I’ve just booked to see Dr Ian Smith. Any advice before hand would be appreciated. I assume the corrections he made helped you a bit?
I was also going to ask, as my suspicion is that an injury to the back of my head / neck seemed to start my symptoms, whether anybody has had success from chiropractic techniques in increasing the distance between the stylioid process and C1 and relieving symptoms?
Not sure if any techniques are capable of moving c1 backwards as they are usually attacking you from the posterior.
I ask because it seems to me that I probably had an injury which pushed my C1 closer to the Styloid and started symptoms. Or at least this seems the most logical explanation! I can’t see that the styloids suddenly grew or moved over a week?!
Would say make sure you send him all the imaging you have. Have a detailed log of symptoms and a timeline of how they progressed. But the rest leave up to him to examine you…
Yes i would agree that it is probably not that your styloids grew, but that the jolt to the head has moved C1 relative to the styloid. The thing that I have read many times on this forum is that veins are extremely soft so it doesnt take that much to compress them, whereas arteries are far more stiff. I dont know much on chiropractic techniques, i think it will be a bit more on postural re-education for your neck and head in terms of conservative management. Would not recommend any forceful chiropractic technique, when your styloids are long there is a risk of dissecting the carotid artery - which is a quick fire way to a stroke (not to scare you though!)
When he adjust my atlas, my symptoms pf eagles reduce drastically. Infact i believe with a well aligned c1, my eagles may not be too symptomatic.
How misaligned is your atlas, is it just a minor rotation? So when you get adjusted it relieves pressure from the IJV it is squashing? Or is it an improvement in cervical lordosis that pulls the atlas back?
The adjustment puts my atlas back in place and this leads to less pressure on the styloids and cranial structures. When i am out of alignment, my symptoms are worst, tinnitus is very loud, neck pain is more, etc.
So adjustment relieves the pressure on nearby structures in effect. It also aligns my whole spine, i can tell when i am out by my leg lenths for example
That’s really interesting. I was hoping to hear that! I just couldnt understand how the eagles syndrome could suddenly appear after a trauma, but I think that proves that the C1 as the moveable object is the cause. And good to know he can align you to reduce symptoms… May I ask, how many times have you needed adjustments and how long do they last? I know it can be different for everyone.
I asked Topchiro about this issue, and asked whether there was any techniques to move C1 backwards and this was their response…
"The C1 misaligns in 3 directions. However, the anterior aspect of that is addressed via a seemingly “posterior” adjustment. In fact, when you turn your head to the side to get adjusted the atlas rotates and slides up via paradoxical motion. This allows the chiropractor to then contact the atlas behind the ear and move it down and along its condyle to where it should be. The biomechanics of this can be rather hard to wrap your head around, but the patient positioning, contact and inferior and medial thrust move an anterior atlas posterior and not more anterior. "
Interesting info, @Warrick. Thank you for posting it.
Hi all, just posting an update.
So I have been taking eliquis / apixaben now for two weeks and have seen a steady improvement in almost all of my symptoms. Nothing has gone away, but I would say my head pressure and dizziness as 30% better, and my tinnitus and vision symptoms maybe 20% improved. Iit was interesting as I noticed maybe a 10% improvement within a day of starting and then gradual improvement there after. I feel like I have much more energy and have been able to do alot more which is great.
I also take Gingko Biloba, and I had thought that this helped a small amount maybe 5%, but not too sure of the science behind it? Supposedly improves blood flow to brain, so I assume that means it also improves blood outflow from the brain too!? I would be interested to know if anybody else has tried Gingko Biloba and whether they noticed a difference.
I’ve been to Dr Iain Smith at Newport chiropractic, and he had some interesting insight. He suspected a misalignment of c1-c2, as I had neurological symptoms in my arms and legs (although these have subsided more of late, I was getting pins and needles in my left arm and leg. He also found some weakness in my leg and my thumb and forefinger grip which he was able to improve with manipulation of my neck up and to the side, but also with movement of my bite / jaw. He also noted some straightening of lordosis.
He therefore suggested I get a correction via Atlas orthogonal. He also commented on my C1- styloid gaps being ‘tight’ and said this may warrant dedicated imaging. My worry is whether an atlas correction risks moving C1 even closer to the Styloid process.
Also had an NHS cervical spine MRI with nothing remarkable noted other than slight dehydration of some disks.
Have an audiology Balance assessment today, which I see as a gatekeeper to accessing a consultant ENT via nhs so another hurdle.
Great that the eliquis is helping!
Interesting Dr Smith’s assessment, altering C1 might narrow the gap but worth trying ? If you do get more imaging then it might be easier judge that?
Sounds like it’s been worth seeing Dr Smith, hope the audiology appointment/ testing goes okay…
Prior to an adjustment of your atlas (C1), I would definitely get the “dedicated imaging” that Dr. Smith has suggested. If there’s any risk of that adjustment tightening up the space between styloids & C1 further, it would be a terrible idea to do it. On the other hand, the adjustment might move it further away from your IJV & could help reduce your vascular symptoms. Such a tough call to make but I would err on the side of caution & see what the scan says.
So I had an appointment with Dr Axon today…
For anyone planning to see him I have a few things to note…
He told me very early on that he is not allowed to remove the Styloids for anything other than eagles syndrome, which he catagorises very strictly as some with a stabbing pain under the tongue and in the tonsil area, made worse by swallowing, and a stabbing pain in the back of the jaw up into the ear.
He also said that vascular eagles is very specifically only where the styloid compresses the carotid, and not the jugular vein. He says vascular eagles causes a pulsatile tinnitus which is only a wooshing sound, not anything else. Not a throbbing, not a rhythmic tone, not high pitched, and must be stopped by putting pressure on the neck by the carotids.
My situation of a rythmic high pitched tone which drops in pitch and tone with my pulse doesn’t fit his criteria, nor does my infrequent bursts of throbbing sounds in the ear, or my hearing and feeling my pulse in my ear.
He said in my case, with headache, head pressure, dizziness and fatigue being the primary symptoms, he would not be able to operate on my styloids, even if a CT venogram showed definite compression of the jugular at C1 level. He seemed very convinced I didn’t have eagles. My styloid length of around 3.5 he said was not sufficient to be eagles.
He said they were allowed to do this surgery for around 5 years, but he said that the was stopped by neurosurgery, who didn’t like it, and he admitted that it was “hit and miss” whether it would resolve people’s symptoms, which is why he has now very strict criteria of having either the specific pulsatile tinnitus or eagles syndrome as he catagorises the symptoms.
He seemed quite dismissive of the idea of jugular vein compression by the styloids as a causation of symptoms, claiming that many people show this kind of presentation on CT without symptoms. He said it was more likely the jugular being draped over the top of the C1 transverse process than any compression by the styloid, and that even when CTV shows stenosis or compression of the jugular, it is still very unlikely to be symptomatic, as he says most people are not jugular vein dependent / dominant and have sufficient outflow from the brain without using the jugulars. So even where CTV may show a compression, he would still be very wary of operating.
Alot to digest, and feeling a bit like I am back to square one!
He offered me a CTV all the same, but clearly won’t take the case any further regardless of the report.
Warrick, What a disappointment to wait so long & then be told you wouldn’t be considered for surgery even if the CTV showed venous compression. I’m so sorry for Mr. Axon’s change of heart. I would bet there are more of his patients than he knows of that were incredibly helped by the IJV decompression surgeries he did whether they were caused more by the styloid or more by C-1.
Mr. Hughes would possibly be the best next stop though I am a little unclear at this point whether he is doing anything with C-1 if it’s the causative agent. I know Mr. Timothy does C-1 shaving though. I would hope you could get everything taken care of at once if you do have surgery. 3.5 cm is plenty long enough to be causing ES symptoms. Remember it’s not just length that plays into the styloid causing symptoms. There are other physical features of the bone that need to be considered.
That’s so rough for you! I had bilateral IJV compression from the skull base down by my styloids, which caused IH symptoms, & pulsatile tinnitus- no carotid compression. I had no stabbing pains, I had nerve pain in my jaw & teeth…so by his new criteria I wouldn’t be offered surgery if I’d seen him now! It was about 9 years ago I saw him & had my surgery, he was researching the pulsatile tinnitus then, he straight away offered me surgery after the CT with contrast, & I did a follow-up questionairre in which I stated the massive improvement surgery made to my quality of life, so sad that now members are being denied surgery. I think maybe there were a couple of cases where things were complicated & surgery didn’t resolve everything, so now he’s doing very few…
I’m so sorry for you that he can’t help, but thank you for the update & new info, so at least others won’t waste their time on waiting lists if they don’t have these specific symptoms…Might be worth having the CTV still, at least you could take that to someone else, like Mr Hughes? Mr Timothy doesn’t do styloidectomies, but does do the C1 shave, so it would be helpful for you to see if it’s clear what’s causing the compression, styloid or C1?
Yeah, I thought it was worth flagging it for others too. Luckily I didn’t wait long to see him, I got an appointment the week I booked it. And what I wanted was a CTV which he still offered, so that’s all good. But for others, especially if you don’t have the “classic” eagles symptoms as he described them, or very specific wooshing tinnitus, he will not be able to help.
I will get the CTV done, he said if I got it at spire Cambridge it would probably be Dr Higgins who would do the report which would likely be thorough, and obviously he also had worked with Dr Axon for all the years they were removing styloids for other symptoms so hopefully he may still identify these suspicions? I’ve also been quite interested in Dr Jeffrey Middleton in Fort Lauderdale who has a CTV scanning protocol and does quite thorough analysis and reporting, so will need to make a decision where to go for the scans.
On a side note, I observed that my tinnitus which is mostly a high pitched tone and aura changes to higher and louder when I clench my jaw, so now wondering if maybe the TMJ is involved. Dr Axon said a high pitched tinnitus is always neurological and not vascular. So perhaps separate to the throbbing pulse I feel in my head and fast heart rate!
@Warrick i have the same thing when i do a chin tuck and clench my jaw that my tinnitus gets higher pitch and louder. But i’ve had that for 5 years so i think TMJ and styloid together may cause it.
Good to know Mr Higgins is still involved, I thought one of our members said that he was having a break…he’s very thorough & has written a research paper with Mr Axon.