Thanks so much for the input. I am sending my info to Dr. Hepworth next week, so hopefully something will break for me.
I am praying for you as well, and please keep me updated on your progress with Hepworth.
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@Chrickychricky Hi! I am in AZ. Currently working with Dr. Lawton. Could you please tell me how you got in with Dr. Nakaji? Did you need a referral? Prior imaging? Thank you!!!
@harrisonboy, FYI, I edited your images to remove your name.
Here are some annotations:
Regarding your left styloid/C1, there may be a little space between them but it may not be visible due to the angle of your image. You styloids/calcified s-h ligaments are pretty extensive but of greater note is the lack of space between styloids & C1 on both sides which is likely why your symptoms are so horrific. I agree that w/ the lack of blood flow out of your brain, you could have a CSF leak & probably very high intracranial hypertension both of which are causing your misery. Dr. Hepworth will not turn you away & once you consult w/ him in Oct., he may be able to suggest something to help with your symptoms. Remember that his front desk people are not the ultimate authority in his office & he can rearrange his schedule as he deems necessary. Get your foot in the door, & hopefully heâll see the gravity of your situation & will accelerate your care more than the ppl at the front desk indicate is possible.
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Hi,
I referred myself but I had already had a CTV and an IR angiogram with manometry. I think he is amazing.
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Iâve got the CTV. Angiogram is being ordered. Iâll see how everything goes with Dr. Lawton/Dr. Santarelli and go from there. I do like that Nakaji is of the mind to preserve muscles and other structures. Thank you for posting that info!
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Sorry about my name. Thank you so much for your input. I pray you are correct and he will see me sooner rather than later.
I know there are many hurting and suffering, but after 5 years of daily headaches and other severe issues, I am out of hope and strength. I am sending my information to them next week and she said she would try and get me a televisit in two weeks.
Thanks again for all of your support.
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@harrisonboy - Another doctor you could try is Dr. Damrose at Stanford. Heâs an extremely experienced ENT whoâs done ES surgeries for years but has just started doing IJV decompressions too. I spoke to someone today who was booked for an initial visit w/ him next Feb 
, but sent in her imaging ahead as per instructions from his ofc. When he reviewed her scans, he moved her appt to this coming Tues.
â˘Dr. Edward Joseph Damrose, 801 Welch Rd, Palo Alto, CA 1-650-723-5281 Edward J. Damrose, MD, FACS | Stanford Health Care
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Sounds like a good plan. Make sure they are doing manometry with the angiogram because itâs the pressure gradients that seem to be the greatest indicator of whether or not you will benefit from surgery. Good luck to you!
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Bless you for your help. I am barely functioning. I may wont makenit months for an appointment. I will end up at a hospital begging for help, because it is that bad.
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I am praying for you to get the best possible help ASAP, @harrisonboy, & am so sorry there isnât someone closer to where you live who is able to help you.
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Well it sounds like youâve tried pretty much everything then, I totally understand how despairing you must be. Your styloids & calcifications are so long itâs no wonder youâre feeling so rough. If youâre not already I would try sleeping propped up as laying flat can make head pressure worse (if you have IJV compression), ice and / or heat if you havenât already, and if youâve not tried them some members have found lidocaine patches on the painful neck areas sometimes work. Praying that youâll be able to speak to Dr Hepworth very soon 
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Thank you so much. As you know, he just went out on his own. Insurance is not even verified as of yet. He has quite the back log even with existing patients like me!!
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That is what I am concerned with. They told me hopefully in September, they will be accepting insurance, but she didnât sound very optimistic.
In my heart, I know he is the DR. I need to see, but facing the possibility of waiting for 6 months or more seems impossible for me.
Maybe things will happen quicker for all of us.
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Do not fret. I saw him a year ago and have had my diagnosis for 2 years. I did not want to rush into surgery as many in this group know about me until I had a lot more answers and vetted my surgeons well. I highly doubt my surgery will hold in November due to his transition and dealing with my insurance.
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Sure seems hopeless.
I pray it isnâtâŚ
I think Dr. Hepworth is working hard to keep his surgery appts. w/ the patients have surgeries scheduled. Iâm having mine on 10/30 & called the ofc a week ago to confirm it, & itâs still good to go although I acknowledge there is plenty of time for that to change.
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Itâs tempting to go with any doctor who can see you the soonest, but in the long run itâs not always best as they may miss things & you donât want to have surgery then not feel any betterâŚI do appreciate that youâre feeling really ill though & desperateâŚmaybe look into any anti-coagulant or anti-platelet medicines that you havenât tried, there have been a few mentioned on here to try, members have had good results with some of them but different ones work for different people. (Plavix, Brilinta, aspirin, XareltoâŚ)
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Agree. I have been on plavix and asprin, byt no help.
Praying he can See me sooner rsther than later.
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I know mine is still scheduled. However, with the transition and insurance issues that will lay ahead, I am very doubtful it will happen then. He is considered out of network for me and I do not see them making a huge effort on my behalf to fight to get approval.