I’m curious if anyone has been told they were a candidate for decompression by Dr Hepworth, and had Constantino not recommend surgery?
Or if those two Drs are usually pretty much on the same page with most cases?
I know from my own experience( and from hearing from others) that Nataki will often tell patients they don’t even have a jugular issue, whereas Dr’s like Hepworth and Constantino will operate on the same patient which is a more extreme version of patient selectivity.
Recently, I spoke to one patient who consulted Constantino and was not recommended for surgery, as she only has jugular compression in certain positions(not constant). I’m not aware that she consulted any other ES surgeons though.
I did not consult with Constantino myself prior to my surgery( only consulted Osborne, Nataki, and Hepworth), but I’m a bit curious to know what he might have said(?) and/ or the different requirements each of these Drs have for surgery.
@Glitterbats - It seems Drs. Hepworth & Costantino have similar diagnostic criteria for ES w/ IJV compression & recommendation for surgery, however, there will be times when there is disagreement. My perception is their greater difference lies in how aggressive each one is with the decompression surgery. Dr. Costantino operates together with a neurosurgeon (Dr. Tobias) who does the C1 shave, but Dr. Hepworth does not. From what we’ve heard, the Costantino/Tobias team is the most aggressive w/ the C1 shave as the whole transverse process is taken off of C1.
I’m going to speculate that Dr. Hepworth wouldn’t turn down a patient who only has part-time IJV compression & who is symptomatic because even that can cause the terrible symptoms we know to be associated with vascular outflow obstruction.
Yes, I agree and thanks for the feedback. Hep did include a C1 shave with my procedure, but it does sound like Constantino is more aggressive in that area. It also makes sense to do surgery even if someone’s issues are positional, since id imagine its would be a huge amount of work to constantly try to avoid anything and everything that might cause a flare/ but I also respect that some people maybe just don’t want to have surgery. Personally, I’d much rather have surgery
Najaki said my daughter was too complex for him. Hepworth was willing to schedule surgery. Costantino wants a venogram done prior to surgery to insure she is a good candidate. He is 98% sure but doesn’t want to go in without this confirmation. Trying to find someone who can do the venogram because Costantino’s person said she is too high risk for the venogram to be done at his hospital! It’s been months and Costantino hasn’t found anyone in Denver or Chicago or New York!
That interesting but also sounds stressful. Are you wanting to have surgery with Constantino instead of Hepworth for any particular reason? The imaging stuff can be such a hassle. I never actually met with Constantino but I had my imaging sent over and his assistant person said I needed to re-do my CTV but I never did. All the other offices said my imaging was correct.
@mogulmama I’m sorry that your daughter isn’t able to get the testing done for Dr Costantino, very frustrating that the same hospital won’t do it! Other members have mentioned a few doctors who do the venogram but they seem to be more West coast and presumably flying for the procedure would be extremely difficult?
I hope that something changes, that maybe Dr C will agree to the surgery without the venogram.
@mogulmama - 98% certainty sure sounds like a high enough % to me for a doctor to choose to operate. I’m a bit surprised Dr. Costantino has put up this road block for your daughter. It’s good that Dr. Hepworth is willing to do her surgery w/o additional testing. Tough for you to know whom to choose on her behalf though. What is your daughter’s gut feeling about whom she’d like to see for surgery?
I had the same feeling! But Costantno really wants to be sure this surgery is worth it for her. She is so ill. And recovery will be complicated with MCAS and EMF sensitivity. She doesn’t trust Hepworth at all. She has been consulting with him for 2 years now and he changes his story and doesn’t really listen to her. His arrogance scares her. She likes Costantino much better, but he has not followed through on his promise to find another source for the venogram – either in NY, Denver, or Chicago. It’s very frustrating.
Thanks for your personal response. You and Jules care so much.
Thanks, Jules. It is frustrating! She wants to go with Costantino over Hepworth, but Costantino has really not followed through. There has to be someone who can follow his venogram protocol in Denver or Chicago. And yes, she cannot fly. In the meantime her CSF leaks are just terrible.
Thanks for this post - I found it and all the responses VERY helpful. My 18 year old daughter has been offered surgery by Dr Hepworth and also has a consult with Dr. Costantino in a few weeks. Does anyone know if Dr. Costantino usually requires the cerebral venogram before surgery? It just sounds like a huge obstacle for some of these patient, my daughter included. Plus, she has had a CTV which clearly shows severe compression mostly caused by the C1.
Hey, (the mods may have better info than I do), however, it’s my understanding that all these surgeons have their own preferences in terms of imaging which can be a headache for patients. Hepworth is the main one I know of that likes to do the jugular ultrasound( is that the ultrasound you were referring to?) in addition to the other imaging- the NP told me he uses the ultrasound to evaluate the pressure levels. I live in CA and was able to get that ultrasound done correctly at Cedar Sinai in LA( had multiple talks with imaging tech prior bc I wanted to make sure they could do it/ + after not having luck with several other imaging centers). Allot of patients include it when they are in Denver( I may do this for my follow up scan or I’ll go back to cedars) since whatever facility his office uses is familiar with the protocol, and because many people struggle with getting it down correctly locally. If your leaning towards Constantino though( wasn’t sure from your msg if you are), I’d doubt you’d need to do the ultrasound. I’m also kindof curious why leaning towards Constantino if so? Regardless, hope your daughter finds the right fit.
For what it’s worth, I am very skeptical about Hepworth’s office. I know he is apparently a great surgeon and has helped a lot of people, so there’s that. But I don’t know that I’ve ever seen anyone declined for surgery by Hepworth. He seems to take everyone, and the rates he’s charging and the number of people who have VERY stressful financial things with them (including as you show up at the hospital for the surgery!) just put me off. His office manager was so snippity with me. When I asked if they have a lot of people who no-show at the consults with him, such that they need to collect $900 in cash more than six months in advance, she said, “No, no one has ever been a no-show.” But she didn’t understand my point (which she made!).
Also, my neurologist urged me to look at the publishing records of these surgeons. He said especially since it’s newer science, the ones who are publishing are truly interested in advancing the field. From my rudimentary searching, Hepworth has not published anything in years. Costantino has published well over 100 (I forget the number) of peer-reviewed journal articles, so that was very encouraging.
Costantino today told me that he turns people down “often,” and that he is just guided by the data he sees. He did say that he requests the balloon thing when the case is less certain and he feels he needs more data. I would schedule another consult with him and tell him about the challenges – he may not even know if his staff has been helping? – and see if he really needs it in her case. He did note to me that he “wasn’t going to put [me] through that” when he didn’t need the data. Perhaps his thinking has changed a bit? Good luck. – t.
Hi, thanks so much for responding! And, sorry, I guess my question wasn’t worded quite right. I meant to ask if Costantino always requires the cerebral venogram (my understanding is this is an internal venogram, is that correct?). Anyway, my daughter has had a CTV and the ultrasound. Hepworth has offered her surgery, and we are waiting for a consult (in May) with Dr. Costantino. I have a lot of respect for Hepworth, and know people with good outcomes from his surgery. My hesitation and the only reason I would lean towards Costantino is my daughter has a VERY prominent C1 transverse process. From discussions with our PT, who is well versed in this area, is that the prominent C1 is also likely causing tendon/ligament pain. Dr. Costantino says he takes off a lot of the transverse process while Hepworth seems to shave it. I think shaving is likely all most people need, but I am not convinced in my daughter’s case. Obviously, this is all complex, I appreciate all the information, and will take any and all input.
Thank you so much for this information! Every piece of the puzzle makes all this a little easier to navigate! I really appreciate knowing Costantino did not require the balloon venogram in your case - I am hoping my daughter’s case is also clear cut. It’s really hard, since we have the consultation scheduled with Costantino, I haven’t been able to get much more information. Costantino’s office just says he will answer that during the consultation - which I am sure he will. I just also need to accept a surgery date with Hepworth or turn it down soon. Thanks again for responding! It’s very helpful!
Thank you! It’s very helpful to know that Costantino does not always require the Venogram. I appreciate all the information and everything you do to help us all figure this journey out!
