Thank you @Jules and @Isaiah_40_31 for your thoughts and advice! We are not able to see Dr. Hepworth until July or August and if I schedule an in office appointment while we are in the area it will be with on of the NP’s. So we wondered if waiting until August at our other daughter’s 4 month post -op to see Dr. Hepworth then, would be wise to wait that long? Or should we make sure the neck instabiliites are not major enough to be creating all these symptoms with another doctor and if he says other things are in the majority then maybe we have a better idea what to do? Also we know getting too many doctors involved can muddy the waters enough that then we for sure don’t know what to do!
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If your daughter’s symptoms are manageable enough for her to be able to function for the next 4 months, it might be worth waiting to see Dr. Hepworth, however, it sounds like she’s barely getting by so getting an opinion regarding her neck instabilities could also be a good next step. We have a couple of members who’ve been able to reduce CCI symptoms by doing PT i.e. seeing someone who’s a cervical specialists & who can help w/ strengthening all the neck muscles (tiny as well as larger) so they provide better overall support for the cervical spine. That said, I think these members started PT after they had their styloidectomies & IJV decompression surgeries. I feel like I’m rambling as I agree, it’s hard to know the proper order & watching your children suffer, even as teens or young adults is AWFUL!! 
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I guess if you’re able to see someone in the mean time while you wait to see Dr Hepworth then there’s no harm in getting a consultation for her instability? It’s so hard to know what’s causing what & whether any surgery would help , unfortunately sometimes it’s only by having a surgery/ treatment that you can find that out! It can confuse things to get more opinions, but equally it’s the best way to make an informed choice? Sending you a hug, you’re in a difficult situation
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Sarah finally left a portal message last evening after her consult with Hepworth and he is thinking she would be a candidate for surgery on the right side of neck. So she is submitting a surgery sheet to Stephanie… WOW! Now what…. seems rather sudden change of thoughts on their end but like @Isaiah_40_31 said it helps to get Hepworth’s opinion. Kristen did finally reach out to me today and we were able to schedule an in office visit for April 2! Now to see if we can get the JV ultrasound too before the visit…. waiting to hear back from Sarah about that one whether it is necessary as I have not gotten my question answered from the portal if ultrasound is what Hepworth would advise or no. Do most of you have ultrasound before surgery? Our other daughter is not having an ultrasound before her April 1 surgery…. and we are supposing our cardiologist who referred us to Hepworth may have sent his ultrasound pictures… I want to ask Hepworth for sure about that.
Thanks for all your kind thoughts and advice! So grateful for this forum to help us navigate this uncertain journey!!
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God is taking care of your daughter for sure! I’m so glad you got an appointment much sooner & especially that it coincides with when you’ll already be in CO for your other daughter’s surgery.
I don’t think Dr. Hepworth always requires a US prior to seeing him or prior to surgery. I think it depends on how severe the vascular compression appears in the CT imaging. Mine was iffy so he required a US & catheter angio/venogram which kindly provided input that showed surgery could be helpful. I recall a few others not needing the US prior to surgery & definitely not the venogram once the numbers on the US were analyzed.
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Thank you for your input about ultrasounds for JV diagnosis. @Rosa you may find this topic informative as you were wondering to me about ultrasounds and if and when it is necessary….
Yes, God is taking care of our daughters even more than we realize! Thank you for your prayers!
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So pleased that things are moving forward for your daughter! God has definitely answered prayers 
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