Thank you I have a list from this site to ask the doctors when I go. Y’all are amazing 
, I have one appointment at UAB in Birmingham with a neck and head surgeon. And I sent my images and report to dr Samji, I have a friend that lives in California near San Jose that I could stay with. I am willing to drive out there because he seems to be pretty awesome with patients and surgery.
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Yup! I think he is awesome! He did my surgeries back before he’d done 100 of them. Now he’s at around 300+.
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You said once you become a pt it usually goes pretty quickly?
Yes - video consult (because you’re so far away) w/in a couple of weeks of CT/radiology report review & surgery w/in 2-3 weeks after that.
I sent my images through a one drive link, and I sent it through email to his assistant. Should I call them tomorrow and check and see if everything made it to them? Or should I give them more time. And did your insurance cover the surgery?
I do t want to be bothersome to them but I also don’t want to be swept by the way side.
It’s always good to give a follow-up phone call to make sure what you sent got there. Whoever you talk to will hopefully give you a time frame in which you can expect a response. I think that’s you doing your due diligence, not bothering them.
My insurance did cover my surgery but not completely. I don’t recall what my out of pocket was. There is Dr. Samji’s fee, the anesthesiologist’s fee & the fee for the surgery center. Your insurance should cover at least part of all of those.
-Yeah I seen where people are paying out of pocket around 13k for the surgery with dr Samji. But idc if this gets me feeling better.
-But I called and she sent me to dr Samji assistant and I left a message.
- is it weird that I am excited but scared about all of this?
We’ve all been there; relived at having a diagnosis & a reason for the symptoms, scared at the prospect of surgery but looking forward to getting rid of the styloids! I hope that you get some results from all your enquiries!
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Thanks @Jules, yeah I literally thought I had all these crazy diseases like ALS, MS and a couple others. It’s bitter sweet to know a source. Do y’all have members that symptoms start out of nowhere? And progress decently fast? Cause it took me all of a month to be from running miles a day to on the couch dizzy with all kinds of symptoms.
It does vary- mine came on gradually, although once diagnosed & researching I realised I’d had some for years (I’d had a whiplash injury 20 years before so had had some symptoms since) But the vascular symptoms did come on quite quickly.
We’ve had members with both experiences- some have had an injury or possible fracture of the styloid so symptoms start then, others with a slow progression…
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Gotcha, yeah looking back now I was having face twitching and problems sleeping with my head in certain positions for about 7 months but just thought it was from working 8-12hr nightshifts in a row at the hospital. 
I agree w/ Jules. Not weird to be scared but excited. Our member @SewMomma coined the term “nercited” for how she felt about finally being diagnosed & having to face surgery. I think it’s a perfect word! 
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I agree.
It feels like I’m close to the end of a race. And I see the finish line, but the finish line is lit on fire. I know I will probably be ok but there is a slight fear crossing the finish line.
My brain is weird idk if that makes sense
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Great analogy, Calebp!
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Thanks for not making fun of my analogy.
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I think it might be a longer race than you anticipate though & that finishing line might be a bit further away, don’t want to burst your bubble, but recovery can be a few months or longer sometimes…so be prepared for more of a marathon than a sprint!
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@Jules no bubble being busted, I appreciate the honesty.
It’s not my first time having character building events.
-I had a stroke and had to have heart surgery when I was 17. I lost all my sports scholarships and had to be inactive for months. I am fully aware of the amount of time it may take.
-But I see it as the end of one race and the beginning of another. Looking at stuff as a crazy long goal will drag you down and break your spirits. I run a race everyday in my head because it’s all we have, my goal each day is to win the day.
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Fantastic attitude, Calebp! I’m really sorry that you had a major health event at such a young age, but it seems to have served you well in the end.
I had to give up running for awhile before & after my ES surgeries. Now I can’t run because my hips are shot so I hike. I agree w/ your assessment re: a crazy long goal can drag you down…I take LONG hikes. Sometimes the distance is planned & sometimes not…it just happens because there are side trails to explore. If I thought about how far I was going, I might decide it’s too far & turn back but miss something great. It’s better just to get out there & do it!
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I agree, and I love hiking/trail running too. But one of the doctors that help find this told me the other day “you know people want to panic and fix everything right now, but you know sometimes you need to just give yourself some grace.”
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Goodness, you have had more than your share…definitely character building, you must be very strong! Good to have a goal, & the race analogy obvs works for you! 
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