My Dynamic left brachiocephalic Vein (BV) compression

General
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I know her personally so will get her to have a look at this info, thanks for sharing!

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@jimjammer123 were you able to get @DogLover to look at this? I think she needs to know if she wants to address her BV compression.

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I sent it to her and briefly spoke with her about it but I can’t remember if she looked at it or not. Reason why she may not of, is because she’s much improved and may not deem it necessary to look into, at least for the foreseeable future!

How are you getting on?

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I am glad to hear that she is doing great? Has she done any intervention, like removal of the styloid…etc? I am doing ok. Wound is healing well but my symptoms remain.

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I know you’ve posted some of your scan images, but I don’t recall if you had other vascular compressions besides the IJVs. Are there other things going on that could be maintaining your symptoms, @KoolDude?

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Hi @Isaiah_40_31 there could well be but I was hoping to see a reduction of the symptoms related to IJVS. I have booked CTV in couple of months timeframe so I will see if the Vein has opened up considerably before considering other aetiologias.

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I’m still hoping & praying for the IJVs surgeries to make a huge difference for you, @KoolDude.

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Second that :pray:

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Hi, I am in a similar situation as your self I have bilateral IJV stenosis at Cl related to a large Cl with an adjacent Styloid process and moderate to severe narrowing of your brachiocephalic vein. I am in Romania, Europe.

I am now making a list from this forum of doctors to contact to see what treatments can help.

How are you feeling did you pursue any surgical interventions or other treatment modalities ?

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It’s an older thread so you might not get replies @CristianSerious , but welcome to the forum!

There’s only one doctor that we know of in Romania, Dr Dumitru Catalin
Catalin Dumitru Dental SRL, Bucharest, Romania , but don’t know his experience with C1 shaves as well as ES.

Are you able to travel further afield then? Would you stay in Europe, or be able to go to the US?

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I want to travel, in Romania at the moment nobody is treating this condition I think I saw 15+ doctors and asked around in this regard.

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@CristianSerious - Did you contact Dr. Catalin’s office? He might be the only one in your area who treats ES. If you’ve contacted him & gotten turned away, we’ll need to take him off our Doctors List. I’m very sorry there is no one local for you. The doctors in the US who take care of situations like yours are
Dr. Costantino, Dr. Cognetti, Dr. Nakaji & Dr. Hepworth. Dr. Osborne will diagnose you, but he won’t do anything with your C1 if its causing most of the compression. You would have to see one of the other doctors I listed.

•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 we believe.

•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

•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772

•Dr. Edward Hepworth, Denver Sinus Care, 3150 E 3rd Ave, Denver, CO 80206 (720) 899-9489, FAX (720) 953-5151, email: info@denversinuscare.com or for initial consults - kcurry@denversinuscare.com

There’s also Dr. Kamran Aghayev in Turkey -
•Dr. Kamran Aghayev - https://kamranaghayev.com

or

Mr. Axon in England -
•Mr Axon, Addenbrooks Hospital, Cambridge (Otolaryngologist/ Skull base surgeon, very experienced with ES surgery, special interest in Pulsatile Tinnitus. Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospita

The last 2 would be closer to you than traveling to the US.