I hope that recovery starts being a bit more positive again soon! Let us know what the scan shows & whether you opt for the second surgery…
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Hi, Is this Dr. Shahil Mehta with BIDMC?
No. Dr Nikhil Mehta Vascular Intervention Partners . 22455 N Miller Road Scottsdale
1-480-435-9100.
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Well…I was thinking that I really appreciated the fact that Dr Nakaji declined to operate on those he felt either had issues ooutside his area of expertise or might not benefit from it. I felt –silly me–like he was confident he could help me. Yesterday, while scheduling with his office, I asked about MCAS and hEDS and his admin person told me she’d speak to him. Today she called to say that he would not be operating on me and that I should see Constantino. He felt that with those conditions, I had high risk for complications and should be closer to my surgeon. While I continue to appreciate that integrity, I am more than a little deflated. I am not at all as enthused about Constantino, but ….onward.
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Thank you, I was thinking I got lucky and he was in Boston, very close to me here in New Hampshire. Dr. Sahil Mehta is also a Vascular Interventional Radiologist.
I reached out to Dr. Nakaji this past weekend and received a replied to fill out the consult form and provide the most recent imaging, but I don’t have a CTV. I have an MRI Cervical Spine and older CT Neck and Face scans from 2023. These were used for a recent second opinion from Stanford neurosurgery recommending further assessment for Eagle Syndrome as they noted elongated styloid process with suspected venous compression based on imaging and symptoms. MRI Cervical spine imaging also revealed a paraspinal cervical lesion at C1 that the reviewing neurosurgeon acknowledged, though it has not yet been confirmed whether it encroaches into the spinal canal.
I am unsure how best to proceed. Get the imaging done here and pray for a competent radiologist or move forward with the consult with current imaging and go from there based on recommendations. I have also reached out to Dr. Constantino but reading through the forum it is not clear if he also performs the C1 resection which may be appropriate in my case and it sounds like he is booked out far and the symptoms are progressive and as you know living with this are debilitating.
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@MGORNEAU - I think you should send Dr. Nakaji what you have scan wise & go ahead w/ your application for an appointment. The reply you’ll likely get is that he specifically wants a CTV to preview before he’ll book an appointment with you but you can ask if there are specific instructions for the CTV that you can give to your doctor to give to the radiologist when your referral is made.
Doing the initial intake work will potentially get your foot in the door at Dr. Nakaji’s office.
Re: Dr. Costantino, he ALWAYS works w/ a neurosurgeon who does the C1 shaves during his IJV decompression surgeries. It would be either Dr. Tobias or Dr. Lo but more often Dr. Tobias these days. He isn’t booking out as far as you might think i.e. maybe a couple of months which is not long compared to other doctors on our forum who do the vES surgeries. It is true, though, that you might be able to get an appointment w/ Dr. Nakaji soonest of all.
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@jyoti - I’m really sorry that Dr. Nakaji rejected you based on the MCAS & hEDS diagnoses. I think it would behoove him to learn about hEDS in particular since so many people are being diagnosed with it & so he feels more comfortable helping patients who have that diagnosis. Dr. Hepworth & Dr. Costantino don’t bat an eye when a patient w/ an hEDS diagnosis come to them. Dr. Hepworth, in particular, seems to have a good number of other specialists he refers his patients w/ co-morbidities to so they can get further treatment for the things that are outside of his specialty.
Re: my less symptomatic side being done first: Dr. Samji didn’t like the angle my right styloid was growing (almost straight down) plus it was thicker than my left one but a bit shorter. I begged him to do the left side first but he was emphatic that the right had to be #1 so that’s how it went for me. In the end, I think it probably didn’t matter which one was done first since both were causing symptoms, just different ones.
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Just read all of Isaiah info and it was spot on.
for both doctors. I chose to do CTV with Nakaji recommendation Dr. Mehta as I did not want to repeat it. I suspect you may have insurance to cover you with either vascular radiologist?
I did CTV on a Tuesday and met with Nakaji the next day. In your intial consult he should give you some good info. In my casein thr intial consult he pointed out a number of things were suspect but wanted those to be confirmed by CTV.
Mehta and Nakaji seem to have a very close working relationship.
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Thank you, that helps me a lot in the decision process knowing that Dr. Costantino is also open to and able to accommodate the C1 shaves. I did hear back from Dr. Costantino’s and they got me set up in their portal. I’m now waiting to hear from the next person in the process, but I understand they’re busy and I’ll hear soon.
The fact that he’s only about four hours away from me is a big plus for logistics and follow-up care.
I have a second appointment with my new PCP tomorrow. The first appointment they were very engaged and supportive. I will speak with them about the CTV and bring the documentation I received from Dr. Nakaji’s office regarding the appropriate imaging.
Any additional thoughts I should present to the PCP tomorrow, to move this forward in a timely manner? They have the second opinion from Stanford, are taking it serious, and seem open to suggestions.
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It seems like things are moving along for you to get the appointments w/ Dr. C & Dr. N, @MGORNEAU . I think just getting the CTV order (request that the radiology tech include some 3D images as those will help you to better see what’s going on).
I don’t know that there’s anything to tell your PCP to expedite you getting the consult appts w/ Dr. C & Dr. N except maybe ask if he can request the CTV be done “stat” so you don’t have a long wait for it.
I’m glad you have the weight of Stanford’s opinion behind you, too. It always helps when a high powered medical institution backs you up.
I don’t think you can go wrong w/ either Dr. C or Dr. N doing your surgery. After you meet with the two of them, you may have an opinion that one is your preference over the other based on personality & surgical approach.
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@Isaiah_40_31 I agree—hEDS would seem to be a part of the picture for many of us, and MCAS as well and it would be good if he were more comfortable. Now…of course I haven’t had any communication directly with either him or his NP, Eileen. It has all been relayed through Sue. My best understanding is that he was saying I was more likely to have complications and thus it would be best for me to be nearer the surgeon geographically. I actually think it would take about as long to get to Constantino for me, but …whatever. Wasn’t meant to be, I guess. I do have an appointment for a consult with Constantino in about six weeks.
So Dr Samji made an anatomical choice in your situation about first side? But you make a great point about the need for both to be gone in order to alleviate your symptoms. How are you, by the way?
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@jyoti , @dreamliner commented above that MCAS was an issue so Dr C was an easier choice, so presumably he’s familiar with it…
@MGORNEAU Apparently Dr Nakaji needs a Dynamic Manometry flow venogram CT according to @Ihurt in a recent discussion.
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I was reading that a CTV will not provide a full visual of the styloid process’s. My last CT Neck and Face was in 2023 and the right is a little over 5 cm and the left not quite 5cm. Is there additional imaging I should request to fully visualize the styloid process’s?
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Thank you this is really good to know, I am going to bring the information sheet that Dr. Nakaji’s office sent along to my appointment.
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Hi @vap thanks so much for commenting, your post was encouraging to read. I did start PT around week 6 post-op & I think that + many other strain avenues led to the first crash I had about Week 7. I tried to peel lots of activity off the last two weeks but I still feel progressively worse each day since. I think it can get real easy to be obsessed with the day-to-day due to many things & typically I get the most frustrated when I feel I’m giving 110% with discipline & things still don’t improve.
With my history of scarring we were a tad concerned that my IJV might become recompressed following surgery, but I guess I won’t know til we scan. It’s real interesting to me how people have symptoms that are stronger on one side, that’s gotta be a weird sensation. As long as I’ve been symptomatic it’s been bi-lateral for pretty much everything. I do know in the periods I’ve had an elevated HR post-op, the “strangling” feeling in my neck seems to be worse on my left now, and the occipital pain during the same period is worse..maybe due to collateral dynamics somehow?
Thanks for the encouragement with everything – I was telling my mental coach about how it feels frustrating to wait even more after being sidelined almost all of my 20s, so at least we’re trying to work on that problem!
@Isaiah_40_31 thanks also for that analogy, I think there might be a lot more to venous drainage dynamics than what is communicated to us, so what you said makes perfect sense.
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A head and neck combination CTV will show the styloid processes. If you get just the head you might miss some of them, and if you get just the neck you might miss some of them. So you want a full head and neck CTV. CTV is beneficial in that it not only shows your styloids in full length, but also shows any compression happening in your neck, mainly the veins such as the IJVs
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Thank you, I was able to connect with vascular after my PCP appointment. The vascular was not familiar with Eagle Syndrome so I sent along my second opinion, the imaging and symptoms. The nurse replied saying they would order a CTV neck/chest. I will make sure to clarify it needs to be a CTV head/neck. I sent them Dr. Nakaji’s requirements, why do they make this so hard? You have to stay so on top of it all which is so difficult when you don’t feel well and are in pain. This is the image my second opinion started with and lead the neurosurgeon to look at my CT Face and neck from 2023, where he saw the elongated styloid process’s. Going through the threads I have noticed you are really good at interpreting imaging. This is from my MRI Cervical Spine_C1/C2 I am interested in your thoughts?
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I don’t have much experience looking at MRIs unfortunately. Do you have access to your head/face and neck CT from 2023? I can help with that for sure!
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I am going through the same thing with Dr. Nakaji’s office. They won’t take you on as a patient until you have all the pre-requisite scans but you need them to order it exactly how they want it. It is a vicious cycle but they did have a local doctor, in Phoenix, that would help but I can’t get in to see them until late October.
To my knowledge, this is all done to ensure they have the highest likelihood of getting insurance to approve of any treatment. Also, according to his front staff, he has a large influx of demands to address and assess possible eagle’s syndrome that he physically can’t see everyone and it prioritizing patients with a vascular component.
That is why they want that CTV before accepting. Like you said though, it is frustrating because when you don’t feel great, it’s difficult to track and get everything they need. Especially, when they want a very specific set of parameters and and positions for that CTV.
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