Scans / I have CCI but do I also have eagles?

[Deanm]

Any help is appreciated
32 year old male father of 3 beautiful children ages 4 and under
Disabled by severe symptoms last 3 months
Seen 15 plus Drs so far confirmed CCI on dmx and waiting to see Dr osbourne in two days to discuss possible Vascular Eagles

Symptoms : extreme head pressure , extreme brain fogs, dizzy off balance feeling, pressure and occasional ear whooshing and occasional face preasure

While a fusion is on the table for CCI I tried stem
Cells and totally made all my neurological symptoms way worse

My right IJV is already a quarter of the size of the left and I wonder if the calcified stylohyiod ligament is sandwiching the IJV with the c1 behind it .. I have instability at c0-c2

Can anyone look at these scans tell me if they are anything

I know Dr osbourne is amazing and can’t wait to see him but don’t want to operate if my issue is CCI and not eagles

This has ruined my life if it was not for my wife and kids I would be suicidal

It’s robbed me of my business my marriage and fatherhood

Praying I get more answers

Also when I did spinal tap my pressure was 23 they say 25 is considered high I think 23 for me is probably elevated

Obviously everyone knows what it’s like to see 15 different drs with no answers

I am seeing CCI specialist at usc August 5th but Monday is Dr osbourne

I don’t want to get my hopes up sadly

How do I upload scans for you all to see ?

Started with extreme headache back of skull and ear whooshing then balance issues and eye tracking issues and nausea and now those have got a bit better and main symptoms are head pressure , dizzy, and bad brain fog

It’s very positional and sensitive to different things
I wonder if the stem cells set me back and when I recover from them I won’t be as bad I’m 16 days post stem cells I do for sure have cci and calcification of stylohyoid but not sure if the eagles is the issue or just plain old cci

I have other symptoms too like random heart racing or skip beats middle of the night or get vibrating in my head neck and calves and anxiety obviously I notice stress makes everything worse

I just don’t know if the compression is only from CCI or eagles or both

I pray it’s only eagle because styloidectomy is better than a fusion

Anytime I do nucca or stem cell
Seems to make my symptoms worse only thing that helps is calming my nervous system or a gentle walk

Can’t wait to be working again providing for my family
Helping ny wife at home
And being an active father again

It’s sad when my kids ask me if I’m feeling better each day I feel like I’m making it hard on everyone I pray and hope for recovery

[TML]

Hi @Deanm. So sorry to hear about your symptoms. I’m experiencing the same, but I couldn’t even imagine going through this and being a father of 3. I’m really glad you are scheduled to see Dr. Osborne. I’m also glad that you did enough research to get the CCI diagnosis - it takes some people years!

I’m pretty good at reading axial slices of CTs. I have annotated your slice at the level of C1.

It appears (at least at the level of C1) the styloids are clear of any important vascular structures. I think the big stand out is how small/compressed your RIGHT IJV is against C1 (CT images are flipped - structures on the left of the image are actually the right side of your body). It looks like your left IJV is your dominant (it looks wider in general). Your right being your smaller and also being compressed against C1 may be explaining your symptoms. Not sure if a styloidectomy would do much here but maybe a C1 shave would be good. Or addressing the C1 instability. The issue is that fusion doesn’t necessarily help IJV compression, unless the vertebrae were to be wiggled slightly back before fusion. Dr. Osborne will be well suited here I think to discuss the IJV stuff. Not sure if the pockets of calcified stylohyoid ligaments you have pointed to in the 3D models is compressing anything or not. Is there anything that seems to make your symptoms worse? Like turning the head, swallowing, laying down?

I suspect that your right vagus nerve is getting compressed between your right IJV and C1, which would explain the rapid changes in HR. I get the vibration stuff too and I think it is a cascade effect of vagus making it’s way down the body from C1 irritation. Is the vibrations worse on your right side (your right calf)?

Would you be able to take a screen shot in the axial view of your hyoid (throat) bone? Sometimes it can dig into arteries/veins too.

[Isaiah_40_31]

@Deanm - I’m so sorry about your situation. There is definitely hope for your symptoms to subside once your IJV)s are more fully functional again.

I believe the symptoms you mentioned are predominantly related to IJV compression & as @TML mentioned also your vagus nerve. I can’t tell for sure whether or not your styloids are involved but the transverse process(es) of C1 definitely is. I expect Dr. Osborne will be very helpful in letting you know to what extent your styloids & sections of calcified stylohyoid ligaments are contributing to your symptoms.

Dr. Nakaji in Scottsdale, AZ, would be the best surgeon to help with the vascular decompression. He is a neurosurgeon & very experienced w/ IJV decompression surgeries. He is also not a fan of cervical fusions so may be able to offer you alternatives or that may not be necessary once you’ve had your IJV(s) decompressed.

[Deanm]

Thank you so much

Not sure to be honest how to find the hyoid image you’re talking about.

Sitting down or looking down
Turning head makes it worse
Bending forward makes it way worse
Looking up makes it worse
Standing after sitting a while makes it worse

And certain positions in bed

Only way to lay without pain is usually on a down feather pillow on my left side for the most part

I will see what Dr osbourne says

I’m seeing Dr Jeffrey Wang at usc head of the cranial cervical department on August 5th

I am doing PRI which is a very cool postural therapy that gives minor relief and Nucca which I’m not sure if it’s doing anything often times I feel worse after Nucca

My wife wants me to just get a fusion asap but I want the best outcome with the least recovery needed

I think all my symptoms are from IJV compression or and vagus nerve irritation

[Deanm]

USC has a great vascular surgeon I’ll probably go and see as well Dr Arun Paul Amar

Maybe at usc him and Dr Jeffrey Wang can work as a team on me

[Deanm]

Don’t suspect it is the styloid but I think maybe the stylohyiod ligament in front of the IJV or just c1 alone

[Deanm]

Is that the hyoid ?

[Deanm]

Let me know if these help at all

[KyleNeedsHelp]

You sounds just like me. Same age and everything besides having kids. The fog has taken everything from me. I had the bilateral styloidecomy 5 weeks ago, and still feel terrible. Unfortunately fusion isn’t on the table. It’s so expensive. I’m able to see basilar invagination and brainstem compression on my scans. But I don’t know how to get it diagnosed or treated. Can’t afford anything anymore. Just rotting in a homeless shelter in NC. I don’t know what to do.

Do you have squirting noises? Have you done an MRI? I beleive this is one of the worst things that can happen to someone. I’m so sorry.

[Isaiah_40_31]

@Deanm - You may find that the doctors at USC have not dealt with IJV compression as it’s manifesting in you. Many of the very notable hospitals & surgeons in the US have no clue about ES or about its vascular version involving the IJV. Stanford University Hospital is the only one I know of where there is a surgeon who does these surgeries. I didn’t suggest him because he’s booking into next year at this point & hasn’t been doing these surgeries for as long as Dr. Nakaji & several other doctors whose names I can give you if you’re interested.

It’s very critical to see a surgeon or team of surgeons who have done many IJV decompression surgeries. If the USC docs you mentioned haven’t done this sort of surgery or haven’t dealt with shaving the C1 vertebra, I urge you to consider seeing someone who has done many of these surgeries successfully like Dr. Nakaji, to whom I’ve referred you. You don’t want to go through this type of surgery more than once on one side.

In the image below you can see that your IJV is being compressed by C1, but it looks squashed from both sides though I can’t tell what is compressing it opposite C1. Soft tissues can be at play in some cases such as a nerve, other vascular tissue, muscle, scar tissue, lymph nodes, etc.

In this image, it appears your R IJV also has compression lower down that may be caused by your internal carotid artery. The L IJV also has what looks like lower compression opposite where it is on the right side but I can’t see any cause for it. These are things Dr. Osborne should be able to help decipher. Your right styloid looks to be normal length & I can’t see the left one, but you’re correct, the 2 sections of calcified ligament could be assisting w/ compression.

Regarding your hyoid bone, it’s visible from the front (I labeled it), but if you could post a 3D view from the side it would be most helpful.

[Isaiah_40_31]

@KyleNeedsHelp - Have you asked Dr. Hackman for a referral to someone who may be able to help you with what you’re seeing in the scans you posted? Since you have Medicaid, you shouldn’t be turned away from any major hospital, & there must be surgeons who accept Medicaid and can help you. I feel confident that you can get help with your remaining problems without a huge financial outlay on your part.

Dr. Patsalides in New York is one doctor who I believe deals w/ “brain sag”/Chiari. I know that would require that you travel again for which I’m sorry.

You are still in early recovery from your bilateral ES surgery so some symptoms are likely to improve as more time passes, however, with your new findings, you may need another surgery to get the best results.

Athos Patsalides, MD, MPH | Northwell Health

[TML]

@Deanm this is your thyroid cartilage. The hyoid is just a bit higher and looks more like a horseshoe shape! However, it does seem that the right ride of your thyroid cartilage is compressing something as you’ve pointed at it. I’m just not sure which vein/artery thar is because there’s nothing for me to confidently match it with on the other side. Can you upload 3D images of your full right and left sides of your scans (just like you did of your front)?

[Chrickychricky]

@Deanm I agree with what everyone is saying…looks like you really need to speak with a neurosurgeon such as Dr. Nakaji. Fusing the spine is a drastic, permanent decision that often creates other problems down the line. So a choice of last resort. Maybe after decompression surgery you will feel so much relief that you won’t need it. Wishing you the best on this difficult journey. You are not alone. Keep us posted on your progress.

[Jules]

I agree with what the others have said, that it does seem as if the C1 is causing compression- it will be good to hear what Dr Osborne says, but he doesn’t do C1 shaves, so if it does look as if the C1 is more involved than the styloids/ calcified ligaments then surgery might not help. I had similar symptoms to you with the head pressure, feeling off balance, brain fog, dizziness, pulsatile tinnitus, & had bilateral IJV compression just from the styloids, so a styloidectomy helped me. It does sound as if the vagus nerve is causing issues too, it’s next to the IJVs so quite likely to be compressed too…
Some doctors believe that a C1 shave can make instability worse, & some members have found that, but others haven’t . Equally fusion can alter the position of the neck structures and can make compression of blood vessels worse, so it is a hard decision, but I think if you can get some other expert opinions it will help. Dr Nakaji has done successful surgeries & is very knowledgeable about vascular ES, so would be good to hear his opinion, & to ask him about the CCI as well.
Let us know what Dr Osborne says about your images, best wishes & hugs to you struggling with family life

[Deanm]

Did you have any c1 involvement or just the styloids?

Anyone know about the Dr Nakaji how he works with insurance and how far out he schedules and if he consults remotely ?

Thank you

Obviously I want to be seen by the best person possible

[Jules]

No, my C1 wasn’t involved at all, I was lucky. There have been a few posts about members who’ve had insurance issues but that seems to be being out of network/ state. I thought Dr Nakaji did remote consults but I might be wrong, hopefully others who’ve seen him can let you know about this- @Chrickychricky has had 2 surgeries with him.

[Chrickychricky]

No remote consults for Dr Nakaji. But Dr. Costantino does them.

[Jules]

Thanks @Chrickychricky for the info

[Isaiah_40_31]

Other doctors you can consider, @Deanm, are Dr. Costantino in NY, Dr. Cognetti in PA, & Dr. Hepworth in CO. Dr. Cognetti is booked into next year, & Dr. Hepworth to at least the end of this year for an initial consult. The doctors who are booked out so far do many other types of surgeries &/or don’t make ES surgeries a priority in their practices even though they have lots of experience doing them. They focus on their cancer patients or other ENT problems. Drs. Costantino & Nakaji give vascular ES patients more of a priority in their practices.

[Deanm]

Does anyone with CCI who have had my same issues had any success with c1 shave ? anyway I can talk to them ?