My daughter is a very complex case with many syndromes in one body. She has POTS, MCAS, hEDS ES as well as abdominal compression. Looks like it may be awhile till we can have a consultation with Dr Hepworth. Does anyone know if Dr Peter N? (Sorry, can’t remember how to spell his name) from Arizona does just as well with complex cases? His availability seems to be several months sooner. We prefer a surgeon who uses conservative measures as far as shaving vertebrae so as to not initiate a CCI problem. Any and all thoughts are appreciated!
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Dr. Nakaji does do complex surgeries with a high success rate but he is reluctant to operate on someone who has as many comorbidities as your daughter has. That said, it’s worth calling his office to see if you/she can have a consult with him.
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We have had some members who have been turned away by Dr Nakaji unfortunately, & he does seem to be reluctant to treat patients with MCAS. We’ve heard mixed things about what testing he needs to see to consider taking on a patient too; some have been asked to get a dynamic CT venogram pressure testing manometry beforehand, some asked to travel there and have the testing done with Dr Mehta who he works with, so that would be quite invasive to have done if he might not take on your daughter’s case?
Here’s a link to @jyoti 's post about being turned down by Dr Nakaji;
NGL slightly triggered by all the posts about people getting diagnosed 2-3 years in… I’m at a decade and a half - General - Living with Eagle
You could get in touch with Dr Costantino otherwise, I don’t know if his waiting lists are any shorter?
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Hi Rosa, You may find this video useful : Venous Congestion with EDS Webinar
From 45:OO onwards Dr Paolo Bolognese, neurosurgeon, has a team that allows him to deal with special patients like your daughter.
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Thank you for all your replies! It sure helps to sort through things. We do not want any invasive tests, we’ve had way too many of those! I would not want to be responsible for doing surgery on somebody either, if I didn’t feel comfortable. Neither do we want to watch our daughter be wheeled away with someone who isn’t confident with her case. I feel sure someone else mentioned Dr Bolognese to me earlier and I forgot about that. I don’t think I see his name really often here on the forum. I would really appreciate hearing from others who had surgery with him. As I mentioned somewhere, we’re solidly afraid of seeing someone not familiar with hEDS, MCAS, and possibility of stirring up CCI.
Hi Jules. I’m curious, if you know, why he would turn down a patient with MCAS? I can understand connective tissue disorders being a concern perhaps, but what is it about MCAS is a concern with this stuff? (I have MCAS, and Nagaki’s office has requested some additional testing - a CTV - even though I did clearly list my MCAS, EDS and other comorbidities.) thanks, t.
Hi,
I also have hEDS, POTS, MCAS, and eagle syndrome with vascular and nerve compression. I had bilateral styloidectomy with Dr. Ryan Osborne 3 weeks ago and he did a very good job. It’s still a little early for me to tell if my symptoms have gone away but I’ve seen small improvements in only 3 weeks and I’m still quite swollen. Dr. Osborne said i should wait at least 3 months to see symptoms improve, if not longer, but I’ve already seen some improvement.
My case ended up being a very difficult complicated surgery because my left ligament was extremely deeply buried and difficult to access. Despite how difficult the surgery was, Dr. Osborne still did a great job and I ended up being just fine, just with more swelling on my left side than my right.
As far as EDS and MCAS and such, Dr. Osborne told me he’s worked on a number of patients who also had EDS like me. He didn’t really seem to think it changed the course of surgery or healing much. He said his EDS patients sometimes take longer to see benefits from the surgery. Otherwise, they basically just treated me the same as anyone else. I asked his staff not to give me fluoroquinolones, as they’re contraindicated in EDS, and they didn’t give me any… of course I don’t think flouroquinolones are usually given during styloidectomy surgery and recovery, but I asked to avoid them just in case.
Dr. Osborne was kind and understanding about my chronic illnesses, he was not skeptical or rude at all, it just seemed like the way he operated on me wasn’t going to change much just because I had EDS and comorbidities. Also, Osborne does not do C1 shaving or vascular stents EVER. He seems to do a really good job leaving very cosmetic looking scars too. My scars are healing up great after 3 weeks, just a little swollen.
Can’t recommend Osborne enough, only problem is he charges more than everyone else. He’s the best though. My only complaint was there was one staff member I felt was rude to me and lacking empathy, but besides that Osborne and the rest of the staff were wonderful. Money well spent.
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I don’t know, maybe @jyoti can tell you why…
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I’ve sent you a private message.
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What I was told by Nakajis scheduler was that he would not take me as a patient because comorbidities (hEDS and MCAS) made me more likely to have complications and that I should be working with a surgeon closer to me. He suggested I see Constantino, since I am on the East Coast. The frustrating thing, though, was that I was able to be in Phoenix for two months, much closer to Nakaji there than I am to Constantino when I am at home. So…no communication really. Or rather, just one-sided without soliciting any info from me.
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I’m sorrry, Dr. Nakaji wasn’t willing to explore your situation further rather than just shutting you down like that. It would have been nice if you could have explained your situation as it makes sense to see him if that’s where you’d be do 2 mos.
I sympathize! As I’ve mentioned before, I had a similar situation w/ a doctor I requested a consult with in California who told me she wouldn’t see me because I’m out of state & my insurance wouldn’t cover me (it would). She told me to go to a doctor in my own state then referred me to Colorado which is 400+ miles away. Go figure!
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I’m sorry that happened to you too, Isaiah. I suppose I have to trust that in the end we find our way to the person we are meant to work with, but it sure is frustrating to think you have it figured out only to have the door slammed in your face.
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I completely agree, @jyoti! It’s that period where hope is high then suddenly dashed that’s hard! But I agree with you that we eventually find our way to the person we are meant to work with.
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We are kinda thinking Dr Hepworth, if we could only get ahold of someone in the office. We may wait awhile but our friends learned that he also checks up further on the head for further compression. May as well get the whole works done at once, right? We’ve been listening to webinars and the like. Dr hui is my daughter’s favorite but he is not licensed in our state., which means we would have to travel to see him for a consult. She is not up to that. Unless we still pursue the shunt placement…that has been postponed for now, till we get another opinion.
Sleep well!
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@Rosa - Try emailing Dr. Hepworth’s scheduler to get an appointment - kwright@denversinuscare.com - instead of calling the office. I’ve heard there are some staffing changes going on in Dr. Hepworth’s office so things are a bit discombobulated right now.
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Thank you, I will try it! If that doesn’t work, I will keep ringing their phone till they are annoyed enough to take me seriously.
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@Rosa - Just a heads up - Even with emailing it may take a week or more before you hear back. Sigh…
Oh. Then I’d better settle in for a long wait. 
I always feel in a hurry when we finally decide what we’re doing!
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@Rosa - I totally understand & am in the same boat w/ you!
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