Hi guys. Yesterday I went to Hamburg to see Dr. Felix Blake at the Universities clinic of Hamburg. He seems to be a very cool guy and the only one who removes styloids fully until skull base. He has done many surgeries so far with mixed results. He told me it is a 50 / 50 chance. Some benefit greatly some do not have any improvements. he does not have any experience with EDS patients. He does not do a C1 shave. He only does styloid removal until skull base as mentioned. The only guy so far here in Germany. He also mentioned that he might stop doing Eagle surgeries sometime in future, since this surgery has such m ixed results, but as for now he still does them. All in all he seems to be the best guy to go to here in Germany regarding this matter.
@Matyas - Im glad you’ve found someone to do your ES surgery who is experienced & will cut the styloids back to your skull base. We’ve had members who had good results with their IJVs re-opening just by have the pressure of the styloids taken off of them. That may be what you’ll experience too. 
If you decide to have Dr. Blake do your surgery, please let us know your surgery date.
Hi. I thought he was the best option here in Germany so far, but I would really like to see Dr. Hepworth. Dr. H has much EDS experience and does a C1 shave as well. Alyson his assistant told me in the zoom call that I would need a shave as well. I hope and wish that I can come and see Dr. H. It is basically the financial part which needs to be sorted somehow for me.
I hope that you can find the best path for your treatment, keep us posted…
Hi Jules. I hope so too very much. This suffering for the last 5 to 6 years has been brutal and without mercy. I wish I would be brave enough to do surgery with Dr. Blake since he would be covered by insurance, but I would be his first EDS patient. If I did not have EDS, I would go for him. With EDS on the other hand I would really like to do surgery with Dr. H. I will also book another call with him next week. ( Another 450$ ). This was one thing which annoyed me. It cost 600$ for consultationw with Alyson, his assistant and another 450$ to talk to him. 1050 $ is harsh to pay for someone like me who is disablede and unable to work. … Oh Well. I hope it iwll be worth it. Pray for me guys. Ah and Dr. Blake cannot do a C1 shave which Alyson stated I would definately need.
That is A LOT OF MONEY to have to pay just to talk about your situation with a nurse practitioner & subsequently a doctor but get no help toward resolving your symptoms. Unfortunately, here in the US, the more specialized a doctor is, the more that doctor charges for his/her opinion & care. Some won’t even take medical insurance which means that only the very wealthy can afford to get treated by them. It’s not as it should be. I hope for you the end result is that you can come see Dr. Hepworth for surgery & cease to be disabled. I expect that would be your choice, too.
So frustrating to have to pay so much for consultations (& then treatment!), I hope that you can get help…It’s no consolation but it’s not any easier for UK patients either, nor Canada, seems to be impossible to get a C1 shave on the NHS, members are looking at travelling to Turkey to see Dr Kamran…
Yes. I have heard. In the EU it is only Dr. Kamran doing a C1 shave as well. SInce I do have EDS I am a lot mroe careful with what surgeon to go with. Thats why I rather not go with Dr. Blake even tho he seemed to be a pretty cool and confident guy. Dr. H simply seems to be the most experienced with EDS patients as well as CSF leaks as well, which I suspect to have.
Hi matyas do you have an update on your situation?