Who has been helped by surgery with this awful disease?

Jules, this is so great that you dont have any nerve damage to face. I hope everything heals quickly, and you symptoms are gone. Hard to believe those little bones can cause such havoc on a person. Thanks for the updates. Get well soon. Good luck going forward.

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Aloha Meman, my Dr. Is already listed. His name is Dr. Scott Newman he works for Kaiser here in the state of Hawaii. He is amazing.

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I would love to be able to find a doctor like that somewhere where it could be affordable for me to go and treat, but there is no way I could go there to treat. I am gonna have to find someone in my area if I need to do it. Doing some ultra sounds on my Carotid artery first, and I will decide based on the results of that whether or not I treat this surgically. I am 53, so I may need to do it sooner than later.

Meman,

Please make sure that your head is in a ā€œprovocative positionā€ when you get those untlrasounds. If your head isnā€™t in a position that causes symptoms when you get that done, everything will appear normal.

Hi coco,

Dr. Newman did MauiMiracleā€™s ES surgery as well. She no longer lives in Hawaii though. Glad you found him & he did your surgery well!

My biggest issue is high blood pressure at the moment that medicine does not seem to help. So that is the main reason they are looking at what kind of constant pressure is on my artery

Ah, so they think the pressure is constantly on your artery. Thatā€™s an interesting perspective. Your blood pressure can also be affected by your vagus nerve. This is a more obscure cause but the vagus nerve is often irritated by ES & can affect heart rate & blood pressure.

I had the opposite problem from vagus nerve irritation. My blood pressure kept dipping, especially when I exercised. That made me feel light-headed & winded - like I couldnā€™t catch my breath. Sometimes I felt like I was going to pass out. When my blood pressure dropped then my heart would start racing, I guess to try to get it to come back up. All that stopped after my first ES surgery.

Please let us know what you find out.

Hi Meman,

So sorry to hear your ongoing struggles with the BP. I can relate to that and it is rough. What I have learned is that no medication will help if there is a mechanical compression of the vessels and vagus nerve by the styloid. It is like putting a kink in a hose and you keep turning up the water pressureā€¦not going to get through. You have to relieve that block to allow the blood to flow normally and for the nerve to do itā€™s job. Most doctors wont speak as directly as this about this anatomical relationship. It is good to try the medication though, it helps to ā€œrule inā€ the ES if the medicine fails. Keep up the good fight, thinking of you!

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I have the same BP issue. Tried me on three different meds and one actually made my BP go up. Hope you get the BP issue resolved soon. Praying you can get long-term relief without surgery.

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