HI I am a neurologist and can help you answer questions.
Hi some of your meds I do not know, as I'm in the US. Endp and Mersydol?
Endep is elavil (amitryptaline)
Mersydol is tylenol with codiene no caffiene?
any way, I read your history, and am available to discuss this with you on a chat line, so I will wait in case you get contacted and return to chat
So you are a woman, no age given, who presents with right sided trigeminal neuralgia for 20 years, s/p retromastoid craniotomy without significant relief, although you state it has resolved (on its own?) over a 10 year period. you do not mention trigger for the attacks, whether they are the same on each side, or if you are a high strung obsessive personality type, of have a family history.
Very intelligently, after presenting with bilateral symptoms of facial pain, thought to be trigeminal neuralgia, you were scanned to exclude MS
You mention a cluster of blood vessels (an arteriovenous malformation?) a capillary or cavernous hemeangioma? The exact position of this vascular anomaly is not given, and actually might be critical in the evaluation of this problem. You mention that you have had a needle ablation proceedure, it sounds like on the right side only, alcohol ? something else? anyway, if you feel that this was the effective procedure for the right side, you might consider if for your left.
Let me give you my answer. I hope you read this and then get back to me for questions, or please hit the accept button if you feel I answered your question as that is how I am compensated for this work
Well, I am an adult Neurologist, I do experimental neuroimaging research, but I did my neurology residency and some fellowship training at the Univ. of Pittsburgh, which is where Peter Jannetta MD, the neurosurgeon who invented the retromastoid craniotomy as the definitive treatment for trigeminal neuralgia worked. I worked on his floor during my rotation in neurosurgery, and took care of patients from around the world who came for his surgery. Now the surgeons are spread out around the world, So as an acute intervention, based on the fact you cannot put your face to the pillow, lyrica doesn't work, I assume you have tried meds like trileptal or tegretol, you are on pain meds and amitryptaline probably at night, none of that works
I would consider a retromastoid craniotomy on the left after an evaluation of that blood vessel mass you describe, because if it is at or near the pontomedullary junction, it needs to be addressed as it could actually be the reason for the bilateral symptoms you describe, because actually bilateral symptoms are rare.
You may need a cerebral angiogram/venogram depending on what this looks like on an MRI, because an MRA probably would have too much artifact to detail its spread.
The other possibitlity for treatment would be that described initially by Dade Lunsford, from Karolinska Institute in Stockholm. and that is the Gamma Knife or colllumated gamma radiation to the gasserian ganglion on the left, instead of a needle ablation procedure. Are you familiar with gamma knife? Ask me questions if you are not., and I will return to answer them
I hope I was able to answer your questions, please again ask more questions as I will switch this to the question and answer part of this program, or please hit the accept button if you don't need anymore information, and good luck. Dr. Frank T.
Gamma knife is a piece of cake. It is about a tenth as bad as the needle ablation. There is no pain. You have this huge device which looks like a CAT scanner, that has a helmet on the end of the gurney you lay on. You stick your head into this helmet. It has like 60 high energy linear accelerator tubes on the helmet, they look like slender beer cans,(well you don't see that part because it is in the machine) and each as an extremely powerful xray emitter in it. The computer can swivel each tube to colimate the beam from all of the emitters to focus on a single point. Did you ever see the death star in Star Wars, I think they had the concept in that movie. Anyway, you get blasted with an enormous dose but in a 1 to 2 mm spot, with no collateral damage as they say in the war effort. Put your head in the scanner, wham, and you are done, like going to the dentist, but much more serious. The thing about gamma knife is that it is the "do no harm" type of treatment, because if it works, great, but if it doesn't you still have sensation on the face, there are no serious complications if done correctly.
Ask me more questions, tell me where you live in Australia and I can try to find you a location to get zapped, no I mean just talk to a neurologist about getting zapped.
Or you can come to the US?
Please hit the accept if you feel I answered your question, you can still come back to chat as much as you like. ok? Wow, you have a great family history, I have to research what has been done as far as the genetics of tic Dr. Frank T.