What Can We Do to Help Doctors Help Us?

General
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Hello again, everyone!

Last Friday, I followed up with Claudia Valerio in Dr. Costantino’s office to make sure they received my medical records prior to my consultation this Thursday. After that was addressed, Claudia and I had another long conversation about the office’s outreach to the ES community, obstacles to that outreach, and how the office might collaborate with this forum to make access to care a bit easier.

Primarily, it was stated that Dr. Costantino’s office would like to help as many patients as it possibly can. That said, Claudia has asked those of who do contact the office to please be mindful that in addition to ES, Dr. Costantino treats cancer patients as well as other patients who require head and neck surgery. Mindful of how busy his small office is, he is still keenly aware of and concerned about the difficulty that ES patients have accessing competent care in a timely manner. Even though the office is currently booking out to August, I’d say it’s still doing far better than many medical offices booking out 2 to 3 months, if not more.

Claudia has been very open with me and disclosed her personal experience of living with a debilitating chronic illness. Given her own lived experience, she has a great deal of empathy for those suffering painful symptoms caused by ES. As a result, she has made it very clear that anyone wishing for a consult with Dr. Costantino should call the office and ask for her specifically. She can be reached at (914) 517-8056. If she doesn’t answer, leave her a voicemail message letting her know you are a member of this forum looking for care. If she doesn’t immediately return your call in the next day or so, she’s asked that you please call her again and added that she is happy to receive follow-up calls. In other words, a closed mouth doesn’t get fed!

If insurance is an issue, as it is in my case, then be willing to work with the office and self-advocate to find a solution. I had to request that my insurance authorize care out-of-network. Insurance denied the request, so I then demanded that my provider appeal the decision. I had to “demand,” because these days I have to light a fire under my primary care provider to essentially get anything done. The result is thankfully just last week I was informed that if an in-network provider, Dr. Mark Marzouk of Upstate Medical University, deems out-of-network care necessary, then insurance will go ahead and approve treatment with Dr. Costantino. Remember that even though Dr. Costantino does not typically accept my insurance, his staff indicated that the office would be willing to work with the insurance provider if it approved care. Yes, it’s a pain in the @$$ to have to navigate all these obstacles to care, but it’s extremely necessary to advocate for oneself, because many physicians and insurance companies know very little about ES.

Also, Claudia stated that she left a message for a forum moderator following our last conversation 2 or 3 weeks ago. She didn’t say who she contacted, and I don’t recall what mode of communication she used. However, she did not receive a reply. The purpose of reaching out directly to the forum was/is to try to learn how Dr. Costantino and his staff (and probably the medical community in general) can collaborate with the forum to learn how to better serve the ES community. I don’t know exactly what that would look like (a survey, presentation, info session, or brainstorming maybe, I dunno), but I think it’s pretty decent for the office to reach out to the forum to open a dialogue in this regard. If any moderator(s) would like Claudia’s email address in addition to her phone number, I’d be happy to help make the connection.

Anyway, that’s all for now. Peace and wellness to you all!

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@CoHDa - I am not aware of an email or other message coming to this specific forum from Claudia/Dr. Costantino’s office. I wonder if she contacted Ben’s Friends directly ie the upper tier mods under whose auspices @Jules & I volunteer.

I think it’s exceedingly kind & generous of Dr. Costantino & Claudia to take such an interest in ES. That is a definite benefit to this community. I will look into how we might be able to utilize their offer since it’s Ben’S Friends policy not to allow doctors to be forum members on any of their forums unless those doctors are also patients. I’m sure you can understand that this is for the protection of our members as some doctors could be very self-promoting just to generate more business without true interest in providing a positive doctor-patient relationship or beneficial medical care.

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That’s great to have a doctor who’s so willing to help! I’m not sure what we can do to work together other than encourage members to contact his office, & the info you’ve given about insurance is really helpful too, but it’s a good opportunity for members…I’ve not had any contact from Claudia via BFs email. As @Isaiah_40_31 says, this is a peer to peer support group so we don’t have doctors as members, & I don’t think we’ve had any applications recently either that could’ve been Claudia…
I hope that your insurance agrees, @CoHDa !

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I can’t see any unanswered messages in the ModSupport inbox on here, either.

Richard

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@Isaiah_40_31 @Jules @Mod_support Hello and thank you for your amazing responses! I don’t believe Claudia is looking to join the forum as a representative for Dr. Costantino’s office at all. My sense is that it’s more of a genuine desire to connect with the community that’s trying to connect with Dr. Costantino. So apart from joining the forum, if, as a collective group of people living with ES, we had Dr. Costantino’s ear or were otherwise engaged in a dialogue with him as well as other providers like say Drs. Lo, Cognetti, etc. etc. etc. what would we ask him/them or want him to know or do so that getting a timely diagnosis and treatment isn’t such an epic years-long quest?

Personally, I wish there was some kind of non-profit dedicated to educating the medical community about ES and providing surgical training, so that finding a provider wouldn’t be so damned difficult. I wish there was an annual ES symposium or conference attended by both providers and those living with ES alike. I wish there was a travel grant that the imaginary non-profit funded through charitable donations, so that the added expense of travel (and perhaps even lodging) for treatment was a non-issue. I wish there was a medical facility or facilities dedicated solely to the diagnosis and treatment of ES as well as to research. I wish that the imaginary non-profit had an advocacy arm that worked to fight and remove all the many barriers that the practice of medicine as a business and insurance providers create and in turn prevent those living with ES from receiving timely competent care.

Back to the question of who Claudia reached out to, maybe she contacted Ben’s Friends directly. I honestly don’t know. But if there is a doctor who is signaling through his office manager that he truly wants to know how he can better serve the community, I’d love to see the forum reach out to him, not as a member, but as a resource and as a respected expert who can speak for patients in places where we don’t always have a voice, if ever. And I don’t think Dr. Costantino is looking to drum up business. Between his ES patients, his cancer patients, and others, his practice is busy, so clearly he doesn’t need extra work. That’s evident from the number of patients he has here on this forum and those who have expressed the desire to become his patient. In any event, hopefully one of you will contact Claudia to open a dialogue and find out how it might benefit those living with ES. It might not result in Dr. Costantino or someone else creating a one-stop ES non-profit, but it might help those who are fighting their insurance providers or fighting with medical providers for referrals, imaging, etc. Anyway, Dr. Costantino and Claudia seem like good allies for the forum to have.

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There does seem to be a bit of movement on the awareness front with ES, there have been research papers written, and I think some of the doctors are in contact/ are aware of each others work, here’s a couple of things which have been happening:

Here is the link to the webinar recorded with the top doctors researching this condition! (Venous Outflow) - General - Living with Eagle
I’m UK, so probably not the best one of us to reach out to Claudia, I don’t understand your insurance system for a start, it seems pretty complicated!
But it’s great that they want to help :smiley:

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I will be dealing with this shortly.
I see him next month. He does not take my insurance but the hospital does.

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I spoke to Claudia today. She is a lovely person & very enthusiastic about helping patients with ES, as is Dr. Costantino. She apologized for the wait time to get an appt with Dr. Costantino, & I reassured her his appt wait times are very reasonable compared to other doctors on our forum list.

I did explain why we don’t admit doctors to our forum unless they themselves have ES (we’re a peer to peer support group). I also addressed the unanswered email situation as neither Jules nor I nor anyone in the upper level moderator group has seen anything from her. Not sure where her message might have gone. At any rate, her questions are answered.

I encourage anyone who suspects or has been diagnosed w/ VES or non-VES who is looking for a surgeon to contact Dr. Costantino’s office. He does do Telehealth visits for an initial consult. If you want to speak to Claudia directly or via email, please send me a PM, & I’ll give you her contact info.

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This thread has been on my mind. If there were more doctors aware of Eagles we wouldn’t have such disturbed lives. (18 years so far for me and my family.) In the webinar of May 24th the lead doctor of the discussion said there is now a diagnosis code and also a book about this. Let’s try to get more details and maybe organize to get this official info to more doctors.

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@Jules First let me apologize for going offline for so long. The god-awful combination of POTS/IST and ES makes life absolutely miserable. One is bad enough on its own, but the two together can really knock me for a loop for long stretches at a time. So, again, my apologies.

I have read a number of peer-reviewed research papers and am aware of the conference held in January. Those things, however, are really a small drop in a big bucket overflowing with people who need accurate diagnoses and timely treatment. Thirty doctors, give or take, aren’t going to cut it when people across the globe are searching hill and dale for an experienced medical provider, because 99.9% of the medical community have never even heard of Eagle syndrome or any of the various forms. At least it seems that way.

And I’m sure Eagle syndrome is not as rare as its said to be. If anything, it’s under diagnosed, because the vast majority of physicians have never heard of it and therefore misdiagnose their patients, if they don’t altogether dismiss their symptoms.

It’s the same thing with POTS (postural orthostatic tachycardia syndrome). People went years without any diagnosis or were misdiagnosed with anxiety disorder. I had a physiatrist write in my medical record that I was “catastrophizing.” I wasn’t catastrophizing. She didn’t have the diagnostic skill or ability to recognize POTS, so she dismissed me as a head case. Another provider had the knowledge the other lacked and referred me to one of the few doctors in the state who diagnose and treat the disorder.

Thankfully, POTS is now getting more attention from the medical community, but sadly it’s because of COVID. The virus can apparently trigger POTS, which is why the majority of those with long COVID have also been diagnosed with POTS. COVID has brought POTS (a form of dysautonomia) into the forefront of the medical community, so it’s finally getting the attention it needs, which helps to bring in research dollars and create more awareness.

That’s what needs to happen with Eagle syndrome, minus a deadly pandemic.

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@Brandy have you had an opportunity to speak with Claudia? When I spoke with her a week or so ago, she said she was going to be reaching out to someone from the forum who had previously been told that Dr. Costantino does not take their insurance. She didn’t mention any names, but I thought perhaps it might be you.

Anyway, when you call the office, ask to speak with Claudia (if you haven’t already) and tell her you’re a member of this forum.

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@Isaiah_40_31 I am so happy to know you had an opportunity to speak with Claudia. She is truly a gem. Every medical provider should have a Claudia in their office.

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@Violin You are so right about lives being disturbed, and a lot of human potential wasted as well, I believe. I haven’t come across any books on Eagle syndrome, certainly nothing scholarly anyway. The only thing I found that seemed interesting to me was a t-shirt.

As for the diagnosis code, I don’t know how new it is, but Dr. Costantino wrote “ELONGATED STYLOID PROCESS SYNDROME (ICD-M54.89) (ICD10-M54.89)” on my order requisitions, that along with a few other diagnoses/codes for common symptoms typical of ES. I suspect that’s pretty much consistent amongst members on this forum. But I could be entirely wrong.

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When I had my ES surgeries, the ICD code used was for a craniectomy because there was no code for ES/ elongated styloid. Glad to know there’s a styloid code now!

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This code is one of those codes designated for situations when a very specific code doesn’t exist.

It is 2024 ICD-10-CM Diagnosis Code M54.89: Other dorsalgia [other dorsalgia] / backpain

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Hey there,
I don’t believe Claudia is there anymore (?)… FYI

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That’s sad! She was quite the ES advocate.

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Do you recall the code they are referring to