I have a surgical consult/phone appointment with Dr. Samji on May 14th and hoping he will remove the entire styloids and calcified ligaments. Did any of you have any long term nerve problems after having everything removed. Feeling a little nervous and also hopeful. Thank you.
I’m not sure if you’re asking if surgery has damaged nerves for members, or if nerve problems are not always resolved with surgery?
I believe compression of the trigeminal nerves caused my neuralgia- I don’t get the electric shock pains but constant aching. Amitriptyline helps alot, but it was worsening before surgery & I was getting tingling & numbness over my cheek & jaw line. After surgery I hoped that this would go, but although it’s improved, it hasn’t gone completely, so I still take medication. It was definitely worsening, so surgery has helped that. It does also seem to be linked to other neck problems I have, it can worsen when that flares up. I guess that the styloids can sometimes cause permanent damage.
But I also had vascular symptoms & they’ve improved massively, I’m so glad that I was able to have surgery.
As for nerve damage during surgery, there have been a few members who’ve had some facial paralysis, tongue problems and arm/ shoulder problems. These usually improve with time. Doctors will go through these risks with you, but most doctors monitor the nerves during surgery to check any stress on them- Dr Samji definitely does this. And with experienced doctors the risks are lessened.
I hope that your phone consult goes well & that Dr Samji can help you, let us know how you get on!
Thank you so much! I hadn’t thought about the issues that people have beforehand impacting it, and that is a very good point. I really appreciate a very thorough answer. I’m really looking forward to the phone consult as well and hoping that dr. Samji can help me. I will at least feel very confident and comfortable that I feel like I have the most experienced Eagle surgeon out there.
Dr. Samji did both my ES surgeries. My glossopharyngeal nerve was wrapped around my right styloid & had to be partially unwrapped so the styloid could be cut back. I did have paralyisis of the right side of my tongue for 6 mos. post, op but my tongue function was about 95% back to normal by 9 mos. When I woke up from anesthesia, Dr. Samji did tell me about my tongue. There was no way for him to know in advance that he would find that problem. I’m 4.5 years out from my first surgery now & all is well. I do have a little residual numbness from my 2 surgeries, a tender spot on my face near my jaw joint (only when I poke it…) on the right & first bite syndrome from the first surgery, but these are a small price to pay for my ES symptoms to be resolved. I, too, am thankful for having had ES surgery & having access to such an accomplished ES surgeon.
Thank you so much! Does he think that the first bite syndrome might eventually resolve? I am so thankful for your response as well as the other one. It is so nice to know what to realistically and potentially expect. I hope that your symptoms continue to resolve.
@ddemaso Dr. Samji did my left side. I had only a slight problem with the First Bite Syndrome and it only lasted about 2 weeks. I think it’s different for everyone who gets it, but Dr. Samji told me that if it develops, it is typically temporary. For what it’s worth, I had no other nerve damage, other than the expected neck numbness above the incision. I am almost 4 weeks post-op and am slowly getting some feeling back in that spot as the nerves re-grow. Almost all of the ES symptoms have resolved now but I understand that some people continue to see improvements for this first year after surgery. The shooting pains in face have completely stopped. Ear and neck pain are improving. Headaches almost gone. Importantly, I’m getting my life back. I’m off the blood pressure medicine altogether. I walked a total of 12 miles this weekend, went shopping, bathed 2 dogs, and groomed one of them. None of this was possible before surgery. I was blessed to not have nerve damage, but even those that have had this issue (that I know of) are generally still pretty happy they went ahead with their surgeries since their lives improved so much afterward. Best of luck with your phone consult!
As redbird773 noted, first bite syndrome usually only pays a brief visit to those who get it in post operative recovery. It is not unique to ES surgery but can occur w/ any surgery in the same part of the neck as ES surgery, or in the throat or side of the face. In my case it did not resolve, & now that I’m approaching 5 yrs post op, most likely won’t ever go away. It’s much less intense than at the beginning & some days I don’t notice it at all. I’ve learned that staying very well hydrated makes a huge difference in the pain level from FBS - most likely because my saliva is more dilute. A reason not to fear it is that it is a very temporary pain. It’s very intense for a few seconds then is gone. I could take a nerve pain med, but have chosen not to because this is definitely something I can live with & pales in comparison to my ES symptoms.