Consult with Dr. Costantino

It’s taken me awhile to share this, because of a.) extreme fatigue, b.) my 3-second attention span, and c.) refer back to a and b.

About a week ago, I had a truly meaningful telephone conversation with Claudia Valerio, who is Dr. Costantino’s practice manager. I called the office to schedule a new patient consultation, and when Claudia learned that it was me on the phone with the medical scheduler, I was immediately transferred to her line. The person who I was initially speaking to stated that I would have to travel to White Plains for the appointment, because Dr. Costantino doesn’t do virtual appointments. After being transferred to Claudia, she told me that I absolutely could schedule a telehealth appointment and added that I wouldn’t be made to travel across state and back for a consultation. Of course not!

Claudia scheduled me on July 20, apologizing profusely for not being able to schedule me sooner. She said Dr. Costantino had limited his hours for the month of June. In addition, the office is in the process of moving. Don’t ask me where, because I didn’t think to ask in the moment. I was busy taking in how patient-centered the experience was, something I’m not accustomed to. So, apart from scheduling the consult - $350 - we discussed the matter of insurance. Dr. Costantino doesn’t accept my insurance, but Claudia indicated if out-of-network care is authorized, the office will work with my insurance provider to negotiate a reasonable fee for services.

Before the call concluded, we talked about doctors in the northeast, who are providing care to the ES community. Claudia knew every physician I named in New York, Connecticut, Pennsylvania, and New Jersey. She didn’t have anything negative to say about any of them. Rather, it became evident that the doctors know of and respect each other, because there are so few of them who actually have the experience to properly diagnose and treat ES. She said the stories heard from patients in the office are devastating and asked if I had any thoughts about how Dr. Costantino can reach more patients. I told Claudia that he is frequently mentioned in this forum and gave her the name. She said he was considering creating a blog or something along that line to create more awareness about ES. I directed her to some of the videos online by other providers like Dr. Osborne and suggested that maybe he might think about doing likewise.

All in all, I had a 40-minute conversation with Claudia that was entirely unexpected, but thoroughly appreciated. The following week my insurance denied my doctor’s referral for out-of-network authorization stating I could receive the same care in-network. Ha! If that were truly the case, I likely wouldn’t be in the position that I am now. And by the way, who in their right mind wants to travel away from home for major surgery if they absolutely don’t have to? Anyway, the appeal process has been initiated, so now I’m doing what I’ve done for years, waiting. But at least, I’ve got a consult scheduled with Dr. Costantino in July with the help of Claudia.

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Courtney,
So glad to hear you were able to speak with someone that actually cared and was concerned about your specific healthcare needs. It’s rare to meet someone in a doctor’s office these days who’s willing to think outside the box and truly show concern for individual patients’ needs. I trust the appointment will go well in July and that this doctor will be able to meet your expectations. Take care.

Mark, ModSupport

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@CoHDa - All I can say is, WOW!! I’m so glad you received such a great reception from the office manager herself plus you felt heard. Those are two invaluable gifts that most don’t receive when contacting a doctor’s office. It speaks highly of Dr. Costantino, too. Please make sure to let us know how your appt. goes.

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@CoHDa Thank you for the update! It’s wonderful to hear about your experiences with Dr. C. Please keep sharing your updates as you go. I’m genuinely interested in hearing about your progress. Sending you my best wishes and hoping you achieve great results with your treatment.

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I live in Connecticut. Dr. Costantino is very close to me. His office does not take my insurance. I have already consulted with Dr. Annino who wants to do surgeries. However, he does not have a lot of experience with vascular ES and I have a lot going on. I fly out to Denver next month. Hepworth is indeed my top option. Distance or no distance. I would love to consult with Dr. Hui as I find him amazing but Hepworth seems pretty good. Insurance holds the cards and creates more stress for the sick and weak. After my visit with Hepworth, visiting Costantino is still an option. I will see what Hepworth says. Where do you live?

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Pleased for you that you had a good experience (finally!) Interesting that the doctors talk to each other & it’s good to hear that Claudia seemed positive about the other doctors you mentioned…I hope that your insurance appeal is successful!

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@Mod_support Thank you so much for the good thoughts, Mark! Claudia treated me not just as a patient, but as a human being. That is indeed a rare occurrence in my personal experience with doctors and their staff. I wish all of us could encounter the same generosity of time and care with each doctor-patient encounter. And likewise, take good care.

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@Isaiah_40_31 You are preaching to the choir! I could not believe how patient and kind Claudia was. She’s a complete 180-degree turn from my primary’s practice manager, who I’ve had the misfortune of speaking with on two recent occasions. Her demeanor really isn’t suited to engaging patients directly. After my initial experience with Dr. Costantino’s office, that’s become all the more apparent. That said, I will be sure to share the outcome of my July appointment with the forum.

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@Buzz I’ve been following your progress as well and learning a great deal! Thank you for sharing so candidly your journey with ES and the hurdles to receiving treatment in the US for those abroad. I wish you perseverance and courage. Most of all I wish you good health and wellness!

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@Brandy You are so right! Insurance does hold all the cards. It’s the age-old story of David versus Goliath. Still I’m holding out hope that the situation with insurance will work out. If not, I will consider raising the funds to be treated by my doctor of choice. There is too much going on with ES and too many surgical risks for anyone to entrust their health and ultimately their life to a physician who has little to no experience treating it. To answer your question, I live in the Finger Lakes Region of New York, which is about a 6 or 7-hour drive from the NYC area.

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@Jules I thought it was incredibly interesting and uplifting to hear that the doctors do know and communicate with one another. I got the impression that they are all peers, who have worked closely together on some cases at some point or have consulted with one another, etc. Aside from that, I forgot to mention that Dr. Krespi is Dr. Costantino’s mentor. So, yes, it all seems very positive as far as regard for the other doctors is concerned.

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Claudia’s the best! I’ve been under some time pressure to schedule surgery with Dr. C and she’s been very sympathetic and helpful throughout.

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You are fortunate you got someone who followed up with you. I’m local to Dr Constantino and when I called they told me they didn’t take my insurance and that was that, no mention of our of network or any incline of them wanting to see me. Disappointing. On another note were there any other Drs that was recommended in the tristate or new England.

That’s rotten for you @lilwider. Have you seen the doctors list in the Doctors Info Section? Here’s a link in case you haven’t:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope that you can find someone to see you!

@lilwider - I wonder if whoever you talked to is used to people basically being done w/ the call when they find out Dr. Costantino isn’t in their insurance network & just expected that from you (not proper phone etiquette, but I could see it happening) so the conversation just ended. If you want to see him regardless of your insurance situation, would you be willing to call back to ask if they’d send an appeal to your insurance company for coverage? You could ask for Claudia the ofc manager as it sounds like she’s more “user friendly” than some of the other phone-answering office staff.

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That’s wonderful that Claudia was so helpful! Such a rare thing to have somebody like that!

I’m sorry you still have to wait. The waiting is what really spirals me into despair.

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So I am working with Dr.Lo, so I have seen that they work together. Am I wrong in my thinking or so you think I should contact Dr Constantino as well? I appreciate your guidance

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Yes, I have been exploring the doctors list and am trying to stay as local as possible.

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Yes…I don’t know how some offices have people who have no empathy or kindness towards patients who are suffering with this rare “devil” called ES! One thing I know is, YOU HAVE TO PURSUE YOUR HEALING! You have to be your own advocate and just jump over the people that are in your way…Be persistent and don’t just take whatever the young and unexperienced receptionist who answers the phone says. When I was trying to get diagnosed for 17 years, I was suffering and all I wanted to do was go to sleep and never wake up. It was horrible and I had two young sons to take care of and a husband who had to continue to see me at my worst! I moved to Oklahoma City from Houston to finally find a praying doctor who assured me that he would find what was wrong with me…That was Dr. Greg Krempl at Univ. of OK. A week after he found ES, I had the surgery through my mouth on both sides. Yes…it was the surgery from hell but, I survived and my life turned around 360*. I no longer have the constant poking in my throat or having the feeling that something is stuck in my throat. I feel bad for those who are still having issues that I was having too. I want to thank Jules and all of those who created this forum so that we can encourage others going through this touch journey.

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@lilwider First of all, let me apologize for taking so long to respond. My energy level ebbs and dribbles. The heat and additional stress of self-advocating exacerbates the lethargy. That said, I agree with @Isaiah_40_31 and @Hadassa about taking the bull by the styloid. Call back to Dr. Costantino’s office and ask to speak with Claudia. Tell her that you got his name from this forum from past and current patients and would like a new patient consult. Can you pay $350 out-of-pocket for the appointment? Then ask to Claudia to schedule you AND be sure to tell her that you are already working with Dr. Lo. If you’re working with Dr. Lo that is also likely to give you the green light. The other option is to ask Dr. Lo about consulting with Dr. Costantino. He could make a referral. Once you do that, then you can discuss the possibility of working with his office on the insurance issue. But you’ve got to proactive and advocate for yourself as overwhelming and exhausting as that might be. It’s a shame that we have to, but clearly it is a must.

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