I just want to tell you all how grateful I am to have discovered this forum! I have gone undiagnosed for 9 years now. My symptoms of daily head pressure, rocking sensation (as if I were standing on a moving dock), left ear fullness, brief head spins, and left side neck and jaw pain are extremely debilitating and I am praying for relief. The best way to describe it is that it feels as if I am always standing on a moving dock with a bad hangover.
My SPs are measuring 4.5 bilaterally. I have sent my scan to Dr. Samji, but he still has not received it. I also made an appointment a few months ago to see Dr. Hepworth in July. I am so glad that this appointment is quickly approaching.
The ENT that discovered the ES recently said that it appears that I may have intracranial hypertension. This made perfect sense to me. He had me get my eyes tested this morning and there was no signs of any swelling. Everything looked normal. This is good, except I was certain that I am dealing with Vascular ES. My questions to the group are:
Is it possible to still have intracranial hypertension even if the eye exam was normal?
Is it still possible that I am dealing with Vascular ES even though the eye test was normal?
Could my SPs still potentially be compressing veins etc. even if the eye test was normal?
The next step is possibly going to be a spinal tap. I am wondering if I should wait to do the spinal tap until after I see Dr. Hepworth. Maybe he can assess me for IH without the spinal tap? I donāt know how all of this works, so any information would be so gratefully appreciated! I see Dr.Hepworth in 3 weeks and it canāt come fast enough. Thank you in advance for any input and advice!
I had my eyes checked; IH can compress the nerves to the eyes & so can cause blurred vision & do damage, so it was good to get them checked. But itās not a diagnostic tool for either vascular ES or IH (mine were fine too), so donāt worry that you might be on the wrong trackā¦
The consultant I saw was considering doing a spinal tap; I really didnāt want to have that done as it can have risks. When he saw the compression on the CT with contrast he was sure that heād seen the cause & so decided against doing a lumbar puncture, fortunately! So I wouldnāt rush to get one done- maybe others whoāve seen Dr Hepworth can chip in with his protocols & give you advice, but from what Iāve read on here he does have vascular tests that heād like to get done, so I think youāll be getting plenty of testing soonā¦
Hi,
I am sorry to hear of your struggles, this is no joke!
From my experience the answer to all three of your questions above is yes! I have had all of those without papilledema. Dr H has a good protocol of testing and depending on your presentation and prior testing will guide you very well. You are in the best of hands with him, hang in there!
Thank you so much! Having these issues for so long and not being able to find any relief causes me to worry that I will have to live like this and that I am possibly still on the wrong track. I have to keep reminding myself that my symptoms really seem to be adding up to vascular ES and my styloids are 4.5 bilaterally. My poor husband is reminding me daily that we are closer than ever now. He tells me just because it has taken so long to diagnose, doesnāt mean you wonāt find relief. I pray he is right. I am so glad to be seeing Dr. Hepworth in a few weeks! Thank you again for reaching out to me. Did you have surgery? Was it beneficial for you?
@Eagle1
Sorry just now seeing this. Yes, Dr H has done both of my styloidectomies which were causing severe stenosis of my IJVs and carotid artery. It has given me tremendous relief of those symptoms and has allowed me to more forward with addressing other problems, we tend to be complicated patients
I am so happy to hear you have found relief!! What symptoms have you found relief from? I am feeling truly blessed to be able to see Dr Hepworth! I had an MRA last year that came back normal. Is it possible to still have jugular compression from the styloid process even if an MRA of the head and neck came back clear? Thanks for your input! This is a steep learning curve.
Iāve been seeing Dr. Hepworth for over a year. he has never even mentioned a spinal tap. I would wait and follow whatever protocol he recommends. And yes, I had a clear MRA, and Dr. Hepworth believes I have vascular Eagles.
Imaging can be limited for many reasons but one reason a MRA may read as normal is often the vasculature is only stenosed in certain head and neck positions and the MRA is taken in head neutral. Dr. H has a US protocol to take velocity measurements in different head positions to help capture this. He also works with NVIRs who do an angiogram and take pressure gradients in different head positions.
Each persons unique anatomy of the elongated styloid will dictate symptoms. My styloids had grown along the stylomandibular ligament and attached to the back side of my mandible. Thus, any time i opened my mouth (expressive talking as well), chewed or turned my head it caused vascular stenosis/occlusion of my vasculature. The surgery greatly relieved symptoms for brain fog, rebound intracranial hypertension and trigger of the intracranial baroreflex (which affects your blood pressure, heart rate and respiratory rate) to list a few.
Seeing Hepworth in couple months. Hope he can figure what no other doctors can. Was noted severe jugular compression by C1 on my CTV scan and planned surgery for styloidectomy and C1 resection but angiogram normal do nuerosurgeon canceled surgery.
Hi there! I know that you mentioned Dr. Hepworth requests venograms. Is this common? I went to him believing I have vascular ES & he is now requesting I have a venogram of my dural venous sinus, left sigmoid and cavernous sinus. It seems he is more concerned with my brain and I am confused by it all. I would really appreciate any insight you might have. Thank you!
Hi! Yes, this is part of his protocol. He is very thorough and understands the big picture. It is very limiting to look only at the IJV when it attaches to all of the vessels in your brain and each affect one another.
You are in the best of hands but if you are concerned his NP and PAās are very well educated and can answer any questions you may have regarding your case in particular!
Hope this is helpful, happy to help in any other way!
Thank you so much for the response! I really appreciate your help. I am definitely learning as I go. Do you mind me asking if you had a venogram of the sinuses in your brain? Did your venogram also look for signs of vascular ES? What were your final results from having these tests? I see many ppl. talking about the velocities in their IJVs. Is the venogram where they receive these numbers? My ultrasound came back stating that everything looked normal, but maybe Dr. Hepworth will think differently when he reviews it. I know I have bilateral SPs measuring around 4.5 and finally felt a sense of relief thinking vascular ES may be the reasons for my debilitating issues these past 9 years. I was very confused when he referred me to have the venogram of the brain done. I think he is absolutely amazing and I trust him, I just am trying to figure out what it all means. Is it possible for the SPs to cause issues in these brain sinuses? Thank you for taking the time to help me!
Yes I have had an angiogram/venogram of all the vasculature in my head and neck. Stenosis was identified for bilateral IJV measured with pressure gradients above and below the styloid / C1.
The velocity measurements are taken with the Doppler US, not the venogram (that is pressure gradients) Was your US done in different head positions? This is important for many the elongated styloid does not compress the IJV or other vasculature unless in rotation and/or slight chin tuck.
It is important to look at the vasculature in the brain as many of us who have vES also have other issues higher up in the brain that has gone undetected. This has been part of Dr. Hās learning curve over the lat 4 years as he continues to incorporate all systems potentially involved with ES.
Thank you again for all your help. I just want to feel better. I honestly donāt know how much longer I can keep living the way I am feeling. Your support means everything to me. I am praying that Dr. Hepworth will be able to find answers for me. No, my ultrasound was not done with different head positions. It was done by the radiologist office that Dr. H had referred me to so I assumed they knew how to do this accurately. Does the US always pick up on ES or can the venogram still help in the diagnosis if the US comes back normal?
Do you mind me asking if they found any blockages up higher in your head and how that was dealt with? Dr. Hepworth stated that if they found a blockage higher up in my brain that this could be stented. I am curious to know if ppl. always have a stent placed or if ES surgery can ever be done instead of the stent. I am still trying to put all these pieces together.
I am so glad that Dr. H is checking everything out for me. I feel truly blessed to have found him and to be his patient. Do you know if it matters who does the venogram? He has referred me to either Dr. Hui or Dr. Kaminsky. I would love any feedback you might have on these two doctors and who I should travel to see. I have to travel either way and just want to find answers. Thank you again for taking the time out of your day to help me better understand all of this!
The venogram looking at the cerebral vascular structures is also useful to see as if the jugular veins are compressed other veins can take over to a point & become larger than they should be.
The venogram should pick up any compression even if the ultrasound doesnāt, but if possible you could ask about different head positions as JustBreathe says. If youāre seeing his team for that hopefully theyāll have more experience than the radiologist who did the doppler, but hopefully someone whoās seen them can give you advice on that!
If you do have jugular compression from the styloids, getting the styloids removed is the best way to treat it, just stenting doesnāt really help. Sometimes stenting is needed as well, if the jugulars donāt spring back, or venoplasty can be done which is less invasive. I had bilateral jugular compression, just removing the styloids was enough to make a massive difference to symptoms, so I didnāt need stents. I hope that youāre āluckyā too!
Thanks for the response, Jules! I am glad to hear that the venogram and pressure gradient testing are part of the ES protocol and that I am hopefully still on the right track. I will make sure and let Dr. Hepworth know that the radiologist did not move my head in different positions when doing the US. As far as seeing someone for the vemogram, Dr. Hepworth suggested I see Dr. Hui or Dr. Kaminsky. He said to see whoever I can get in to see the fastest. I have to travel for either or these doctors, so that isnāt really an issue. I am just hoping that some ppl. can join this conversation and help me to decide which doctor they think is best. To be completely honest, I feel like I am dying and Iāve just had this for so long that I have a strong fear that this may never get better. I am just worried about how long it is going to take for me to see one of these experts for the venogram of my brain sinuses.
It appears from the appointment notes that Dr. Hepworth is concerned about IH. He noted that he wants the venogram of my dural venous sinus, left sigmoid and cavernous sinuses. He said if a blockage is found in these areas that it could be stented. This is why I am not sure if ES is even on the table anymore or if he thinks the issue is solely potential blockages in my brain. This is why I am trying to figure out if there is a connection between ES and having blockages higher up in the āstreamā from the jugular vein.
I was expecting/hoping for him to say that the styloids are compressing my jugular veins and the fix will be to have them removed. It wasnāt that clear cut, however. I am just hoping I can get into see one of these specialists for the venogram and God willing that I am still moving closer to feeling better. I would appreciate any other info/insight you might have. Thanks so much Jules!
From what Iāve read on here, Dr Hepworth is just very thorough, & wants to rule out any other possibilities before he goes ahead with surgery for ES, so just because heās doing this testing it doesnāt mean that he wonāt offer you a styloidectomy if itās the right thing to do. Other members have been through this like you. THereās a couple of discussions with peopleās experiences & a link to a research paper JustBreathe posted before which you might find interestingā¦
There is a mention in the second one about not being checked with head in certain positions, so if you get to see one of these doctors as weāve said something to ask about.
From what Iāve heard on here recently, Mr Axon who did my surgery in the UK (& is the most experienced ES surgeon that we know of here) now seem to be following a similar protocol of extra vascular testing before recommending a styloidectomy.
All of the imaging is helpful in making the diagnosis, which may be more than just ES! One imaging does not rule out treatment for the other in most situations. Hepworth is very thorough this way. I did not have any stenosis in my brain thankfully.
Both Hui and Kaminsky are great, i agree to see whom ever you can get in first with to get things rolling. I have heard that Johns Hopkins is running a bit slow and that Hui is moving his practice soon though.
Hang in there! We can all relate to the misery this brings but you are not alone and you will get through this. It is a complicated process though and it takes time to heal once you start having interventions. Dr. H will see it through to the very good end for you, you are in excellent hands and a hugely caring heart.
What symptoms have you found relief from? I am feeling truly blessed to be able to see Dr Hepworth! I had an MRA last year that came back normal. Is it possible to still have jugular compression from the styloid process even if an MRA of the head and neck came back clear? Thanks for your input! This is a steep learning curve.
I am definitely learning as I go. Do you mind me asking if you had a venogram of the sinuses in your brain? Did your venogram also look for signs of vascular ES? What were your final results from having these tests? I see many ppl. talking about the velocities in their IJVs. Is the venogram where they receive these numbers? My ultrasound came back stating that everything looked normal, but maybe Dr. Hepworth will think differently when he reviews it. I know I have bilateral SPs measuring around 4.5 and finally felt a sense of relief thinking vascular ES may be the reasons for my debilitating issues these past 9 years. I was very confused when he referred me to have the venogram of the brain done. I think he is absolutely amazing and I trust him, I just am trying to figure out what it all means. Is it possible for the SPs to cause issues in these brain sinuses? Thank you for taking the time to help me!