Hi Kimberly, this is my 1 st post as well. After suffering for 3 years I was directed to the Mount Sinai Mark Green Headache Clinic by my local ENT which was a long term differential diagnosis period of Meds and pain management injections. They are a great resource, provider of care and a very coordinated team. During these three years, I’ve seen 2 Dentists, back of an Ambulance, ER, 2 Endodontists, 1 Oral surgeon, 2 ENTs, 1 Skull Base Surgeon at Sinai a prominent Neurosurgeon at Penn and of course by PCP Internist. This led to a diagnosis of Trigeminal Neuralgia 2 - Atypical Facial Pain which means or feels like, take drugs and your on your own. I also have a NUCCA doctor who has helped but no matter how many adjustments, my neck tightness due to my right Styloid pulls me out of alignment. NUCCA can’t fix the problem. Also seeing PT as a Neck Patient and PT and NUCCA should work together. Bottom line PT and NUCCA has irritated the nerves more, so I believe my problem requires a true fix ( Styloidectomy) then go back and strengthen and align my neck. I was lucky to find a great DMD Oral Facial expert at Rutgers Health. Dr. Gary Heir. He definitively diagnosed me with Significantly elongated right Styloid - causing Glossophyrengeal Neuralgia. He now has referred me to head and Neck surgeon, Dr Boris Paskover at Rutgers Health and RWJBH. My 1st appointment went well and see him again for surgery consult Monday. In NY, I only hear of Dr Constantino and at Thom Jeff Dr Cognetti (spelling). I like many others, have seen to many doctors unfamiliar, to many CAT scans, to many medications, to many arguments with insurance company’s and 3 years of living hell with deep nerve pain with no relief. I am happy to have found 2 Doctors that fully understand this condition Gary Heir DMD and Boris Paskover MD Otolaryngology- Head and Neck. Good luck in your pursuit. Until you have a full work up by a Head and Neck Doc, be cautious on any serious manipulations of the neck in PT and Chiro. Good luck
@Tlenahan - Welcome to our forum & thank you for sharing your story. It definitely will resound w/ many of our members. I’m sorry your journey has been three years long but now that you have a proper diagnosis, it sounds like you’re coming to the end of your wait for surgery & the start of healing.
I looked up Dr. Paskhover, & he looks to be an extremely experienced & competent doctor & should be able to really help you. The main things to discuss with him when going over his ES surgery strategy are
•How many styloidectomies has he done (If he does throat/neck cancer surgery, it’s likely he’s removed quite a few styloids)
•How much of the styloid does he remove? (as close to the skull base as possible is best; leaving an inch i.e. 2.54 cm can be too much even though that’s the normal styloid length).
•Does he remove calcified stylohyoid &/or calcified stylomandibular ligaments if they are separate from the elongated styloid(s)? Some doctors will remove the stylohyoid ligament whether or not it’s calcified to prevent further opportunity for calcification in the future. This ligament plays a minor role in swallowing & isn’t missed if removed.
•Does he look for vascular compression i.e. of the internal carotid artery or jugular vein during surgery (usually symptoms of vascular ES are diagnosed as such prior to ES surgery, but it’s still wise to ask about this)?
•Is surgery outpatient or will there be an overnight hospital stay (some insurance companies require 1 night in the hospital)?
•What is his best guess as to length of surgical recovery? (Many doctors say a couple of weeks, but we know from experience that it truly takes months & up to a year or more for injured nerves to recover).
Thank you for sharing your advice regarding PT & chiropractic care especially w/ regard to the neck prior to ES surgery. We warn about rapid velocity neck adjustments for sure, but others have also had the same results you did & have found that therapy for the neck is best started a couple of months post op.
Good news from Dr. Costantino!
“I spoke to one of my trusted radiology colleagues and he indicates that such compression is normal at the carotid when the head is turned to that degree. Unlike the base of the skull there are other veins lower in the neck for the blood to drain through so that back-pressure is not an issue. Bottom line: this is not pathological and we don’t need to address it surgically.” This is re: the SCM/carotid IJV compression.
I did mention the SCM situation to my PT and my acupuncturist/chiropractor (as someone with long-running chronic illnesses, I have a lot of specialists!), and they both thought that if the compression higher up was fixed that things would move more appropriately and it would relieve compression elsewhere. We also found that my right SCM had a lot of trigger points and that manipulating it was relieving to my right sinus symptoms, so we’re going to see if some good old-fashioned PT and manual work can help.
Another question for the group: the one question I forgot to ask Dr. C was about stenting. I’d read elsewhere that surgeons will stent the IJV to help it open, but Dr. C never mentioned that. Do you know what the current thinking is about that?
I have a firm surgery date: July 24 in Stamford. Onward!
Thank you!!
I hope that the PT helps, & good news on the surgery date 
Re stenting- I was told it’s not to ne undertaken lightly as it can’t be removed once in & can cause pain, I was lucky that I didn’t need it…but a few have needed this done.
@BriCSP I agree with that assessment. It is temporary compression. It is only a problem if it happens on neutral head position. On upright position, IJVs barely drain the brain anyways. Drainage is mostly done by Collateral veins through Condylar & Vertebral Venous Plexus (VVP) so any effect on drainage should be minimal. However, most of the studies including this one is done on supine position where IJV become prominent in draining the brain so any collaterals that are seen could only mean that your IJVs are somewhat restricted and Collaterals come to the rescue.
I am not a doctor but IJV stenting, in my opinion, should be entertained as the last resort for opening up IJVs. In general, the area of the IJV and the type of compression needs to be taken into account to decide on stenting. If the compression is induced by bone (Styloid & C1…etc) surgery should be the first line of treatment as any stent put in will be crashed by the bone which will even create more problems. However if the compression is soft tissue such as muscle or blood vessel, stents do make sense as long as the area of compression is far away from any bone.
Thank you for these insights, @KoolDude!
Hi @GCD, I wanted to check in with you—has your swelling gone down and are you feeling better? I know every person and every surgery is different, but it’s been very helpful to hear from you what to expect as my surgery date approaches.
Also, question for the group: any tips for what to bring to the hospital and/or what to have on hand afterward for healing?
Thank you!!
There have been lots of discussions about what to get ready for surgery, so you can use the search function for that, here’s a ‘surgery shopping list’ one of our members did to help others:
Surgery shopping list - General - Living with Eagle
Good pillows, so you can sleep propped up which will help with swelling, ice packs as well, soft foods/ smoothie ingredients as you might have trouble chewing, something to help with constipation as you may have trouble with the meds…
Super helpful, thank you! You mentioned a v-shaped pillow in that thread (six years ago). Do you mean something large that encompasses your entire body, or something that goes around your neck? A google search for v-shaped orthopedic pillow brings up a lot of options.
Thank you again!
@BriCSP I too am very curious to see how your surgery goes as a comparison.
The swelling is going down. The incision site is almost flat against my skin, but I can still feel fluid retention behind the jaw and ear area. I use the opposite side as a comparison and push at the same time in the same areas to feel the difference. The side of the operation is still noticeably firmer and has more squishiness to it. I would say I’m at about 50% with regards to swelling subsiding.
I was starting to feel better with energy and awareness. My wife even told me so without prompting her. But last week I took my son bowling. The next day I started to get this consistent feeling of dizziness and the feeling ramped up for few days and now is slowly going down. So I probably pushed it again too early and suffered the consequences.
Right after surgery and for the first few weeks, I wish I had a large wedge shaped pillow to prop me up, but there was no way I was getting that on the plane with me. That would be my biggest recommendation.
I used a wedge pillow and then a V-shaped pillow on top, I felt it took some of the pressure off the sides of my neck. (just the one for your neck, I didn’t know you could get big ones!)
Glad that you’re seeing some improvements, I guess bowling would put quite a bit of strain on your neck so not surprising that you felt worse afterwards…
@GCD - I was able to take a wedge pillow as one of my 2 checkable bags when I flew Southwest recently. Since I only had a carry on, the wedge pillow (wrapped in 3 layers of trash bags) was the only item I checked. It came through fine both going & coming home.
Glad your healing is coming along! I’d wait on bowling again till at least 6 mos post op & maybe longer. You use a lot of neck & shoulder muscles for that so it makes sense it could flare symptoms. I guarantee the better you begin feeling, the easier it is to push the limit of what you body can do. The aftermath is having to dial activity back for awhile, but thankfully recovery continues, & we get back to where we were & begin gaining progress again.
I’m glad to hear there’s been progress! It is funny how spouses tend to notice the differences first. I’m sorry you’re still not able to return to full levels of activity, though. A PT once told me to double the time a surgeon says you need for recovery, and I’ve found that especially true for the medium/long-term recovery. Re: the incision—are you doing any kind of scar massage or lymphatic massage (or PT)? I’ve obviously not had this surgery but I’ve had three others, and I feel like those tools have been universally helpful for recovery.
I just ordered a wedge-shaped pillow. Thanks for the rec! Next time you need surgery in NYC you can borrow mine 
Helpful, thanks! It looks like the big ones are for pregnancy!
@Tlenahan - Did you have surgery with Dr paskover?