Thanks to you both! I needed to hear that.
My body is doing the best it can and yep, I need to not worry about the set back.
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Iām going to have surgery in a hospital. There will be 2 surgeons and an anesthesiologist. Iām only having one side operated on. Despite that my other side is also elongated. Just not as badly as the other side.
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Welcome to our forum @Itsanewdawn! Itās really great to read that you have surgery scheduled. Is it with a doctor on our list or someone else (which is fineā¦our list isnāt comprehensive)? Do you mind sharing your surgery date?
Many of our members have bilateral styloid elongation & most doctors only remove one side at a time. If your remaining styloid isnāt causing symptoms after your first one is removed, itās safer to leave it in place than to have it removed just because you know itās there. Please note that an elongated styloid can cause ācrossover painā meaning that it can cause pain or other symptoms on the opposite side of your body from where the styloid is. If you have significant symptoms that remain for several months after your first styloid is removed, it doesnāt mean your surgery was unsuccessful but could indicate your remaining styloid is causing trouble.
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Welcome! Thank you for sharing your story. Who is doing your surgery? Do you have venous obstruction? When will your surgery be done? Good luck to you, please keep in touch on how youāre doing
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Iām in the Eastern Standard Timezone so itās morning here. Good Morning Isaiah_40_31. Thank you for the warm welcome as well as your interest in hearing more of my story. Thatās my only caveat my surgery isnāt quite scheduled. Iām slightly disheartened as when I saw my surgeon (I have Kaiser Permanente, one of my surgeons is Dr. (more to possibly come later) my degree is in journalism I am trained to get peopleās permission before using their names) to receive the official diagnosis he said they were backed up however he still thought mid-late January. He said it isnāt up to him entirely, because of Eagle at one point it was thought I had a brain aneurysm, my doctor was nice enough to reach out to the surgery scheduler for me. The surgery scheduler said Iāll be contacted once thereās a date as currently there are no dates for surgery. Iām kind of relieved I had jury duty once before and had to reschedule due to some personal business I had to tend to. I have jury duty again at the end of January so hopefully this time Iāll be a juror. Thank you for the education about bilateral.
Good Morning lilwider! Thank you for the warm welcome, your interest, the well wish and your appreciation. I read here I think what a poster said about venous obstruction. However, I didnāt know enough to ask my surgeon whether he knows what it is. Iām messaging him to ask as I mentioned above so perhaps with dialogue going I may inquire with him later.
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Do as much research as possible and donāt be afraid of pleading your case and asking questions. Keep us posted
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In case helps with your insurance company issues. In UK & had VES - tests included CT with head rotation & contrast, MRI head & neck, Venogram inside brain, ICP monitoring 48 hours in brain. Surgery for styloid included nerve monitoring & a revision surgery to remove styloid closer to skull base. Also had surgeries for C1 to trim & reduce JV compression. Hope you get the surgeries you need with doctor who has the expertise in this condition. D
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@Itsanewdawn - I learned something new from you! I thought Kaiser Healthcare was a West Coast institution. I didnāt know they are in the eastern US. Iām on the West Coast & am aware of only one Kaiser on the West Coast that has doctors who are aware of ES & vascular ES & do the necessary surgery for it. Kaiser ENTs , vascular & neuro docs, like so many non-Kaiser docs are seriously ignorant about ES & are dismissive of symptoms. Youāre very fortunate if youāre seeing a Kaiser doctor who is familiar with this syndrome.
Ok, will do. Lilwider. Thank you.
Oh wow! Patient D. Thank you for sharing.
Isaiah_40_31 Prayerfully I have a Kaiser doctor familiar with this syndrome
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Good Morning lilwider thank you for bringing it up. I think my Eagleās to do w. vo. thanks to you, Iām bringing this up to my surgeon
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Thank you patientD. All of you kind people sharing your stories will hopefully help get my point across to insurance. Iām one more questionable surgeon away from my final appeal.
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In UK we can complain to financial regulators of insurance companies about decisions of insurance companies. It takes ages though. Hopefully you have this further redress in US too. But not what you need when seriously unwell. Take care. D
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@lilwider - I bet that appt. canāt come soon enough!!
That is an understatement! Dr Roof wanted me to see ENT to rule out plf . I saw him today. That Dr didnāt know why, I donāt present as plf. But he also is a eagles is only pain Dr. Not recognizing the neuro ends of it. He mentioned Dr Costantino to me first- i filled him on what is going on. He wrote in his notes that he recommended me continuing my surgical treatment with Dr C. He holds him in high regards.
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Thatās FANTASTIC, @lilwider! How great to get a referral to Dr. C from one of the docs your insurance required you to see!! What a great endorsement for Dr. C. I hope this hurries you on your way to a new surgery date. 
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Oh thatās brilliant, worth going through their hoops if this recommendation helps!
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