Hi there, I am new to this site and it is good to find others who have the same condition as me!
Generally I manage my meds OK and it keeps the pain at bay, but every now and again it flares up a little stronger and I can only just cope.
I was wondering if anyone had any tips on dealing with this?
When it flares up talking can be difficult and sometimes swallowing too.
On a lighter note: I went to the pharmacy to pick up my partners meds. as I spoke to the girl behind the counter my nerve went into overdrive!! I cough and choke when that happens, they were very concerned - one went off to get a glass of water while the other came round the counter and put an arm around my shoulders! So embarrassing - when my nerve settled a bit I apologised and explained that happens a lot but I'm not dead yet!
See a good neurosurgeon and get a good MRI if you haven't already. If this is a compression problem from a blood vessel it might be surgically curable. There are risks, of course. I suffered for 6 years, the pain got so bad I was starving rapidly despite tegretol... I had MVD surgery and the pain is gone. I am still recovering but the longer you wait or put it off with a compression problem, the harder to recover. Best wishes for you.
Thanks Vicdoc I have has an MRI but they said that everything appeared normal so surgery was not an option, just pain control. My latest attack has lasted 12 weeks with the last 2 being the worst, however today it has been good so think I may be going in to remission. The sad thing is each remission period is shorter and each flare up lasts a lot longer! So will have to see how I go on :)
Purplevant - The same thing happened to me. I had two MRIs (one regular and one high res at Johns Hopkins) done and they told me that both were normal. Fortunately, my boss's sister happens to be a neuroradiologist and she reviewed all of my images for me. Low and behold, she found a vessel on a crash course with my left glossopharyngeal nerve, which none of the other radiologists had noticed. Even after talking with the radiologist at Hopkins and specifically pointing out the vessel to him, he refused to acknowledge that the vessel might be causing my problems. I then had a third MRI done (also at Hopkins) and the report for that study noted the presence of the vessel, but concluded that there was "no convincing evidence of neurovascular contact". After getting that report, I started looking for a neurosurgeon to discuss my options. The first surgeon I met with said that he did not believe this was a neurosurgical problem and basically said that I needed to just keep taking my meds and deal with it. I can't even tell you how upset I was since my life was barely livable at that point. However, I did not give up, and the next two surgeons I saw said they thought they could help me. I underwent MVD surgery with Dr. Anthony D'Ambrosio on December 26. After the surgery, he told me that there had been a substantial artery pressing on my glossopharyngeal nerve, and that the nerve was so compressed that it was visibly bent. Everything went great and I am now home recovering. I still have some pain and difficulty swallowing, but it is nothing compared to the agony I was in before the surgery. Keep fighting and don't give up until you find someone who will give you the care you deserve. Good luck!
thank you minnette so good to hear of some one who has the same condition and how they cope. I was in the UK when I had my MRI done, apparently he was the GPN specialist for the region, so I guessed he would know what he was looking at. My GP also studied the scans and said he couldnot see any obvious cause. I am recently returned to Guernsey and my GP seems to be OK. She has said to continue with my meds and see how I go, but is ready to discuss what we may do further down the line. Now I am armed with more info!!! lol Thanks again and may your progress be good and pain free
I had an MRI in 2007, nobody saw anything wrong. My neurosurgeon looked at it and he saw the problem. His office told me that many times you cannot see an issue on the MRI. The vessels and nerve are rather small.