So sorry to reshare my story but I would like your comments about my styloids. Thanks
Would it be helpful if I include the radiologist report? It does say there is compression of the internal jugular vein by the styloid process. Please let me know and I will gladly edit my message.
I have edited my post one more time, it must be my anxiety. I have added a picture of my scan with contrast. My elongated styloid processes are trapping my jugular vein. My carotid artery is off track…
@Hamela - Your styloids aren’t terribly long, but they are exceedingly thick, especially the left one which is a bit more angled than the right one. The right one is more curved. The thickness & angles of growth can significantly play into the symptoms & compression the styloids are causing.
I don’t know how significant it is that your right internal carotid artery is out of place even though Dr. Middleton made note of it, unless you’re also having symptoms related to your carotid artery which would be facial numbness, eye pain, neck pain, temporary visual loss or partial visual loss in one eye, dizziness, & headaches (these may differ somewhat from those caused by IJV compression). TIAs (mini strokes) are often also a symptom pointing to compression or irritation of the carotid artery(ies). It is possible your body has simply adapted to its new location w/o any problem.
Due to your bilateral IJV compression, it would be best for you to contact Dr. Costantino or Dr. Cognetti for help as they are the two doctors closest to you who do styloidectomies w/ IJV decompression.
I’m glad you’ve contacted both doctors. I’ve been on this forum since 2014 so have learned a lot about symptoms that ES & vES can cause during that time plus I’ve also experienced those things myself. I truly hope you’re able to find the best possible doctor to help you very soon. You’ve done a lot of work to familiarize yourself with doctors who can help you so now it’s time to get the help you need.
A really thorough & helpful doctor, he’s advised you to have your right styloid out & as @Isaiah_40_31 says they look pretty thick! It sounds like you’ve been suffering a long time now, so it might take a while for all your neck issues to get sorted, but it’s brilliant that the adjustments he did helped you
It’s been a difficult 1.5 year. In Canada, I was left in the dark and I was told I probably have a brain tumor, and that I would lose my sight eventually, then I was told to embolize my occipital emissary veins etc…
Since I went to the USA I had 2 opinions from different specialists having the same conclusion, VES.
My current objective is chasing a surgeon willing to operate on me. I sent many bottles in the ocean, now I am waiting for call back . I am so afraid to be rejected
This support group is a light in my dark journey.
A big thank you is not enough to express my gratitude.
@Hamela - If you don’t hear anything w/in a couple of weeks from the doctors you’ve contacted, call their offices again & ask when you can expect to hear back. If you don’t get a response by the date they give you, then call again. Patient persistence/self advocacy pays big dividends.
I have a virtual appointment next week with a head and neck surgeon. Its a good start. I have sent my images and report prior to the appointment.
My concern is that I often read patients who are denied surgery because the specialist deemed it unnecessary. I am so worried that this could happen to me next week, if so, do you have any advice?
We have had a few members recently who have been denied surgery with Dr Nakaji, & one with Dr Costantino, it’s hard sometimes to understand why, so I don’t think there’s anything you can do to ensure you’re accepted I’m afraid! If you’re asked about symptoms stick to the main ones & the ones often seen with VES, make notes before hand so you don’t forget, & if you have someone to site beside you when you have the appointment to help you take everything in & remember things then that’s a good idea. You’ve had good imaging done, so that’s a plus. Sending you a hug & let us know how it goes
Your words are so helpful. You are right, I can’t do anything about the potential response from a doctor. I have to go day by day and hope for the best, and pray
@Hamela - I feel that when a surgeon turns a patient away, it’s a positive sign that isn’t the best surgeon for that patient. You will make a positive connection with the surgeon who is right & best for you, but it can take time & may require meeting with several doctors. I will pray for you, too. Please let us know how your appt.goes.
