New ES Member - Story & Thank You w/ Pics of my CT Scan

Update: CT Angio report stated that I have bilateral Internal Jugular Vein Compression too! Interestingly, the report said reconfirmed IJV compression…funny thing is, it is new s to me !

Same as I had, surgery has made such a massive difference… hope that things can work out for Dr Samji to do surgery and that you’ll feel the benefits too!

Glad you finally have confirmation re: jugular vein compression & good solid info to present to Dr. Samji. Have you made your appointment with him yet?

December 9th :slight_smile:

Where can I get the free CD slicer?

Here’s the link to the previous discussion:

Please keep us posted as to how your appointment goes.

:blush:

let me know if you need more help with this :blush:

Today I filed a grievance with my insurance company asking for a referral to see Dr. Samji and for him to be approved to do my surgery. I will keep everyone posted. Thank you Isaiah & everyone for giving such great support.

Thank you. I do have an older computer. I will ask someone to help me.

Appreciate your quick response. I have an old computer so will ask one of my adult children to help.

Sharing some research [for California members and maybe USA members]
I discovered that if your medical insurance denies your access to a medical procedure or specialist that there is a website: http://www.opa.ca.gov/Pages/Home.aspx

There is a form where they will do an Independent Medical Review of your needs and can force the Insurance Company to cover your request.

Also it states that the insurance companies have 3 days to decide on your written request [grievance form] if it is an urgent issue and 30 days if it is not.

Hope this info helps someone

Great info, seamom! Thank you so much for sharing it!

I heard today that my grievance was deemed to be “not urgent” but rather “chronic”, so I won’t get a decision for 30 days. I asked again about my concern of stroke makes it urgent and she said that the doctor in charge of this decision said no. When I asked what was the background of the doctor making this decision - I was told an oncologist! So I asked why an Oncologist would be the ONLY doctor involved in judging that my very rare condition was “chronic” and not “urgent” the spokeswoman said, "oh he wasn’t, they asked [the surgeon] I filed my my grievance against for his opinion. I am beside myself today,I specially wrote in my grievance for them not to talk with with the Surgeon I was filing my grievance against --since he is the only Surgeon with this insurance company to do my surgery if I lose the grievance. I am sick to my stomach over this.

What a crazy system; to ask the doctor whose decision you have a problem with to make a decision on your case! Is there any way you can appeal giving details of research papers showing the risk of strokes and ES? You’ve done so well standing up for yourself and pushing to get something done…
I know 30 days seems like ages, but it will soon pass… It is a worry with vascular ES but the stroke risk is still rare, if that’s any help! I know with me my symptoms were getting scary and the waiting does feel like forever, so I do feel for you.
Thanks also for the info on grievances; I did do a reply to thank you at the time, and that I will put a link in the ES Info section, but it seems that I forgot to actually post it!
I’m praying for you.

Isaiah_40_31 Thanks for the tip about Kim…she indeed helped pave the way to be seen with my 2 former CTs and not having to do a 3rd without contrast. My appointment is Friday - wish me luck!

Hope that it goes better than your last appt., seamom, and let us know how you get on!

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On your ct scan , what are the thing in red from the et clavicule to the jaw? Are they muscles or artery?

I believe it is my vascular bundle.

My appointment with Dr Samji went well and I have a surgery date for mid January!