What kind of Oil do you use?
I use a brand called Re-Gen oil- Iām UK so not sure if itās available in the US. Bio-Oil seems to be a pretty common brand as well- anything which is for scar tissue.
@Crystald the doctor being referred to is Dr. Samji in San Jose, CA.
Iām glad I found this thread. I have surgery scheduled for July 16th with Dr lentsch in Charleston SC. He says he has done 75 eagles surgeries and my styloids are the longest heās personally seen. He is going to do both at one time and didnāt seem hesitant about it, I am.
His plan is to attempt to do intraorally first and if he canāt get to all of it, to go externally. Then just go externally on the other side. I also have a mass on the right side he is exploring. Ugh, anyways Iām so worried about recovery and was relieved that it would be a one and done kind of thing. Now, I am more worried and thinking about a second opinion.
A little back story my symptoms have been going on for some time now and in the last year alone pain when swallowing is so bad that I have lost over 55 plus pounds. I am miserable! Ear pain, neck and back painā¦ migraines that are horrible. The ringing in my ears make me go nuts. Just ready for reliefā¦ but swelling on both sides, how does one breathe 
YIKES! You do have some extreme symptoms but all sound like possible ES symptoms. I havenāt heard of anyone w/ back pain from ES but if youāre holding your head differently because of the pain you have in your neck, itās possible that your back pain is coming from having to support your head differently. Many people w/ vascular compression have migraines which sometimes completely subside post op & other times mostly subside (i.e.the frequency & intensity greatly reduce). Interesting that your swelling is so bad itās affecting your breathing but that can also be attributed to irritation the styloids are causing in your throat. Ear ringing should also be reduced post op. Your throat pain will possibly remain for a bit post op but should also go away w/ time.
I understand your hesitation in going w/ this doctor as there is NO WAY you should have to endure an intraoral attempt followed by the external approach if your surgeon canāt cut the styloid back enough. By the time my surgeon (Dr. Samji) had done 70+ surgeries he had a tried & true technique - strictly external, remove styloid at skull base & s-h ligament even if not calcified to help prevent regrowth & possible calcification later. He refuses to do both at once because of the of the post op throat swelling & requires 3 months between surgeries for bilateral cases. If you choose to go ahead w/ your current surgeon, request only external surgery & only one side at a time. The external approach gives the best/most complete access to the styloids & ligaments & also the best visibility of the nerves & vascular tissues in the neck. Your surgeon should be able to look at your CT scan & discern which side might be most problematic according to the angle & thickness of the styloids. Itās your body. Advocate for what feels safest to you.
A second opinion isnāt a bad idea but that would likely put surgery off, & it sounds like you need to get āthis party started.ā Keep in mind this is only my opinion (but I am very opinionated on these points because of my experience). I did get 2 opinions & my first surgeon offered me the same surgery plan as yours has. Clearly I chose the āsecond opinionā doctor to do my surgery.
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If you can wait for surgery a little longer, it might be an idea to maybe seek a second opinion? I do agree with Isaiah, it seems pretty extreme to possibly have 3 operations effectively in one go, that would presumably make the swelling even worseā¦ But there have been several members in recent times who have successfully had double op, I canāt remember who now, Iām sorry.
It sounds like your SPs are pretty long, so I hope you can get some treatment soon!
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Thank you, Jules, for your addition of the info that there have been several people whoāve had successful bilateral surgery. Usually these are done intraorally, as I recall,
but there have probably been some external, too.
Iām sorry you are going through this. I am a blunt person. Iāve never heard of your doctor and yet he claims to have done as many ES surgeries as the doctors who we all know here. For me thatās a red flag.
My surgeon told me he never does double sides at once because of the swelling. 2nd red flag.
When I asked my surgeon āwhy?ā He explained it was because of the swelling. It didnāt matter how you are getting air ect. The swelling can cut off blood flow - 3rd red flag.
Any cut to the neck causes immense swelling, so the āTry one way and maybe go another routeā should be avoided at all costs. -4th red flag.
Everyone here has better manners than I. Please find another doctor.
Something I havenāt seen mentioned is the damage that steroids can do. My pancreous shows signs of damage from the post op steroid. Itās reversible (in my case, but itās possible to have permanent damage) What your doctor suggested would require a large amount of steroids in recovery, which isnāt a good idea.
Hang in there. You made it this far. This is the time to fight just a little bit longer. I know thereās been some who say they are fine after double inter-oral, but Iāve read too many who had to get additional help later. That and the other red flags worry me considerably. Iāll pray for you to have a clear path to your answer and help.
Hi @Glahusky!
I can certainly understand your wanting to find some answers especially with the painful symptoms you are experiencing! I went to see your doc in Charleston last summer after being diagnosed. My styloids were 4.0 and 4.5cm at that time. He wanted to do the intra oral approach, however would leave 2.0cm of the styloid. That didnt seem to be an option for me if I was going to go through the surgery, plus from what Ive read here it is better to remove them completely in order to not have regeneration of the styloid. I visited another doc and he wanted to do the external approach. I chose to wait and see how I felt rather than proceed with surgery at that time. It is definitely a roller coaster with so many different symptoms and approaches. Currently, I have very mild symptoms. Hope you get relief and find a doc you are comfortable with.
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@MJB - This is an old discussion from 2018. If you donāt get a response it may be because @Glahusky is not longer participating on our forum.
Iām glad to know your symptoms are mild 
Thank you so much for bringing this to my attention.
Iām still trying to get familiar with navigating the forum.
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Navigating this forum is not for wimps! Itās taken me nearly 10 years to get as far along as I am & there are still things I have no clue about even as a moderator! 
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