thank you Jules….nice to have you all on the journey…
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I didn’t needed a c1 shave but Liu cut into the front of my neck not behind my ear.
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@Gaby - Your incision will likely become barely visible once it’s fully healed. Interesting though that Dr. Liu cut into the front of your neck vs the side or behind your ear.
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Hi! Just found this thread and wanted to get your thoughts! I do have CCI and slight Chiari (4mm overhang). They think I can avoid Chiari decompression by reducing the vascular compression. I’m booked with Dr. constantino for my Eagle’s, but now worried if this more aggressive approach will just worsen my CCI issues in cars and trains especially… Is there any guidance on how to talk to Dr Constantino about this? I do want the minimal instability possible.
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Who have you see for the Chiari diagnosis? Unfortunately there’s no consensus with how a styloidectomy & C1 shave affects CCI, doctors don’t agree and experiences from members vary too… I don’t think that any ligaments are detached with a C1 shave, here’s one discussion:
C1 shave- Lateral Altanto Occipital Ligament - Welcome / New User Help - Living with Eagle
You could raise your worries with Dr Costantino, and ask for the minimum to be removed to make space for the IJV… Do you have a date for your surgery?
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Everyone is different but I wanted to give a heads up - I do not have CCI, but I just had a unilateral decompression with Dr C last week, and my head feels SO unstable since then. I am not saying that my surgery caused or worsened CCI as I agree with his reasoning that it doesn’t have a significant impact on the stabilizing structures themselves. However, I think the trauma from the surgery has temporarily caused the muscles in that part of my neck to weaken or go offline because I can’t even move or pick up my head without using my hands to help and it is extremely painful. I trust that this will get better with time, and from what I’ve read, I can’t find anyone else who has had this experience, but I wanted to give the heads up that it may feel worse before it gets better. The number one thing that has helped me with this is wearing my Aspen collar, especially when riding in a vehicle. Also avoiding laying down at all costs - not only does it make the pain/pressure worse, but I cannot get back up own my own because I can’t lift my head. I have been using a stack of pillows to sleep sitting up at a near 90 degree angle. Again everyone is unique and you may not have this experience, but I wanted to share in case it helps
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Thanks so much Carina for replying!! I’m so sorry to hear about this, that sounds soo painful! I’ll be thinking of your recovery, please let us know how you are feeling next week and the week after! That’s exactly what I’m afraid of, so it’s scary you had this happen but I really am hoping it’s just the swelling post surgery and you feel amazing soon
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@azapppp - @Jules & @carina have given you really good information. I think the key thing is to let Dr. Costantino know you’re very concerned about an aggressive C1 shave (Dr. Tobias usually removes the whole transverse process from what we understand), & ask if he’d be willing to allow Dr. Tobias to shave C1 as minimally as necessary to allow your IJV to open.
We have had a few other members mention the sensation of head heaviness post op, & that feeling has resolved over time as the post op inflammation has gone down. I think Carina’s suggestion about using a soft neck collar for a short time post op is very helpful. I mentioned for a short time because the healing neck muscles can become dependent on the support the collar provides which reduces neck muscle strength & thus neck stability.
I hope you’re able to avoid a surgery for your Chiari by just having the styloidectomy/IJV decompression. I hope for that for you!
Please do let us know your surgery date. @Jules & I like to pray for our members on & around their surgeries.
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Nakaji doesn’t phrase it in this way when explaining, but I’d imagine he does this. He was explaining that the carotid and various other structures are wrapped up in a bundle called the carotid sheath, and he releases this and bits of the fascia and muscle around it if its likely to cause compression.
I would guess the difference between the named procedure and what’s being described isn’t much, if anything I’d guess that’s just the official name. Maybe there’s a difference in doing only whats required to perform the surgery vs doing extra to release the jugular/carotid etc.
My recovery has been consistent, but long. I had the right side surgery in October, and I’m greatly improved with some transient numbness and nerve pain. I had the left side in February, and I still have a fair bit more muscular pain there.
It takes quite a while, but my right side, which was the more serious side, is nearly completely better.
I’d say by the one year mark it’s likely that healing will be entirely there, but we’ll see.
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@jalexy12 - Thank you for your encouraging update. I had a similar experience with non-vascular ES recovery, too. It did take close to a year for my symptoms to really go away. It’s been 11.5 yrs since my first surgery & 10.75 since my second one. I still have a little nerve twinge here & there, but they’re nothing compared to my original symptoms. I’m happy to know that your body is recovering well.
I believe that IJV decompression approaches are still a bit on the experimental side for the surgeons doing them. There seem to be several different strategies being taken currently. I’m glad the way Dr. Nakaji does his surgeries worked well for you!
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Don’t have much to add about CCI. But just wanted to say that I’ve spoken with Dr. Nakaji about a concurrent finding of Chiari Malformation (I have an 11mm tonsillar herniation). He also does Chiari surgeries but in every case he says he checks for jugular compression first because he is suspicious that the actual culprit is actually the jugular compression which raises intracranial pressure and may actually be the “squeeze” that forces the brain into a “droopy” position. The other issue with doing a Chiari decompression first is that it is a craniotomy and literally removes a portion of the back of the skull. The problem is that this removes any collateral veins that have taken on the compensatory role for the compressed IJVs, thus leaving such patients with little compensatory drainage on top of their compressed IJVs. This isn’t to say that Chiari decompression isn’t successful for many patients, but just be vigilant about the steps that may need to be taken first.
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This is excellent information @RobotEagle. Thank you for sharing it.
Thank you for letting us know that @RobotEagle , that’s really interesting and helpful!
@jalexy12 I’m glad that your surgery has helped, even if recovery has taken a long time! Thank you for coming back on to encourage others 
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Oh yeah, I wasn’t even considering what Nataki might be doing. He had his staff tell me that I “had no signs of venous obstruction” which was pretty patently absurd given the situation. However, I’ve since learned that many other eagles patients who contact his office are told the same thing in spite of having obstruction and compression. Anyway, I’m glad the decompressions have helped you so far and I agree that the healing process from these procedures seems to be a long process.
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