I have attached the 3D renderings from my husband’s CT scan. All thoughts and comments are welcome and most appreciated. I am especially confused looking at the veins and potential compression. I can upload more photos if there are angles missing that would be useful.
Some background
The radiologist reported the right side at 6cm and the left at 5cm. The hyoid bone was reported as normal.
During a recent trip to Türkiye, he saw two ENT surgeons and a neurologist. All agree he presents as having ES and recommended surgery. We are moderately skeptical of a capitalist pay-to-play medical system, so we are proceeding with caution. We’re from Canada, and although we know his options are limited here, he wants additional medical options before proceeding with the surgery (out of the country). He’s booked for a DMX scan in a couple of weeks to rule in/out CCI or other complications, and is considering an atlas adjustment (if necessary).
His symptoms are bilateral and go back many years (~10). Only now are we considering that ES could be the thread weaving this story together. The list of symptoms is quite exhaustive and as a combination of classic ES and VES.
facial nerve pain
pain when swallowing
sensation of being strangled
feeling something is stuck in his throat
constant headache (stressing constant)
tinnitus
TMD (had complete dental restoration)
vision problems
dizziness
fullness in ears
fatigue/pain during/after chewing
neck pain, pain on cervical rotation
feeling like head is too heaving for the neck
numbness in tip of tongue
horseness of voice, vocal fatigue
previously GI issues include delayed gastro-emptying
He’s had botox in the mandibular muscles and nerve blocks with limited results. He also has long covid (march 2020) and was diagnosed with chronic fatigue syndrome, He has developed polyneuropathy and takes pregablin/tegretol. ES could be contributing factors to this (VES could help explain the chronic fatigue).
Looking forward to hearing your thoughts and opinions. Thanks as always.
Hi. Those are some significant styloids. I believe other members on the forum have traveled to Turkey for treatment, especially those in the EU. There are about 10 doctors on the Dr list for Canada. There are also great US doctors to possibly speak with.
Totally understandable about symptoms going on a long time before learning about ES and how it might tie it all together. The long symptom list is really relatable. The good news is that getting the right surgery done, styloid removal and possibly IJV decompression usually makes a dramatic improvement in quality of life.
For your photos, you may try zooming in or rotating a bit more. It is difficult to see the IJV because it is blocked by those little blood vessels. The jugular can be compressed just by the styloid, just by the C1, or pinched between them.
Looks to me like very significant compression of the IJVs between the styloids & the C1 processes, one of the smallest gaps between them I can recall seeing, & especially to have that both sides is unusual, so not surprising that he’s feeling rough!
I’m not tech savvy I’m afraid so can’t annotate the images for you to show you… as @Andy89316 says there are some other smaller blood vessels being pinched too, can’t comment on which ones they are, I’m not knowledgeable enough I’m afraid!
Certainly worth pursuing a surgeon who specialises in vascular ES though- hopefully the Canadian members can give you info, but off the top of my head I can’t think of any in Canada who could tackle this, as it seems likely your husband might need a C1 shave and maybe ballooning the IJVs. If you were able to afford treatment in the US, Dr Cognetti in PA seems more reasonably priced than some of the doctors, & I believe he’s now working with a Dr Heller to do C1 shaves , a few Canadian members have been to see him. Dr Hepworth in CO is a very good vascular ES surgeon too, and Dr Nakaji seems excellent too, in AZ, maybe easier for you to get to?
Here’s a link to the doctors list to save you hunting round for it… Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
Good luck with your journey
Msk neurology has a video on youtube about he had chronic fatigue syndrome because of how he was holding his head. This is for someone with normal styloids (at least i think so). He thoroughly explained the issue and it made sense.
Then factor in huge styloids and it is almost like how are we as patients even able to survive life. Some are much more lucky than others.
If you go view that video it might help a little in terms of neck position.
Your comment about pay to play is interesting to see different viewpoints. for example, as an american i look at NHS and am thankful i dont have the issues that patients seem to battle with that system.
But there are plenty of issues in the pay to play market as you call it in America.
In the end, the patients have to go where they feel they can get the best care within their budget.
@Andy89316, @Jules and @JugularEagle, many thanks for your comments and advice! Much appreciated. I was able to zoom in a bit more between the C1 and styloids. I pulled a posterior photo as well as it seems his atlas could be shifted ever so slightly on the left side. He’s hearing a crunching noise in his neck and this causes him concern for CCI (which again, we’re hoping to rule out with the DMX on October 25).
@Andy89316, I read your recent thread about the styloids maybe being linked to severe TMD. It’s the same in JC’s case. He’s had severe TMD for 10-15 years and his clenching is not remedied with botox or appliances. He’s currently wearing a sleep apnea appliance which is designed to push out the jaw and we’re round tabling if this could have contributed to the styloid growth. Good luck with your upcoming styloidectomy and other surgeries!
@Jules thank you for the recommendations for doctors. We are considering a trip down south, but without any coverage it is a very expensive endeavour. Plus with his TMD and bilateral symptoms, it may make sense to have both removed at once and that isn’t common practice in the US (knowing that recovery is more difficult). I suspect if he had one side removed then the other would quickly escalate in severity. If you, or anyone else, have comments on that subject I would love to hear them.
@JugularEagle I am going to search the video right now. I have read some literature about this, and it is very interesting. I have also heard of people with atlas adjustments who have CF/MES relief, although in the CT it looks at though JC’s atlas is pretty normal (I could be wrong). And ultimately our socialist system isn’t anything spectacular either. It’s strife with problems, limited access, long waitlists, etc. If we had better access then perhaps it wouldn’t have taken so long for a diagnosis. Who knows. I am thankful there is now an avenue to explore and that we have the resources to make choices that will hopefully aide in his recovery.
@Jules
This might be a rudimentary question… but if the styloid is removed then why would a C1 shave also be necessary? I know this is a somewhat common practice but I’m not sure that I fully understand why. Wouldn’t the removal of styloids allow the nerves/IJV/etc. enough room to maneuver? Thanks again for your wisdom.
There is an interesting post you might want to read as it pertains to all of this by user Thans. I don’t know how to correctly link it so you might have to go to the thread to read the whole post
My neuro PT had an interesting observation. Some background: I had the Vestibular test where they put the goggles on you. I can’t remember exactly what happened just that when she told me she was centering me I said “are you sure that is center?”. It did not feel center.
When the PT was looking at me she said my face is off center when looking at her. She theorized it could be because of my styloids. At that point we didn’t know my right styloid is the bigger issue. When looking at her my face is off center to the left. So the theory would mean my body was adjusting to the issue without me realizing it.
She had me do a test where I was standing on a cushion she had me look center, move my head to the left and come back center with the laser on my head with eyes closed. I was off the same amount every time.
The only way I could hit that target was to calculate in my head how far off center I was and readjust. I can’t remember if she had me look right. She probably did. I don’t remember the result. I would guess likely the same issue but maybe not. I am going to try to recreate it.
She said there is a disconnect with my brain and my neck sensors.
I believe all of this relates some how to this whole issue but not smart enough to know exactly how.
@Val7426 - Your husband’s cervical vertebrae are very straight. He’s lost his cervical lordotic curve. We see this very often in people who have ES. Losing the cervical curve is indicative of poor posture which can be the result of years of looking down at a computer screen, cell phone, books, etc. It can also be indicative of forward head posture which means the head isn’t centered over the shoulders but sits slightly in front of them (see the image on the left in the video link @JugularEagle posted) which puts stress on the shoulders & upper back & causes the shoulders to roll forward a bit also causing weakening of the chest muscles. This is called upper cross syndrome which in turn can lead to lower cross syndrome. There is a lot about these on YouTube including exercises to help recover from them. There are simple exercises to help restore the lordotic curve in the neck as well though it takes some time. A straight neck potentially puts the styloids in closer proximity to the nerves & vascular tissues in their local area. @vdm put together a couple of very informative discussions covering this & other topics:
Your husband’s styloids are significantly long & do appear to be squashing his IJVs against the transverse processes of his C1 vertebra. Re: your question:
Often a C1 shave isn’t necessary once the styloid(s) is/are removed, however, sometimes the IJV(s) don’t reopen when the pressure from the styloid is removed as the pressure from the TP of C1 is still significant enough to keep the IJV pinched. Another scenario is the styloid is compressing the IJV close enough to the skull base that the surgeon isn’t willing to cut the sytloid back that far due to the risk of facial or other nerve injury so the answer is to shave a little off C1 to make more space for the IJV to reopen. Dr. Hepworth used to move the IJV away from C1 a bit vs shaving it, but it seems more often now, he shaves C1.
We have one doctor in the US who does bilateral ES surgeries routinely - Dr. Hackman in Chapel Hill, NC, however, he doesn’t specifically do IJV decompression surgery. If the IJV decompresses when the styloid is removed then it does. If it doesn’t then the patient will have to see a surgeon who does IJV decompression for another round of surgeries later. Dr. Hackman is also quite pricy even for cash paying patients. Dr. Cognetti who @Jules mentioned has started doing IJV decompression surgeries w/ Dr. Heller, but I believe all of those surgeries include a C1 shave. Dr. Cognetti’s fee for international patients is around $8K, however, Dr. Heller’s fee is higher so the combined cost is fairly expensive. Also Dr. Cognetti traditionally only does unilateral surgery so your husband would have to come twice.
@Isaiah_40_31, I could kiss you right now! Thank you so much! There’s a lot of information to process in your post and I’ll be in touch if there are any questions. Thank you again for sharing your wisdom with the rest of us.
The C1 shave + styloidectomy seems to be necessary for quite a few of our ES members unfortunately- I just had the styloids removed & it was enough to re-open the IJV, even just having the first side done made a big difference to my symptoms, but I’m realising more & more now how lucky I was! You would think that by removing the styloid it would give enough space for the IJV to open up but it’s not always the case, I guess we have to remember that on the CTs we can’t see nerves or muscles in the area and sometimes they can play a part in compression too…It looks from your husband’s CT images as if the C1 process is very close to the mastoid process (it may just be the angle of the image, or it could be that the atlas is tilted as you thought), so it could be that there’s compression in that area too, it’s certainly worth asking a doctor about when you consult anyone else.
Re whether symptoms ramp up between first & second surgeries, that does seem to be quite common, but it is a big surgery & many doctors don’t like to do both sides at the same time because of swelling. Dr Hackman is doing this routinely though as @Isaiah_40_31 mentioned, & many members have seen him for surgery & done okay.
@ Jules, thank you for taking the time to respond again. Your explanation makes a lot of sense. I will look into Dr. Hackman. A local doctor in Vancouver, BC has published on his successful ES operation so we’re going to explore getting a consult with him. His name is Dr. Jowl Howlett and he is a UBC researcher and ENT surgeon.
I am going to give you a link that I found on Facebook’s Eagle Group. One of of the best articles I have seen that a patient can understand. You might find some things you can highlight to get your point across to Doctors who aren’t listening. One patient had all her teeth removed. I can relate. One of my big issues is feeling like I have a rotten molar. This is why I found out the issue. Dr. Garrett Fiorenza in Indianapolis, IN knew exactly what the issue was. I don’t know why I picked him out of all the dentists in town but I was so fortunate that I did. By the way, note that a toothpaste company, Colgate, is at least putting up information about ES.
Thank you for sharing the information about Dr. Howlett, @Val7426. We’ve known of no doctors in BC who’ve done successful ES surgeries. The few of our BC members who had surgery there had to come to the US for revision surgeries later. I don’t know which surgeon(s) did their styloidectomies though.
It is important for your husband to see someone who is aware of IJV compression & is experienced with the surgery to correct it. @Chrickychricky just had her second surgery w/ Dr. Nakaji in Phoenix, AZ, & posted some very good information re: vascular decompression surgeries. You may need to scroll down to lower in the discussion to find her posts from today:
