Question About C1 Shave

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Hello everyone, it’s been a couple of months since my last post. I was pretty traumatized by the whole debacle last year and just didn’t want to talk about it anymore.

So, I contacted the Cleveland Clinic in Ohio, where I traveled just before Christmas, to see Dr. Brandon Prendes. A week before surgery was scheduled, it was canceled. Cleveland Clinic knew I was a self-pay and indicated I would receive a 30% discount if insurance wasn’t going to cover the procedure. But then, they reversed course and cited some sad excuse about why the procedure couldn’t be performed there. In the end, it was for the best, divine intervention really, because Dr. Prendes doesn’t put much stock in vascular Eagle. I was just desperate enough to have him, anybody, do the surgery anyway.

Moving on…I found a local doctor. Again, I just want this styloid GONE. The doctor is a well respected head and neck surgeon, who, unlike Prendes, is of the opinion that VES is, in fact, very real. He has no doubt about my symptoms and diagnosis. He reviewed my medical history and all the imaging prior to my arrival, and then patiently listened as I went through the rundown of who, what, where, when.

So, here’s the thing, he hasn’t done the volume of surgeries that the other doctors have, e.g. Hackman, Hepworth, and C. However, with over 30 years of practice under his belt, he is the director of head and neck surgery at one of the local cancer institutes here in town. And to my surprise, he informed me that his son, who recently returned home to join the practice, did his residency and fellowship in North Carolina with Dr. Hackman. I definitely was not expecting that, but was/am very glad to know there is at least a local connection. Granted, he’s not Dr. Hackman in the flesh, but at least he’s trained with one of the best and has brought that training home with him.

Because the doctor doesn’t have the same extensive experience treating VES as the others I’ve mentioned, he is typically more conservative in his treatment, meaning he removes the styloid and makes sure the IJV is open and patent while also monitoring the cranial nerves. Shaving the C1 and removing the digastric muscle is not something that he has recommended or done as part of the procedure. He did say that he wouldn’t rule out a C1 shave, but added that it is something that another surgeon would have to do.

We left it that he would do some research on the C1 shave and consult with the other surgeons in his practice. Neither of us is keen on removing the digastric muscle. I am scheduled to return to see him next week. In the meantime, I’m just wondering though how crucial it is to shave the C1 in cases of VES. If anyone on the forum would help to enlighten me, I’d deeply appreciate it. Thank you.

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I’m glad that you’ve found another doctor; if he’s a head and neck surgeon that’s great as he’ll be used to operating in the styloid area even if he’s not done as many styloidectomies… Unfortunately we can’t say for sure whether just removing the styloid will be enough; it depends on what’s causing the compression. For me, my styloids were only compressed by the IJVs, so removing them was enough to give them space & I’ve been fine, I didn’t have any C1 involvement at all, and some other members have been the same. But if the C1 is causing compression then it might still be an issue, otherwise some members have found after surgery that the IJVs have been compressed by nerves or other blood vessels. So it may be possible to see from your imaging what the most likely culprit it, or otherwise it may not even be obvious until your surgeon gets in there!
If you’re getting other ‘classic’ ES symptoms- nerve pain, neck pain etc, then getting the styloids out will help with those, so maybe worth having it done anyway?
something I would query though is when you say he takes a more conservative approach, do you mean just with the C1, or does he not take that much off the styloid? If it’s just shortened a bit it might not be enough to make a difference.
Sorry I can’t give you a definitive answer! :hugs:

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@Jules Thank you for your reply. You’ve been incredibly helpful. I wasn’t looking for a definitive answer as much as some sense of how a C1 shave might or might not affect the surgical outcome. I don’t believe there is any true way of knowing if the compression is being caused solely by the styloid or if there is some other structure at play until an incision is actually made.

Given the doctor’s overall surgical experience and being director of the head and neck cancer institute here, I’m confident that, once he makes an incision, he’ll be able to read the map, so to speak, and competently navigate the terrain, short of relying on a neurosurgeon to perform a C1 shave.

I definitely have classic symptoms along with some more worrisome vascular symptoms. It’s gotten to the point that I’ve jokingly said I’m almost ready to let just about anyone with ether, a bottle of scotch, and a spork make an attempt at the offending styloid in the hope of some relief. That’s mainly why I’m leaning towards the surgery regardless of the C1. I’d really like to have this thing removed and then determine next steps. If I’m fortunate, the surgery will find that there is little to no C1 involvement to have to even consider next steps.

As far as a conservative approach, the doctor doesn’t remove the digastric muscle or do bilateral styloidectomies. He has referred at least one patient to Dr. Hackman for a bilateral styloidectomy, but he himself prefers to do one side - completely removing the styloid at the base of the skull - and then wait two to three months before proceeding with the other side.

I will again discuss all this with him next week when I return to his office on Wednesday. But I’ve pretty much made up my mind that I’m not going to let the question of a C1 shave hold up the removal of the styloid. I should add that I fell asleep last night reading a number of articles on the subject, and given what I read along with your thoughts on the matter, I’m comfortable moving forward with this doctor. Again, thanks so much, Jules, for your truly meaningful reply. Best! :smiling_face:

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@CoHDa - Welcome back! I’ve been wondering how things are going for you, & now I know! I’m glad you’ve found a doctor you feel comfortable with & especially that he’s planning to cut your styloids back to skull base & willing to work to get your IJV to open up.

The whole topic of digastric muscle removal or partial removal has only come up recently. I don’t think that’s typically something that’s done during a styloidectomy. I recall we’ve had a few members whose digastric muscles were adding to nerve or vascular compression so partial removal was necessary to get the best surgical results. Mine was left alone.

As far as spacing between styloidectomies goes, don’t be in too much of a hurry for your second one. It’s my opinion that it’s best for the first side to heal for some months before having the second styloidectomy. Mine ended up being 9 mos apart which was too far apart but 2 mos is a bit too short. You should consider waiting 3-6 mos. so your body isn’t struggling to continue healing one side while the other side’s healing is starting from scratch.

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I’m glad you feel at peace with your decision; he sounds a very competent surgeon & caring, which is important. As long as the styloid is removed back as far as safe to do to the skull base then that’s good, very reassuring.
Your saying about being ready to let anyone loose to do the surgery made me laugh- when I had to have a C-section with my 2nd child the anesthetist who did the epidural had the shakes and I was so scared, it was planned so I wasn’t even in the throes of a painful labour, then I would’ve been happy to let anyone loose to help me :scream: Luckily it turned out okay & I wasn’t paralysed!
I hope that your appt goes well on Wednesday, let us know how you get on :hugs:

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Hi, @Isaiah_40_31! Thanks for welcoming me back. A good deal has happened since logging on in late November or early December. After feeling so demoralized, I just didn’t want to talk about VES or anything remotely related. I’m still reluctant to even mention the latest doctor’s name for fear things won’t work out, again. God willing, this time around will be different.

The doctor, who went AWOL last year, said he planned to remove the digastric muscle - described as a vestigial structure like an appendix - along with the styloid. I mentioned that in one of my older posts back in September or thereabouts. The doctor I’m seeing now isn’t certain that’s necessary. He did say that he could understand why it might be beneficial in some cases to remove the muscle, but wasn’t really sure that mine is one of those cases. I did some reading about the digastric muscle, and it doesn’t seem all that useless to me, so, all things considered, I’d like to hang onto mine for a while longer. Also, removing the muscle, if it’s not absolutely essential to a successful outcome, would just add unnecessarily to the recovery time.

Once the left side is taken care of, I can assure you that I won’t be in a rush to get the right side done, unless it really starts to give me problems. If all goes as it should and surgery is done in March, I wouldn’t plan on getting to the other side until the fall.

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Thank heavens your c-section turned out okay and you weren’t paralyzed, @Jules! It is amazing though that we’re far more willing to roll the dice with healthcare providers and treatment when we’re in pain. As long as there is the possibility of relief, suddenly we lay our necks out for just about anything and anyone, shakes and all. I’ve reached that point, but thankfully the doctor has assured me that neither ether nor spork will be necessary. But until this styloid is removed, both along with the bottle of scotch are still on table. :wink:

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From what I understand, the digastric muscle is vestigial (reference below), per Dr. Constantino the posterior belly of the digastric (or the whole muscles) serves no purpose to us since we’ve become bipedal.

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Here’s some of what Dr. Constantino said about the digastric muscle removal. They used to leave it alone and the IJV decompression was less effective:

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I seriously get triggered just seeing that name, the doctor who went AWOL. I didn’t want to bring up the issue and hoped to be able to discuss my care moving forward without the mention of his name. But for anyone who recalls that saga, I did eventually hear from Kelsey, who called me in January, following her maternity leave, to personally apologize for what I had endured. She said she returned to find complete chaos in the office and told me that if there was anything that she could do to assist me not to hesitate to call her. I told her I was already looking for a new doctor. She said, even so, not to hesitate to reach out to her.

Kelsey’s candor about the state of the office led me to believe that she was not long for that particular practice. Sure enough when I called her this past Friday to request copies of my medical records, I was informed that, like Claudia, Kelsey no longer works there. I should have asked her when she called back in January for copies of my records. Coincidentally, I received mail from the office the very next day. It was the CD of images that Chantelle swore they never received.

Moving forward…

@PamelaInNYC I did mention in my reply yesterday that the digastric muscle is vestigial, like the appendix. I do still have my appendix, and unless the doctor finds any muscle involvement in the compression, I’m planning on keeping it around for a while longer too.

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Thank you for sharing
I am new on here
Could I ask who is the Dr?
I am asking as you mentioned you are self pay :butterfly:

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Hi @Carrie68, I apologize for the delay. To answer your question, I first need to clarify that I am not a self-pay. That was the case when I was seeing doctors out-of-network. The current - and hopefully last - two doctors who I am now seeing are within-network.

Given my previous experience with doctors, who turned out to be utter disappointments, I am not making any recommendations, one way or the other.

That said, the doctor, who has taken over my care where the previous doctors failed me, is Dr. John Coniglio.

Dr. Coniglio, in turn, has referred me to a vascular neurologist, Dr. Taka Higashimori, to determine whether the C1 needs to be shaved in addition to the styloidectomy. I have not yet met with Dr. Taka, but found him mentioned in an interesting local news article.
Survival, not fear: Stroke survivor urges people with health issues to go to hospital despite COVID | RochesterFirst

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Great article @CoHDa. It looks like you’ve found a good team to help you with your ES & VOO challenges. Please keep updating as you go. Your story may be a lifeline for others on our forum who are struggling to find a surgeon who can help w/ VES.

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I will try to provide timely updates as I can, @Isaiah_40_31 . Following my appointment with Dr. Coniglio last Friday, he personally called me Tuesday morning to inform me that he’d already had a conversation with Dr. Taka and made a referral for the C1 consult.

Thereafter, between Tuesday morning and Thursday morning, Dr. Coniglio and Dr. Taka’s staff, working together, scheduled the consultation, ordered and scheduled repeat CT angio and venograms (the previous images were taken in August of last year and Dr. Coniglio wants to take a fresh look at what’s going on), scheduled the pre-admission appointment, the surgery, and the post-op appointment.

Assuming that I don’t encounter any repeat foolishness, the offending styloid is going to be relocated to a red hazardous waste bin on April 30. I was hoping to be able to get an earlier date, but after everything that has happened, I’ll be thankful if the day arrives without issue and the surgery is successful.

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Now that’s how medical practices should be run!! I’m really glad you found this new surgical team. I hope your symptoms take a step back over the next couple of months so you aren’t totally miserable until your surgery. I’ll put your date on my calendar so I can pray for you especially on 4/30. :hugs:

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I’m glad that they have a plan to help you & that they seem to be efficient! I hope the time passes quickly for you til the surgery date!

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Thank you for sharing!

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Thank you for the continued prayers, @Isaiah_40_31. They are deeply appreciated.

If the surgery is performed as scheduled, then the offices will really be an example of how practices should be run. There have been some good starts, but the greatest indicator - at least in my mind - of how well a practice is run is what the patient looks like at the finish line, and I’m not there yet.

Unfortunately, my symptoms have not gone on spring break. The mornings have been particularly bad beyond the issue of the positioning of my head and neck while sleeping. I feel like the change of weather, e.g. fluctuating temps and barometric pressure, has played a factor in what feels like a persistent ice cream headache that extends from my ear to above my eye. There’s that and the feeling that I’ve got gauze packed in my ear canal down into my neck all the way to my collar bone.

I’m just trying to be positive, mindful that my new CT scans are scheduled this Friday, and not too much longer after that, I see Dr. Taka. So, while April 30 feels the equivalent of a lifetime away, there are markers along the road signaling that I am getting closer.

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Thanks for the well-wishes, @Jules! The bar has been set so low that at this point the efficiency of this latest provider is astonishing!

Now I just wish I could go to sleep tonight and wake up tomorrow morning to find it’s April 30. sigh

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I’m sorry that your symptoms are being affected by the weather, sadly that seems to be quite common…I’m glad that you have a new CT organised & an appointment with Dr Taka coming up soon. Hugs and prayers for everything to go smoothly & swiftly! :hugs: :pray:

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