Please give advice. I’m scheduled for an intra-oral styloidectomy on Friday. I had my preop appt with the physician today and as he was going over the CT scan again it became clear that my styloid process is buried very deep with the jugular vein right on top and way too close to the carotid artery. He’s concerned intra-oral would not be good due to risk of hitting the carotid artery and death. I’m having another CT scan with contrast this time today or tomorrow to see more. Likely will need the lateral, external surgery instead which my doctor has done and is comfortable with generally. However, the positioning of mind make harm to the facial nerve more risky. Now I’m nervous as hell on what to do. He seems to suggest that the risks are high just to manage pain. I can see his point and yet I cannot live with this much pain forever. I’m 42 years old and hurt all the time. I can’t sleep due to pain and I can’t do anything fun anymore. I work and I attend my sons activities. The rest of my time is spent on the couch, in pain, with ice or heat. And the pain has just continued to slowly worsen over the past two years. I can’t lift anything, can’t do some basic things. I’m not sure what to do now. Any thoughts? Advice?
MANY people on this forum have had vascular ES where the styloid is pressing on the jugular &/or carotid arteries. Your doctor has made a very wise decision to re-think his surgical approach as the external approach will allow him much better visibility & access to the area where the styloid & the vascular tissues lie. If he is experienced (& it sounds like he is), he should be able to do the surgery w/o causing long-term damage to facial or lingual nerves. My surgeon actually puts nerve monitors on his surgical patients so he knows which nerves he’s working around at a given time. Ask your surgeon if he does this.
A post-op lip droop is not uncommon, nor are partial tongue paralysis, first bite syndrome, facial numbness, etc. These problems generally resolve w/in the first 2-3 months after surgery but can take up to a year as nerves are slow to heal. I had tongue paralysis on the right side as my glossopharyngeal nerve was wrapped around my right styloid like a vine & had to be partially unwrapped so the styloid could be shortened. I’m 95% recovered but it took about 9 months (had my surgeries in 11/14 & 8/15). I also ended up w/ first bite syndrome which hasn’t fully resolved but is certainly tolerable compared to my “ex” ES symptoms.
Your situation does sound precarious, but the only way to fix it is with surgical removal of your elongated styloid(s) & stylohyoid ligament(s). I do not believe you will regret having surgery. As you said, you’re barely functional now. There is a trade off at some point where you must decide whether the possible risks/consequences of surgery (which could be none when all is said & done) outweigh the pain & dysfunction you currently suffer.
Though surgery is a scary thing, if you approach it with a positive mindset & trust your surgeon to do the best possible job, it helps relieve anxiety going into surgery. There are many, many more surgical success stories on this forum than otherwise.
I hope this is encouraging information for you as that is my intent.
Thank you. That’s very helpful and I will definitely ask him about the nerve monitors. It was a lot to take in today when he was talking and I was unprepared since I went in expecting a very different type of appointment. I have contrast CT in the morning and will meet with surgeon afterward. This time, my best friend is coming with me to listen to the information, ask questions and help me decide what to do. Hopefully it will be easier for me with someone else there.
I feel for you as it does all sound worrying. But given that your symptoms are worsening, & it doesn’t sound like you have a great quality of life right now… I put off the decision to have surgery because the pain was not as bad as many on here, only to find I began to develop vascular symptoms after a year; a CT with contrast showed that the styloid processes were compressing the jugular veins bilaterally. I was feeling so bad that it meant the risk of leaving the styloid processes in actually outweighed the risk of surgery IMO. I’m not saying that you will develop vascular symptoms, but given that your styloids are that close to the jugular & carotid, it is a possibility, which hopefully the CT with contrast might shed some light on, & this might have a bearing on your decisions.
It’s a good idea to take your friend, it is alot to take in by yourself. If your doctor isn’t confident doing the surgery, then would it be possible to seek someone even more experienced? I know that would mean travelling, which might not be an option, not sure of your situation?
God Bless & I pray that you can feel confident in whatever decision you make.
I just had my intraoral surgery a little over three weeks ago. My styloid was compressing my internal carotid artery and my symptoms were awful. Since the surgery have been having complications with opening my jaw as wide as normal, which I have been told is due to scar tissue and rare. I have been given exercises to do and should be back to normal within six weeks. The point in sharing that is to tell you that despite my new issues that I need to resolve, I am soooo happy I had the surgery. I no longer have the chronic pain that was severely effecting my quality of life. I can play with my kids and my mood is so much better. I hope this helps and will be praying for you! Sonja
Thanks pinkeagle. I’m glad to hear that you are feeling better after the surgery. I hope to have that one day as well.
Hi Pinkeagle, I hope you’re doing well and improving with each day following surgery.
I read your posts on your pre-surgery symptoms and they are very similar to what I’m experiencing now.
I’m looking at having intraloral surgery as soon as I can and wanted to see if your surgery improved many of you symptoms such as ear pain, neck pain. I also have started suffering from BMS. Any comments and advice you might have would be really appreciated as I’m nervous but know I need to have surgery. Also, were your styloid elongated or calcified. Thank you and sending you all my blessings xx
Most of my symptoms are gone, but not all. I feel so much better than I did before surgery though. The neck pain, eye pain, stabbing pains in my ear and jaw are gone. I am still having ear pain, but the Dr. said my ear canal was irritated during surgery and would take some time to heal. I also still have tinnitus and BMS. The tinnitus seems better than it was, but the BMS is about the same. I am having trouble with Trismus from scar tissue from the surgery and am not sure if these things will get better as I continue to heal. Overall, I am so glad I had the surgery. The chronic neck pain and other symptoms were really affecting my life. I wish you the best and will be praying for you! Feel free to ask me anything else. This forum has been a blessing to me and I am happy to share my experience. Sonja
Thank you so much Sonja for sharing your experience and agree that this site has been a blessing for so many of us.
I’m really happy to hear that your pain has been greatly improved and you are much better for having surgery! The pain can be unbearable at times.
I’m sorry you have struggling with trismus and I hope that with time and after your nerves have had time to settle, this also improves. Did you Dr give you any indication as to any treatments that you can do to help with your jaw? Also, does it impact with speaking as I’m a bit concerned as I need to talk a fair bit with no work. Thank you so much for being there and supporting myself and others going through this journey.
Thank you! He has me doing some stretching exercises. I also made an appointment with a jaw specialist to rule out any dislocation because when I open my jaw (now about two fingers wide) it opens at a sideways angle. I also forgot to mention that my styloid was elongated and my ligament was calcified as well. My right side is the same, but I’m leaving it be for now because my symptoms are so much better. It is touching my jugular in the right side, but not compressing as of yet. My left was compressing my internal carotid artery.
My speech is minimally off because part of my tongue is numb. This is another thing I was told will get better with time. I was also not aware that swallowing can be difficult after surgery. They told me that to some degree you have to relearn to swallow. I’m four weeks post op and can eat most foods. Sometimes water goes into my nose when I drink, but it’s much better than the first couple of weeks
Hi Pinkeagle, my sincerest apologies for my delayed response as I has been travelling the last few days.
Thank you for explaining in more detail your recovery post surgery, all of this helps in understanding what to expect!
It sounds like overall you’re doing well post surgery. I understand from what other members have reported that it takes time for nerves to heal after surgery and that it can take up to a year for to continue to improve.
My main concern is to get the styloids removed as much as possible and to improve the pain. Have you found that surgery has reduced your pain and you feel better for having it? I’m sorry if you have already said this, but I have been struggling with dealing with the daily pain and seems that you did find relief from this. Thank you once again!
No problem at all! I have definitely had relief and am glad I had the surgery. I hope you have peace making your decision and hope you get relief as well!
I had surgery done Aug 24, 2017 and still pain in throat, jaw and ear.
Diagnosed with TM Jaw pain & gone thru therapy. They figure tissue damage due to scar tissue in throat due to 2 1/2 yrs before diagnosed & ES surgery.
Been doing phys therapy for TM jaw pain for 10 weeks, but tissue issue hasn’t gone away and still right ear pain. My Dr. is trying just about anything he can think of at this point to kill the nerve/tissue issue pain.
Hope you are doing better. If you’ve got any suggestions, please let us know. I haven’t found much to solve this & Drs don’t know how to solve it either. Like Jules says - maybe just takes time.
Didixon- have you seen MusicGeek’s posts about cold laser treatment? She tried it to help with scar tissue & it did help. Just wondering if that would be a possibility for you?