Hello all - Had an initial visit with and ENT in Boston today and while I tried to lower my expectations, I still came away discouraged. Her specialty area is voice disorders but was the only one that had ES on her list of clin interests so I went with her. I have been updating a journal over the years so I had faxed that to her ahead of time along with various imaging results that have been normal. I was prepared for her possible referring me out as my symptoms are vascular in nature, but she kept telling me I did “not” have ES because I did not have the right symptoms etc. She seemed unaware of the vascular type. She did feel that I had something vascular going on so she referred me to a neurovascular surgeon so that is good. But all in all she felt dismissive (although I think she was working hard not to be) and she said that all the people that have had the surgery are “miserable” and “worse off” after the surgery. She did seem shocked at how tight my neck felt and by some clicking my hyoid bone made when she pressed on it? She even mentioned the possibility of Ehlers Danlos? I have read a bit about that and that doesn’t seem to line up. Anyway…just discouraged and feeling very tired of chasing this thing. No worries as I will recover and begin fighting again but for now I can’t help but feel this is just how I am going to be at age 50 and it’s so limiting. As a single mom/single income, I have moments of being completely terrified at the thought of having another “event” that leaves me even worse off cognitively etc. But that’s it for feeling sorry for myself…so many out there with much worse going on. Just helps to complain once in a while. Thanks for listening.
This is a good place to vent where we all understand, so feel free when you need to… And it is sooo frustrating when doctors are ignorant about ES. The first doctor I saw insisted that the styloids couldn’t compress the blood vessels in the neck, maddening as there’s so many research papers showing that it does happen. Oh, to have been a fly on the wall when the second doctor I was referred to did a CT contrast & it showed bilateral compression of the jugular veins! Plus if she thinks that surgery results are not good, then I wouldn’t want her operating on me, so maybe you’ve had a lucky escape!! (there are research papers, with admittedly small study groups, which show a success rate of about 90%)
It’s good that you’ve been referred to a neurovascular surgeon- I’m sorry, but I can’t remember what scans etc. you’ve had- have you had a CT with contrast to look at the blood vessels? If not then when you see the nv doctor then push for that. Maybe they’ll listen! I know it’s hard, but you do have to pick yourself up, take info with you like research papers that show symptoms like yours, and unfortunately you do have to be your own advocate. There are quite a few papers mentioning cases of ES causing strokes (very, very rare though), so they’d be good ones to take.
You sound like a really strong & positive person, so have a moan on here where you can vent & then on to the next doctor! Thinking of you & sending you a big hug
Jules, you’re a really kind person!!! And seiders50, I wanted to write you too to comfort a little bit. Compared to others here, my symptoms torment me only a short time (since 2015 it got worse), but that’s even enough for me! I’m a mom of 2 little kids and as my husband got very ill, our plan for life crashed. I only heard from the doctors, a surgery is much too risky and I shouldn’t think about it. They said, it’s the last option, when it becomes so bad, that I can’t stand it anymore! And in my situation I thought, they must be certainly right…but in the last weeks I am thinking about it more and more. My father had also ES and in the age of 80 he asked for a surgery, he almost couldnt eat anything at that time. And the doctors didn’t dare…I don’t want to end up like this. I’m too young I think!!! And the pain we all have doesn’t go away…just last week I had an appointment at a surgeant and he told me, he can’t recommend a surgery, and I’m so sick of it!!! I think, they can’t recommend because they are simply not ABLE to do this kind of surgery, so I have to surch on for somebody, who IS able… Don’t be so discouraged, it’s not an easy way, we have to go, but in my opinion - giving up means suffering for the rest of live, and that sounds much worse for me…a big hug from me!!!
Thank you Jules and Cookie for your kind words and support. After a few days of going over what the ENT said to me, I realize she just did not know much at all about ES. I recall she even said that the styloid had probably always been that length because “bones don’t grow” after a certain age. I also had her feel the thing nearly protruding through my tonsil and she said that it “nowhere near my carotid artery” and thought maybe it was “tonsil stone”. Seriously. Anyway, coincidentally, my mom has just been diagnosed with an abdominal aortic aneurysm (she’s 70 and it pretty good shape otherwise). My gf, her dad, dies suddenly when he was 62 and he was not well for many years before this. They were poor so never had insurance, etc. I guess where I am going with this is that maybe, hopefully, going to see a neurovasc surgeon may put me on the right track. Meanwhile, I will try to get through one day at a time ans stop lifting heavy things. Anyway…thanks you for all listening and being here for each other. So hard to talk about this stuff to so many that just get tired of listening. Counting my blessings out loud these days. xo
Hi seiders50 - I am also very sorry for the run around you got at your appointment w/ the ES “specialist”. Clearly your assessment of her ES knowledge is accurate. I’m sorry also to hear about your friend’s dad & your mom’s new diagnosis. Hoping she can be successfully treated & live a much longer, healthy life.
I apologize if I or someone else has asked this question, but are you able to travel out of state to see one of the ES doctors listed on the US ES Doctors’ List? There are several on your side of the country (I’m on the West Coast) who have much experience & would be more likely to help than discourage you. As I’m sure you’ve read over & over…surgery has given life back to so many of us on this site. I still have some residual problems that are “small potatoes” compared to before surgery & are things I can easily live with.
If travel isn’t an option, perhaps you could at least get an over-the-phone consult. Dr. Cognetti & Dr. Samji will both do those for a fee. You just have to make an appointment & send your CT scan to the appropriate office. It’s possible that having that sort of opinion would help your case receive more credibility/respect by whomever else you see closer to home.
Hoping & praying you’re able to get farther toward recovery w/ the neurovascular surgeon.
Thanks Isaiah. That’s a very good suggestion re: consult with Dr. Cognetti and Samji. I will pursue that if things don;t pan out with the neuro person I have been referred to.
SO thankful for his forum full of supportive people!
Stephanie, I am sorry to hear of the Dr being so unhelpful. I have not been on this group for a long time, but do check in from time to time so I am sure I don’t have much advise, but seeing you went to a Boston female Dr. really has my interest. I saw one a couple of years ago at Brigham and Womens and was completely brushed off. I wish I could remember her name, but wondered if it may be the same one. I hope that you find the help you need soon. My husband recently had major back surgery and I spoke to his neuro surgeon about ES, he was shocked that he never heard of it but promised he would learn. On my husband’s next visit, he reported he learned all about ES. I then told him no one believes me, or wants to help and he told me he will find someone for me and report at my husbands next appointment. If I get a new name in the area I will for sure share.
What a great story, Ruthie! How wonderful of your husband’s neuro surgeon to take an interest in your case & even more so to the extent he’s working to find help for you! That seems unheard of these days. I hope he’s able to refer you to someone who will truly be helpful to you.
Thank you Ruthie. I am just so discouraged by the lack of desire/willingness to know something new on the part of a Dr that is supposed to be at one of the “top” medical facilities in the world. I mean…I can feel a tusk in the back of my throat, I can find the ti of it and then lay my finger on it and follow it back further into my throat, only on the left side, where most/all of my pain has been for years. She felt it and said…“what is that? I think it’s a tonsil stone” and then said, “well I can tell you that that is no where near the carotid artery”. I was just kind of stunned and wanted to throw up. My 20 year old daughter was with me and she started to raise her voice at the doctor, etc. …oh boy, she’s a strong advocate. Bottom line, which I knew when I walked in there, is that we must manage our own care. So…she has referred me to a neurosurgeon there (Dr. Du) but I am unsure I want to spend money seeing her too if it’s possibly going to be a similar experience. I have high deductible insurance with 5K needing to be spent before anything is paid for so this is all out of pocket etc. Now…I am considering seeing Dr Timothy Osborn at Boston Medical who is on the list of drs via this site even though he is out-of network for me (going the out-of network route would cost me 10K before anything was paid for). Maybe he could direct me to someone in my network that actually believe in Eagles. I will keep you posted if I go see him. Would you mind sharing the name of your husband’s surgeon via pm? My ES (potential) is vascular type and I may need a neuro type surgeon. Thanks! Stephanie
Stephanie, My husband’s surgeon is Kurtis Dafford at Faulkner Hospital, which is part of Brigham and Womens. He is not the Dr. for you as he only does severe spine cases and did not know what ES was till I asked and he researched. However, if anyone needs a back surgeon I highly recommend him. I am concerned that he will come back with the name of the Dr you saw since they work for the same hospital. Can I ask who you saw?
Thank you, yes I feel blessed to have found this surgeon for my husband! He is such a great man and I am so hoping that he is able to find someone that understands ES. I myself know I have it, and I have a lot of things that may be caused from it, but because I have so many other things going on, I don’t know what causes what anymore. This puts ES on the bottom of my concerns at the time, but it doesn’t go too far from my thoughts.
ENT I saw was Dr. Dowdall. She specializes in voice disorders. I went to see her because she listed Eagle Syndrome as one of her areas of clinical interest (and she was in-network). I am sure she is very good in her area but clearly didn’t know very much about Eagles and shot me down when I tried to make the connection between vascular symptoms and ES. She did acknowledge that my symptoms seemed “vascular” in nature and did refer me to a neurovasc person so not a total loss. I am trying to decide if I want to spend another $3-500 cash on a visit to the person she referred me to. Doing more research…Take care and keep me posted? Stephanie