@DogLover thank you! I try to remind myself of how far I’ve come, but I still feel like I’m only at the beginning. And I’m worried that I won’t have the stamina to continue if surgery doesn’t help. I don’t know if removing the styloids and some of the C1 transverse process affects instability at all. I keep getting mixed responses. I assumed the styloids grew to provide additional support. And since I’ve got instability already, I’m not sure how much more this surgery would impact me compared to a person with a normal neck.
I’ve been told that since no ligaments will be cut, it shouldn’t affect instability. But what happens to the support when some of the structure is removed?? I’m just very unsure. But I don’t really have a choice at this point. I’m not even sure what a fused atlas means regarding this surgery. I mean, it can’t exactly go anywhere lol. Maybe it’s a good thing? Or maybe that’s just me wishful thinking.
And yes! I’ve never been an anxious person at all. I’ve always been the one holding everything and everyone else together lol. So to have non-stop panic and anxiety has really taken its toll on me. Im glad to hear the ballooning helped you become more functional for a little while. It’s amazing how well the body bounces back when it’s under the right conditions. I was talking to someone who had been dealing with this nightmare for 18 years! And since surgery, she has had great relief. It’s good to know that after so many years, the damage can still be reversed and it isn’t necessarily permanent. I think I’m lucky I figured out Eagle syndrome so quickly considering how hard it is to convince the doctors. I had to push a lot and I’m the suffer in silence type so that in itself was a mission!
The neurosurgeon I saw said he only performed one styloidectomy. I don’t believe he had too much experience/knowledge in that area. I didn’t really like the vibe I got from him to be honest. It just felt a little off.
And that’s good to know about Dr Higgins. It’s so rare to find open minded and empathetic doctors. That gives me some reassurance.
Will Dr Axon and Dr Higgins team up for your surgery? I’m really excited for you. I have faith that you will get through this and one day it’ll just be some crazy distant memory.
Was the angiogram with Higgins ok? Was it painful at all? Did it feel weird? I’m pretty nervous about it. Did it take a long time? And did they monitor you afterwards before you went home? How long was it before you got the results?
Do you know what else they look for during the angiogram. What other things are they ruling out?
How does ballooning work between the styloid and C1? Wouldn’t that be dangerous to inflate a vein with bony compression either side?
Sorry for all of the questions! And thank you again for your support. I’m used to being alone, but this kind of loneliness is much different. Being in my own company is completely skewed since my body is misfiring all over the place.
I’m grateful I don’t have to feel totally isolated when I come to this group.
Reach out if you also need any support or reassurance. I’m looking forward to hearing your updates
@DogLover I know we do not have a lot of energy to chase trivial things specially with ES but what I thought and still think was a tiny clot. I am still bit puzzled though, even if this is small vein/artery, it should not be dark inside (unless it has clot in it) since contrast CT should be bit bright similar to the Aorta arch and the rest of BV. Also, I could not find tiny vessels around the area where the sternum and BV meet. Anyways, I am analysis/paralysis type of guy as I am used to analyzing things to death. So sorry if we are splitting hair here. Really did not want to revisit it but was bit curious.
Hi @Dontgiveup I’ve been off-line for a bit. Just wondered if you had come to a decision yet. I saw someone on the forum say the wait for an op with Dr Axon was about 40 weeks and that was a couple of years ago so I was thinking you could put your name on the list and you could always change your mind at a later date. It’s just such a long wait potentially.
The angiogram was fine but I’m very interested in what’s going on and you can see some of it, so that probably helped. I’ve had 2 now and 2nd was a bit more uncomfortable so I guess it just depends, but still not as bad as the dentist! I felt pretty safe in Dr Higgin’s hands too as he’s very experienced and seems very well respected by all the staff.
I think they look for a change in pressures - they inject colour and see how it travels and measure the pressure on either side of the stenosis; it’s fascinating actually. I’ve put a picture below to give you some idea - it’s a snapshot of the venogram showing the blood on one side of the brachiocephalic with a pressure of 11 and you can see the colour stops travelling through cleanly. I got these images afterwards by sending a form off to the hospital.
I don’t think the ballooning is dangerous but doesn’t last long as it’s pretty much immediately compressed again, but it can give you some idea if it makes a difference, albeit short lived.
Thanks for your encouragement too. I daren’t get too excited in case it doesn’t work and I need to keep fighting. I also think that most of the problems come from my brachiocephalic and they won’t treat that yet so that’s going to be a real battle. One step at a time.
Thanks for your help in answering my questions. I actually wrote to Dr Axon today to ask whether we could proceed with surgery without having the angiogram. He was debating on whether it was appropriate to just do surgery, so he must be confident to suggest that. So I’m just waiting to hear back. I don’t know whether he’ll change his mind or not.
I don’t really want to go through the experience of having an angiogram. I feel a bit more reassured after hearing your experience. So, if I need to have it done, I will.
I think my CTV showed obvious compression and correlated with my symptoms enough to warrant surgery. Dr Axon wanted to get the angiography done to see whether C1 needs to be tackled or not. But wouldn’t he be able to decide that when performing surgery anyway?
I’m still going around in circles in my head. All the what ifs. Im worried I’ll be stuck in this state or made worse by surgery. I see plenty of horror stories on the fb group. Some people say they had success, then weeks later it sounds like it wasn’t too successful. Can’t really make comparisons, but it’d be nice to hear more success stories. Im worried I’ll just be trading my symptoms for other symptoms at this point.
I don’t know if it’ll even work. I can’t exactly avoid surgery though. I either go through with it or continue to suffer.
I understand you not wanting to get your hopes up. I do the same. It’s easier to cope that way. Feels like you need to be in battle mode to continue. I’m trying to get through each day really.
I hope you’re holding up and doing ok too. It is really about taking it one day and one step at a time. If we keep going, eventually we’ll get there.
Please keep in mind that both on FB & here, the people who get good surgical results often “disappear” from the forum. They start living again & want to put ES behind them. It is my firm belief that more people get good results from ES surgery than don’t. Because the people who struggle come back for support, it sometimes seems there is a preponderance of members who’ve had bad surgical outcomes which in turn scares those of you who haven’t had surgery yet. I am not trying to minimize the risks of ES surgery especially where vascular issues are concerned, but in the hands of a very skilled surgeon like Dr. Axon, I feel the chances for an improved life are very high.
Thanks @kooldude. I’m really grateful for your input. I’ve spent quite a lot of time looking into it as the last thing I want is an op if I have a thrombosis so definitely worth coming back to. I’m pretty sure the shadow is the gap between the brachiocephalic (even thinner than I thought - about 2mm) and other veins including thyroid vein when I follow it through the CT scan. Also I think it would show up on the Catheter Venography and I do have a lot of faith in Dr Higgin’s experience. I’ve got another scan coming through though so I’ll check that too. Better to be safe …
I agree it would be great to see some posts from people who have had success with vascular eagle surgery. It does seem as @Isaiah_40_31 says they disappear after surgery which I presume is a good thing! Is it the livingwitheagle facebook page?
Obviously don’t really know but I would think Mr Axon’s decision about C1 would be based more on the scan than the catheter venography as it shows where the compression is. Do you have any axial views - like this. Then you can see for yourself just how much the compression involves the atlas tip.
@DogLover yes, below are my axial images. My atlas formed unsymmetrically so one side is higher than the other. Both sides are squished between my styloids and C1.
It looks very obvious doesn’t it? Did Mr Axon mention doing both. I asked him whether he would do the styloid first and then see if that worked but he said he would do them together as removing the styloid would mean scar tissue would make it difficult to access the C1 transverse process at a later date.
Looking at the scans it doesn’t look as if you have much option as certainly the right jugular is well and truly wedged isn’t it. Like you said can’t see ballooning making much difference. You and I aren’t radiologists but even we can see there’s not a lot of room for it to balloon!
Btw one of your images you posted a while back seemed to have bone subtracted and just showed the veins and arteries. Can I ask which software you used to get those images.
@DogLover yes. Dr Axon said he’d want to do the styloidectomy and C1 shave together in the same surgery for that reason.
And yeah, the symptoms on my left side is generally worse (right side on the image).
But yeah. They look pretty squished to me. I’d be worried about ballooning the jugulars since I can just imagine how tight it is and my jugular exploding
Funny because a neurosurgeon looked at those images and thought that they weren’t compressed enough to cause my symptoms.
I’m sure if Dr Axon thought that, he wouldn’t be recommending surgery.
I downloaded a free trial of RadiAnt Dicom Viewer to change up my CT scan into 3D images.
There is a livingwitheagle FB grp from what I understand but I don’t know if it just reflects what goes on in this group or it’s a unique entity. There is another FB grp started by someone on FB which someone sent me a link to awhile ago, but, I don’t use FB so have seen neither site. I’m sorry not to be able to answer your question.
I will see what I can learn about the FB livingwitheagle site & will let you know.
I was actually looking at the right (on left) as the styloid is more chunky but on 2nd look the left is even tighter isn’t it? Maybe they will do both in your case. If I find some positive stories of full and amazing recovery (and I know they’re out there) I’ll share them. Just looking back at other people’s history with vascular and a quick glance at FB too, they all seem to share the bizarre and random symptoms so hopefully we’re both on to the right thing. Not surprised you feel so dreadful with those squished veins. Don’t give up @Dontgiveup
In the meantime have you seen this? Even though it’s thoracic outlet syndrome, it shows just how quickly blood can back up in to your brain and presumably stop the newly oxygenated blood getting in there too!
@DogLover thats fascinating to see that in motion! Thanks for posting that. I really like being able to visualise what’s going on in the body.
And yeah, my styloids are pretty chunky. Especially at the skull base, which is where most of the compression is. So I’m a little worried Dr Axon might have trouble removing all of the styloid in that area to provide enough relief.
Can I ask, does you head feel extremely heavy with the pressure? I feel like it’s hard to keep my head up without wanting to slouch forwards. Not sure if this could be a symptom of vascular compression or not.
Yes my head has felt really heavy for years! It’s like I struggle to hold it up.
Thought this might interest you too with your cervical instability and heavy head. Not advocating these guys - I’ve read mixed reports even on this site. Before I found Mr Axon I was getting to the point of selling up and hopping on a plane to go and see them though as they are the only ones offering any alternative to surgery. Tinnitus, depersonalization, tachycardia, and more. Patient shares 6-week curve correction update - YouTube
Talking of Mr Axon hopefully he has enough experience to realise you will need the bulky bit removing, unlike some of the other surgeons mentioned on here. Have you made any decisions yet?
@DogLover yes, I actually had a consultation with caring medical over the phone. I’ve heard mixed reviews about them as well but thought getting additional opinions couldn’t hurt.
They told me that they wouldn’t treat me (if I were to fly out) unless I had my styloids removed first. Since they’re causing jugular compression, prolotherapy wouldn’t fix that.
I’ve been trying to figure out whether to try prp first or go ahead with the styloidectomy. I wondered if tightening the ligaments could pull my spine away from the jugulars. But I’m not sure how that works with me since my atlas is fused.
So, I think hopefully getting the styloids removed and potentially having C1 shaved will provide symptom resolution. And if not, maybe I can try prp afterwards if the instability is a major player. But I think I’d rather try my luck with Regenexx in Colorado if I could.
I’m sorry you have a heavy head too! They say that’s a hallmark symptom of cci, but I also believe that high pressure could cause a heavy head.
I’ll definitely talk to Dr Axon about my chunky styloids and my concerns.
When it comes to jugular compression, can even mild pressure cause extreme symptoms?
Whilst reading the report that @KoolDude sent over:
It says that the guys compression was mild. But it must have been significant enough to warrant surgery?
I just thought mild would = not significant enough. It certainly had a devastating impact on his life for being mild.
I didn’t get copies of my imaging, so can’t show you that, but left side my styloid was significantly squashed, right side less so…but it was enough to cause grim symptoms for me!
@Jules it must be completely unique to each individual. I’ve been told by another surgeon that my jugular compression didn’t look severe enough to be causing my symptoms. But maybe, with some people, it takes a lot of compression to cause symptoms, and with others, maybe it doesn’t take much compression at all, based on the other issues within the head/neck.
For example, the people with who already have issues with CSF flow due to low lying cerebellum tonsils, you would think that it would take less compression on the jugular before the tipping point is reached.
But that’s why I worry about relying on numbers with these tests. Maybe the compression is mild, but it’s enough to cause a serious problem since there are other factors that aren’t necessarily acknowledged, which would take less effort to reach that tipping point.
I looked at Regenexx too. You sound like me looking for explanations. I want to know why this has happened - is my atlas pulling forward or my occipital being pulled back? Still feel like we aren’t treating the cause.
I think you are spot on there about different people and other factors. I only have compression on one side but have the brachiocephalic on the other for example. I can’t quite understand why I have so many collaterals that by pass the jugular from the head though especially on the left as they drain into the same vein. Still confused and still feel like something may be being missed. Can I ask does head turning make your symptoms come on really quickly? Mine seem to be becoming very dramatic when I lift my arms forward or turn my head.
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