Thank you so much! Your sentence “Dr. H will see it through to the very good end for you” made me cry. For the 1st time in 9 years I feel like there may actually be a diagnosis and a solution for my symptoms. I feel like I am finally with a Dr. who understands and wants to help. In order for him to do this, I need to have patience and strength until then. I am comforted just knowing that a there may be light at this very long dark tunnel. I want to be a mom and I just can’t imagine it with how very awful I feel. I am praying for much better days ahead.
Although my neck was not moved into different positions during the US, it seems as though my numbers may still be high. I haven’t heard from Dr. H on what he thinks about the results of the US. I have found out that my numbers range from 37.2 cm/s-104.4 cm/s. I have heard that anything over 50cm/s is high. Do you know if this is true? I would greatly appreciate your input on this. Thanks for all your help JustBreathe!
Dr. H’s normal cut off for US velocities is indeed 50 cm/s and yours appear to be well above that! Crazy to be happy about an abnormal finding….welcome to the beginning navigations in this wild medical wilderness. We are all here to walk with you and Hepworth is the master chess player in this. Sometimes all there is to do is one breath at a time…and that is just fine, your breath will pull you through
@Frankdux
I am sorry to hear your surgery was cancelled, that is a big nut to swallow. Did you do any provocative positioning with the angiogram? Often that is the true test. Dr. H works with those who allow you to move your head with testing, maybe something to ask him about when you see him.
There is no question it is a complicated area to diagnosis and treat. In my experience angiogram testing can be influenced by several factors, most of which are not well documented, but can include medications, barometric pressures, concurrent CSF leak etc.
Great you are seeing Hui next week! I have heard nothing but good about him as a brilliant, kind and caring doctor. Hepworth does refer to him and that says a lot. Between the two you will have a plan one way or another - don’t loose heart! Both of these doctors work with the most complicated cases (mine included) and have a deep bag of resources. You just have to bring patience and perseverance to the table for them to help you.
Stay the course, you are in the best of hands! Let us know how next week goes.
Thank you so much JustBreathe! Your right, it seems odd to be excited to find an abnormal finding, but after all these years this is the first time something is starting to make sense of why I feel the way I do. I am so happy to hopefully finally be on the right path to finding answers. I’m hoping to be seeing Dr. Hui in the upcoming month to find out more. Now that I’m hopefully on the right path, I’m praying I can eventually find relief and some normalcy again. You had vascular ES, right? Can I ask what your symptoms were and how much improvement you’ve had since having your styloids removed? Thanks for helping guide me through this!
@Eagle1
I am happy to help in any way, this is a rough time and having people to hash through things helped me tremendously!
My vascular symptoms included blurred vision, brain fog and light headed with looking down / chewing crunchy foods (stopped shewing gum completely). I was also immediately symptomatic when put into a pre-manipulation position for my neck, needless to say i did not have that treatments. I would also have a barrow reflex when i was sleeping if my head fell into rotation. These symptoms are 90+% resolved. However my situation is greatly complicated by a cranial and spinal leak so my journey is not over.
Great you are getting in to see Hui. Lmk if there is anything else i can help with
Hi Eagle1, I see Dr. H as well and had all of the same testing. My ultrasound was 100 cm/s both sides, my eyes did not show high pressure. My angiogram/venogram came back “mostly normal” aside from a bit narrow transverse stenosis, and something else narrow in my head, however, Dr. H did not seem to think this means I don’t have eagle syndrome. He said it can be dependent on head position and other things. Have you talked with him about any treatments that might relieve your symptoms? I’m on a daily blood thinner that has taken my pain from constant to only occasional. The fact that the blood thinner has helped, has shown us something is likely compressed. I am moving ahead with surgery to remove my right styloid October 13 with Dr H and Dr Annest (his office does the ultrasounds.) Dr H said he’s 70 percent sure it will help, though I may need the blood thinner for life. Hope you find some answers soon! Reach out if you’d like to chat.
Also, my understanding is blockages in your head needing a stent would be separate from anything going on with your styloid, but both can be present, and it’s good to know if that’s going on because treatment would be different and symptoms very similar (high head pressure etc). The stenting would be done by the neuro interventional radiologist Dr Hui or Dr Kaminsky (I saw Dr K for my angiogram.) Sometimes, with eagle syndrome, if the styloid is removed, and the vein still doesn’t open, they will “balloon” the vein. Dr Annest said this is what they will do if my jugular doesn’t open on its own after surgery. Hope this makes sense!
Dr H is very thorough, it took me a year to get to the point where he felt confident that styloidectomy would help, as I went in with throat pain and we tried all the treatments for tonsillitis, blocked salivary gland etc. I didn’t even realize at the time my headaches previously diagnosed as migraines were related, he made that connection. For a bit he considered thoracic outlet syndrome as a diagnosis for me and had me try wearing a neck brace; it didn’t help so we moved on. We’ve also explored that my jaw muscles are making the issue worse and he’s had me on muscle relaxers (which help tremendously.) It was a long road, but he never gave up on my case and always BELIEVED ME when I felt something was wrong. all of the medications he’s had me try, have helped, amazingly. You’re in good hands! Patience is key though I know it is so hard.
Hi blossom! Thank you so much for reaching out to me! I’m so glad that you found relief with the blood thinner and plan to have surgery soon. I have yet to find a medication that helps me. When I last saw Dr. H we did not have my ultrasound results back yet. However, my ultrasound was done at the imaging facility where I had my CT done at. There were 5 measurements for both the left and the right jugular veins. 3/5 were above 70 for both sides. I’m curious as to why you had one measurement and I hade 5 for each side? Do you know why this would be? Although I have not been able to talk talk to Dr. H since having the ultrasound, I spoke with one of his nurses who stated that anything over 70 was definitely too high. I’m still confused by having multiple measurements and others seeming to have one measurement. I will be seeing Dr. H again on the 17th after I’ve had my venogram completed. I’m so nervous that the venogram will not show any compression and that I will be back in the place of looking for answers to why I feel the way I do. My husband reminds me that we will not be at this place of unknowns because the US numbers were high etc. It helps me to hear you say your venogram came back “normal” and that Dr. Hepworth still found surgery for ES relevant and very likely helpful for you!! I’m hoping that Dr. H can place me on a blood thinners my next appointment with him. I’m so glad to hear it’s helping you! Thanks again for reaching out to me!
Hi blossom! I just saw that you sent another message! Thank you so much for all the help and info. I agree with you about being in good hands. I feel so blessed to be under Dr. H’s care! For the first time in 9 years I don’t feel alone with all I am dealing with. Such a blessing!
Thanks Jules! My wedge pillow you recommended has been a God send! Thank you! did you find anything else that helped your symptoms while you waited? I have my Venogram next week and I see Dr. Hepworth on the 17th. Praying for answers and solutions soon!
Hi there, I actually don’t know how many measurements I had taken with the ultrasound, probably more than just the one because it took a while. I just remember the report said there is evidence of compression in my jugular vein between two muscles (forget the name of them) on right and left side, and each one was about 100. I had mine done at vascular institute of the Rockies which is Dr Annest’s practice (he is a vein surgeon.) Dr H seems to want to do the vascular ES cases with a vein surgeon or neuro interventional radiologist on hand so he may refer you there. It’s possible you just had the report written up differently if it was done elsewhere. He reads reports himself and views imaging himself so he will look at it regardless. I had my original ct scan for salivary stones, not eagle syndrome, and the report found nothing, but when Dr H looked at the images he noticed my right styloid.
Truthfully, I don’t even know if the doctor who did my venogram checked compression of my jugular. He was more focused on my head, but at least was able to rule out issues there, and said he didn’t recommend a stent at this time. Are you seeing Dr Hui or Dr Kaminsky? If it’s Dr K, I can give you a rundown of how it went for me.
I know it’s very difficult and scary to not know what’s going to happen, being referred for all these tests (some invasive; my venogram/angiogram was just fine but it was no walk in the park) and still in the dark, when you feel so unwell. I was in your shoes about a year ago and suffering so much. However, based on my experience, I promise, you are seeing a very competent doctor when it comes to these issues; even if the venogram comes back normal he isn’t going to throw his hands in the air and say “well, sorry, I don’t know! Go see someone else!” Many doctors might do that, but my experience, that is just not him. He will have a new plan for you regardless of what the results show. He may want to investigate some other potential diagnoses, and he may not always explain fully what direction he’s going, but that doesn’t mean he is ruling out Eagles. You will see folks on this message board get scheduled for surgery after just one ct scan and I know that can be somewhat frustrating when you are in pain, going for many tests, and healthcare is slow in general… but the extra testing and trials with him have only made me more confident that we’re on the right path. Many of the problems that cause high/low head pressure are in the same realm — CSF leak, jugular compression, even thoracic outlet syndrome — can cause similar symptoms. He is an expert in this area. My fiancé has seen him for years (that’s how I knew of him when I started having these problems) for swallowing and breathing issues — this doctor has helped both of us so much I cannot overstate it. Emotionally, as well, he has helped me cope because I feel confident that he will not give up on me or peg my symptoms as “anxiety.” My fiancé had been shrugged off by 2 or 3 ENTs before he saw Dr H.
All of this long response is to say… you can be confident that you are on the right path with a very competent and caring doctor who specializes in this disease. Some questions that I asked in the beginning that were illuminating to me: is my styloid ligament calcified (based on ct scan)? Are there any prescriptions that could alleviate my symptoms while I wait? I tried aleve first at his suggestion (can act as a blood thinner, it didn’t help me.) I was also on a light prescription pain med before my symptoms were helped by the blood thinner - thank god I don’t have to take it anymore! Steroid injections also were suggested but we never went that route. I was also told to try bio freeze gel; and icing my neck/shoulder on and off helped me a lot as well. Heat made my pain worse but it varies! Happy to chat any time if you’d like to private message me. The folks on this forum are angels and have a wealth of knowledge so you’re in the right place for support! Hang in there.
Thanks Jules! I’m doing really well. I’ve had a few flare ups but nothing like last summer when I was on the verge of going to the ER every other day. Thankfully any pain I have now I can get under control with ice/Tylenol/ibuprofen.
I had nerve pain too, amitriptyline helped with that, & helped me sleep too which was a blessing! Unfortunately I had to avoid things which made the head pressure worse- exercise, stress (not so easy to avoid!), flying…
Very glad that the pillow has helped
Hi Meghan! I see Dr. Hep on the 17th too! Maybe we’ll see each other. I just wanted to chime in on how incredible he is. It took me decades and lots of rude or uneducated doctors (often both) before I found Dr. Hepworth. He is kind and brilliant. He actually believes our symptoms are real and treats his patients with dignity and respect. We’ve been learning together for 9 years now. I could go on and on about him. I adore him. Best wishes to you! It’s a bit of a long journey but you’re going to get better! You got this!
@Blossom – I’ve been away from the board for a while. So excited to see you are having the surgery! I go back and forth a lot. Just when I think the symptoms aren’t so bad, I have a bad day and change my mind. Right now I am leaning toward surgery. But I can’t do anything before the first of the year, because I’m changing insurance. Looking forward to hearing how yours goes. I’ll say a prayer!!
Hi Lulu! Thank you for the response! Maybe I will see you on the 17th! Like you, I have had so many doctors that could not find any answers for 9 years until I found Dr. Hepworth. I can’t even explain how grateful I am that he is my doctor. Did you have jugular compression due to your styloids? Was surgery beneficial for you? I would love to learn more of your story! Thank you for reaching out!
I have yet to find a medication that helps me. When I last saw Dr. H we did not have my ultrasound results back yet. However, my ultrasound was done at the imaging facility where I had my CT done at. There were 5 measurements for both the left and the right jugular veins. 3/5 were above 70 for both sides. I’m curious as to why you had one measurement and I hade 5 for each side? Do you know why this would be? Although I have not been able to talk talk to Dr. H since having the ultrasound, I spoke with one of his nurses who stated that anything over 70 was definitely too high. I’m still confused by having multiple measurements and others seeming to have one measurement. I will be seeing Dr. H again on the 17th after I’ve had my venogram completed. I’m so nervous that the venogram will not show any compression and that I will be back in the place of looking for answers to why I feel the way I do. My husband reminds me that we will not be at this place of unknowns because the US numbers were high etc. It helps me to hear you say your venogram came back “normal” and that Dr. Hepworth still found surgery for ES relevant and very likely helpful for you!! I’m hoping that Dr. H can place me on a blood thinners my next appointment with him. I’m so glad to hear it’s helping you!
I just wanted to chime in on how incredible he is. It took me decades and lots of rude or uneducated doctors (often both) before I found Dr. Hepworth. He is kind and brilliant. He actually believes our symptoms are real and treats his patients with dignity and respect. We’ve been learning together for 9 years now. I could go on and on about him. I adore him. Best wishes to you! It’s a bit of a long journey but you’re going to get better! You got this! 
Like you, I have had so many doctors that could not find any answers for 9 years until I found Dr. Hepworth. I can’t even explain how grateful I am that he is my doctor. Did you have jugular compression due to your styloids? Was surgery beneficial for you? I would love to learn more of your story! Thank you for reaching out!