I have these exact symptoms, but have no idea who treats this. Is this a specialized ENT, Vascular Surgeon, or somebody else?
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Dr Aghayev in Turkey has done surgery for quite a few members with IJV compression, he does bilateral styloidectomies & C1 shaves …
Thanks for posting this, we’ve had another vidoe of his posted here too:
A Review Of IJV Compression by Dr Aghayev - General / Research Papers - Living with Eagle
And there are lots of discussions about surgery with him you can search for if you’re interested…
If you need a VES surgeon in the US otherwise, Dr Hepworth in CO, Dr Costantino in NY, Dr Nakaji in AZ all do surgery for this, and usually look for other compressions on the IJV…
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I have a tortuous cartoid artery. I have been told its not an issue. I know many have tortous vessels. Did you have a venogram and it was proved to be an issue?
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I am going to try and get a CT venogram, but have not had it yet. I do think a lot of problems are positional and unfortunately all the imaging tends to be in neutral position, so a lot of problems are still present even if it doesn’t look that way on the imaging.
@jobby99 - Whether you get a CT venogram or a catheter venogram, you need to request that your doctor order it to be done dynamically. If the radiology clinic you go to doesn’t know what dynamically means, you can tell them it’s with your head turned L/R & w/ neck extension/flexion. I hope you don’t need to do that, though.
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It is difficult to get the testing needed to see Dr. Nakaji. I had a vascular surgeon write an order for a CT Angio Head Neck w wo contrast. However, it doesn’t necessarily cover base of neck to top of head or use 1 mm contiguous segments like Nakaji wants. I guess I am just going to ask the radiologist and cancel if they can’t do it this way. As I write this, I realized that the doctor wrote it for imaging the arteries NOT the veins, so it is basically useless to me.
@jobby99 -
I’m sorry you’re having such a hard time getting the imaging Dr. Nakaji is requiring. Has Dr. Nakaji’s office sent you the specific name or type of scan he wants you to have & what area it needs to cover? If not, you should ask his office for more details about the scan he wants.
Have you considered seeing Dr. Costantino or Dr. Cognetti since they’re both a little closer to you? I’m sorry if you’ve already had a consult with either or both & I’ve forgotten. I think either of them would accept a CTV without the special requirements of Dr. Nakaji.
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS .
Does do online or phone consults.
•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760 (Has done many successful surgeries on members). Only removes ligaments if calcified. Works with Dr Heller now to do C1 shaves
David M Cognetti MD | Jefferson Health Does do online or phone consults.
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Dr. Cognetti didn’t think the IJV was problematic when reviewing the CT scan. He thought a basic styloidectomy was the best surgery for me, so that is what I had done. It did fix the mechanical problems of swallowing, throat and ear pain, and I can turn head easier. To complicate things, I think that I probably have some CCI but not to the degree where I need more than physical therapy. I just don’t know what problem is causing the neuro symptoms. They appear to be worsed when lying on either side suggesting something being compressed on side of neck as the main issue. To me, I guess it might just be easier to focus on physical therapy and get imaging of my cervical spine.
Dr. Centeno basically said that 10 or more different areas of cervical spine and/or atlas/axis can cause the same symptoms, but obviously he is trying to get more business since he doesn’t accept insurance. I am also aware that a CT hits you with 8 years of radiation that you would normally get from the sun, so I do want to limit it if I can do so. Most of my problems historically are nerve issues that are the ultimate cause of the muskuloskeletal problems (body compensates poorly), so I might be able to get specific injections into my cervical spine to see if any major changes occur. However, I need to have my brother take off work and drive 45 minutes each way to get the injections. I also have history of NUCCA upper cervical chiropractic with nothing that beneficial from it, so I don’t really think CCI is that bad. I wish I never did so much chiropractic in my 20s, since they apply dangerous force to the neck despite safer ways of treating neck. I hope none of it made ligaments looser. Not sure if I have Ehlers Danlos, but probably way more flexible then most people my age. I think people are on a spectrum of joint hypermobility.
The orthostatic hypotension doesn’t seem to be that bad either right now. It is more of a balance issue from vestibular-cochlear system. That and tinnitus are the worst symptoms, since I can’t take a drug for either. I guess we’ll see what the imaging shows.
Thanks for looking out for me,
Frank
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Some members have done vestibular rehab exercises which can help, there are videos on YouTube if you’ve not tried this? Other members have found post surgery that they need to re-train their whole body as there can be compensations from inflammation & posture changes which need to be corrected, so it might be worth keep trying this…
Also this has been discussed recently:
Symptomatic.me | Understand & Heal Neuroplastic Pain
@Chrickychricky has given us this info, might be worth looking into?
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@jobby99 - I apologize, I temporarily forgot that Dr. Cognetti had done your surgeries 
. Besides the information, @Jules gave you above, we’ve heard from a number of members that myofascial release therapy was very helpful after ES surgery. It’s a type of very gentle massage but it can help break up scar tissue & adhesions that develop post op as you recover.
I don’t blame you for not wanting to get another CT scan. Nerve compression can be diagnosed by a FIESTA or CISS MRI, but we’ve heard those can be hard to get though it seems they’re more common now than even a year ago. It has to do w/ the programming of the MRI vs a specialized MRI machine. If your symptoms persist at their current level beyond 6 mos. post op, the MRI might be something to consider.
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