Hi everyone and thank you for the add. I have chiari, EDS and a friend who is a member here believes from my scans quite possibly Eagles. I just recently had a stent placed in my right internal jugular vein as it was so constricted (by my floating C1 and styloids). However, after 3-4 weeks I started having pain and the new CTV showed “external compression by the calcified styloid and C1”. I am attaching pictures. The left IJV is constricted but no nearly as much.
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Have they given you a measurement of the styloids? They do look a little long- the average most doctors use is 2.5-3cms. But it's not just about the length but the angle too, and yours are obviously not helping with your C1 problem as well. There have been studies (the details are in the ES Info section) which have shown that the angle they grow has a big impact, often more so than the length. There have also been several people here who have had longer than normal processes on C1 which makes the compression worse.
Sorry that you have Chiari and EDS too, to have a triple whammy must be hard. It's funny, I can't remember hearing of anyone with Chiari before and now there's 3 of you all at the same time! Are you all members of the BF's Chiari site as well?
Thank you for sharing your pictures. My son's looked similar. His measured 31mm from the CT but then after surgery they were actually less and the difference was calcified ligament. His were about 25mm.
Hi - I actually met with Dr. Cognetti yesterday and he wants to do the styloidectomy of my right styloid as it is sticking right into my right internal jugular vein. It is somewhat elongated but not horribly but its the fact that its constricted the jugular that is the issue and now the stent. So we have a April 1st date (I have to wait until Im off the blood thinners). My neurosurgeon is pretty confident that the vein/stent should bounce back into shape and blood flow should establish properly. If not, he can balloon the vein/stent to get it flowing again. So, there we go!
good luck LoriW. May this surgery give you peace.
LoriW said:
Hi - I actually met with Dr. Cognetti yesterday and he wants to do the styloidectomy of my right styloid as it is sticking right into my right internal jugular vein. It is somewhat elongated but not horribly but its the fact that its constricted the jugular that is the issue and now the stent. So we have a April 1st date (I have to wait until Im off the blood thinners). My neurosurgeon is pretty confident that the vein/stent should bounce back into shape and blood flow should establish properly. If not, he can balloon the vein/stent to get it flowing again. So, there we go!
Hope that the time soon passes for you LoriW! And hope that the surgery goes well.
Thank you so much Jules. I will keep everyone apprised!
I have chiari/eds also and left jugular is usless and right barely trickling, they want to stent and don't agree of the styloid process compressing my jugulars, i'm desperately trying to find help with the styloid, cta radiology report from 2013 says they are there. I hve worsened since cranial cervical fusion, nearly passing out etc very ill from it, hope you can get help~mind if i ask who stented you?
Hi - Dr. Kenneth Liu down at UVA. I adore him. I've seen many many neurosurgeons and had way too many surgeries on my head. He is by far the kindest and most knowledgable surgeon (not counting Dr. Cognetti - but I have not had my surgery with him yet!) I have ever met. I'm happy to put you in touch with him if you like. Feel free to send me a message.
Lori are you on faceback by chance can we please connect there? I'd really like to speak with you regarding Dr. Liu, I just seen him this past wed.
LoriW said:
Hi - Dr. Kenneth Liu down at UVA. I adore him. I've seen many many neurosurgeons and had way too many surgeries on my head. He is by far the kindest and most knowledgable surgeon (not counting Dr. Cognetti - but I have not had my surgery with him yet!) I have ever met. I'm happy to put you in touch with him if you like. Feel free to send me a message.
LoriW- have you still got the date of April 1st for surgery?
Hi Jules - Yes I am still scheduled for April 1st. Am waiting on times - they are not so quick on the draw up there and I'm getting a little antsy as its a week away and I have no time for my meeting with anesthesia the day before or my scheduled surgery time either.
That's a pain- hope you can get something sorted out! Thinking of you...
Thank you so much Jules - you are very very kind.
Hi everyone - I had my surgery on Friday morning the 1st (no April Fool's joke) and Dr. Cognetti said it all went perfectly. The styloid was absolutely sitting right on top of my jugular as he thought it would be from the CT-Scan. Aside from being swollen and having a hard time swallowing (all normal) - the pain is totally manageable. I will have another CT-V with Dr. Liu (my neurosurgeon) on May 6 to see if the stent and vein have re-opened on their own or if it has to be ballooned back open. Although I'll probably be able to tell hopefully by my symptoms once the swelling goes down. So fingers crossed this does the trick. C
Can't say enough about Dr. Cognetti, he was professional, kind and warm, something you don't find very often in a surgeon. Keep you all posted!!
Thanks for letting us know- thinking of you, and hope the swelling goes down soon!
Wow Lori, fantastic news. Do you feel any of the symptoms resolving yet? Did Dr Cognetti say how long it might take for the swelling to go down?
I'm not sure yet. My headaches were a bit better over the weekend and I normally would have had a crushing headache with the pressure change yesterday and although I had a headache it wasn't hideous. Dr. Cognetti didn't say how long about the swelling. I did email him with a picture and asked if I could keep icing and he said yes. I have a skype conference with him on thursday so we'll see what he says then if I'm still swollen. But I think so far so good!
I think any improvement is a good sign. And it's only been 4 days! That's great that Dr. Cognetti will do a Skype conference too.