Hello!
I have just been diagnosed with severe jugular vein compression bilaterally.
My left side with very severe compression with near-complete collapse of my vein.
Both sides are well impacted by C1.
Does anyone know the doctors that might perform C1 shave and styloidectomy in the EU?
Not many do, Mr Axon in Cambridge, England does:
Mr Patrick Axon - ENT Surgeon (Ear, Nose & Throat) | Ear, Nose & Throat Surgery | Spire Cambridge Lea Hospital
And quite a few members have seen Dr Aghayev:
Dr. Kamran Aghayev - https://kamranaghayev.com
I’m sorry that we can’t suggest more!
Thank you!
I see that I am on the right track then. I did infact make an enquiry towards Mr Axon.
Mr Axon willcost up to 500 pounds just for a consultation.
Any idea what he might be taking for surgery?
Cambridge gave me the pricetag of 750 pounds for consultation.
Personally for that price I’d tell him to stick it.
You can go to Istanbul for three days, have the consultation for less than that.
Price I have seen quoted for Axon is 12k per side.
Indeed!
I have actually had contact with Dr. Kamran Aghayev, who diagnosed my problem.
The fact of the matter is that my national insurance scheme does not cover treatment in Turkey, so I’m looking other ways.
That’s frustrating, will they cover the UK now we’re not in the EU?
Unfortunately they will not cover the UK either.
If the university hospital of St. Olavs hospital in Norway are unable to provide just as good service as treatment that is documented better overseas, then I can apply to that.
Currently waiting on St. Olavs hospital to give me an offer. Though I suspect they don’t do the C1 shave, which Dr. Kamran Aghayev has stated is necessary for my severity.
My economic situation allows me to take all the economic bearing of going to Turkey however.
@Rehri - We have one other doctor on our Doctors List in Italy who reportedly does IJV decompressions surgery. I’m not sure about C1 shaves, & we don’t have any members who’ve gone to him yet. He would be someone else you could at least have a consult with.
•Dr. Raffaello Pagani - https://www.raffaellopagani-ccsvi.it/en/department/personalized-treatments-for-ccsvi/ or Dr. Raffaello Pagani – Vascular Surgery and CCSVI None of our members have seen this doctor but he does know about vES w/ IJV compression & appears to do surgery for it.
Thank you.
I will check him out!
Hello Pagani does not do c1shave
@markp - Thx for that info. Have you contacted his office to get that information or do you know this from others who have consulted with him?
Hello I’ve heard from other patients and also his website does not mention c1 shave
Thx for replying, @markp. I’ll note it on his Doctors List entry.
One of our members recently said that there’s nobody in Italy who can treat vascular ES, but it’s worth having as many names on the list as we can!
For me he asked 800 ….