Hi, yes I have had a Venogram in my brain. I’d like to reassure you it’s not as scary as it sounds. I did feel the movement of the wire inside my neck and brain sometimes, which was an odd sensation but not painful. After the procedure was over I honestly would not have known I had anything done at all. It did provide me with meaningful diagnostic information. Hope other US based members can answer some of your other questions for you (I am in UK). Hope you get the help you need soon. D
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Hi @MsBearshark, sorry to hear your still on the hunt but good to hear there is a plan.
I have had the venogram (also called angiogram FYI) with a different NIR in Colorado. It requires placing a catheter in your femoral vein (groin area) and then it is advanced up through your body, into the IJV and up into your head. This allows them to see all of your vessels and measure pressure gradients that would indicate stenosis. They give you light sedation so it is only a pressure feeling and the recovery is quick with restrictions for bending/lifting for 24-48 hrs depending on the NIR.
I am not aware of any other way to treat a stenosis in the transverse sinus than placing a stent. Sometimes blood thinners are advised if the findings are minimal but it would not change the diameter of the vessel if it is narrowed, that is an anatomical problem.
The US would look at the vessels below where muscle/first rib can cause problems but sounds like Dr H thinks this is okay and is ordering the venogram to look higher.
Hope Dr Case can see you soon, hang in there for this next layer of the onion!
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Thank you @PatientD and @JustBreathe for your reassuring words! I’ll just have to wait and see if Dr. Case will see me.
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So sorry that you have to go through more testing after you’ve had surgery, but at least you’ve seen a good doctor & he thinks he knows what the issue is…we’d normally suggest getting the other side removed to get rid of all compression, but Dr H is definitely the expert! I hope you can see Dr Case soon- again like we’ve advised with other doctors, once he’s received the referral you could ask for a cancellation if you’d be able to go at short notice, although that might be difficult for you?
Sending you a hug 
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Happy new year all! Another update: another round of antibiotics for chest infection in the new year and then everything settled down quite well. Saw ENT consultant this week and he was charming etc but the consultation gave me no real answers bother than both my styloids were elongated, he didn’t say how long they were and I was not shown the CT scan either. He couldn’t tell me why I get transient dizzy spells or whether the pain and stiffness in my neck and base of skull were Eagle or OA. He told me specifically that Eagle cannot be diagnosed until styloids have been operated on??? What?? He showed me a picture of an intra oral approach and said “you don’t want anything so extreme” or words to that effect, To be honest, I don’t want to go charging down the surgical route until other avenues have been discussed/explored. He did agree that my so called trigeminal neuralgia was actually dental related and was apologetic that it had been missed on many occasions. However, what I am seeing and hearing is every specialty having no communication and no overlap with others related and to the patient’s problems. He was pleased to exclude an ear related cause but I had no questions answered really despite having written some down to ask. All in all, a well staged path to “nothing to do with me” discharge. I still have a neuro appt end of the month so ……… 
@Mcwelly - It’s really good to hear you’re finally feeling well! You sure went the rounds w/ infections at the end of last year!
I’m sorry your ENT visit didn’t provide you with some more specific direction to help resolve your symptoms. We have a number of members who have several different undefined health challenges along w/ ES. The advice we’ve given in the past is to take care of the thing you know you have & see what changes. ES causes myriad symptoms that range all over the body, & some people who were tentatively diagnosed w/ such things as TOS, GERD, Fibromyalgia, Migraines, etc., had the symptoms for those resolve once their styloid(s) were removed so no further medical intervention was needed.
I think you know that we endorse external surgery (through the neck) for styloidectomies. I feel it was wrong of your ENT to show you a picture of an intraoral styloidectomy as a scare tactic though neither surgery is “pretty”.
We have the voices of hundreds of members who can attest to the success of ES surgery. It is not an easy recovery but having the styloids removed has been life changing in a positive way for so many of us here. Granted there are those who don’t have a great outcome, but most often there is at least some dissipation of symptoms & thus improvement in overall health & mindset.
Trigeminal Neuralgia is often caused by elongated styloids not just by tooth problems. We also have members who’ve had teeth pulled unnecessarily in an effort to calm their trigeminal nerve pain. When the teeth were gone, the pain remained. It took having their styloid(s) removed to stop the trigeminal pain. This is just food for thought.
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@Isaiah_40_31 - thank you for your kind and supportive reply and I’m glad to have access to this group and all the information it provides and the journey of others gives me strength. Of course, like many others, I had never heard of ES before it happened to me! Since then, we have a steep learning curve and I have read up and watched and listened. The pics are gory and I knew what both intra oral and external could look like but I don’t think it was very productive to have a one off image on the screen, like you say, almost like a shock tactic to put you off. Funny you mention GERD as I had a fundoplication in 2019 for a large paraoesophageal HH. Other weird symptoms like dizziness, sudden attacks of vertigo, strange pains etc, only your closest family see. Doctors often dismiss things as “a virus “, your age, OA and of course, the old chestnut of anxiety!
Of course the last thing anyone wants is to resort to surgery but at the very least, an honest two way discussion and informed choices shouldn’t be too much to ask for surely? Sadly it seems it is nowadays!
Will see what the neuro dr says when I see him. Incidentally, am currently on NO medications and that makes me feel better in itself!
Early morning rant over - thank you reading. 
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Thank you for your kind reply. I was a bit afraid my post might have come off as a scolding which it wasn’t meant to be. You need to take your time to decide what’s the best way to pursue resolving your symptoms & be satisfied that you’ve made the right choice(s).
I’m glad you had your HH taken care of. Those things can be very nasty & problematic. I’m sure you feel better w/ it healed up. I totally understand the dizziness/vertigo attacks as I have Meniere’s Disease & those go hand in had w/ that, but in your case it might be some sort of vascular compression or inner ear situation. So many possibilities w/ the symptoms you have. Super to know you’re on no meds now. That’s a wonderful thing!
I’m glad you’re here @Mcwelly, & you know we’re always here for you.
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thank you too and my, you’re up early for the US? Xx
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Up late! It’s just after midnight where I am. 
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So sorry that you didn’t get any answers from your ENT- the surgery is tricky & a good excuse for doctors to try & put you off it- the first consultant I saw said he wouldn’t do it unless I was suicidal with the pain! (I wouldn’t have let me operate on me anyway!)
I’m glad that you’re over the chest infection & off medications, interesting that you feel better for that!
I hope that the Neuro is more helpful, sending you a hug & prayers 
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Many thanks Jules, yes it was a put off even though he doesn’t do the surgery himself. The trouble here is that you never get to discuss anything with a radiologist and GPs only get the reports and other specialists only read reports and don’t go through anything on the films themselves. I’ve always thought my problems started with dental infections and these probably started with acid reflux! I would just like to have all the connections made for once!
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PS, have any members had specialised physio for ES? Have good results been reported? Where would I even start to find one? GPs no use. 
Some members have had physio which has helped a bit, but anything needs to be done carefully or serious damage could be done, I’ve not heard so much about anything specialised for ES though…I had PT for a prolapsed disc which improved all the neck tension & did help with ES symptoms indirectly. I think in the US some members have seen chiropractors but I believe they’re qualified doctors so different to the UK.
One of our members has published a research paper you might find interesting:
WESTBROOK et al. (2020) - Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction – Doctor info and research article - General / Research Papers - Living with Eagle
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Bear, did you have any luck with Dr. Case? Dr. Hepworth’s office still hasn’t sent over any clinical notes, reports or imaging for me. Dr. Case requested it again on Feb 9th. I called the clinics that did my imaging and requested that they send it to Dr. Case put it must not have gone through. I didn’t have the PowerShare Code for their office but do now so I’ll try again. Dr. Hepworth is such a frustrating experience for me it’s difficult not to take it personally.
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I’m so sorry your destroying experience has become somewhat perpetual, @stuuke. Perhaps this is a life lesson in “perseverance in battle”? Giving up is easier, I know, but I have great admiration for you because of how stalwart you’ve been in this situation. I hope it pays great dividends in the end.
@stuuke, I heard back from Dr Case’s office, and he refused to see me. I left a couple voicemails with Dr. Hepworth’s office, and received a call back saying they have sent a referral to the the Yakes Vascular Malformation Center, which is also in Colorado. I plan to follow up with them next week. If that doesn’t work out, it seems like I will have to travel to North Carolina to get a catheter venogram done.
It usually takes a day or two, but recently I have been getting call backs from voicemails left on Dr. Hepworth’s nurses’ line (option 4 on the phone tree). I hope they start responding to you and getting your referrals into the right hands soon!! It seems to help if I keep my messages short and focused on just one clear question.
It does sound like Dr. Yakes’ office doesn’t participate in any of the digital file transfer systems, so I will need to have physical CDs sent to him from each of the various locations I’ve had diagnostic work done…hopefully that will all pan out.
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Hope that you that you can get somewhere with getting your scans sent through, and I hope that Dr Case will help you. So frustrating for you…
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@MsBearshark any progress with Dr. Yakes? I think that’s the next place Dr. Hepworth is going to send me. Allison mentioned him on the phone, but I haven’t heard anything official yet. I’d love to see someone in state!!
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@Bopper, it took a couple weeks, but Dr. Yakes’ office got in touch today, and I’m scheduled for a consultation visit mid-March. No word yet on whether they’ll do a catheter venogram or not.
If you think Dr. Hepworth is going to send you there, you can go ahead and fill out the new patient request form on their website, and start having your imaging sent over. They won’t schedule you until they get a referral and at least some imaging, but you can get into their system and start the information transfer process while waiting for that to come through.
I’ll let you know how it goes!
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