Gave the same post OP symptoms I gave to Hepworth crew to my primary care…“go to the ER immediately”.
Get to the ER, “who told you to wait a few weeks? Guy, you should have been here 4 days ago.”
What did they find? I hope they discover something obvious and treatable.
1 Like
@Eric1 - Ask them to look at the greater horns of your hyoid to see if they’re compressing your ICA/ECA or carotid sinus. As long as you’re there, you might as well get that base covered if you can.
I’m glad you went. Your symptoms sound miserable.
2 Likes
Dude, you really dont know how this works do you? They never find anything.
I’ve been to the ER well over 20 times over the past year. I am well aware they never find anything.
Was hoping it could be different for you though since your stroke-like symptoms started after surgery. Was hoping they’d find something obvious like a nicked artery and fix it for you. ER radiologists really aren’t thr best at looking at ES-related and hyoid-related imaging. They see that there is no stenosis or aneurysm and assumes that means the patient is okay. It’s infuriating I know
3 Likes
@Eric1 - Have you gone in for any testing to see if you might have a connective tissue disorder or MCAS? Might be worthwhile as if you test positive for either or both, it could help explain your severe reaction to the surgery you just had.
1 Like
No, because we I asked them why did zero testing in the 9 months before the surgery, they responded with “there are no tests.”
We’ve had a few discussions about MCAS & testing for it, you could have a search for MCAS testing in the past discussions? I believe that some members have had tests for tryptase & genetic testing…
Honestly, I am not a big fan of Hepworth right now, but that is a pretty big accusation. How many opinions did you get prior to surgery? Imaging does not lie. All of my imaging came way before meeting with Hepworth and they all showed and it was noted of issues with my jugular veins and C1. Mast cell is very difficult to test for. You can also see a genetic Dr to get a diagnosis of EDS. Very few genetic Drs. have the experience however that the Milunksky’s in Cambridge MA have. Both father and son specialize in diagnosing EDS and hEDS.
2 Likes
Saw 5 neurologists, 2 neuro surgeons, 1 cardiologist, 1 vascular surgeon. 2 migraine specialists, 3 ENTs.
Multiple trips to the ER where stroke teams were activated. Multiple ultrasounds. No one ever mentioned IJV compression.
I found my way to Hepworth with an AO chiro noticed elongated styloids and they were confirmed by a TMJ specialist. But, no one ever saw compression.
And yes, I know there are tests for Mast Cell and connective tissue disorders. They have just decided I have both without any testing and despite me having a terribly negative response to Cromolyn.
I am comfortable with the accusation, especially since the Health Images they sent me to told me that they do the scan “special” for Hepworth patients.
I wrote that there are no definit ive tests for Mast Cells. A connective tissue disease can be very hard to diagnose if its EDS. Yes, I saw countless of specialists for years. I even had unnecessary spinal surgery. My symptoms started in 2013. The difference is you needed to get opinion from the right providers. The specialists you mentioned probably have no idea what ES is. I saw them all as well. Unless, you got the opinions from the recommended specialists within this group or who had extensive knowledge is this disorder, they were not valid opinions. The only thing different at Health Images is the Ultrasound. It is the same imaging you can get anywhere. I was diagnosed from imaging at my local facility way before I even met Dr. Hepworth. Compression was clear and it was all noted. I then took that imaging and saw 3 of the top specialists in their fields. It’s our responsibility to do what is best for us. If you wanted a confirmation of what Hepworth told you, then you get those second and third opinions from the specialists listed here and other groups. I am sorry you are not better, but I have to disagree with accusation that was made. Keep pushing.
2 Likes