I had MVD surgery for GPN 4 months ago and, while I had some minor improvement in a couple of areas, have had a rough time. Symptoms have gotten worse over the last two weeks / jaw /temple/head/tongue, etc have been bad - talking is strained, etc....similar to before the surgery.
I was Dxd by a CT scan (in search of Eagles in February) as having C1 / transverse process degeneration / articulation with left occiput. The ENT surgeons nurse told me on the phone that this may be a "cause of your problems" - but did not offer me another appointment.
This article suggests that this could be a cause of eagles. Anyone ever heard of this?
Sorry that you've been through that surgery Eddie, with only a minor improvement. It's an interesting article, and could explain some of your problems. I suppose it would depend on how the degeneration might be causing pain in itself? But surgery to remove the styloid may well help too. It sounds like an area a skull base surgeon might be able to help with if the ent doesn't want to help.
Thanks Jules - good advice on the skull based surgeon. A little history: I've had degenerative disk disease for 20+ years. I also have c5-c7 degeneration worthy of surgery on its own. In the run up to the sudden onset of this disease in early October, I had been traveling a lot, I had severe neck pain , bruxism, etc. I injured it one night after a long drive I was trying to lift a heavy trailer with my left hand, while clenching hard on left side...the entire neck locked up and I started having spasms (face, neck, ear, etc) the next day. Two nights later I had the tongue , jaw, neck, etc go into convulsions..I was spewing out saliva , etc. Since then I've had heavy saliva, pain /spasms in temple, ear, jaw. When I talk a lot the temple area gets to 10-10 pain, my jaw tightens up, tongue gets tense and extremely painful, burning tongue - off the charts pain. Also get the globus and back of the throat / tonsil area jaw elevating spasms. Neck, shoulders , back - radiculopathy ..all bad. Spasms in neck / vascular , etc. Symptoms are much more in line with vascular Eagles than classic GPN. My takeaway from the article is that if the C1/transverse process is out of line it can affect the position and/or anatomical structures - notably the styloid process - around it. In my case, the C1/tp is trying to fuse with the skull which is likely throwing a lot of stuff out of balance. The vertebral artery runs through the transverse process on its way to the brain - my pain doc agreed that the c1/tp issue could have caused problems with the vert artery (this was the main artery that was decompressed in the MVD) - if so, a lot of things may also be affected.
I see an oral surgeon tomorrow - what kind of scan do I need to ask for that will best show all the neuro / vascular / structural issues?
Dr Cognetti was one of the authors of the article - I may contact / send my stuff in to his office.
A CT scan with contrast (also called a CT venogram) will show the blood vessels in that area and if they're being constricted- that's how my ES was diagnosed as vascular. Standard MRI's wouldn't show blood vessels, but they will show degeneration, discs etc well. There's different MRI scans which can show more- there was a discussion on here a while ago- MRA (Magnetic Resonance Angiography)., which again shows the blood vessels. Dr Cognetti would probably be a good bet then!
Let us know how you get on, hope that your appt. tomorrow goes well.
Hi Eddie, fellow GPN/MVDer here (2 years ago). I have a ‘twisted’ C1 and it’s very closely butting up near my styloid process on my right side, where my symptoms are.
Funnily enough I am going down the path of that article at the moment but slow progress in the UK. I can only confidently say I don’t have classic Eagles at this point but need to be investigated for vascular and waiting on scans right now.
My MVD was pretty unsuccessful too and I’ve ended up with increased pain too plus I have extra symptoms that don’t fit in totally with GPN alone. My blood vessel was pressing on 9/10/11th cranial nerves so I hoped that explained all the shoulder and neck pain but doesn’t seem to have been the key.
Jeffina, sorry you are having the same issues but maybe we are both closer to a resolution. The article states that the patients’ styloid processes were between .02 and .46 cm from the C1/TP. It isn’t that surprising that the juxtaposition of the C1/TP and/or a misalignment could affect these ligaments. Good luck !
The last CT I got (he one that noted the C1 problem) stated " The left styloid process is no longer than the right." Then, next page in 'Impression" " The styloid processes are symmetric in length. " and "the stylohoid ligament is nonossified". It didn't state the length of the styloid processes...is that worth checking out?
Thanks,
Eddie
Jules said:
A CT scan with contrast (also called a CT venogram) will show the blood vessels in that area and if they're being constricted- that's how my ES was diagnosed as vascular. Standard MRI's wouldn't show blood vessels, but they will show degeneration, discs etc well. There's different MRI scans which can show more- there was a discussion on here a while ago- MRA (Magnetic Resonance Angiography)., which again shows the blood vessels. Dr Cognetti would probably be a good bet then!
Let us know how you get on, hope that your appt. tomorrow goes well.
Eddie, I'm surprised that there was no mention of styloid length, you could check it out, your surgeon if you go ahead may well want to know. Although in your case it sounds like the styloid angle/ proximity to C1 is obviously the problem so the length doesn't really matter?
It may be the C1/ styloid angle issue (it is my top theory) - not sure - but will pursue that as well as other routes. If they are elongated that would clarify a lot of things I think. All radiologists are not the same - and I've found good surgeons can uncover more on a scan than radiologists in some cases. Met with an outstanding oral surgeon today who saw some stuff on my tmj mri he wants to get some answers on and I'm going to have a scope procedure on my tmj in hopes of getting some relief there. I'm having a nerve block on v2 nd v3 of the trigeminal nerve on Wed. Thanks Jules !
Jules said:
Eddie, I'm surprised that there was no mention of styloid length, you could check it out, your surgeon if you go ahead may well want to know. Although in your case it sounds like the styloid angle/ proximity to C1 is obviously the problem so the length doesn't really matter?
It is hard to say how common this C1 transverse process issue is - but I'd venture to guess that this and other structural issues (alignment, boney growths, etc) could be more of a factor than we think.. After MVD surgery , I've had at least three occassions that I've had relapse kind of symptoms after periods of activity. I've got really bad cervical issues so I can get very tight / tense pretty easily.
Ivy said:
This is valuable information concerning C1 and the styloid. Perhaps the C1 issue is why some people still have issues after ES surgery?
Hope that all goes well with the nerve block, and that the tmj stuff can be improved. I think so many of us have multiple issues which complicates what's ES, and what's down to the other things... Your other cervical issues will undoubtedly affect it too, I have a slipped disc C5-C6, and that has improved, but doesn't take much to start playing up again, and have lots of knots which never seem to go completely...
The above article is new and so encouraging. So glad to see something new published under Eagles syndorme. This a a new beginning for Eagles sufferers. I have noticed several articles since 2010. Also, note that other articles on transcervical surgery for other reasons could also lead us to doctors who can handle eagles if they are good at the surgery. I would recommend that we keep new members from other countries informed of articles like this one. I saw one authored by Japanese doctors, It was in reference to something else maybe tonsils. Regardless, exciting to see the articles.