Well I was not impressed with that visit. I chose this guy based on a lot of positive reviews that really resonated with what I am looking for in a doctor’s ability to communicate. Maybe he had an off day but he was a typical ego centered not really patient to listen dude. And he pretty much ignored my discomfort when he in the blink of an eye whipped out the damn machine to shove the tube up my nose and down my throat. What a horrid experience that is. Yuk. I realized afterward that he didn’t even touch my neck or feel around. I remember when the tmj specialist did a bunch of that and when he pressed on a certain point I thought I was gonna pass out. Granted this ENT is not a specialist in styloid related issues, but then again who is? The one thing he did seem interested in was that some of these symptoms didn’t exist until after the botox injections last year in my scalenes, the right side of which was like torture. He asked what the doctor had to say when I told him and I said not much.
He seemed to discount my notion that calcification could have happened as a result of that trauma to the neck but then again he may have been on a different page…I communicate very differently than a doctor mind does. Perhaps he was more focused on the symptoms that showed up four weeks after…the airway restriction, difficult swallowing, and numbness in the chin. And I was in that moment referring to the sudden feeling like fish bones were caught in my throat one day and the subsequent feelings of swallowing bones. However, isn’t it true that calcification can happen rather rapidly? I feel like that is my impression from the reading I’ve done so far. In cases where it was noted after tonsil surgery was it soon thereafter?
My bad, I was not as prepared and organized as I envisioned being, but with ADD I struggle to get to the final result. Live and learn. Next time I will just hand over a piece of paper and say read it. lol. I shut down when I get the vibe that I am not being listened to. Old trigger, “just protect yourself and don’t waste your energy…”
At any rate I am having a video swallow test in two weeks. I have come to accept that it’s probably impossible to convince a doctor you need the 3DCT scan until they agree. I will just see what if anything is noted from the swallow study and then try a new doctor, why go back? Yeah, I started to explain one trigger of symptoms and he pretty much cut me off and said well that’s the tmj, and therefore was not LISTENING to my connecting of the dots. Ugh. I left two cd’s there because they couldn’t view or copy them right there, they said they would mail them back to me. I protested at first then I said whatever. I will call to see if they have been mailed back yet. Will he even look at them? I wonder.
It’s hard to be patient when there is so much at stake. Eating. So tired of the eating struggle. Forgive me I haven’t searched the eating topic, but do most people here have significant eating difficulties? I know there are so many variables for everyone, but it seems like that area would be rather similar across the board.
Keeping the faith. Thanks for listening.
For what it’s worth, I was diagnosed w/ ES by the first ENT I saw. He simply ordered a CT scan (not 3D) w/o contrast. The results showed bilateral ES w/ partially calcified ligaments. Without contrast, the calcified parts of the ligaments show up clearly but the non-calcified parts are invisible. Vascular compression is also invisible w/o contrast & as heidemt noted, most ES surgeons don’t really differentiate between “vascular” ES & non-vascular. ES is ES regardless of the symptoms. Though Dr. Samji didn’t diagnose my ES, he is the doctor I chose to do my surgery because he had more ES surgical experience. I was blessed to get an accurate diagnosis within 2-3 months of the initiation of my symptoms, however it was more than a year before I had both of the necessary surgeries to resolve my ES. I haven’t checked the updated ES doctor list recently, but there surely must be someone in the Boston area who has a clue about it and could be helpful to you.
Sadly, most doctors who are good have egos but not all good doctors are poor listeners. They may disagree w/ what you say & make it feel like they aren’t “hearing” you, but I believe that anyone who hasn’t experienced ES & it’s multiple & varied symptoms has no business dismissing an oddball symptom as not being ES related. It’s a rough road we tread.
Is your eating struggle related to not being able to swallow? I choked a lot on fluids & occasionally on food prior to my surgeries. I continue to have an intermittent problem w/ liquids & blame it on the fact that my stylohyoid ligaments are gone. Dr. Samji did tell me they play a minor role in swallowing. That said, having relief from the pain & other symptoms of ES is worth the sacrifice of coughing after I drink. I also still have a bit of trouble eating as the nerves to the right side of my tongue suffered some damage during my first surgery. They are 99% healed but the 1% that is lacking still causes minor, periodic speech & eating difficulties.
If you’re able to get a CT scan of any sort for ES, you can always email it to Dr. Samji & have a telephone consult w/ him. It would be cheaper than flying to the West Coast. Spoiler Alert: He won’t schedule a phone consult unless you difinitively have ES based on his guidelines which Jules gave you in an earlier post.
Hoping you begin to get some answers as you go forward.
P.S. Dr. Timothy Osborne at the Boston University Medical Center - 617-■■■■■■■■ is listed on the updated ES Doctor List. Might be worthwhile to make a visit to his office.
Sorry to hear that you weren’t treated very well at your appt.- it is so frustrating and stressful. Hopefully he will look ay your CD’s…
A lot of people have swallowing problems, and find that they have to eat soft or liquidized food. Gods Blessing posted quite a bit about that as she had a lot of problems, but has found help with a chiropractor- you could contact her for more info. It’s quite easy to search for stuff on here if you have the time.
Thanks! I haven’t had time to do much new research as I have been balancing life on a tightrope, taking care of my sweet senior dog who is the light of my life. Just diagnosed with stage two kidney disease and she only has one kidney! Struggling with her diet as well!!! So funny, pets and their people really do take on similar traits lol.
Thanks for looking that up! I saw that when I first joined the group and I felt hesitant about setting up a consult because he is not an ENT or a skull base surgeon. However I will most likely go for an appt. just to see what he has to say. Have to find out if there is a limit for multiple opinions!
Thanks again, appreciate that!
Hi there, thanks for your input. Glad to hear you had a fairly smooth journey! How are you faring now? Sorry, I would go poke around your past postings if I had time but I am already past my curfew lol. I swore I would get on here tonight though. Sigh…one day I will get back to an early bedtime!
Eating, yes, trouble swallowing among the host of other symptoms that come after eating or drinking. Also nasal regurgitation =( Some symptoms have toned down a bit so that I am not in as severe states as I have been the last several months. I have severe malocclusion so eating is already a big struggle, as I have only been able to do soft foods for a while (all hell breaks loose when I go rogue and decide to chew real food =( so frustrating). It’s actually the GNM dentist I saw for a consult who pointed out the long styloids after he took an xray series and said they may be part of my trouble. Thus introduced me to a world I never knew existed. Our bodies are CRAY CRAY!! Anyhoo my sense is there may be some hyoid stuff going on in addition. And whatever growth or calcification (or who knows, unhealed fracture perhaps) is in there is definitely pissing off some cranial nerves as well as squishing arteries a bit. Though I am lucky the vascular component is relatively tame.
I’m in a weird place. Just so eager to get help in identifying what is going on in there, but in the back of my head I am not doing so with the intention of surgery. I guess it is called a river in Egypt. Hah. I just can’t wrap my head around that yet. Guess I am hoping for some miracles.
Been wondering about surgery, and if they remove both the styloid and SHL…what are the ramifications. I guess there is enough other stuff holding down the fort of the hyoid but it makes you wonder. All this junk in there we can just take out…lol…eh…don’t really need that, it’s outta here. Nerve damage to your tongue? Permanent? Surgery. It’s a scary crapshoot isn’t it? Especially considering I really have a sense it is damage from neck injections that is partially responsible for this insanity. My trust level in medical professionals is…eek.
Thanks again for your reply. So glad your surgeries were a success!