I’m new on this site. Have just been diagnosed with ES after having to CT because of glossopharyngeal neuralgia that was excruciating. After starting on Tegretol I am symptom free. Should I be looking for a surgeon if I’m currently not having any symptoms. After reading everyone’s symptoms, I feel lucky at the moment, but very afraid of the future. Thanks for any and all advice.
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Hi gigal59 ~
It would be good for you to have a relationship w/ a good surgeon who is willing to do ES surgery in case your symptoms do flare up again & are no longer well-controlled by Tegretol. This may or may not happen but if you are prepared, the hopefully you will be able to get your ES taken care of more efficiently.
Unfortunately, we don’t have any doctors on our list in your state, however, Dr. Daniel Nuss in Louisiana comes highly recommended by Emma who is one of our members. I’m including the link to our US Doctors’ List below for you.
If you cannot or would prefer not to travel for surgery, try to find an ENT skull-based surgeon in your area. These are often throat & neck cancer specialists. Some maxillofacial surgeons & neurologists are also skull-based surgeons.
https://forum.livingwitheagle.org/t/us-doctors-familiar-with-es-2019/4752
I found Amitriptyline helped my symptoms really well when I was first diagnosed, so decided not to have surgery, as there are some risks after all, & so left it for a year or so. Then after that I had other neck problems & developed vascular symptoms so I decided to pursue surgery, & felt loads better. You may find that the tegretol helps for a long time, & that you are happy to keep on it, although sometimes these medications can become less effective. Also something to consider is that if it is the styloids irritating the nerve & causing the pain, over a long spell they could permanently damage the nerve & so even if you had surgery you could find the nerve still gives you pain. I do still take a low dose amitriptyline as I still have some TN, I don’t know if it’s just from the ES as there does seem to be a link with the other neck problems & muscle tension…so it’s a decision only you can make, but as Isaiah says it wouldn’t be a bad idea to start looking for a doctor if you can with insurance etc. in the mean time.
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Hi gial59,
I concur on starting to develop a relationship with a surgeon. I started my search when my symptoms were bad and saw several ENT’s…and over the last 5 or so years have developed a relationship with my current doctor who just did surgery on mine. I received steroid/lidocaine injections for some time. At least for me, I had to develop a level of trust in the physician and get to a point where I felt bad enough to pursue surgery and for some life events to settle down so that I could surgery was an option. Hoping that the Tegretol continues to benefit your symptoms!
Best wishes,
Kay
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Thank you for your advice. I’m going to talk with my ENT and try to get a consult with one of the physicians on the list.
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I can only speak for myself and can’t answer for you or anyone else, but I would avoid surgery if I had the pain and other symptoms under control. Personally, I’d go with the least invasive measure necessary. If my symptoms were out of hand and I had no way to control them and I weighed the risks/benefits of surgery and decided the potential benefits outweighed the potential risk, I’d choose surgery.
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Hi gigal59, How much Tegretol are you taking & how many times per day? How long before you were symptom-free on it? thanks
How much Amitriptyline did you take daily Jules?
Aiden
I was started on Tegretol er 200mg, twice a day. It was effective on my glossopharyngeal neuralgia pretty quickly. I have been symptom free since then.
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Thanks Chrissy,
I plan to avoid surgery until I have more symptoms, but it is still worrisome thinking about it.
I take 20mg a day, that’s enough, I’m lucky. I do occasionally have to up it to 30mg but tend to notice palpitations then, so get it down as soon as I can. Up to 50mg can be taken for nerve pain.
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ok thanks Jules