Hello all, I have major Jugular Compression, my left side is useless and my right barely trickling,per vascular doc. well I am barely existing, nearly passing out can't function at all.. Can anyone here direct me to a doctor near around , GA? SC, NC? I've been very ill since October..I believe my compression is caused from styloid as its in an old report from back 2013 my recent testing show major stenosis but doc isn't agreeing from styloid, I beg to differ..Its my first time writing here not sure if i am doing it right, please forgive me if I done it wrong, lack of blood flow has made me very ill. I've had too travel too much from my other conditions the last 6 years, if there is a willing caring doc who i can send my imaging etc too that would even be better!! thank you
Sorry that you're suffering like this; I know how rough vascular ES can be, although was never at the point of passing out.... Have you looked at the updated doctors list on the top menu bar? There is a doctor in Georgia on the list, and also a couple in North and South Carolina. I'm UK so can't help you too much with that other than suggesting the list. You could get in touch with any of those doctor's secretaries and ask about sending imaging to them rather than having to travel.
Don't give up- I was told it wasn't possible to have the styloids pressing on the blood vessels, but luckily through here I was able to find a more experienced doctor and the scans showed it clearly. The only thing I would say is that if the stenosis is very severe you might need a stent putting in as well as removing the styloid process. The side I have had done I don't think has gone back to 'normal'- I still get the occasional pulsing etc. there, but it's not bad enough to risk having a stent in- but the worst of the vascular symptoms did subside a lot. There was also a discussion about that recently as one member had a stent in but the styloid left in, but I was warned against that as having a stent can be painful and cannot be removed. So obviously different doctors have different opinions- that might be something you could think about before an appt., and be prepared, ask about etc. This is the recent discussion link: http://forum.livingwitheagle.org/forum/topics/ct-angiogram-potential-vascular-eagles?commentId=6309075%3AComment%3A72202
Sorry too that you have the other conditions as well- are you a member of the Ben's Friends sites for Chiari and EDS? We have had a couple of members joined recently with Chiari too; maybe you could get in touch with them to ask about their doctors- I'm presuming that you have to see someone quite specialised for that as well? I've put in links for you if you want to look at discussions:
http://forum.livingwitheagle.org/forum/topics/now-eagles-syndrome-on-top-of-arnold-chiari-malformation-anyone?commentId=6309075%3AComment%3A71878 http://forum.livingwitheagle.org/forum/topics/new-to-eagles-and-wondering-if-i-have-this-plotos-attached
http://forum.livingwitheagle.org/forum/topics/new-bee-here-trying-to-learn-and-gather-info (this was a while back)
BTW you did fine with your discussion! I hope that you can get some help- please let us know how you get on!
Thank you Jules, doc is wanting to stent but I need to be sure there isn't styloid/ligaments compression before doing so, it can make things worse..I've attached article that I've know about since 2013 which was first time styloid process was ever mentioned in my scans. The pulsing, head pain, neck pain, eyes and ears are being severely affected. I do have chiari/eds and recently had cranial cervical fusion did very well all this past summer then my ventricles collapsed and turned out I was leaking had to find specialist to help with that now this venous junk :(
Jules said:
8-Styloidogenic_Jugular_Venous_Compression_Syndrome_.34.pdf (418 KB)Sorry that you're suffering like this; I know how rough vascular ES can be, although was never at the point of passing out.... Have you looked at the updated doctors list on the top menu bar? There is a doctor in Georgia on the list, and also a couple in North and South Carolina. I'm UK so can't help you too much with that other than suggesting the list. You could get in touch with any of those doctor's secretaries and ask about sending imaging to them rather than having to travel.
Don't give up- I was told it wasn't possible to have the styloids pressing on the blood vessels, but luckily through here I was able to find a more experienced doctor and the scans showed it clearly. The only thing I would say is that if the stenosis is very severe you might need a stent putting in as well as removing the styloid process. The side I have had done I don't think has gone back to 'normal'- I still get the occasional pulsing etc. there, but it's not bad enough to risk having a stent in- but the worst of the vascular symptoms did subside a lot. There was also a discussion about that recently as one member had a stent in but the styloid left in, but I was warned against that as having a stent can be painful and cannot be removed. So obviously different doctors have different opinions- that might be something you could think about before an appt., and be prepared, ask about etc. This is the recent discussion link: http://forum.livingwitheagle.org/forum/topics/ct-angiogram-potential-...
Sorry too that you have the other conditions as well- are you a member of the Ben's Friends sites for Chiari and EDS? We have had a couple of members joined recently with Chiari too; maybe you could get in touch with them to ask about their doctors- I'm presuming that you have to see someone quite specialised for that as well? I've put in links for you if you want to look at discussions:
http://forum.livingwitheagle.org/forum/topics/now-eagles-syndrome-on-... http://forum.livingwitheagle.org/forum/topics/new-to-eagles-and-wonde...
http://forum.livingwitheagle.org/forum/topics/new-bee-here-trying-to-... (this was a while back)
BTW you did fine with your discussion! I hope that you can get some help- please let us know how you get on!
BTW I found a doc here on this list that happens to be at Same Hospital that my chiari neurosurgeon is located and he has email, I'm writing him today!!!!
That's great! Thanks for the article- will have a read when I get a chance!
Hi zprhead,
I had vascular Eagles on my right side. I didn't have the other conditions you have, but the vascular symptoms I had were similar to yours. And similar to your doctor, the doctor I went to didn't believe the styloid was causing my symptoms. Luckily though he agreed to operate. He told me that once he went in, he found that the styloid was longer than it looked on the CT scan and that it was compressing both the carotid artery and jugular vein. After my operation was over I felt better immediately. It was a night and day difference. So I think you're right to check on the possibility that the styloid may be causing those symptoms. Maybe the doctor(s) may be open to hearing that people on the forum had a (sort of) similar situation and were cured with the styloid surgery.
Hi Heidemt, thank you, i'm ready to feel better, feel like i'm dying over here I am In Georgia, who did you use? I would like to stay around GA, SC, NC areas, where are you from if u don't mind me asking?
Hi - I live in Honolulu, HI and the operation for the vascular Eagles was at the Cleveland Clinic in Cleveland. The doctor that did my surgery went back to Pakistan and is no longer there. He hadn't done an Eagles surgery before mine, but he was an experienced surgeon. While it's best if you can get someone with Eagles experience, the most important thing is to get a good surgeon with experience operating in that area of the neck. A number of people have had luck with skull-based surgeons.
You're in my thoughts and prayers. Hang in there. I know it's so hard, but you're getting closer and closer to getting this fixed.
I went to Charleston ENT, Doctor Brown. He has diagnosed about 50 people w ES, but has had good luck w anti inflammatory meds vs surgery. He has me on meds for 6 weeks and then we will reevaluate my pain levels.
Minifury,
I seriously doubt antiinflammatory meds will work for me as i've been on them for years, my left IJV is totally useless and right is barely draining at all, I 'm nearly passing out and very sick from it.. wish you the best..
MiniFury said:
I went to Charleston ENT, Doctor Brown. He has diagnosed about 50 people w ES, but has had good luck w anti inflammatory meds vs surgery. He has me on meds for 6 weeks and then we will reevaluate my pain levels.
I'm so sorry to hear about your symptoms and condition. Many of us can relate to not receiving a correct diagnosis for a very long time. I had several doctors and radiologists all measure my styloid differently. The last radiologist looked at my vascular CT and said there was no issue with the blood flow. After my surgery I was told that during the surgery when my head was turned to certain positions it nearly completely blocked off my one and only jugular vein. My point is that this is not an easy road and can be incredibly frustrating at times. My neurovascular surgeon was amazing. I was his first Eagle's patient so we're both still coming to terms with expectations for recovery. You had asked me how I'm doing since my surgery. I think that my recovery is not typical for what others have experienced. I have ended up with a yet undiagnosed nerve issue in my arm, shoulder and neck. It causes me an incredible amount of constant pain. I've been to a number of specialists since my surgery in Feb. They are getting closer but I need some more tests. Most people recover very well in the weeks and months after surgery. It's very unlikely you would share a similar experience as mine. Aside from that the surgical pain has diminished considerably. I wish you well in your search to find answers to your suffering.
Thank you Susan for sharing and so sorry to hear of yet another undiagnosed suffering..i've been through 15 neuro surgeries, it seems we fix one thing then something else happens.. I do wonder has thoracic outlet syndrome been ruled out for you? I don't know a whole lot about it but here this type of pain that comes with TOS..Just a thought..
Susan said:
I'm so sorry to hear about your symptoms and condition. Many of us can relate to not receiving a correct diagnosis for a very long time. I had several doctors and radiologists all measure my styloid differently. The last radiologist looked at my vascular CT and said there was no issue with the blood flow. After my surgery I was told that during the surgery when my head was turned to certain positions it nearly completely blocked off my one and only jugular vein. My point is that this is not an easy road and can be incredibly frustrating at times. My neurovascular surgeon was amazing. I was his first Eagle's patient so we're both still coming to terms with expectations for recovery. You had asked me how I'm doing since my surgery. I think that my recovery is not typical for what others have experienced. I have ended up with a yet undiagnosed nerve issue in my arm, shoulder and neck. It causes me an incredible amount of constant pain. I've been to a number of specialists since my surgery in Feb. They are getting closer but I need some more tests. Most people recover very well in the weeks and months after surgery. It's very unlikely you would share a similar experience as mine. Aside from that the surgical pain has diminished considerably. I wish you well in your search to find answers to your suffering.
Zprhead, I had an angiogram cat scan the other day that revealed I do have venous thoracic outlet syndrome…on both sides. Looking back I had a few symptoms prior to surgery such as my fingers and hands alternating from blue/purple to extremely red. I thought I had developed Raynaud’s Syndrome but now I think it was TOS. I had some pain under my collar bone too but nothing like the pain I’m experiencing now. I’m seeing a vascular specialist that deals with TOS on May 31st. Any info you might be able to share would be greatly appreciated!
Hi Susan I don’t know much about TOS but recently a wife I speak with her husband just had surgery for TOS which caused severe jugular distention etc, your the only 2nd person i’ve heard thats had this problem down into the thorasic, she is a wealth of knowledge but i don’t think she is here in this group, on fb yes. Since we can’t name people here I don’t know how to connect you?
Zprhead, you can send Susan a private message. Click on her picture and a box will pop up and you can choose to send her a message.