Please tell me your experience? I’m about to get bilaterial C1 shaving and styloidectomy for IJV compression. But I’m reading a lot of scary things about it leading to craniocervical instability. Please help
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A C1 shave typically doesn’t cause CCI. For people who have CCI going into surgery there is a question as to whether shaving C1 can make the cervical instability worse or not.
Food for thought - your entire spine is supported by tendons & ligaments that hold the vertebrae together then the whole spine is tightly surrounded by stabilizing muscles. Having C1 shaved doesn’t remove any of that spinal support which is why I & numerous doctors believe that the benefits of shaving C1 a bit to make more room for the IJV(s) outweigh the risks.
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Thank you so much I really appreciate your reply. I don’t currently had CCI or at least I don’t think so but my Neuro (not the neuro doing my surgery) said she thinks I have EDS do to many things I mentioned to her (joints hurting, joint instability, medicine sensitivity, stretchy skin… I haven’t been tested yet) but I have been reading that CCI and EDS do go hand in hand and the things I’ve read about why you shouldn’t shave the C1 transverse process are scaring me. My compression is do solely to the C1 transverse process so I’m like what the heck do i do now?! Just looking for reassurance that everything is going to be okay. I’m stressing
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I have hEDS with 9/9 on the Beighton scale (high hypermobility), but I have minimal/no CCI according to a DMX scan which is regarded as the gold standard for diagnosing instability. So it’s possible to have hEDS and no CCI! However, I agree that the small risk of worsening existing CCI is worth it for the benefits of decompression if your symptoms are severe. Definitely confirm that your symptoms are coming from compression, then make a decision based on what you think is best for your situation.
I have read about a few cases of people who had CCI and IJVC - they usually do the decompression first and then treat the CCI (whether that’s with a fusion or something more conservative). So it is possible to have and treat both. If you have the ability, it might be good to get evaluated for CCI as a part of this process so you can come up with a plan.
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Yes my symptoms from compression are very severe. I don’t think I’m going to have time to get tested for EDS and CCI before my surgery on May 11 but I will try. I feel like I would know if I had CCI though. I do think that I need to tackle this decompression first, this has all been a 14 month debilitating nightmare that I can look back on and realize it all started years ago but got significantly worse 14 months ago and just keeps getting worse.thank you so much for taking time to write me
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I empathize with you completely, I have severe bilateral compression, and the last 2 years have been absolutely miserable and debilitating, though in hindsight I’ve had some minor symptoms since childhood. My first surgery is today, and I’m really hoping it helps because I don’t know what I’ll do if it doesn’t. I wanted to get a second opinion but I can’t wait any longer because my symptoms get worse every day also. I was lucky to have someone who could evaluate me for CCI in my state, so I was able to get checked for that last month. Best of luck with surgery and I hope you get some of your life back!
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Both Dr. Kamran Aghayev and Dr. Peter Costantino swear to the fact that the C1 is the most important part to resect in this surgery.
Good luck! We’ll all be rooting for you. It will be over before you know it. 
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Wishing you the best of luck on your surgery! Update us later
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This makes me feel much better. Thank you
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I can completely understand your concerns, so hopefully the others have helped ease those a bit! One of our members, @PatientD gave this advice for a quick check you can do for CCI at home, it might help put your mind at rest:
‘On instability topic, here are my practical tests to check yourself. Look in mirror - is your head slightly tilted to one side, is one shoulder higher than the other, if so is the hip higher on one side than other (put hands on hips), is one leg slightly shorter than other - get friend or family to help - wear flat shoes - lie flat- have companion put your heels together. If one heel is slightly shorter than other they can see that & tell you. If you have many of these characteristics this may suggest you have instability issue. Our brains keep our eyes even with the horizon & will alter body below in order to do that.’
There has been some discussion about long term and cognitive effects of intracranial hypertension , so as @carina says it’s worth the risk for the benefits of decompression…
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I believe I have CCI after all these tests. Now I find myself not knowing which to tackle first, the CCI or the C1 shaving for IJV decompression. Ugh the problems just keep coming and coming and my IJV surgery is in 2 weeks so idk what to do. I’m afraid that’s going to make my CCI even worse and then more problems stem from that. Please help if anyone has advice
Addressing the problems from the top down has been mentioned by Dr. Hepworth as being the best course of action. He’s been doing IJV decompression since prior to 2015 so is quite experienced w/ both patients w/ CCI & w/o. Following those instructions, @Burton35o, you’d start w/ your IJV decompression then work on the CCI which can be helped by a knowledgeable PT i.e. surgery isn’t always necessary, but in extreme cases, fusion of the unstable vertebrae is helpful.
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Again, thank you so much. How do you stay on top of all my questions and concerns lol. There’s a special place for people like you. Thanks again
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Since there is sometimes a long wait for our members to get replies (@Jules is in the UK, & I’m in the US so we are on here kind of opposite hours during the day which provides better overall coverage), I spend as much time as necessary on the forum as needed in order to try to answer or respond to what’s come up since I was last here. It’s important to both Jules & me, to attempt to answer questions & provide help & reassurance for concerns daily for each one of our members who’s posted. We received that sort of help when we were where you are now so we’re simply paying it forward. 
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You both do an incredible job and we all thank both of you for your services 
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Good afternoon. How can I get an online consultation with Dr. Costagno online? and how much does it cost?
I’m sorry that you’ve been more confused by the info about tests, I was hoping that would put your mind at rest! Your IJVs are significantly compressed, so it does sound as if they really do need decompressing, you must be feeling pretty rough… It’s not a surgery that doctors will agree to if it’s not needed…
Praying that you’ll feel peace about the decision to have the surgery
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You can email Shantel who is Dr. Costantino’s medical assistant & who schedules his appointments:
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Good morning, I had a posterior fusion of c1/2 for AAI and arthritis. It’s a brutal operation with a long recovery. My Eagle symptoms have all but disappeared - severe ear pain, jaw and throat pain, terrible pressure headaches, severe fatigue, brain fog. I’m 10 weeks post op and still in a hard collar which is not great, back of my head is numb (unlikely to improve now), but whatever that small shift in position was, it’s helped! That tiny shave of C1 might just be enough to clear most of your symptoms, when symptoms totally debilitate, it’s a point of no return, good luck xx
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I’m glad that the fusion has helped your ES symptoms @Mcwelly , a shame you’ve had to wait so long, & it sounds like a really tough surgery to have to go through 
We have had members who’ve had numbness after a styloidectomy which has still improved after a year, so you could still see an improvement in the (presumably) occipital nerve , although I guess that you’d accept the numbness over the ES pain if it doesn’t improve…
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