I am getting ready to have my styloid process removed by an ENT oncologist. I am curious as to why some surgeons do it extraoral. My ENT oncologist says it is much safer intraoral and just get the process and follow down to the end and take it off and it will not move. There has to be some reason to do it eh other way. It does seem like it would be much more dangerous externally . I want to make sure I am not missing something before I have surgery. He has done some Eagle syndrome surgery’s. I did check on this. I am new to this so I need all the information I can get.
Also did anyone else have problems with Double vision and blurry vision or your optic nerve linning thinning. I read that lower blood flow to the nerve can cause this but the eye doctor said in three months time my lining has gotten extremely thin. Another question. Did anyone get severe weird headaches that the only thing that helped was lying down in bed all day. Shooting pains that burned. The nuerologist and Duke even thought I had a CSF leak and did all the testing and I did not have that and eventually Chapel hill found the elongated styloid process.
Hi adriene61 -
I’m so glad you’ve been diagnosed & have found a surgeon whom you feel is competent to do your ES surgery. Are your second styloid & stylohyoid ligament normal?
On this forum, many of us think that external surgery is safer & provides a better long-term fix for ES than intraoral surgery does. The reasons are these: 1) When a surgery is done through the neck i.e. externally, the vascular tissues i.e. carotid arteries & jugular veins (among others) can be seen so they can be protected. Also, the nerves in the area can be electronically monitored to help prevent irritation or damage (though it is likely some will need to be moved for styloid access & just moving them can irritate them). 2) The styloid process(es) can be removed at the skull base so no stub is left to offer a chance for regrowth. The stylohyoid ligament is also more easily removed & some surgeons prefer take it out whether or not it’s calcified so it never has the chance to calcify & cause future problems. In intraoral surgeries of the past, some doctors have simply shortened the styloids, not fully removed them. Some haven’t even bothered to smooth the tip of the remaining styloid, & their patients continued to suffer from ES plus adding symptoms as the sharp styloid tip poked nerves & other soft tissues. Nerves & vascular tissues cannot be monitored during intraoral surgery. Intraoral surgery also potentially has a higher post op infection rate because food & drink must pass by the incision(s) on their way down the throat & thus can contaminate the surgical site(s).
A forum member recently had intraoral surgery where her surgeon did remove the styloid to the skull base & also took out the stylohyoid ligament. She said it required several incisions in her throat to accomplish that. The external route requires only one incision (on each side of the neck in bilateral cases). There are YouTube videos of both types of surgery if you want to watch to see what’s involved in each one. If you’re squeamish, skip it. Due to refined surgical techniques these days, there is very little bleeding that occurs during these surgeries.
Regarding the symptoms you have, vision problems are not uncommon though yours are a bit more severe than we usually see. Headaches of the magnitude you describe & vision trouble are usually caused by vascular compression i.e. the carotid artery or jugular vein or both are being compressed by the elongated styloid or a calcified stylohyoid ligament. These symptoms often get worse when the head is in certain positions as opposed to be constantly bad, but that’s not to say situations like yours can’t happen. They’re simply more rare.
You should get improvement of your vision (though I’m not familiar w/ the implications of optic nerve lining thinning) & reduction or complete eradication of your headaches once you have ES surgery. The symptoms will likely not disappear instantly but will go gradually as the nerves & vascular tissues recover. In some rare cases, the compressed vascular tissues don’t rebound & a stent must be installed to hold the vessel open.
I’m so glad you didn’t have a CSF leak as that brings on another dimension of health care need. I hope your surgery goes perfectly & you feel like a new person with that styloid removed.
I know my ENT oncologist has done a few of these surgeries and feels its safer to do intraoral. I appreciate the prespective on the extraoral. Do many people who have the styloid process removed then go to a vascular doctor? Thanks for the information.
Adriene
I’m sorry I didn’t answer all your questions. Both my styloid process have calcified and are extremely long. The right side having more symptoms than the left but he will have to remove both. He said in my case it will be easy as you can easy feel it in my mouth and he will go in and follow it all the way down to the skull and remove it. I guess he wasn’t as worried about the nerves as the styloid process is so so long and he isn’t haven’t to go looking for it. but I guess you always run that risk. Thanks for all the information again. I am sort of surprised as many CT and MRI I had at Duke and the fact the Eagles was discovered at Duke that they missed this. But I guess they don’t see many Cases. My surgeon did arterial temporal biopsy on me and larynx biopsy and that when he saw the styloid. He then went back and saw teh styloid process all the way back to 2009, Thanks for all your knowledge. I am new to this. I hope I get my surgery date any day. They are trying to work me in…
Adriene
Follow-up w/ a vascular doctor is usually not necessary. The vascular tissues normally re-open w/o help. If your vascular symptoms - i.e. headaches & eye problems don’t begin to subside, or if they get worse by about 8-12 weeks post op, it might be worth seeing a vascular doctor.
I’m glad your doctor is advocating for you & is working to get your ES surgery scheduled sooner than later. That is fantastic.
As far as intraoral or external surgery goes, the risks are the same regardless of styloid length, I think. It’s the vascular compression & the irritation of cranial nerves which exit the skull near the styloids that create the ES symptoms. They can be quite varied depending on which cranial nerves are affected & that’s one reason ES is so hard to diagnose.
I was told that stenting might be needed if my jugular veins didn’t reopen after surgery, in which case I’d have been referred to a vascular surgeon. But they have reopened enough to not need this , not fully, but I rarely get vascular symptoms now, & if so only mildly. I was also told that the stenting has risks, can be painful & can’t be removed once put in, so it needs careful thought.
One member has had successful stenting surgery, without removing the styloid processes being removed, but it does seem a bit counter productive to not remove the cause!
Hello @adriene61,
Just curious who you saw at Duke Medical that ruled out your CSF leak, was it Peter Krantz? And did they look for a spinal leak AND skullbase leak (sinus)? If so what imaging did they use? Sorry for the questions but I have a skullbase leak and ES - the ES is causing increased intracranial hypertension causing my leak repairs to fail. I have the eye/headache symptoms you mentioned…there is a connection.
As far as my experience with IJV compression, just had one styloid removed and it had grown in such a way that it 100% occluded my IJV and vagus nerve any time I opened my mouth, chewed or turned my head to the right. I am now 6 weeks post op and had a Doppler US to check how it was doing - happy to say it is 100% open in all positions, no claudication - no stent needed. But my ENT did have a vascular surgeon at his side for the surgery.
Thanks for sharing, it is so helpful for us all!
I had the provocative test with Peter Krantz PA Taylor in February and I had the Myelogram trace for the leak by Peter Krantz on Aug 14th which was negative. Honestly I have been in bed for 90% Of the day in pain since February and I did get a little better as far as positional headaches.So maybe I had a leak and it healed laying in bed by the time they traced the leak because the positional headaches had stoped. I don’t know. But I still had the rt side pain in my head shooting pain and burning in my head, spine, right side face pain and blurry eye and double vision.And the feeling that I have had the mumps on the right side of my face for months. I have been having testing since November of 2018. Dr. Trevor Hackman an ENT oncologist did a biopsy for Arterial Artery and a larynx biopsy and found the elongated styloid. I was surprised with all the MRI’s, CT scans and myelograms that i have had in the last few years that no one had found this previously. Hackman went back to my records and said he could see the elongated styloid all the way back to 2009. You know I don’t know if he checked the brain and spine but I would assume both. I guess I need to check. Technically he isn’t my doctor because my insurance is out of network for duke but they agreed to check since they pretty much are the only one in the area that specialize in this. Chapel Hill referred me as they are not equipped for CSF leaks. Did you have your styloid removed intraoral or extraoral? Dr. Hackman at Chapel Hill is going to remove mine extraoral. He says mine is extemely long and he will follow it all the way down to the skull and remove it and it can not move and cause anymore problems. They are removing both or mine as both are very elongated. I am also having problems with my vision. I am also having to have two eye surgeries. One this Tuesday. I think the blood flow is being lowered from the compression. I have lost a lot of vision in my left eye. Thanks for all your input this is all new to me and trying to figure it all out. I hope you feel a lot better now.
If you don’t mind me asking where did you have your styloid removal done and who did it? Thanks.
It would definetly be worth finding out if Dr Krantz only looked at your spine for a leak, that is their specialty. I am sure they would have a skullbase surgeon referral to send you to if you needed it, sounds like they might not have looked in your head for the leak. The most typical test for that is a Pledget study. You very well could have self healed spending so much time lying down, taking just enough pressure off of the system and then the test was negative. I am concerned about your vision implications though. Having eye surgery without addressing your intracranial pressure issues will not be fruitful.
My surgery was done in Denver with Dr. Hepworth. He is also working with my skullbase CSF leaks.
Hope this is helpful
Thank you for the information. Two of my sons moved to Colorado after finishing college. Close to you. One in Federal Heights and one in Boulder. They love it there. Luckily I’m about 30 minutes from Duke.
One other thought, has anyone ever checked for papilledema? Swelling of the optic nerve that is often realted to changes in your intracranial pressure. It is easily done in office by either a Neuro optometrist or ophthalmologist. Great you are so near to Duke! Good luck!
I go tomorrow. I will ask about this.
Hoping for solid guidance from this visit 
good luck!
I talked Dr Andrew Coughlin/ Omaha into doing external. I have a small mouth, fat cheeks, cleft palette, TMJ, and a cheek joint that’s shot… arthritis and no miniscus probably due to cleft. At 21/2 weeks my scar is Amazing and I have done so well. BUT I suggested to him that he do more externally, He is adamant that internal is easier. He said he doesn’t usually take the tonsils and cuts beside them, and that makes it an easier surgery. So hopefully you have a surgeon you trust. I wish the best.
I had my tonsils out a few years ago. I am a little nervous about what to expect as they found a lot of nodules in my thyroid and they are precancerous. So they are also removing my thyroid at the same time. My ENT oncologist wanted me to wait and do two different surgeries But I wanted to get it over with at the same time. He said that is a lot to endure at one time. I hope I am not making a mistake.
I think internal will be fine for me as he says he is taking it all out and it can’t grow back. He says it’s safer as he does it with a robot hopefully preventing nerve damage.
I can’t figure out how to post a question. Did you have any trouble with your eyes? My pressure is on the high normal side and they can’t figure out which I am losing the optic nerve fiber and the left eye is almost gone. They are concerned about my sight and I have to keep getting checked. I think it has something to do with the Eagles but none of the doctors seems to know a lot. I’ll just be glad to get through the surgery. It’s getting closer now. It’s on November 11th.
Thanks,
Several have mentioned eye problems. I have developed a droopy eye, that I thought was sinus related, but after reading several Eagle’s post I’m wondering. Hoping I see a difference next week with that eye after surgery. However, yours sounds much worse than mine. Praying for you! When is your surgery date?
It is possible if the jugular veins are being compressed by the styloids that pressure can rise inside the brain (it’s called Intracranial Hypertension) , & that can in turn compress the optic nerve; maybe that’s what’s happening? Do you have vascular symptoms, dizziness etc.?
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November 11th (Veteran’s Day). I just went back for a follow up appointment at UNC Chapel Hill and they have an eye Doctor there doing research on Eagle and the affects on the Eye’s and my surgeon asked me if he could contact me and look at my records. I told her if it could help anyone else that would be fine with me. I hate anyon else to suffer more than they half too. It just seems that there is not a lot know about this. Thank you for your prayers. I hope you are doing well.