He does do telehealth. We met last week. He requested a CT venogram and updated sleep study…which will be challenging as my head hurts too much to wear thr
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What’s his prerequisites for doing surgery? Does he do c1 or does he work with another surgeon who does?
I’m not sure what his prerequisites are. But he does not do the C1 shave. It looks like he uses a couple of neurosurgeons, the one I’m familiar with is Dr. Lo.
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A good answer person in Dr. Costantino’s ofc is his ofc manager, Claudia Valerio. She is very personable & will take the time to answer any questions you have about Dr. Costantino & his philosophy about VES surgery. Please PM me if you’d like her direct phone number.
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@BriCSP @GCD Those of you who went through surgery with Dr C and Dr Lo, do you happen to know how much they charge? I know you went through C1 + Styloid removal but I would like to know how much they charge for C1 removal only for someone that went through Styloidectomy and paying out of pocket (Not Insured)?
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I don’t know, sorry, I only went through my insurance (and paid to my out of pocket max—hospital stays aren’t cheap, and my coinsurance is 10%). I would point you in the same direction as @Isaiah_40_31 pointed @elijah—Claudia Valerio, Dr. Costantino’s office manager. She’s very helpful.
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I had my follow up with Dr. Costantino today. My bandage came off and the incision is healing very well. I asked him how much of the transverse process they took off—he said almost to the vetebral. My compression was significant and they wanted to be thorough, I guess.
I also asked about some postop symptoms—I have the same numbness in my ear and lower jaw from the cut nerve that @GCD mentioned (the greater auricular nerve). I also have some soreness and loss of function in my right trap from moving the spinal accessory nerve (did you mention this too @GCD? I couldn’t find it in your post just now, but I thought I remembered you bringing it up). In the past few days I’ve also developed “first bite syndrome,” which is when you have searing pain the first bite of food you take at each meal. He said it’s from moving the salivary gland during the surgery—it gets inflamed and then causes pain each time it produces new saliva when you eat. All of this should resolve in a few weeks to months (love that word, “should”!). I’ll be doing PT as soon as I can (6 weeks out) to help.
The good news is my symptoms really do feel a lot better. I haven’t had a single migraine since surgery, and while this would not usually be an abnormal amount of time to pass without one, the inflammation and pain from the surgery, the odd sleeping positions, the sedentariness, etc. would all have been major triggers in the past. I just don’t feel the underlying discomfort and aggravation that a migraine would spring from if triggered, which I’ve felt nonstop for 10+ years. While my right side feels stiff from the surgery, I don’t feel the TMJ in my right jaw, and my mouth isn’t opening sideways anymore. I was prepared to continue to feel symptoms while healing, so this is more than I hoped for! I’m excited for healing to continue and to really notice the difference after the discomfort of the surgery has abated more.
One thing I do still feel is the discomfort in my right ear and its feeling of being partly closed (or completely when pressure increases, such as during an elevator ride or when I take the subway under the river, and I always need to force it back open). When I had my septoplasty a few years and we hoped that would resolve the issue, my ENT told me that would take the longest to change, so I’m assuming that’s the case here too. Obviously there’s also still a lot of swelling in the area.
I’ve had too many other past issues and surgeries to think that a surgery is ever a silver bullet or that there aren’t ever downsides, and I know recovery can be a long road, but I feel free of a constant discomfort and also a constant worry about triggering a migraine that limited my life. I told Dr. Costantino I cried from happiness and relief the other day, and he was so happy and gave me a hug 
Thanks everyone for your support and for this group, without which I would never have found Dr. Costantino!
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I can give you some help w/ the FBS problem as I had that in spades after my first ES surgery. A couple of things that helped me were staying very hydrated i.e. 60+ oz (80 oz is even better but hard to consume) water/non-sugary fluid/day. This helps keep your saliva more dilute which lessens the FBS pain. I also found that putting my first bite into my mouth & holding it there for a few seconds before starting to chew helped sometimes. You’ll also learn which foods are worse triggers. For me it was citrus (sour), spicy, & extra sweet things that really set mine FBS off. I love fresh pineapple & had to give it up for quite awhile.
FBS is caused by the parotid gland (your largest salivary gland) being overstimulated by the glossopharyngeal nerve. It’s not an uncommon problem after surgeries in the area of the neck where the styloidectomy occurs because the glossopharyngeal nerve often has to be moved out of the way which irritates it & voíla! FBS is the result. For most people, FBS does go away w/in 2-4 mos post op. You’ll notice the intensity begins to fade after a few weeks & occurrences become less frequent.
P.S. I’m also really happy to hear about your recovery so far & will pray healing continues at a steady pace. 
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Wonderful!!! I’m glad the pressure around your eye and other areas feels better.
Great news about your jaw deviation too–this should help your TMJ to feel better long-term.
I hope your pain down your right arm has dissipated and your right hand feels stronger already and stronger each week.
Cheers to happy tears and no more nerve-induced tears in your right eye!
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I’m so pleased for you that the migraines haven’t happened, and that you’re prepared for recovery to be a bit bumpy…I hope that the ear discomfort & arm weakness improve soon, hugs and prayers 
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@KoolDude Sorry I do not know either. Once my insurance has finalized their payments to the docs and hospital I will tell you the final settlement amount. Insurance is slow to pay out, so it could be a few more months though.
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Yes, my left trapezoid and the crevice of my neck on the side of the incision hurt and still does today. It has been slowly getting better, but still has a way to go. To me it feels like an overworked muscle.
I’m glad to hear you are feeling better already. It’s really a blessing that they found that nerve wrapped over the IJV. As time goes on and the swelling subsides, you will gradually feel even better. Hopefully the first bite syndrome pain goes down quickly too.
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This is all super helpful advice, thanks! I already notice a difference from trying some of these techniques.
Thanks so much!! Thanks for remembering my weird symptoms
Oftentimes surgeons will charge less for self pay than for insurance, just FYI. @KoolDude, you may also be able to get on a payment plan—that’s what I did with one of my surgeries that was out of network.
This is the most painful part for me these days—for me it goes up to the back of my head (it feels connected to the shoulder soreness but maybe not). I hope my PTs have some tips to mitigate the issue, and if they do I can pass them on!
Thanks! I hope you keep feeling better too!
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That would be the course your accessory nerve runs & since it was moved around to get it off your IJV, that would explain your skull base/neck/shoulder pain.
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I just got my full operative report, which I’ll reproduce below. I’m sorry to say that since Monday (two weeks post op) I’ve had constant migraine symptoms—either just the pre-symptoms or a full-blown migraine. However, the originating pain feels like the back part of my head (near the right occipital, the most protruding part) rather than near the right suboccipital area like it was pre-surgery. The new area of pain is also the part of my head that’s been spasming and sore since surgery, so my hope is this is just post-op symptoms. I watched the video of the spinal accessory nerve compression surgery that @KoolDude posted, and as you can see from the report Dr. C didn’t do exactly the same thing, namely, he didn’t tack the spinal accessory nerve so it was lifted. My biggest fear is that I now just have compression elsewhere.
I know I can’t really know until I heal (/do further imaging), so I’m choosing to take in stride and just take pain meds and try to get through it. I know @GCD you said your symptoms got worse at first, I’m just wondering why mine got so much better for two weeks before getting (way) worse, though paradoxically the fact it’s so much worse is making me hopeful, since things are clearly not reverting to presurgical normal.
I’m also seeing my original diagnosing physiatrist in a few weeks and he already suggested over email we can try Botox or something else to calm down that muscle if it’s causing trouble. I’ll talk to Dr. C about it the day before at my 5-week follow up.
Operative report:
PRE-OPERATIVE DIAGNOSIS: Right-sided clinically and radiographically proven jugular vein outflow obstruction syndrome.
POST-OPERATIVE DIAGNOSIS: Right-sided clinically and radiographically proven jugular vein outflow obstruction syndrome.
PROCEDURE:
- Transcondylar approach to the infratemporal fossa, styloid process, transverse process of C1 vertebra, and digastric muscle, and jugular foramen. 2. Resection of the entire styloid process into the infratemporal fossa with continuous facial nerve monitoring. 3. Mobilization of the spinal accessory nerve with relief of compression on jugular vein. 4. Resection of transverse process of C1 vertebrae lateral to the vertebral canal. 5. Resection of posterior belly of the digastric muscle. 6. Fasciotomy of the jugular vein.
ATTENDING SURGEON: PETER D COSTANTINO, MD
ASSISTANT SURGEON: Dr. Michael Tobias.
ANESTHESIA: General by oral endotracheal tube.
ASSISTANT: Dr. Tareq Sawan.
INDICATION FOR PROCEDURE: Right-sided clinically and radiographically proven jugular vein outflow obstruction syndrome.
PROCEDURE DETAILS: The patient was brought into the operating room, placed in a supine position on the operating table where general anesthesia was administered and maintained with an oral endotracheal tube. The patient was prepped and draped in standard fashion for the proposed operation, and facial nerve monitoring electrodes were connected appropriately. Upon concluding that they were functioning correctly, the patient was prepped and draped as mentioned, and a time-out performed to confirm physiologic stability. With the time-out performed, the operation was initiated with a curvilinear incision from the mastoid eminence inferiorly and sweeping forward in a neck crease of approximately 8 cm. With this incision created, dissection was then carried into the infratemporal fossa.
Dissection into the infratemporal fossa via transcondylar approach exposing the styloid process, jugular vein, transverse process of C1, and digastric muscles, all under facial nerve monitoring: At this point in time, the sternocleidomastoid muscle was identified and the great auricular nerve was transected and marked with blue ink. Dissection was then carried further medial, and the jugular vein, carotid sheath, vagus nerve, and spinal accessory nerve were all identified. Glossopharyngeal nerve was also identified. Dissection was carried along the jugular vein superiorly to the digastric muscle, which was then mobilized. At this point in time, the styloid process could be palpated as could the transverse process of C1.
Resection of styloid process to the skull base: At this point in time, the styloid process was dissected free of any overlying tissue and extension of the dissection was carried superiorly to the sphenoid wing undersurface. With the styloid fully exposed, the connections to the mandibulostylohyoid ligaments was transected. The styloid process was then removed using the rongeur forceps from directly below the skull base taking great care not to damage the facial nerve. This was achieved. With the styloid process removed, the mobilized digastric muscle was then addressed.
Resection of posterior belly of digastric muscle: At this point in time, the posterior belly of the digastric muscle was resected over an anteroposterior distance of approximately 3 cm. This removed the muscle from the surface of the jugular vein. With the muscle resected, attention was then turned to transverse process of C1.
Resection of transverse process of C1 lateral to the vertebral canal: At this point in time, C1 was completely skeletonized lateral to the vertebral canal. Dr. Michael Tobias then performed a resection of the transverse process of C1, taking great care not to damage the vertebral artery. With this resection completed, attention was then turned to the jugular vein and the spinal accessory nerve.
Fasciotomy on the jugular vein (right) and mobilization of the right spinal accessory nerve: At this point in time, the compression into the jugular vein of the spinal accessory nerve with the head turned to the left was substantial. It resulted in material compression of the vein, and as a result, I mobilized the nerve taking great care not to damage the vascular supply of the perineural area. With the nerve fully mobilized and now lying parallel to the jugular vein, the fasciotomy of the vein was then carried out successfully without defect to the vein. At this point in time, the vein was considerably more dilated than upon exposure. Dissection had been carried all the way up to the jugular foramen and the vein appeared to be decompressed all the way to the foramen. At this point in time, the wound was copiously irrigated with saline and povidone-iodine. A Hemovac drain was then placed and exited through a separate post incision stab wound. At this point in time, Dr. Tobias then addressed the greater auricular nerve.
Microneural anastomosis of the great auricular nerve: At this point in time, Dr. Tobias, with Dr. Sawan assisting him, performed a microneural anastomosis of the great auricular nerve in standard fashion. With this concluded, the wound was then closed in layers with deep closure achieved using interrupted 2- 0 and 3-0 Vicryl suture and skin closure achieved using staples. At this point in time, the patient was cleaned, dressing applied, and returned to Anesthesia for emergence and extubation. Upon emergence, the patient was found to be moving normally and symmetrically.
ESTIMATED BLOOD LOSS: For the procedure was less than 60 cc.
SPECIMENS: Included the styloid process, the posterior belly of digastric muscle, and bone from the transverse process of C1 vertebra.
DRAINS: Consisted of a single Hemovac drain and the patient had no
complications and was transferred to the recovery room in stable condition.
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I think it was Buzz who posted the video here, not me.
I think all the muscles dissected will swell and compress the IJV again mimicking new compression. I would say wait 90 days before you can judge. Some folks get the peak of the inflammation later. If you really wanted know how long this can take, take a look at the @M_UK posting 9 months after Styloid & C1 resection. He did an awesome comparison where he even quantified it in fluid dynamic software. I also posted a link of a study that looked into jugular vein collapse after neck dissection which shows you need 3 months to fully heal from swelling compression of the IJV. You can see both links below
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Thanks, @KoolDude, this is enormously helpful and relieving! And apologies for not giving you the credit on the video, @Buzz—you both post such helpful things!
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I hope that this set back is post-op swelling and that things settle down for you soon, recovery can be a bumpy ride…
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Just to compare this is a snyposis of the major issues post surgery for me.
Week 1 I had a consistent powerful headache and slowly tapered off from tylenol.
Week 2-3 I developed pain in the occipital area when sleeping. Feels like the muscles attached in that area were cramping. Hurt the most lifting my head in the morning off my pillow. I never had pain there before the surgery except with extreme migraines. I had a few days with headaches a week, but did have to take Advil to get it under control. Swelling at its maximum.
Weeks 4-8 The occipital area slowly got better. Headaches about once a week, still took Advil. Started noticing dizziness that came in waves and got progressively worse towards the end of the day. Swelling went from 100% to around 50%.
Weeks 8-12 Occipital pain resolved. No more headaches. I can turn my head freely. Noticed dizziness was related to physical exertion especially with use of my left arm (side of the surgery). Dizziness is almost under control now as long I don’t push it. I would guess the swelling went from 50% to 25%, but if I use my left arm too much, the swelling builds up again for a day or two.
For me, day to day, I noticed very little change. Actually for the first 2 months I was going backwards with the development of dizziness, swelling and increase in the amount of headaches. It’s only been in last few weeks that I have started to see improvements from issues I was dealing with pre surgery and those caused directly from the surgery. I’ll write about that more in my 3 month post this week.
I think you are just feeling the maximum build up from the swelling now, just like me it took awhile for it to kick in. I still have a decent amount of swelling 3 months out and it looks like it will take 6 months or longer for it to fully subside.
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Thank you for sharing your healing timeline so far @GCD. I look forward to the “more thorough” update when you post it.
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