Yes I was pretty sure that’s what you meant.
It will be here before you know it!
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I’d love to know who your Stanford neurosurgeon is?
I don’t technically have a Stanford neurosurgeon myself, I used Stanford’s Second Opinion service through Included Health, and I honestly can’t say enough good things about them. They were a big reason I was able to finally get my bilateral femoral and inguinal hernias repaired based off the second opinion program at Columbia. Included Health coordinate’s which specialist is the best fit for your case. If you want to go through Stanford you would sign up through the Stanford Website.
In my situation, the review was based on a cervical spine MRI, and Dr. Lawrence Shuer was the neurosurgeon who reviewed it. I don’t believe you can directly choose who reviews your case, but you can list who you would like. They usually give you a few specialists to select from, depending on the specialty focus. Letting them present the best suited specialists has worked out very well for me.
If you’re looking for an assessment of vascular Eagle syndrome, they would most likely recommend a neuroradiologist or neurointerventional radiologist first. If there doesn’t appear to be a vascular component, they might route it instead to an ENT for evaluation. The process was smooth and very professional in my experience.
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Where did you end up going?
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@Luckee7 - The only doctor we know of at Stanford who knows anything about ES, & does ES & vascular ES surgeries, is Dr. Damrose. He’s somewhat new to the vES surgeries though so if you do have that diagnosis, you might want to consider someone with more experience like Dr. Nakaji in AZ or Dr. Hepworth in CO.
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Dr Bolognese—I have CCI as well as ES and while I hope I won’t end up needing a fusion, I decided (after Dr Nakaji disinvited me) that it was wisest to have continuum of care with him. I also felt more comfortable with the conservative approach he offered me–one styloid at a time, and then if that is not enough, C1 shaves, etc. Decompressing my GPN and vagus nerves on the left has given me hints of what might be possible as the surgical swelling abates.
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@jyoti - I’m glad you’ve had good care from Dr. Bolognese. He’s not a doctor we mention on our forum because he has a negative medical history which included losing his medical license some years ago. I hope his good care for you continues.
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Thank you, @Isaiah_40_31 , for the good wishes. As you will recall, I did ask about Dr B here on this forum as I was trying to make my decision about surgeons. I had my reservations and was not ‘sold’ on him entirely. My experience with Dr Nakaji, whom so many rave about and I was excited to work with, was actually kind of frightening –because he would have had me in Phoenix, scheduled for surgery the next day, without a shred of my medical history save the angio/venogram. I consider it a blessing that he cancelled me after I had the thought to at least check with his staff about some very common comorbidities. That situation made me reflect on what I actually did know about Dr B–not hearsay (for instance, he never did lose his license, though he was suspended by his hospital–not the state medical board–for a month, once). And to be honest, the detail he collects about each patient as an individual prior to even suggesting a remedy is extraordinary. As most know, it is a lot to go through, but in the end, his extensive testing yields a great deal of information that the other doctors championed here do not access. For instance (again) –had I gone to Henderson Fraser (who is held in very high regard) to investigate CCI, I would have been fused, but Dr B did invasive cervical traction which clearly demonstrated that such a fusion would not have eased my symptoms, and at a huge surgical and recovery cost. Now, I know we are focused on ES here, but a goodly number of us are also dealing with CCI and Chiari –there is crossover. I probably would not have found myself in Dr B’s care if I did not CCI, and if ES were my only concern, I think I would have been delighted to choose amongst the surgeons recommended here.
I appreciate that Living with Eagle does not recommend Dr B, and I don’t want to tromp on any toes. However, I do have to say that his meticulous, extremely personalized clinical and surgical approach might be right for some of the people here and I was sad to read that ‘He’s not a doctor we mention on our forum".’ Why not allow mention of this doctor? Or perhaps I have misunderstood you? If so, apologies. But it seems to me that frank discussion–including pros and cons of each surgeon– and honest experiences can help us all make the best choices for our own circumstances. I wanted as much information as I could get in order to choose my surgical path and I’d be surprised if a lot of us here do not feel likewise.
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I now recall that we discussed Dr. B w/ you before. Sorry for the back-up reminder. The information we have about him came from a previous director in Ben’s Friends who had more first hand knowledge of his past medical history. I actually did Google his info a number of years ago, & it reflected that he’d been arrested & had lost his license to practice medicine, but we all know that news isn’t always accurately reported & more than one person has lost face due to sensational reporting.
I’m really glad to know he saved you from getting your spine fused to help resolve your CCI. We’ve got a couple of members who’ve worked at strengthening specific neck & shoulder muscles which has reduced their CCI symptoms so that’s another approach that you could try.
Based on what you’ve said, I will check in w/ ModSupport to see if it’s time to amend our position toward Dr. B.
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I appreciate your openness. Strong emotions of all sorts seem to swirl around Dr B, but from where I sit, the real issue is: who is the best surgeon for my neck? And I would imagine many of us are entertaining that same question. He is probably not ‘the one’ for most of us, but he does have some unique skills and abilities that could be right for some of us.
And I do think that info on his past is not accurate. He has gotten into some trouble, which has to be part of what anyone considering surgery with him must take into account. But the picture is more multi-faceted than I think many may know.
I appreciate having the opportunity to open this up a bit.
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Have you had the decompression already? I’m confused.
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This is a bit odd regarding Nakaji - what imaging had you had done previously? Maybe he found the imaging compelling enough, because this would definitely be in the minority.
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I had left side styloidectomy. I will have the right done fairly soon.
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I had a LOT of imaging to send him, including a catheter angiogram/venogram with manometry, CTs with and without contrast, MRIs/cineflow, mylogram, US of brain and neck. I think he accepted me based on the venogram/manometry, but obviously he really needed more info to be really committed.
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hmm, why do you think he’d need more info? that’s exactly the imaging and process he goes through before committing to the surgery. what exactly were you looking for?
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Well…his office called to schedule, based on imaging. But when I asked –just to be sure–that he was comfortable dealing with hEDS and MCAS, I was unscheduled. It just seemed in retrospect that if that was a dealbreaker for him, it would have been wise to have solicited that info before offering surgery?
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I agree, @jyoti & have passed along that information to other members who have those additional diagnoses & are considering having a consult w/ Dr. Nakaji. Your experience, though negative, will be helpful going forward for other members who are struggling w/ multiple diagnoses as you are.
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