I’ve been suffering from severe symptoms for the past 4 years. During that time, I was repeatedly diagnosed with migraine with aura, despite telling doctors that I believed something else was wrong. A radiologist also missed my stenosis on MRI scans from 2022.
My symptoms
Severe symptoms across the visual snow syndrome spectrum
24/7 chronic, intractable migraine
Dissociation and dizziness
Brain fog
I’m now moving forward with surgery and have consulted with two surgeons: Dr. Edward Damrose(USA) and Dr. Andreas Schmitz(Germany). I plan to consult with more (Dr. Constantino, Dr. James Liu), though I’m trying to move forward ASAP and these consults are months from now.
Dr. Edward Damrose
Plans to address both the styloid and C1 transverse process, removing/shaving them as needed on my dominate side.
I also have compression in my lower neck, which he plans to address with a muscular resection.
Both sides show compression and very high velocities. He would start with my dominant/more severely affected side and consider the second side in a separate surgery if needed.
Estimated wait time for first surgery: about 3 months.
Has done this procedure 12 times.
Dr. Andreas Schmitz
Plans to shave C1 and remove the styloid if necessary.
Would operate on both sides during the same surgery.
If my lower-neck compression still needs to be addressed after the C1 procedures, he would use an external graft.
Surgery could be done in about 10 days.
The procedure would be out of pocket.
Had done this procedure 75 times
So these are currently my two options, and I’m trying to decide which approach makes the most sense.
I’m also sharing this because I hope it can help others understand the different surgical approaches from these two surgeons.
I’m glad that you’ve been able to get a couple of consultations already, that’s good, and the other two doctors you’ve mentioned are very experienced with IJV compression too! It’s frustrating that the compression was missed on your scans before, sadly that’s quite common…
I don’t think any of our members have had a decompression surgery with Dr Schmitz, here’s a link to a discussion where some members talked about him:
Dr Damrose has done quite a few surgeries for members, I think he’s not been doing the C1 shave as long as Dr Costantino for example, which tallies with the 12 times you mention.
Dr Costantino has performed lots of C1 shaves, and removes some muscle when necessary, here’s a video where he explains his procedure if you’ve not seen it:
Given that there are some very experienced surgeons in the US, who presumably you could get insurance funding for, it would be more of a gamble to go to Germany to see Dr Schmitz, you have the extra complications of travelling, follow up if you did need the IJV decompressing further down, and care if you were to have a complication?
But if you’re in a hurry, quite a few members have travelled to see Dr Aghayev in Turkey, he is also very experienced and has done many surgeries. He does online consults for 300 dollars I think…here’s a link to an interview he gave:
! I wanted to pop in to share that I recently had surgery in June with Dr. Andreas Schmitz in Germany. I am from the USA so it was a bit of traveling but well worth it. I honestly went to him because he was readily available to help me. I was on waitlists in the US and I couldn’t wait any longer. Nor continue to pay for all the appointments! I was scheduled to see Dr. Constantino and Dr. Liu but it was months out. I have not seen Dr. Damrose so I cannot give you any feedback there. But I do hope you can find help sooner than later! I would be happy to answer any questions you may have regarding my experience at the Bel Etage Clinic with Dr. Schmitz. Overall- A+ experience!
@kboi - Dr. Damrose is an extremely experienced ENT skull based surgeon who has been in practice for many years so I wouldn’t doubt his ability to do the surgery you need. As @Jules noted, if you can wait for your surgery, you could have insurance coverage, wouldn’t have the excessive travel, & would be much more easily able to follow up post op in the event of a complication.
Comparing the two doctors approaches, most doctors will not do bilateral IJV decompression surgeries for a couple of reasons: 1) Post op swelling can be excessive for some people & doing both sides at once can be dangerous. 2) Some people only need to have their dominant IJV decompressed to get decent results so the second side doesn’t need to be done, though patient experience on this forum has been that decompressing the second IJV usually does provide a better overall outcome.
It’s concerning to me that Dr. Schmitz would only remove the styloid “if necessary”. With styloids as thick as yours, it would seem to me to be mandatory to have them resected as even if they aren’t the primary cause of IJV compression, they could be significantly contributing to nerve pain that may not go away if they’re left in place.
Another thing that Dr. Costantino, Dr. Liu & Dr. Nakaji have been doing is removing any fascia that is strangulating the IJV(s), & in some cases opening the carotid sheath so the vagus nerve, which is usually also compressed w/ the IJV, can recover. That’s something that can be foretold prior to surgery though as the surgeon needs to be able to see it w/ his/her own eyes.
In the image below you can see one of your collateral veins appears to be adding to the IJV compression on the left. I hope that would also be taken care of during surgery.
