Hi all,
wondering if anyone here in our community has had total occlusion of their jugulars and wanted to see if it is possible that styloidectomy would possibly open the blood flow?
I have severe case and I do finally have a doctor that I will see but not until next Tues! Praying this guy will be able to help me..
Anyone?
A styloidectomy will only help your problem if it's being caused by the styloid pressing on your jugular vein. A CT scan with contrast would be your best diagnostic tool. I don't know what other structures there are in that area that could be compressing your jugular vein, but again, a CT w/ contrast should make visible to your doctor what is causing the problem.
I hope this helps!
Heya Zprhead!
Yikes! I don't know if I"m familiar with reading anyone else's story with Total occlusions, but I know a number of members have had various levels of jugular compression.
I had a vasuclar component to my ES as well, although it was a transient, functional compression. (No one got a clear official picture of it, but the symptoms were fairly obvious when I turned or raised my head and started swirling my eyes and slurring like a confused drunk hobo) Surgery made a Massive difference if my quality of life and reduction of symptoms.
Which doctor are you seeing? A lot of people on here really stress going to see a doctor familiar with ES, and I truly agree with them. It's important to work out if it's Just your styloids causing the compression though.
Its from malalignment of your jaw, your bite and or facial assymetry
Hello,
I had an occlusion of my carotid artery (jugular). It was a blood clot that was caused by a tear in the arterial wall. My neurovascular specialist at UCSF thinks that my styloid may have caused the initial trauma. I now have an aneurysm in the artery and it is growing, again he thinks that the repeated trauma from the styloid may be causing the enlargement. I am getting worked up now to rule out Eagle Syndrome. Just be sure it is not a clot because that can lead to a stroke. I was lucky and got on blood thinners right away. Good luck.
I'm sorry - I did a reply yesterday, but somehow it's gone missing!
I had a big compression of the jugular vein on my left side, (but not total occlusion), and a less severe occlusion on the right. I was getting symptoms of Intracranial Hypertension- dizziness/ off-balance feeling, headaches, feeling 'out of it' and some scary feelings like I was falling as well as ear/ head pressure and pulsing in my neck, plus some other really scary feelings in my head. I'm presuming that you have symptoms of IH with your complete occlusion?
I had surgery last year to remove the worst side, and within a few days I felt loads better. The worst/ scariest symptoms went. I was getting to the point where I was scared to drive because I felt off-balance and peculiar, but that's all better. But I still feel that the jugular vein hasn't completely re-opened, as I still feel some of the pressure if I try to lay on that side. I also get some symptoms back, although thankfully not the really scary ones, if I try to do any exercise, or if i'm feeling stressed- I presume that it's when the blood pressure goes up! I'm not sure how much the right side is still affecting things, and how much is possibly the left not completely re-opened. So I'm having the right side removed soon! (I didn't think to ask if the blood flowed very well once they'd removed the styloid in the OR)
There have been some other people on here with similar problems- some have had stents put in. But I can't see the point of stenting without removing the offending bone if it's still going to squash the vein! The doctor who did my surgery said that if I still got symptoms after surgery I could consider having a stent put in, but he said that it can cause pain, and also can't ever be removed once it's in. So as I'm feeling so much better, I definitely wouldn't want that! (But others here have been ok with stents).
The only thing I would say, as others have said, is make sure that your surgeon has experience. The doctor who operated on me is a skull-base surgeon, and as the styloid was compressing the jugular vein nearly the whole of the styloid's length, it needed to be removed right up at the base of skull to remove all the compression. He's used to operating in this area, and did surgery externally. So you would need to discuss that with your doctor- how much of the styloid they can remove, and where is the styloid compressing it- there's no point taking a bit off and leaving some in still causing compression, IMO. And it might be worth discussing about what would happen if the vein doesn't re-open well.
I am so glad I had surgery, it wasn't as bad as I thought it would be, and the results for the vascular symptoms have been great!
Jules, i feel like i'm reading my own journey and i couldn't agree more with everything you are saying.. Working on getting to Vascular ES doctor thats 5 hrs away, I'm scheduled to be stented just in case its still the case after styloidectomy...So happy to hear your doing better and can imagine how much better you will be once the other is removed!! Who is your doctor?
Jules said:
I'm sorry - I did a reply yesterday, but somehow it's gone missing!
I had a big compression of the jugular vein on my left side, (but not total occlusion), and a less severe occlusion on the right. I was getting symptoms of Intracranial Hypertension- dizziness/ off-balance feeling, headaches, feeling 'out of it' and some scary feelings like I was falling as well as ear/ head pressure and pulsing in my neck, plus some other really scary feelings in my head. I'm presuming that you have symptoms of IH with your complete occlusion?
I had surgery last year to remove the worst side, and within a few days I felt loads better. The worst/ scariest symptoms went. I was getting to the point where I was scared to drive because I felt off-balance and peculiar, but that's all better. But I still feel that the jugular vein hasn't completely re-opened, as I still feel some of the pressure if I try to lay on that side. I also get some symptoms back, although thankfully not the really scary ones, if I try to do any exercise, or if i'm feeling stressed- I presume that it's when the blood pressure goes up! I'm not sure how much the right side is still affecting things, and how much is possibly the left not completely re-opened. So I'm having the right side removed soon! (I didn't think to ask if the blood flowed very well once they'd removed the styloid in the OR)
There have been some other people on here with similar problems- some have had stents put in. But I can't see the point of stenting without removing the offending bone if it's still going to squash the vein! The doctor who did my surgery said that if I still got symptoms after surgery I could consider having a stent put in, but he said that it can cause pain, and also can't ever be removed once it's in. So as I'm feeling so much better, I definitely wouldn't want that! (But others here have been ok with stents).
The only thing I would say, as others have said, is make sure that your surgeon has experience. The doctor who operated on me is a skull-base surgeon, and as the styloid was compressing the jugular vein nearly the whole of the styloid's length, it needed to be removed right up at the base of skull to remove all the compression. He's used to operating in this area, and did surgery externally. So you would need to discuss that with your doctor- how much of the styloid they can remove, and where is the styloid compressing it- there's no point taking a bit off and leaving some in still causing compression, IMO. And it might be worth discussing about what would happen if the vein doesn't re-open well.
I am so glad I had surgery, it wasn't as bad as I thought it would be, and the results for the vascular symptoms have been great!
Joanna
I have no doubt that caused blood clot, when my journey first began it was from a huge clot in my sagital sinus which started this downworld spiral of IH, chronic cerebral spinal venous insufficiency which was diagnosed just 2 months after my styloid compression was found in the year 2013, but my venous issues all started jan 2012, i see no coincidences. Wish you the very best in finding someone to help!
Joanna said:
Hello,
I had an occlusion of my carotid artery (jugular). It was a blood clot that was caused by a tear in the arterial wall. My neurovascular specialist at UCSF thinks that my styloid may have caused the initial trauma. I now have an aneurysm in the artery and it is growing, again he thinks that the repeated trauma from the styloid may be causing the enlargement. I am getting worked up now to rule out Eagle Syndrome. Just be sure it is not a clot because that can lead to a stroke. I was lucky and got on blood thinners right away. Good luck.
Hi snapp,
Working on getting some imaging to a doc who has much considerable knowledge in Vascular ES thank GOD!! I found out about him through eagle group on facebook, he asked me to send imaging to him and he will do his best to help me..which doctor did you use? glad to hear your doing better!
SnappleofDiscord said:
Heya Zprhead!
Yikes! I don't know if I"m familiar with reading anyone else's story with Total occlusions, but I know a number of members have had various levels of jugular compression.
I had a vasuclar component to my ES as well, although it was a transient, functional compression. (No one got a clear official picture of it, but the symptoms were fairly obvious when I turned or raised my head and started swirling my eyes and slurring like a confused drunk hobo) Surgery made a Massive difference if my quality of life and reduction of symptoms.
Which doctor are you seeing? A lot of people on here really stress going to see a doctor familiar with ES, and I truly agree with them. It's important to work out if it's Just your styloids causing the compression though.
Isaiah 40:31 said:
A styloidectomy will only help your problem if it's being caused by the styloid pressing on your jugular vein. A CT scan with contrast would be your best diagnostic tool. I don't know what other structures there are in that area that could be compressing your jugular vein, but again, a CT w/ contrast should make visible to your doctor what is causing the problem.
I hope this helps!
Thank you Isaiah, I have had the cta already but the next step is getting 3d ctscan of skull base andneck, this is what Vascular ES doc is requesting, so praying i'm finally on my way to possible help!
I'm UK, so I have seen Mr Axon at Addenbrooks. He's very experienced with ES, but also very interested in pulsatile tinnitus, so he picked up on that symptom, and ordered a CT with contrast. I hope that you can get your treatment soon!
Thanks, I can hardly bare this pulsating another day its the absolute worst heart beating everywhere in my head, ears being worse and my eyes its so so bad and feeling sick on top of about 20 neuro symptoms
Jules said:
I'm UK, so I have seen Mr Axon at Addenbrooks. He's very experienced with ES, but also very interested in pulsatile tinnitus, so he picked up on that symptom, and ordered a CT with contrast. I hope that you can get your treatment soon!
Would a CT scan with contrast show occlusion of the Jugulars and carotid artery compression or does the radiologist have to be told to look specifically for that issue?
Tj here. Sorry I missed this earlier.
Generally an experienced doc can confirm in the office whats going on with sonography (screening tool only) and go from there.
Prolly the most experienced guy in the US with this is Vince Eusterman at Denver Health Medical Center, University of Colorado School of Medicine, in Denver, CO He has established as institutional protocol CT venogram for these situations which is some different from a regular CT with contrast. The dye is in a continuous flow giving far more info than a static CT. He also usually will monitor brain tissue oxygen to see if the PbO2 levels vary with Intracranial pressure changes. It avoids a lot of unnecessary surgery.
I’m a bit prejudiced as he was my old Boy scout senior patrol leader. He may be worth a record review if you aren’t getting what you need at home. He has published a ton in this area.
This is a very good question. I hope someone can comment on this as Im also interested in learning the answers too.
Mine showed up very clearly, but mine was done at a different angle to those put on here, from the top of the head down all the way through head and neck, rather than looking at me side on. I would’ve thought that a radiologist should be able to see it; the whole point of a CT with contrast is to see what’s happening with the blood vessels…
The ENT Doctor at the University of Texas Health Science Center was the first to see an impingement of the internal jugular on a non-contrast CT. He ordered a MRA to confirm and it showed both the styloid and the C1 transverse process impinging from opposite sides.
How’re you doing; your symptoms sounded scary… are they going to operate?
1 Like
Dr. Morehead was the first ENT to acknowledge Eagle’s syndrome. He has done several internal surgeries but, after discussing the case with their neuroradiologist and the chairman of the Department of Otolaryngology-Head and Neck Surgery, they believe the external approach would be better.
I meet with the chairman (Dr. Miller) next Friday. He has performed numerous external surgeries. I also hope that he can address the elongated transverse process at the same time. The jugular is about 60% compressed.
I have been happy with UTHSC thus far. They were able to do the MRA the same day as my appointment. Interestingly enough, the styloid and transverse process are also somewhat elongated on the right side but I feel no pain in that area.
I don’t know how to add UTHSC to the doctor’s list but they may be able to help those patients located in Texas.
Hi Alexandra,
It’s been years, so I don’t know if you’ll get this message. How did your surgery go with Dr. Miller? I’m thinking of travelling to see him from Canada because he seems like a really go doctor and my brother lives in San Antonio and would be a support.
Thank you for any information you can share!