Hi, New to the ES world and trying to locate doctors in Europe so been searching the research listings and from links you wonderful people have posted. I was diagnosed by accident while seeing an Atlas orthogonal dr. in Florida when he changed my CT scans to 3d images, and it was confirmed by Dr. Heim from the images I sent him.
I found one paper on piezoelectric surgery and actually heard back from a dr. in Italy so wondering if anyone has had that done–it was external in this case and he reported no nerve damage and full recovery of the patient (but it was in 2014). Where he is in Italy is really far for me to go and I also wonder how long folks are usually in the hospital, how easy it is to travel after this surgery (I am not a good healer due to CFS and other chronic conditions). Dr. Heim has also answered me but hasn’t provided answers to my questions, nor has another Dr. in Barcelona I found so not feeling confident about anyone. They just seem to want me to show up and have the surgery without getting all my questions answered. Nor am I willing to travel for days just to have a consultation that they can do via telemedicine. I would have to have my husband come with me no matter what I do, but we have 2 sick dogs that can’t travel or stay away from our home without us (bad experiences in the past) so leaving the area for more than a day means we have to find someone to stay with them in our home in France so I am completely discouraged about the surgery, especially after hearing the stories of pain and endless suffering.
I also can’t get any one of the doctors to give me an actually figure for the cost of surgery and I need that so I can work through getting approval in France so they will reimburse me (hopefully). I do not have the money to shell out for major surgery and travel and hotels, etc. for 2 people. I am also very worried about what I would do if there was a post-operative problem and I was back at home. Anyone had this happen if you travelled for surgery and what did you do? No one knows about this thing at all where I am–in a small village and not near an adequate city even so if I run into problems, I’m pretty much on my own, or so it feels like it. Can you tell I am on the fence about this whole thing?
So difficult for you to not be able to have a phone consult with either of the doctors! I can understand your concerns, & wouldn’t want to consider having this surgery done with a doctor I’d not met & who didn’t want to answer questions, it can be a risky surgery…but in the right hands the surgery is generally successful. Lots of members have good results from surgery so don’t need to come back on here, if you do read on here about people whose surgeries didn’t go well it’s often because they still want support, so it can seem skewed towards them, but they are in the minority…
I don’t know the health care system & how easy it is for you to be reimbursed, but if you are looking to have to travel & it has to be in Europe, have a look at the doctors list as there are some doctors in Germany for example. I wish I could help look after your dogs, but too far away! They are such a worry…
Otherwise if you could do a search for Otolaryngologists or Head and Neck Cancer surgeons in the nearest city to you, one might be able to help?
Thinking of you… 
I recently saw a YouTube video of an external ES surgery done by several doctors at Hospital Universitario Donostia which appears to be in northern Spain. The doctors names listed in the intro are Dr. Carlos M Chiesa-Estomba, Dr. Aitor Vargas, Dr. Jose A Gonzáles-Garcia. If you Google the hospital name you can get the phone number & location. If you’d like the link to the video I can send that. It is graphic. I don’t know if you could get more answers from this group than you have from the others you’ve tried. We’ve had several members in Italy who have been unable to get surgery even from surgeons who wrote ES research papers there or were put on hold for more than year due to COVID or other problems. I’m not sure Italy is your best bet for a place to get help.
Thanks! I am in touch with Dr. Chiesa but like the others, he’s not answering the questions I have. I can’t watch the video–lol. The Dr. closest to me in Barcelona wants to do injections first before considering surgery and I think that’s a waste of time since I’m sure my vagus nerve is being pinched or irritated and it’s a vascular ES, not with the regular ES symptoms so despite explaining all that, he still suggested the injections. I’ll have to ask the group if anyone with vascular ES (which I think I have but can’t find a vascular specialist or anyone else to confirm any of it) has tried injections successfully.
I think you’re right that the steroid injection would be unlikely to ease vascular symptoms. If it was easier for you to attend appts I’d say go for it as it might help with pain for a while & if it’s another hoop a doctor wants you to go through before agreeing to surgery then usually worth it, but given your situation with travelling etc it’s not worth the hassle! So frustrating that they won’t listen to you…
I am so angry today. I just got an obnoxious email from a French doctor who says I can just make an appointment with any ENT instead of trying to get an answer via emailing doctors to see if they even know about it, or to drive hours just for the fun of finding out they know nothing. I have insisted that NOT all ENT or maxillofacial doctors treat this and I am NOT going to drive hours and hours, especially given the state of my health, just to find out they know nothing, their secretaries, even if I can get a friend to call for me, know nothing about the condition or won’t answer questions. I am about ready to give up.
So frustrating! I can understand that you feel like giving up after that! I don’t know if there’s anything useful for you in the patient advocacy info section? Here’s a link in case you’ve not seen it:
Latest Patient Self Advocacy/How to Self-advocate and Be Heard topics - Living with Eagle
Sending you a hug, I think you need one!
This is a very difficult time for you between your sick dogs & your own illness. Please don’t give up. Take a step back for a bit if you need to then jump back in the ring & fight for yourself again. There’s bound to be someone who can help you. I’m praying for sooner than later. 
Thanks. I am stepping back. I am not even sure that my symptoms are for sure from my ES and I need further investigation about the vagus nerve involvement and I have to find someone to just do that. I don’t want to undergo surgery, esp. in another country outside of France where I have to deal even more cost and bureaucracy, unless I am more than 50% sure it will help. The one doctor closest to me has offered injections which I think would be useless so not going to pursue it. He doesn’t seem to understand the vagus nerve stuff and just sees the huge jugular on the right and the non-existent jugular on the left in my 3D Ct scan as ‘anatomical differences’ which I think is b.s. considering my 20 years of migraines on my right. I will do some searches on this site about injections but if you have any insights…? Thanks
The injections give mixed results- they have helped some manage without surgery for quite a few years, others have only had less pain for a few days! I know one member ended up in more pain, which is very unusual, maybe the doctor caught a nerve? It should really be done guided by ultrasound. But I think it would be very unlikely to help with the vascular symptoms, if steroids are injected too it might help with inflammation in the area…
Hi, have you checked with Dr Julio Rama López in Spain? He uses da Vinci robot.
THank you. I looked him up. I don’t want intra oral surgery given the risks and because mine is vascular and needs to be seen better externally because I am quite sure the vagus nerve is impacted. I will contact him anyway to see if he other the external. Thanks