Dr. Nakaji private cost OR quote advice

Hi all,
Has anyone paid out of pocket for surgery with Dr. Nakaji? If so, what were the total fees, including the hospital stay, anesthesiology, etc.

I tried to explain that if I couldn’t afford the surgery then it’s not productive to book a consultation. The person I was speaking with did not know the answer and couldn’t direct me to anyone who could give me a ballpark estimate of what to expect.

As a general question, who would I speak to about receiving an estimate for surgery? It seems costs vary wildly between surgeons, and/or if insurance is involved. We do not have insurance and would be paying out of pocket. Any advice to navigate this would be appreciated.

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@Val7426 - In most cases, the billing office for the doctor in question would be the place to call to find out the over all cost & the breakdown of the costs for any surgery. I’m surprised the office person you spoke with didn’t direct you to the billing office. If Dr. Nakaji is part of a larger group, there may be a billing office for the whole group. You could try calling back & ask how to contact the billing office or that information be available online.

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I can tell you from first hand experience that the quest for accurate cost information is frustrating. Even though I was scheduled for identical surgeries (left then right) they used different CPT codes which changed the cost. Jennifer Borrayo at Dr. Nakaji’s office can work up a quote for cash paying patients but she has to know what CPT codes would be billed first. After knowing those codes you have to speak with someone from Banner University Medical Center to get an estimate for the hospital cost (and you have to leave a 50% deposit prior to surgery). Dr. Nakaji tends to work with a particular anesthesiology group and you need to call them for an estimate. The nerve monitoring is done by a company called Sensory testing, they will have their own cost. For Dr. Nakaji, my first surgery was billed under a set of codes that ended up with a fee of $2624 for him and the second used a different set of codes and cost $3454. That includes a 30% discount for out-of-pocket patients. Each time I had to leave a deposit of about $35,000 for the hospital. I have yet to get an itemized bill from them to see the actual cost. They get about 25% of what they bill from the insurance companies and their financial policy is to collect 33% of those costs from a cash payor. So ultimately I do expect to get some of that $70,000 back. The anesthesiologist was about $2600 each time. Sensory testing billed insurance $45,000 for the first and $26,000 for the second surgery…who knows why. Those are just made up numbers. We spoke to the tech about it prior to the second surgery and he told us not to worry, that those numbers were ridiculous and the actual bill should be a fraction of that. Hopefully he is right.

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This is where insurance covering a surgery is critical. They will look at the charge and say nope not going to pay that amount or even that charge at all. Private pay is stuck. Sure you will get a discount as a private pay but just not the same deal. I had no idea nerve monitoring was that expensive.

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That’s what nerve monitoring charges but that doesn’t mean that’s what they are going to get…even from a cash payor.

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It’s a crazy system!
I hope that you’re able to get some answers @Val7426 , & that it’s affordable…
@Chrickychricky , I’m praying that you get yours covered, & hope you’re recovering okay? :pray:

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I am Canadian so my insurance (both public and private) doesn’t apply in America. But as you likely know from other posts, we’re very limited for surgical options when it comes to ES :woman_shrugging:

Thank you so so much for taking the time to provide such a detailed reply. I had no idea it would be anywhere near that amount!! I had read your previous posts and saw how expensive the nerve monitoring was but I had assumed that was the inflated insurance price.

I will phone and ask to speak with Jennifer. I think this was Carla from the ENT division. However, it sounds like Dr. Nakaji is going to be way outside our affordability since my husband requires both sides to be done. Thanks again, I really appreciate your time and hope that your recovery is going well.

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One possibility is to use the best expert available for the side that is the most complicated. Not ideal but cost is a huge factor in this. Unfortunately, there is just no way to know what something is really going to cost. I think it is very helpful for people to post what they were estimated it would cost versus what it really costs for private pay. A place like Dr Osborne facility might be able to give a more accurate estimate since it is done in his own facility. You aren’t having to deal with separate facility hospital charges which can widely vary.

As you can see with the person who just got the surgery that nerve monitoring was crucial. It altered the surgeon’s plan. What if that wasn’t in place??? What would have happened? I don’t even know if all the surgeons use nerve monitoring. It is a question I will be asking about my own surgery.

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Early on in my quest for information and understanding I consulted with both Dr. Samji and Dr. Osbourne. Neither was the right choice for me as a styloidectomy wasn’t going to be enough. Anyway, I recall that the quote from Dr. Osbourne did include a facility fee for the out patient surgical center he uses. There was no quote for the anesthesiologist as that is separate and from a different provider. The same for Samji. I want to say that neither of them uses nerve monitoring but my memory is a little fuzzy on that point. I’m certain the nerve monitoring saved me from a whole other set of problems. I read the operative report which stated that they heard “chatter off the seventh, ninth, tenth, eleventh and twelfth cranial nerves at different times”. I’m having difficulty with swallowing solids with just a little “chatter” I can only imagine how much worse that could be. I totally expect the swallowing issue to improve as the nerve settles down. It took about 2.5 weeks for the vagus nerve to settle after the first surgery.

Other than the swallowing I’m doing well 1 week post-op. The recovery has been totally different than the first surgery. I have had almost zero pain starting on day 3. My symptoms, dizziness, floaty feeling, head pressure, tinnitus increased at first due to post-operative swelling and are now starting to decrease. There is an article in the research section authored by Dr. Higgins and Dr. Axon about a patient, a doctor herself, who became disabled by fatigue due to bilateral IJVS. She had a partial response after the first surgery and a complete recovery 10 months after her other side was decompressed. Might symptom profile was very similar and I think it will just take some time for the brain tissue that was hyperprofused for so many years to heal. As for the cost, I still cry about it. I’m still fighting the good fight with the insurance company. I will have to put off retirement and my husband has come out of retirement. Even so, he reminds me every day that he is so happy to have me back from the depths of VES and that you can’t put a price on that.

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I agree totally with your husband @Chrickychricky but then it’s easy for me to say when not the one faced with a huge bill…great that this recovery is easier and praying that they do come through for you :pray:

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Your Story and the Story of the poster from Canada and the one from Saudi Arabia that are currently being discussed show the problems with health care system. Free Health care in Saudi Arabia for it’s citizens but what good does it do you if you have some very long styloids and no one is recognizing the issue or knows how to operate on it.

It seems many are between a rock and hard place all over the world if they have this condition.

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@Chrickychricky thank you for detailing your experience (horror story) with the billing and your journey in recovery so far. I hope that you will prevail with insurance! I am heartened to hear about your surgery, although it seems so often right now people are having a longer than expected recovery. I’ve been in private discussions with others who recently had surgery and it certainly isn’t the recovery that the surgeons had projected either in timeline or temporary ‘complications’. Swallowing and issues associated with swelling seem to be the two big ones.

@JugularEagle pros and cons. Canada has an amazing healthcare system if you have an emergency. My dad had a heart attack which left him in a coma (he did have a miraculous recovery). We had been told in the US this might have been $750k-$1m in medical expenses (non-insured) and he paid exactly $0. However, if you have a complex or chronic condition then God help you because Health Canada won’t do anything.

For the moment, we are seeking second opinions and surgical consultations in the US, but we may opt to fly back to Türkiye for the surgery given recent recommendations for Dr. Kamran. He is a neurosurgeon with a sub-specialty in neck/spine surgery and his fellowship was completed in Florida. From what I have been told, he will perform a bilateral extraction (external surgery) with a vein decompression and C1 shave (if necessary) for $11,000USD. For us, Dr. Kamran seems like an excellent option that also makes financial sense. The two downfalls are the long/expensive flight, and options for follow up. Many surgeons do not like to comment on someone else’s work, it is easier for JC to fly to CA/AZ/NY/PA then it is to Istanbul in the event there are complications. So many questions, so many decisions.

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It will be interesting to see what the person in Saudi Arabia is able to do. They have a concept called medical tourism where they send you out of the country for care and it appears they pay for it.

Quebec appears to be trying to help people with rare diseases. There might be something similar in your area

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Oh Quebec… always one step ahead of the rest of us. Very interesting.

Canadians can get an out of province/country exemption, but it is a long wait for Health Canada and/or the provincial ministry to approve it. It can take several years unless it is a life threatening case (transplant, cancer, etc.) and at this point JC’s surgery would still be considered elective.

There are some people going to Washington for chemotherapy and it is covered by our health plan. I know this site is for ES support… but this newspaper article really sums up why people here are seeking out-of-country and private options.

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It seems that there is a case to be made for some people with Eagle Syndrome to be life threatening with jugular or carotid compression. For example, Harrisonboy’s situation was pretty dire. Hepworth got him into surgery pretty quickly.

It might be worth pursuing so that by the time he is ready for the second surgery it might be covered if you don’t do bilateral.

A U.S. doctor might consider it life threatening depending on the testing. For example, if you travel to Hepworth, do his testing, and the testing shows some pretty bad results.

Uphill battle.

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For the record, Dr. Samji does do nerve monitoring. He did my first 2 ES surgeries & I came home with odd little bruises on my face & chest from the nerve monitoring electrodes. As you noted, @Chrickychricky - Dr. Samji doesn’t acknowledge or deal with vascular ES involving the internal jugular vein, thus the reason phase 2 of my ES treatment is pending.

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I just had a consultation this week iwht Dr Osborne and he mentioned that he does nerve monitoring during surgery.

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@Chrickychricky Could you explain why Dr Osborne wasn’t going to be enough? I am considering surgery with him but want to make sure I have the right surgeon. He told me that I also have compression on both jugular veins.

I needed the styloids removed and c1 shaved. He doesn’t do the c1 part.

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