Msdstc,
I’m sorry you’ve got to continue your search for a better recovery. I’m so glad JustBreathe gave you a great doctors’ list & good MCAS info links. Please do let us know what you learn as you see a new doctor or doctors. We’re always here for you. 
These are great links Justbreath. They suspect my daughter has some mast cell issues that tend to go along with some dysautonomia patients.
Msdstc…so sorry for your struggles. Keeping moving forward as you are, you seem to be very strong person and will make it thru this.
Definitely don’t feel strong. I’ve gained so much weight recently finding comfort in food, and I spend a lot of time lying around. I started to lose weight again and was exercising, but it just mad me feel awful
I understand how frustrating the weight/exercise vs not exercising/weight gain cycle is, Msdstc. I’ve spent my entire life on that “treadmill”. I’ve gained weight in the last several months because I cut back significantly on exercise due to a sore hip. Wish my appetite would cut back when the exercise does!! I also wish I still had the same metabolism I had in my 20s!
Your strength is much deeper than your body! And you have loads of this as seen by your continued push to find the care you need to heal. And you will!
I second that! We have all been down in those pits along the way on our healthcare journeys and thankfully we are all here to support each other thru it.
I was doing well in the spring and summer as far as my weight and lost 20 lbs and once fall came and then the dark dreary rainy days came, I too have regained some weight especially since my surgery in Dec. I have been spending days at a time inside (some due to COVID) and I can feel the weight increasing due to sheer lack of movement. It is depressing and I struggle with it every day. You are not alone Msdstc.
It’s really hard when you can’t exercise & worrying about health etc…we’ve all been there 
I’ve just been too defeated to update. I’m pushing hard here off and on to get things moving again.
At this point I don’t even remember what Ive updated and haven’t. I have a permanent blood clot in my right jugular. It went unnoticed on my most recent scan august 2021 for 32 days before I demanded the imaging myself and told them Im not a doctor but this appears to be a clot… On 3rd look (I had already pestered them over and over to check again something wasn’t right). They agreed with me and it’s a clot. I actually have the back and forth in writing for a month of them saying no my scans are clear and then the noted addendum after THIRTY TWO DAYS noting a clot. That seems like malpractice to me tbh but at the moment I’m purely focused on feeling better. The surgeon I’m speaking with now is open to the idea of getting the styloid down to the base and working on c1 to open up space THEN my initial radiologist, who is by far the most knowledgeable on the condition, is going to attempt to remove the clot or at least reopen the vessel.
It’s so frustrating. I told them before this second surgery that studies and cases show getting to the base is crucial, he disagreed and as it turns out he didn’t get nearly enough of the styloid.
I need a name of a doctor who has worked both C1 and styloid/stylohyoid ligament. I need them definitively removed 100% or otherwise some sort of proper alignment of the atlas. I need so much help here. I’m going to take a leave of absence soon and just dig in and fix this. I feel like absolute hell. My vision is so bad my tinnitus is so bad, I’m totally fogged up. I can’t live like this. Please anyone help me out here.
Hi Msdstc,
I am so sorry to read what’s happened to you. I applaud your effort to get the proper diagnosis & especially for standing your ground when you were being dismissed! UNBELIEVABLE that no one saw the clot even after you pointed it out. It seems their minds were made up, & they were not willing to see the obvious (or admit their mistake up front).
You mentioned that the surgeon you’re talking to now is open to the idea of removing the styloid to the skull base & working on C-1 but then you asked for the name(s) of doctors who do this. Does that mean the surgeon you’re speaking with would not do the surgery for you?
Based on your location, Dr. Annino would be a good choice for ES surgery, & he may be able to refer you to someone to help w/ C-1. There is a doctor in the eastern US who works on C-1, but I can’t recall who it is. Hopefully one of our other members knows his name & can share it.
Shaving the transverse process of C-1 is a very delicate procedure because it can throw the C-1 vertebra out of balance if not done correctly & that of course would cause other problems since that’s the vertebra on which the head balances & rotates. Shaving of the TP of C-1 is done more commonly in the UK than here.
Below is the contact info for Dr. Annino & two other doctors in MA who are on our Doctors List. I hope you’re able to get help ASAP. Please let us know how things go w/ Dr. Annino or whomever you meet with. Wish I could be of more help. 
Massachusetts:
•Dr Timothy Anderson, Lahey Clinic 744- 781- 8467 Timothy D. Anderson, MD - Lahey Health
•Dr Timothy Osborne, Boston University Medical Center, 617- 638- 4350 Timothy M Osborn, MD, DDS, FACS | Boston Medical Center
•Dr Donald Annino, Brigham and Womens, Boston (surgeries on several members), (617) 525-6500 Donald J. Annino, Jr., MD, DMD - Brigham and Women’s Hospital
Oh wow my primary is at Lahey so I’m actually really curious to reach out to the doctor you listed here. Dr. Annino is the doctor I’m currently working with. He’s a great guy and an extremely skilled surgeon, but he doesn’t like to go to the skull base. I don’t think he’s particularly well versed on the condition and the issues it causes itself, I think he’s more familiar with traditional eagles rather than the vascular side of things.
Thanks so much for the kind response. The community here is always so supportive. I’m sorry I disappear for long stretches I just kinda compartmentalize in a bad way, I tuck this whole ordeal away and ignore it. But unfortunately with this condition I feel a lot of us are living life at 50%. It’s exhausting having doctors essentially ignore you.
I’m so glad you’re working w/ a doctor who knows ES, & thank you for the information about Dr. Annino’s approach to ES surgery. Even some of the most experienced ES surgeons on our forum work predominantly w/ traditional ES & sort of “work around” vascular ES cases when doing surgery rather than confronting the situation head on i.e. they remove as much styloid as they feel safe removing but without an eye to IJV decompression. Doesn’t make sense to me when they know that’s a problem, but I’m not a surgeon & am not in their position doing delicate work in very sensitive areas of the body. I imagine my mindset might be different if I “wore their shoes”.
If you can travel, the most experienced vascular ES doctor on our list is Dr. Hepworth in Denver, CO. He’s not taking new patients until sometime in early 2022, but with the gravity of your situation, it would be worth contacting his office early in the new year. Another option is Dr. Nuss in Baton Rouge. He does remove the styloid to the skull base, & we have several members who’ve had good surgical results from him. Dr. Hackman in North Carolina is also one to consider.
•Dr. Edward Hepworth, IMMUNOe, 3150 E 3rd Ave, Denver, CO 80206 (303) 224-4711 http://www.immunoe.com
•Dr Daniel Nuss, Lake Head and Neck Center, Baton Rouge, Mary Bird Perkins Cancer Center (Skull base surgeon) ~ 5/29/21 - We were told by a member that Dr. Nuss is not currently accepting new patients. Daniel Nuss, M.D., FACS | Otolaryngology in Baton Rouge, LA - Mary Bird Perkins Cancer Center
•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484 (Does intraoral robotic surgery - removes styloid to skull base & stylohyoid ligament AND external surgery). Trained Dr. Patel, who is now doing ES surgeries.
So sorry that you’ve had these problems & had to diagnose your own blood clot! That’s appalling! I do agree given how complicated your situation is that maybe Dr Hepworth in Denver might be a good bet if you can travel, he’s very experienced with vadcular ES.
I can appreciate the you feel exhausted with all this- just living with symptoms is bad enough I know from experience, without having to fight for each step & getting nowhere with doctors…
Will pray that you can get some help soon, & sending you a hug…
Thanks all for all the great advice. I think given what I’ve heard and talked about Hepworth is the guy, I just wanna get in asap. I really wanna get things back on track. I feel like hell.
He is very busy but has bumped one member up because of his situation…
@Msdstc I am not surprised that they did not even bother to look deeper for the clots. I do not know whether this behavior is the result of incompetence or negligence or both. I went through similar process getting diagnosed with Vascular Eagle. Too bad we had to play radiologists.
Question, I know you are seeking revision surgery but with the clot present, isn’t there a risk that the clot might get dislodged from the IJV during the operation since they will push/pull the IJV a lot during the surgery and travel down to the heart area to potentially cause pulmonary embolism which is life threatening condition. Or they have contingency plan if that was to occur during the operation. I know they usually administer blood thinning medication but still don’t know how that will prevent it.
From my understanding the clot is more or less part of the vessel now and it won’t ever move unless somebody goes in there and removes it. That’s why I need the vessel freed up first. It’s been done but it’s extremely rare to go in and remove a clot from the jugular bulb, my doctor is ready to go but need to get cleared out first.
Doctors know the best (not always based on my experience) but I would proceed with caution. If the clot is at jugular bulb which is above the C1 level, can’t the clot removal be done prior to the surgery though I know the compression of the styloid process might hinder that but if it is small, they can potentially remove it. They put Catheter with Manometry Wires in there which is thick wire all the time when they are assessing blood flow in the stenotic area. Anyways, wish you all the best hope Dr. Hepworth will proceed with minimal movements on the jugular vein to be on the safe side.
Dr. Hepwroth does his ES surgeries for vascular ES w/ a vascular surgeon alongside him. He also does significant vascular testing in advance of surgery to make sure he knows what the full situation is. He would be cautious in your situation.
If I understood your last post correctly, it sounds like you have someone more local to you who is willing to do the clot removal. That is excellent as you can go into ES surgery w/ less risk then.
Do call Dr. Hep in the new year to get on his schedule. You will have to fly there for a consult w/ his NP first. After that he will do a video consult w/ you. This order of things sounds a bit indirect but it’s how he rolls. His NP is reportedly (repeatedly!) AMAZING so you won’t feel like it’s time or trip wasted.
That does sound like a ton to fly out, fly back, then back out but if it’s the only way maybe that’ll be my only option 
Since you’ll be sending your scans & reports to Dr. Hepworth’s office before you go to your first consult, he/his office will hopefully (you can ask for this) schedule any additional testing he wants when you’re there for the consult. That will help compress your travels.