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 āprovocative positionā when you get those untlrasounds. If your head isnāt in a position that causes symptoms when you get that done, everything will appear normal.
Hi coco,
Dr. Newman did MauiMiracleās 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. Thatās 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 couldnāt 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.
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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 itās job. Most doctors wont speak as directly as this about this anatomical relationship. It is good to try the medication though, it helps to ārule 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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Some surgeons also specify ātemporal boneā as a specialty instead of saying āskull baseā or āeagle syndromeā. Even some surgeons that list this as something they treat, do so few surgeries that they donāt feel competent in helping patients. Since surgery is the only option, you still have to find somebody else. I was ghosted by my ENT skull base doctor at Cleveland Clinic, despite them saying they would call me with the results. Obviously, a busy surgeon is not ideal since you have to suffer for 6-9 months, but at least you know they must be helping patients if they are so busy.
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Yes, me too. I think it is vagus nerve in addition to blood flow to brain being compromised. I do feel better usually when exercising after ten minutes, but cannot do more than 30 minutes at one time. I will get some kind of rebound symptoms from exercising too much.
Been there & experienced that, @jobby99. Iām sorry your ability to exercise is limited at the moment. Hopefully once you have your surgery(ies) you find you can workout at your pre-ES level. I was able to do that once I recovered from each surgery for several months.
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I also am sleeping in sitting position which takes away most of the symptoms for me, but it irritates my pudendal nerve. I can sleep better on left side then the right making me think that there might be more compression on the right side since that styloid is a bit thicker. I also get tinnitus and heart palpatations when sleeping on the right side.
Your observations could be accurate, @jobby99. When there is IJV compression between the styloid & C1, the vagus nerve also often gets squashed as it runs alongside the IJV. Irritation of your vagus nerve could be causing the heart palpitations.
Have you tried sitting/sleeping w/ a pillow under your bottom to help reduce pressure on your pudenal nerve or changing the angle of your back support so youāre not quite so upright to take some pressure off of it?
Yes, I have a special cushion that I cut out the part where nerve gets irritated. Many people have bad cushions that sink too much, but I found a brand from Pharmedoc that is consistently good for sitting on and has lasted over 5 years so far. I take it with me whenever I go anywhere. I do think the heart palpitations are caused by the vagus nerve. Hopefully, I will get it figured out soon.
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