@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.
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.
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!
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.
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.
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.
- 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.
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
I hope that this set back is post-op swelling and that things settle down for you soon, recovery can be a bumpy ride…
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.
Thank you for sharing your healing timeline so far @GCD. I look forward to the “more thorough” update when you post it.
Wow, thank you for sharing. Also for giving Dr.C the experience and knowledge for future patients! How you are recovering❤️🩹
Pleased for you that you are finally seeing improvements, it sounds like it’s been a slow recovery!
Good morning friends,
Does anyone know what ‘Skeletonized’ means with regard to C1 Tp?
“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.”
@BriCSP thank you so much for sharing all of your information. I hope you are recovering well. I don’t recall if you are taking gabapentin or other nerve medication, but during the healing process, that might be helpful if you are experiencing nerve pain.
It means removing any attachments to the area to be removed.
@Leah - You may also read about the styloid process being “skeletonized” prior to resection. It’s an attachment point for several muscles & ligaments which must be detached prior to the styloid being shortened. We don’t see that term used very often, but it’s an apt description of what’s done to it prior to styloid shortening.
If your next question is, “What happens to those ligaments & muscles?”, I’m not exactly sure, but I can say there is usually no notable functional deficit after they are detached from the styloid.
Thank you @Isaiah_40_31. I had seen in relation to the styloid and appreciate the info. Will ask about what it means for C1. Seems attachments are on the back side of transverse process and they remove from the front side. Will investigate more.
Hi everyone! I’m just about at 8 weeks out of surgery and I’ve been meaning to post an update!
Migraines: Completely gone. I still have some post op headaches (see below), but the original migraines that were my main complaint going in are completely gone, and have been since I got out of surgery. So is the attendant head/neck discomfort originating in my suboccipital area. Hooray!
TMJ: My jaw still clicks sometimes, but it’s moving muuuuch more freely and less crooked and with no pain. Now my left side is comparatively tight, but I’m addressing that in PT.
Ear: My ear is starting to open up and is less likely to pop in elevators, etc. Apparently this takes the longest to change.
I’ve also noticed my breathing feels easier on the right, which is not something I even noticed was an issue before. Another unexpected benefit is less nerve pain down my right arm.
First bite syndrome: This seems to come and go, but it got wayyyyy worse after I started doing scar massage around week 5 (when Dr. C cleared me). My PT suspects that the nerve is adhered to the incision, so we’re trying to work through it, and I have seen improvement since being more aggressive with the massage and acupuncture in the area.
Occipital pain/headaches: This has improved significantly, but definitely flairs when I get too aggressive with my PT exercises or trying to test my neck mobility. I’ve found ways to modify all of those efforts to make it less likely to flair. I feel this pain in the back of my head but also just inside my eye socket, which my PT also noticed is an area I have a lot of fascial tension, so we’re working on it from that direction as well.
Scapular pain: This became an issue when I started being more active around week 4 and 5, and my PT said it’s because all my neck movement was coming from my C5 and C6 vertebrae, which is associated with pain in that area. We’re working on freeing C1 to C3 and that has definitely improved the scapular pain.
I’ve been working with a neuro PT, a PT who specialized in head/neck/jaw issues, and an acupuncturist. The PTs are doing manual work to loosen things up and make me more comfortable, and I have simple exercises to help my C1 to C3 elongate and to engage my smaller neck muscles and disengage my larger neck muscles that have been overactive with post surgical guarding.
My acupuncturist is doing dry needling directly around the incision, which has been immensely helpful. It gets red and itchy and then the inflammation goes way down and there’s way less lumpiness under the scar. This also doesn’t flair my first bite syndrome, which is nice.
I did also see my physiatrist once and he gave me some lidocaine injections in my sore head/neck muscles and released some trigger points while he was there. It was intense but very helpful. He thinks I’ve always had underlying cervical instability (I’m hypermobile, and I have broad shoulders with a thin, long neck, which puts some extra strain on the whole system), and that shaving the C1 and just rearraning things in the area have made it worse. So I think PT and working my way back up to being active will be key in my recovery, but being in PT and acupuncture have overall decreased my pain signficantly and made me feel much more normal doing day to day activities.
Thanks for following along!
What an excellent report, @BriCSP! Considering how complicated your surgery was w/ the accessory nerve being involved in the IJV compression, I’m really impressed by how well you’re recovering! It’s hard to believe it’s already been 2 mos since you had surgery! It seems more recently that you posted your first post op report.
Re: First Bite Syndrome. It’s caused by your glossopharyngeal nerve over stimulating the parotid gland. Since the glossopharyngeal nerve is located in a place where it often has to be moved out of the way during surgery, it gets mad & as it recovers, it causes FBS. I had a nasty case of FBS after my first ES surgery but thankfully didn’t get it on the other side after my second one. I hope that as your PT progresses it will go away completely. I’m glad you’ve found wonderful, experienced therapists!
So pleased for you that surgery has helped so many symptoms! It will obviously be a long journey for you with PT etc but as long as things are progressing positively that’s brilliant! Thank you for updating us with how you’re getting on & with info about treatments that are helping you
Hey @elijah … Am I right in thinking you’ve had both styloids removed? And now looking at C1? If so, so sorry you’re still working on solving the problem.