Hello to all. I need your help. I have an upcoming surgery next week to remove my styloid due to compression in my internal jugular vein. I have a stent that was placed PRIOR to removal, which did not help my symptoms at all. In fact I had no prior information given to me before my stent placement that the styloid was pressing up against the internal jugualr vein. Only until a trip to the ER (due to a nerve causing muscular atrophy), did I find out that my stent was almost at complete closure and the styloid was the main issue.
High intracranial pressures, nose bleeds, headaches, etc. Took 35 years to diagnose as no one ever though to check my neck veins. Prior its been ALL ARTERY testing. CTs, CTAs, MRI, MRVs, MRAs, Angiograms. Enough radiatiion to light up the whole east coast and probably the entire US. Frustrating, but now I am here asking for help, related to personal stories/recommendations to symptoms related to after surgery. I would like to tell a little more about my history/symptoms/frustrations too if anyone is interested.
Thanks!
Your lighting up the East Coast/the entire US really made me laugh- even though it is no laughing matter that medics are failing our patient group so badly.
I am in uK so others in US May get better able to help. But am post surgery with one surgery left to go, so happy to add my thoughts once others in US chip in. Good luck in fixing things. D
Thanks so much for your input. As you recommended I really look forward in hearing from you after others come in with their experiences from the US. Thanks again!
So sorry that it’s taken so long to get diagnosed, sadly a common theme on here!
I’m UK too, I had bilateral jugular compression by the styloids. I had some IH symptoms, not anything like as long as you’ve had yours for though which improved soon after the first surgery, & went almost completely after the second; I was lucky that my veins did mostly spring back & I didn’t need stenting.
It’s so frustrating that doctors think putting a stent in a blood vessel which is compressed by essentially a piece of bone will cure it 
I would want to know how much of your jugular vein is being compressed by the styloid process i.e is it compressed right from the skull base? If so, make sure that the styloid will be removed that high, otherwise it may not resolve symptoms. The same if there’s any calcification on your stylo-hyoid ligaments. Is there any involvement with the C1 process? Lots of our members have had their IJV compressed between the styloid & C1, & sometimes the C1 transvers process has needed to be shaved to relieve compression.
Has your surgeon talked about the stent, and if they think it will open up again when the styloid process is removed?
Also have you got compression one the other side as well? If so, you may find that you need surgery on that side too. There are lots of post surgery discussions on here you can search for, & lots of discussions about IJV compression as well- but the common theme is that symptoms may well not improve straight away after surgery, swelling can make them worse for a bit, & it can take a long time for nerves to heal.
Jules thanks so much for providing a lot of info/thoughts.
Yes the C1 is also involved. Plan is for yhe styloidectomy first as a Dr. Nakagi seems to thinknit may be too risky, though I am not 100% sure with his thoughts. So I am not sure where exactly the compression is occurring, other than the internal jugualar vein is almost or to complete closure, even with the darn stent. That is from the most recent CTA of the head and neck and other studeies as well over these past 3 or so years (after the stent placement).
Unfortunately I was born without a left sided internal jugular vein. So this makes me even more concerned as I only have one working internal jugular vein and that’s not even working well.
My collareals in the back of my head a VERY enlarged and one neurosurgeon is concerned that they will eventually get to large and pop/bleed out as I get older. So I am in an interesting/concerned spot. I also am concerned if there is a possibility that since the stent had angioplasty (which I knew nothing about- as it was not even discussed) prior to stent placement (and woke me up during that procedure) that so much force could have possibly caused the vein to attach to the styloid bone. Not sure if that is possibly. I am hoping not. I have that thought as if the force of the balloon and pain I experienced that caused me to wake up, then could the force up against the vein/styloid have caused some sort of adhesion to the styloid? Just concerned since I only have the one internal jugular vein. I am hoping the vein is not attached to the stent. The plan after the styloid removal (if the stent/vein does not open on it’s own) is to have a venogram and a small angioplasty/balloon to open the stent and to measure my head/venous pressures and possibly do a spinal tap as well, all during the same day/time.
Dr. Cognetti is doing my styloidectomy.
I really dont like the thought of the first bite syndrome. I have read various occurences of some saying on this forum that there’s have gone away in about a month, others seem to gonon for a long time. Mr. PCP doctor talked yesterday about it and she has a patient who has FBS from trauma and has tried many medications with no relief and it has affected his quality of life big time. So I am struggling with what to do.
Thanks so much for reading my concerns.
Hi @Tikimon! Welcome to our forum. Your situation sounds pretty awful, & I, too, am very sorry for all the years you’ve gone undiagnosed due to incorrect testing. The good news is that you know what’s going on now & have taken the right steps to help your body heal. Scary thought about your collaterals. We have a number of members who have enlarged collaterals because of IJV compression, but no one has reported that possible problem w/ aging.
I can’t answer whether the stent could have adhered to a wall of your IJV because I don’t know enough about stents. I have heard that once they’re put in place, they can’t be removed, & I have speculated that perhaps the reason is because the vessel walls eventually adhere to the stent, & it would damage the vessel to remove the stent. It’s good to know that a closed stent can be reopened via ballooning based on what you wrote.
Will Dr. Cognetti have a vascular surgeon standing by to work w/ your IJV if it doesn’t open or will he manage that himself? Whatever the case, I’m really glad to know he is being conscientious about making sure the blood flow returns in your IJV. We have many members who’ve seen him & have had good surgical results so we know he’s a very competent surgeon.
I had a bad case of First Bite Syndrome (FBS) after my first surgery. It has stuck w/ me for a number of years, but the good news is the nerve has continued to heal so it’s barely a problem now. I never took medication for it but did learn that staying very hydrated, (80 oz water/herb tea/day) so my saliva was more dilute, significantly reduced the pain from FBS making it more tolerable. It is a somewhat common side effect of ES surgery (caused by irritation to the glossopharyngeal nerve during surgery), but there are also many people that don’t get it.
Another possible side effect of surgery is a lower lip droop which comes from facial nerve irritation during surgery. This also resolves w/ time. I didn’t have a problem with that. I’m not telling this to scare you but to inform you so you don’t have unexpected surprises post op.
Please share your surgery date, if you don’t mind, & I will put it on my calendar & pray for you especially that day. 
Isaiah_40_31,
Thanks so much for responding. I am a bit nervous about this procedure as you probably know.
Thanks so much for the prayers. My surgery is coming up this Monday. Dr. Cognetti will be doing the surgery, but a neurosurgeon at another facility will do the ballooning in a few weeks or so, if the stent/internal jugular vein does not open on its own and my symptoms do not improve after the styloidectomy.
I have a question related to possible complications related to doctor’s who do not remove the styloid to the skull base. From possibly your experience or what others may have reported to you, what are those potential complications? I read somewhere on this forum that Dr. C may not remove styloids to the skull base. From what you have read from his patients, is this a 100% of the time or just with some cases?
Also are their any possibly ways thay you have heard of, in which a surgeon can do certain surgery techniques to help avoid a patient getting first bite syndrome?
As far as post surgery, do you have recommendations of medications that help more with pain and possible sweeling due to inflamation related to the swelling?
One more question for now is, do most people have a hard time swallowing after the styloidectomy and this so called click throat I have also read about? I am concerned with swallowing as I have a tendency of having excess saliva.
Thanks again for your thoughts, input and prayers!
Being nervous before ES surgery is something we’ve all been through so you’re in good company here. I’m glad your surgery is so soon. I hope you haven’t had to wait too long. Quick note - hyper salivation can be a symptom of ES. You may not have so much problem w/ that once you’ve had your surgery or hopefully it will disappear w/ time.
One of our members who has IJV compression & recently had bilateral surgery w/ Dr. Cognetti, reported that he told her he’d cut her styloids back to the skull base. She hasn’t had any astounding improvement yet, but as you’re aware, the IJVs don’t always re-open of their own accord after being squashed for many years & follow-up w/ a vascular/neuro surgeon is often necessary for ballooning, or if that doesn’t work, stenting. Since Dr. Cognetti is aware of your IJV compression & has seen your scans, I would expect he’ll cut your styloid back as far as he deems necessary to free up your IJV, however, it’s best not to take this for granted. Please talk to him before you have surgery to confirm what his plan is so you feel satisfied that he will be doing what’s necessary to help you the most.
Some doctors apply nerve monitor so nerve activity can be watched during surgery. This can help prevent nerve injury. We’ve heard Dr. Cognetti doesn’t do this, but again, you must confirm this with him. The reason I ended up w/ FBS is that my glossopharyngeal nerve was wrapped around my right styloid & had to be unwrapped so the styloid could be shortened. The process of removing the nerve irritated it & FBS was the result. My situation is a bit unusual, but the glossopharyngeal nerve can get in the way during styloidectomy & it seems just the tiniest amount of “handling” to move it makes for post op symptoms which do heal over time. It would be best to talk to Dr. Cognetti about how he works around the nerves in order to best protect them during surgery.
Regarding post op pain & swelling, Dr. Cognetti will give you an Rx for opioid pain meds which you can choose to take or decline & replace w/ Extra Strength Tylenol. My surgeon gave me a 10 day course of Prednisone to help w/ post op swelling & it was a life saver but other doctors on our list prefer not to offer a steroid as an anti-inflammatory solution. We recommend that you ask for that up front when you get your pain med Rx. If he declines, you can ask again during your recovery period if you feel you need it.
Non medication aids that we highly recommend for reducing inflammation are 1) head elevation when lying down (30º is optimal). A wedge pillow w/ bed pillow added on top can help w/ this or Amazon sells an adjustable wedge pillow that some of our members have recommended. 2) ICE! Buying 3-4 gel ice packs so you can rotate them in & out of the freezer will be very helpful. Icing your neck 15 min on & 45 min off, as needed, in the first week after surgery will go far toward helping reduce swelling & pain. It’s important to put a thin towel between your skin & the ice pack even if the ice pack has a cover. This will help prevent ice burns.
A sore throat (causes temporary swallowing difficulty) & stiff jaw (causes temporary chewing difficulty) are common after surgery. We recommend planning for a soft diet ahead of time. Things like fruit/veggie smoothies w/ protein powder, custard, yogurt, mashed potatoes, mac & cheese, apple/fruit sauce, soups, cottage cheese, etc., all work. In my case, my husband would cook a meal then put all the components in the blender w/ some almond milk & blend it up so I could drink it or eat it w/ a spoon. It looked awful but always tasted yummy!
I wouldn’t worry about the throat click post op. That is usually a result of the inflammation & is a somewhat rare occurrence. If it happens, we can discuss possible options to help.
In summary, make a list of the questions I’ve suggested & any others you think of to ask Dr. Cognetti about BEFORE you have surgery. You can call over the weekend & let his exchange know you have questions you feel are urgent prior to your surgery on Monday, or perhaps send an email. The day of surgery you won’t likely have a chance to talk to him about these things as surgeons tend to do back to back surgeries so there is little “social” time w/ each patient before or after the surgery.
I hope this tome is helpful. Please feel free to ask anything else you’re concerned about before Monday.
Not long to go then! It’s good that Dr Cognetti is well aware of your IJV issue & that there’s a plan in place should it not re-open…that sounds awful being woken up when they inflated the vein! It would be unusual for the vein to adhere to the styloid unless there was scarring- @TheDude had scar tissue I believe around his IJV which was removed during his last surgery, he had had several surgeries before. Hopefully he might see this in time & comment.
I can understand your concern about FBS, but it is very rare for it to be that severe & for it to continue a long time. To be honest, in your situation the vascular issue would be more of a concern for me, & the need to remove the styloid would be my priority.
Re swallowing post surgery, that was one of my biggest concerns, but I needn’t have worried as mine was fine, & couldn’t feel any difference at all. As @Isaiah_40_31 says, chewing may well be an issue for a week or so afterwards & opening your mouth wide, so it is a good idea to get soft foods or smoothies in.
I’ll be praying for you Monday too
Thanks so much for all.of the information.
I emailed Dr. Cognetti about the removal of the styloid to the skull base and to see if he uses nerve monitoring. Not sure if he has seen the questions. I will ask his staff in the morning if he saw the questions. I may be first on the surgery schedule I believe. From what you have indicated, folks who have had Dr. Cognetti do their removals, have not had the nerve monitoring. Did you have the nerve monitoring and who did your styloidectomy if you dont mind me asking.
I am a bit concerned with the sore throat/swallowing after surgery. Was it so bad that you could not swallow at all, at first?
Also I am scheduled to stay in a hotel for two days after being released from the hospital. Did you experience that scenario yourself? This is done as an outpatient surgery.
Thanks so much for your input, thoughts and prayers.
Jules,
Thanks so much for your prayers!
I’m glad you sent an email to Dr. Cognetti & am hopeful you’ll get answers prior to surgery. The medical staff at the surgery center may be able to answer as you suggested. Being his first surgery of the day is good! You know he’s fresh & not tired from doing a bunch of surgeries before yours. Besides that, you don’t have to starve all day while waiting for surgery. 
Dr. Samji did my ES surgeries in 2014/2015. He does do nerve monitoring but I still had problems w/ my glossopharngeal nerve because it had to be moved out of the way. Dr. Samji is a great surgeon for regular ES, however, he is not one to see for vascular ES. You’re in better hands w/ Dr. Cognetti because he seems more aware of what needs to be done for that to resolve.
My throat was not so sore I couldn’t swallow. It was just sore like when you’re getting a cold. It lasted a few days then was gone. The sore throat is usually caused by the breathing tube inserted to help you breathe during surgery. I did not have a sore throat at all after my second surgery.
My surgery was outpatient. I went home w/in a few hours of the surgery. My sister came to help me for a few days post op so my husband wouldn’t need to miss work. I hope you have someone to stay with you. It’s not mandatory but is very helpful. One of our members walked to the hotel after her ES surgery w/ Dr. Cognetti, but her husband was w/ her to help her. That’s to say, you may feel ok right after. It can take a day or two for the swelling to ramp up as the surgical meds help keep pain & swelling down till about day 3 post op. Days 3-5 are when swelling is the worst so make sure to keep your head elevated when at rest & keep that ice & those pain meds coming during that time. By the end of week 2 you should start to notice some improvement & reduction in symptoms.
I will be praying for the best possible outcome for you, @Tikimon.
With the major of swelling occuring 3-5 days out, were you able to still swallow ok? I cannot remember if I read where you had a course of prednisone and if you think that could be helpful. Also what medications worked best for you?
I hope that your surgery improved your symptoms. How are you doing now?
You have no idea of how much your information and prayers mean to me. I appreciate it so much.
I did have prednisone which helped a lot. I think I was Rxed a 10 day tapering course of it. My throat felt the most swollen first thing in the morning (even though I slept w/ head elevated abt 30°), & that’s when I’d take the prednisone. Throat would feel much better abt 45 min later & for the rest of the day. I took Percocet for pain for abt 6 weeks but the caveat is I started cutting my dose back on day 3 after surgery. For me, that was a BIG mistake as by day 4 my pain was horrific & kept me recliner bound for 2 days till pain meds were able to catch back up & control pain. I began tapering successfully during my second post op week & continued to cut it back even cutting pills in half until I no longer needed it. Many of our members who’ve had surgery recently have been able to control pain w/ Extra Strength Tylenol, & no, or few opioids. Since my surgeries were 8 yrs ago, things may have changed w/ the surgical procedure to some extent so recovery is a bit less difficult.
I did have good outcomes from both surgeries though my symptoms didn’t go all the way away until both styloids were removed. I still have occasional nerve pain, but it’s very minimal & doesn’t impact my life significantly.
Wishing you well tomorrow. Please let us know how you’re doing when you feel up to it.
Isaiah_40-31
Thanks so much!
Just a quick report as I don’t feel the greatest and I am ICING as you recommended! Definitely needed for me. Pain meds also definately needed for me.
I was the first Dr. Cognetti’s surgery schedule around 7:30am which was his actual operating time for today. I was there at 5:30am for sign in and prep. Now here at 7:15pm in a hotel reporting with:
Overall styloid area Pain = 11.
1st actual 5mg Oxy did not work at 4pm. Taking another at 10pm. I am pretty sure I initially had fentanyl several times through my IV while in recovery.
Pain now down to my thyroid.
I’m may call tomorrow at his office. I can smile but most of my lower half of my face feels numb. The weird part is that for now I can feel the poking of my face with my finger. So doesnt seem totally numb. Do you think this could possible be normal with a of moving of nerves during the procedure?
Swallowing at a 10 pain level.
Bruising down to close to my thyroid area.
Not sure if he did nerve monitoring or with how much of the styloid he was to remove with just a short conversation this morning prior to surgery as I mainly concentrated with my main question/concern of the only internal jugular vein I have with the stent in it. As you already known of my concern/worry of the IJV potentially sticking/adhering to my styloid.
I did ask for the styloid to take home, but could not get that darn thing that has caused me 35 years plus of suffering. I kid you not, I was going to frame that. Laughing about that, but as you know its no laughing matter.
Thanks again! And thanks to all who may read this and have responded to my concerns so far. It means a LOT to me.
I’m so glad surgery is behind you now. I’m sorry your pain is so severe. I should have thought to tell you that many members have recommended sucking on ice chips to help w/ throat pain since you can’t physically ice there as easily. Sucking on a popsicle is a tastier way to achieve the same end.
Facial numbness/weakness is normal post op & can last for a few weeks to a few months. It just depends on how quick your nerves are to bounce back. As nerves heal, your pain can get worse or you may experience tingling, pain zaps, a feeling of warming or cooling on your skin w/o the temp actually changing to the touch, even a dull ache can happen. These sensations will come & go. I noted that healing was 3 steps forward & 2 steps back for me but the net is gain in the direction of recovery. I had some symptoms that took 9-12 mos to fully resolve though most were gone by abt 6 mos post op & some much sooner than that. Healing from ES surgery is an exercise in patience.
If your pain continues at the current level, I would call & talk to Dr. Cognetti’s exchange tonight & ask if you can increase your pain med, take it more often or add Extra Strength Tylenol, get an Rx for prednisone or ? I definitely had pain post op but not at max level like you’re having.
I hope the ice begins helping & that you’re able to get some rest tonight. This week will be tough. If you flew to Philly, ask for a wheelchair escort to your gate when you go home, & ask the flight attendants for ice in a plastic bag so you can ice your neck on the way home. You’ll want to put a washcloth or paper towels or something like that between your skin & the ice on the airplane.
It’s good you’re back at your hotel & can rest w/o all the activity that goes on in a hospital.
Sending a gentle
Good of you to check in when you’re still feeling rough…I think @Isaiah_40_31 has covered everything. I’ll just say that the weird numbness but still able to feel a bit is quite normal, I had that with both surgeries & still have a little bit of that around my jaw & ears, better than pain…I hope that you can get some better pain relief. Recovery is a long journey so keep strong. Hugs & prayers
Thanks so much Jules! I appreciate all of your input and prayers. This surgery took me by surprise with the amount of pain and other symptoms after surgery and this is only day two. I have a follow-up with the surgeon tomorrow before I head back to my home state. With my symptoms I feel that I need to get some reassurance before I make the 7 hour drive back. Still having swallowing issues with pain and other symptoms I was unaware of that could occur.
Thanks again!
@Tikimon, It seems everyone is a bit different in how their bodies respond to surgery. Pain & swelling seem to be a bit different for everyone. Since it’s unpredictable, I think surgeons stay away from mentioning possible post op issues. We have found that too many of them underestimate healing time & tell their patients they’ll be fine in 2 weeks. From years of testimony here, we know that 2-12+ months is the reality. Very few of our members have felt perfect after 2 mos, but there is an occasional fast healer here.
I can’t believe you’re driving yourself home 2 days after surgery. Since driving while taking narcotic pain meds is out, you’ll need to ask what you can take on your driving day. Also make sure to have your ice packs frozen. Hopefully you have an ice chest w/ you to keep them cold as you go. I imagine you’ll be needing to stop a bit on your way home so the trip may take longer. Taking a rest or even a nap every couple of hours during your drive will help you to get home safely.
@Isaiah_40_31
No not driving home myself. My dad is doing that.
May stay another day. I am concerned with the amount of blood/hematoma that is around my neck/chest and with the amount of swelling around my voicebox/neck. Hurts real bad to swallow. Some chills. Seems my breathing is a little affected more at night. I am keeping my head up, and atill am using ice. I sent pics to my surgeon, as requested by the nurse I talked to and another doctor called and said that swelling and some low grade fever is normal. An ENT doctor who was on call last night, that I talked to due to me having such bad swelling/swallowing, mentioned to watch my breathing and if things got bad that a possible breathing tube would need to be inserted. So I am very concerned about that. Hoping when Dr. C looks at me tomorrow, that he will say I am good. I just was not expecting this amount of symptoms after the procedure. Do you have a lot of blood bruising/hematoma after your styloid removal?
Thanks again for reading my concerns/questions. This has been brutal compared to my hernia repair, shoulder labrum repair and sinus repair ALL combined.