain management doctors offer IV ketamine as a money maker. It obviously helps people, but it does seem like a treatment that would be most effective if given in a carefully supervised environment, with an experienced clinician who knows how to administer low-moderate doses to start so as to minimize adverse side effects. That’s always been my barrier. It sounds like it has the possibility of being helpful for people who have an optimal experience.
@Kerri, Did your son ever get his styloids removed? You had mentioned Dr. Alemar might be the one to do it. Dr. Cognetti whom your son saw for the hyoid bone surgery is also an excellent ES surgeon.
How is your son doing now? ES can definitely affect the vagus nerve which innervates the vocal cords (I read back to earlier info) which Dr. Hauser pointed out. ES can also cause headaches especially if vascular tissues (internal carotid artery or internal jugular vein) are being compressed. Has that been looked into? Your son’s styloids are plenty long enough to be causing symptoms. If he hasn’t had them removed, you might want to consider revisiting that plan.
He did not get his styloids removed. Dr. Alemar’s assessment was he did not have Eagles or GPN. That doctor is terrible by the way. We also had Dr. Cognetti look at updated imaging in 2021 and he did not think the styloids were causing his throat pain and the rubbing feeling. He is a great doctor for sure. Those were his main symptoms for many years. Since then he has had a GPN nerve block that did not help. He has also developed tongue aching and the feeling of many blisters on the back of his tongue and throat. Doctors can not see the blisters. It recently started getting severely flared up after eating many different foods. Food allergy tests r negative. Endoscope negative. All the neurologists can say is its nerve pain or burning mouth syndrome. He continues to try many pain medications. He has high B6 with no supplements so trying to figure out why. Ketamine was kind of a last resort in our minds; the doctor told us they had had success with it relieving the burning mouth and throat pain. It did nothing except create migraines and hallucinations that have now simmered down to bad headaches with all the other pain continuing. This all started with a tonsillectomy in 2011 with symptoms changing along the way. It’s a long road…
Thanks for checking up on him.
Despite Dr. Alemar (thanks for the heads up) & Dr. Cognetti’s opinions, I strongly believe that the cause of your son’s symptoms are his styloids. Honestly, I’m surprised that Dr. Cognetti would agree they aren’t causing his symptoms. Everything you’ve mentioned he’s suffering from is pretty common with ES. Many have tongue symptoms (I had some but they were different than you’re son’s), throat symptoms, headaches, etc. If there’s no sign of vascular compression by the styloids, headaches can be explained by TN, Facial Nerve, &/or Vagus Nerve irritation. I’m sorry I don’t remember your son’s age group, but if he’s 20-30 or younger, his body is still growing & changing & the likelihood that his styloids have continued to elongate is pretty high thus his symptoms would also be potentially getting worse. If he hasn’t had a CT scan since 2021, it would be good to get an updated one to evaluate his styloids, stylohyoid ligaments & hyoid bone.
Would you/your son be willing to see one more doctor for a third opinion? Dr. Hackman in Chapel Hill, NC, would be a good doctor to see. Several of our members who live in your state have seen him for surgery recently, & there are a couple who have surgery dates upcoming. He does bilateral ES surgery (the only doctor on our list who does) so your son could get both styloids out in one surgery, BUT that’s not mandatory. Dr. Hackman will also do unilateral surgery if that’s what the patient prefers.
If you haven’t read the two posts that @Jules wrote regarding ES symptoms, it would be a good idea to do so. I believe they will substantiate your son’s diagnosis of ES. She backs up her information w/ references to peer reviewed research papers. Please use the search tool to look them up:
ES Information: Common Symptoms And Possible Explanations For Them
ES Information: Background, Anatomy, Styloid Length, Angulation, Classic and Vascular
I feel like I have read every post on here. I have always thought his issue was his styloids given the symptoms. He is 28 now. Cognetti thought his problem is reflux but every endoscope shows no evidence of that. He said his styloids aren’t goin into the throat area. I know they can grow though. What do u feel is the best scan to have?
Sorry, I read on a previous post if yours about the scan specifics. That is what I am currently trying to get a new scan done as well. Thanks again for your help.
I totally forgot to mention that the angle, thickness, how curved or twisted the styloid is can cause symptoms even w/o elongation. I can’t believe Dr. Cognetti would have been been dismissive based on the fact your son’s styloids aren’t growing into his throat area! They could be angled such that they’re tangling w/ the nerves & not directly bothering his throat.
Getting a new CT scan is the best idea. If he has vascular symptoms, get a CT w/ contrast, & request that it be a dynamic CT especially with his head in the position that makes his symptoms worse. Most are done w/ a neutral head position which often doesn’t show vascular impingement by the styloids.
I am so sorry. It sounds like they didn’t follow the proper protocol? I’m not trying to upset you but just wondering if there is some recourse or if it’s worth filing a complaint.
I too was diagnosed with burning mouth syndrome, GERD, etc for years before the proper diagnosis of eagle syndrome. My throat pain and other burning, stabbing pain seems to be neuropathic, due to ES.
So sorry for such difficulty in getting care and for your son’s suffering.
Indeed. My headache MD (Montefiore) who is wonderful told me that IF i consider a lidocaine or ketamine infusion, do not go to a pain doc or any private practice . She recommended For New Patients
Have you learned through your research for how long after the infusion the pain reduction lasts?
Actually, just got a message from MD Fellow working under my doc:
“I found out about other options for Ketamine [in addition to Jefferson headache center in PA] if you are still interested ISHA Health (website: isha.health) and Taconic Psychiatry.”
Thank you. He definitely did not have in patient ketamine treatment. It was 3 hrs each time. 2 hrs of straight infusion. Done at a ketamine clinic in FL. So maybe what u r checking into would be beneficial for u. Sounds like a better overall protocal with it being in patient. I sure hope you can find relief.
