Hi Jules,
You are right that permissible limit is 2.5 and over 3 cm it call long. But doctor examine buy touch inside my mouth but I didn’t feel any pain with it and may be so he told me that He is not feeling that you have ES. I shared info which I gathered from you and from other members of group, He impressed with the knowledge I shared then He send me to pain specialist and He doubted that my 9th nerve is pressing and He prescribed me with carbamazepine 200 mg. And also told me that take this for week and then come back to me , we will further examine and also will go for MRI if needed. Now I am confused what to do ?? I have started taking carbamazepine 200 mg since 3 days. What should I do now ?? want guide from you.
thanks Jules.
regards ,
samir.
An MRI can rule out other things, & there’s no radiation with an MRI, so it might pay you to go ahead with that. I’m a little confused why he’s changed or added to your medication when you’re finding the medication you were already on is helping? But it’s not going to hurt to try it , as long as you don’t find you’re getting side effects. (Carbamazepine can take a little while to get into your system to work, so a week is not really long enough to tell) If the medications help keep the pain at bay enough that your quality of life is good, then you could stay on them, & get on with your life… But on the other hand if it is the styloids irritating the nerves, that’s not going to go away, the medication is only masking that irritation, so the styloids could be causing more nerve damage… it is all a dilemma!
Having surgery is a difficult decision as it’s not without risk, not everyone opts for surgery, & if you’ve not got a definite diagnosis & that’s going to be a hassle to keep pushing to get one, you could decide to leave well alone unless anything changes? When I was first diagnosed with ES it was liveable with, then I started getting nerve pain, so got put on medication for that, & it helped enough that I was happy to stay on it & not think about surgery. Things were good for another year, but then another neck problem I had made the ES a lot worse & I got vascular symptoms- that’s what prompted me to have the surgery, otherwise I wouldn’t have had it.
Often the only way people can get a definite diagnosis is to have surgery & see what pain/ symptoms go, but if yours are under control with medication, do you want to take that risk? WE can’t advise you on your decision, it has to be yours to make, all we can do is give you food for thought, I’m sorry.
Don’t be sorry Jules. Its time for me to be thankful to you. I will go for MRI as you stated. And again it’s difficult for me to take decision for surgery when I don’t know I am suffering due to ES or GPN. so firstly I will find out what exact cause for pain in neck and will letter on decide about surgery. Will post my MRI report whenever I will do MRI and will discuss with you again. For now medication make me feel better. I can swallow without pain with the help of medicine. And I am 35 years , so going for surgery is again risk at this age as if surgery won’t go as desire then It would be great trouble for my family here. So its difficult for me to choose surgery at this early stage but if this pain won’t stop by medication then there is no other option left. Praying for all ES and other epidemic people they become normal as early as possible. God bless…Thanks Jules.
One thing to consider is that GPN surgery is brain surgery and much riskier than ES surgery. I would continue to look at the ES first or at least remind doctors that on of the ES symptoms is GPN and GPN surgery is much riskier. One person on our site was able to convince the doctor to do ES surgery first. The doctor agreed to do the ES surgery. It proved to be the right decision and the patient did not need brain surgery. I am sad that there are no good solutions in India. However, Jules idea to look for doctors who contributed to research articles may be a good start. I wish you the very best and glad that the antidepressant is helping at this time.
Please read this article. Carefully follow the flowcharts https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3644765/
That’s really helpful article, thanks!
Surgery is last option as per me and my doctor. And lastly given medicine is tegretol 200 mg working great for me so hopefully If this keep working fine i may not go for further treatment. But to be honest I am tired of all these medicine 
. They make me in hibernation mode for sometimes. I am taking two doses of tegretol 200 mg. Lets hope for the best. Have a good day Emma. Take care.
Really very important information. Thanks juliangeagle
I totally understand you not enjoying the side effects of Tegretol. Though I’ve never taken it I do seem to get side effects from many medications even over the counter ones. I hate feeling sleepy. Sure slows down productivity in a day!!