Hello everyone,
I am happy to report that I have a treatment plan for my eagles and internal jugular vein compression. The sole reason for this is because of this site and the mods & members who all make this place such a valuable resource.
Quick summary: I was diagnosed with EA and IJV compression by Dr. Constantino in NY and his plan is to do 1 side styloidectomy and decompression at a time with about a 3 month recovery between surgeries. They will go in through the neck and remove the styloid to the base of the skull and also do a C1 shave to help open up the jugular vein. My R jugular is compressed by 70% and my left jugular is compressed 100%, no contrast made it into the venogram on the left side because there is bone on bone contact between the base of the calcified styloid and the traverse process of the C1. I was able to get a second opinion from Dr. Cognetti’s office in Philadelphia, from his assistant Dr. Crippen, and they confirmed the same diagnosis and treatment path as Dr. Constantino. Dr. Crippen had the best bedside manner and professional demeanor of any physician I have ever had an appointment with. I am choosing to go with Dr. Constantino because I have more family and resources in the NY area to help me through the recovery.
My big challenge now is getting my cervical instability issue addressed as both doctors felt that was important to have reviewed before surgery. I am now still waiting to see Dr. Henderson in Maryland and one of Dr. Constantinos associates to have them opine on my upper cervical issues. Of note, Dr. Crippen was concerned with the angle of the styloids, because they are rotated so much off center of the spine from each other it creates dynamics that aggravate the area more.
The attached picture is of my venogram. The yellow arrow shows the bone to bone contact of the styoid and C1 traverse process. The small white dot is the calcified stylus.
The blue arrow shows the 70% compression between the white dot and the traverse process. The blue circle shows how the rotation and how the bones are rotated. The two white dots of the styloid should be in a straight line across.
My heart goes out to all of us who deal with this. I am struggling to keep it all together so that I can get through this part of my life. I am working part time and hope that I can at least keep that going until I get the first surgery. For those who relate, its day to day right now, sometimes hour by hour.
It takes me about 3 hours after getting up to stabilize and feel somewhat normal. I stop breathing when I sleep and deal with really bad insomnia due to the pain. What I’ve found is that getting up and getting going helps the most. Every morning I have to “move my blood”. That’s some walking and light weights and taking some l-cirtruline and creatine to help dilate my blood vessels. I can feel the intracranial pressure decrease and my equilibrium normalize. I get those mostly from a gym prework out or energy drink. I know they are not the best, but the caffeine and Nitric Oxide supplements in them are the only way to feel normal at this point. I also found that using nicotine pouches help with the headaches and pressure later in the day. From what I read nicotine generally constrics blood vessels in the body, but dialtes them in the brain. I’ve never smoked, but have found that sucking on these low dose nicotine pouches help cope with the pain and pressure in my head.
I am really scared and vulnerable right now and hope that getting a fair and straight answer to the cervical instability will be as easy and clear as the ES diagnosis once the right doctor sees my case. I am searching around for a forum of cervical instability/atlanto axial instability and have not really found one. It would be very helpful if anyone has resources to anything relating to this condition in the form of support, treating doctors or advocacy groups. I know this forum is strictly for Eagles/IJV and defer to the mods in what is or not permissible here - but if possible - I welcome any links or resources either here in this post or direct messaged to me.
That said, for those who have recovered you give me hope, for those waiting for treatment, you give me patience and for those who are still struggling to get assessed or diagnosed you give me gratitude and if there is anything I my story offers in the way of hope to another that gives me joy.
