I was diagnosed with GPN (possibly Eagles syndrome but know one in Australia really knows or has any experience). I am on Lyrica and while on it, my pain is under control., I have occasional sensation or very mild pain when I am run down or unwell but that is it. I have started to try and reduce my dosage from 300 a day to 275 a day and so far I am ok.
I wanted to ask you whether anyone has successfully weaned off their medication completely and found that the GPN just goes away (without surgery). I just want to manage my expectations.
Is it possible that I will be able to wean off Lyrica and be pain free? Does GPN ever just go away?
In my case it didn't. I just kept wishing year after year it would, but it didn't. It got worse. It was misdiagnosed as it wasn't heard of really, and never clinically reported in NZ since 1958, and that patient left NZ and had an operation in Australia without a known outcome (like most kiwis he probably just fell in love with the weather and decided to stay). Eventually it was correctly diagnosed and an MVD operation (NZ's 1st?) sorted it out. As the cause seems to be arterial pressure on the GP nerve, only a decompression, or nerve severance, will cease the pain attacks - if in fact it is GPN.
Thanks - that is interesting. My other question is whether doctors are recommending MVD or other surgery where the pain is under control with medication. My doctors are saying that surgery is last resort option only if medication stops working. This does make some sense but I am in my early 30's and don't want to be on strong medication for the rest of my life either.....
OK Jeremy heres the lowdown. If it is GNP it is highly unlikely to go away. Taking anti-epileptics as you are, is only numbing the hyperactivity of the Glossopharyngeal Nerve. The pain may be under control but the underlying problem still exists. Namely, an Artery pushing upon the Glossopharyngeal Nerve. No amount of drugs is going to cure that. I am a trained Assistant Anaesthetist and can tell you as a patient and Theatre practitioner, if it is GNP, an MVD was the best step for me. Consult with your Neurosurgeon, obviously, but my case is genuine and I came out with no residual issues. It is a risky operation and has a chance of Death on the table - but so do ALL operations (at various risk percentages) - the other option is of course, carry on taking harmful drugs over extended periods. Not an option.
Just as a footnote: Yes your Doctor is right in saying Surgery is a last option (as it is in most non-acute cases) but clearly his understanding of this condition is limited. (No surprises there as there is very little known about it anywhere - except maybe here on this site!) What in effect he is saying is 'until you have more pain attacks and I up your dosage, and get a nice list of costly consults to validate the referral, I can't refer you to a Neurosurgeon" (Stretching the whole thing out potentially for years as has been the case for many GNP sufferers here) Thats rubbish and I would demand a Neuro consult if you haven't had one. Find a doctor who will give you one and say why. You will need one eventually so it may as well be sooner right?
Michael
jleibs said:
Thanks - that is interesting. My other question is whether doctors are recommending MVD or other surgery where the pain is under control with medication. My doctors are saying that surgery is last resort option only if medication stops working. This does make some sense but I am in my early 30's and don't want to be on strong medication for the rest of my life either.....
Thanks. I have seen two neurologists and a neurosurgeon. The surgeon said he could operate but has never done one before and suggested there would not be any surgeons in Australia that has done more than one.....
Yes hes right there because it is very rare (stand up and take a bow) and he could talk to my Neuro.
I had mine done in Wellington 2005 with Mr Martin Hunn - I suggest your Surgeon contact him (he will have a directory) and have a chat. Martin had never done one before either but I put my (well-founded as it turned out) trust in him.
I have no hesitation or reservations in him discussing my case to help others.
jleibs, one thing to know is GPN can also be caused by compression or irritation on the GPN by the styloid process or stylohyoid ligaments (AKA Eagles Syndrome). So if you are looking for a surgical fit but are not sure where the problem lies, you need to find out if the problem is Eagles or irritation from an artery in which you would have MVD. Two drastically different surgeries.
I had surgery for Eagles and unfortunately it didn't help, but it has fixed the problem for many others. So before anything, I would look into Eagles first and rule that out. Here is a link to the most recent doctor list for Eagles which include 4 doctors in Australia. http://www.livingwitheagle.org/forum/topics/latest-doctor-list
Let me know if you have questions. I have been down your path. Still trying to figure out the cause of my GPN. No doc can find a compression and my Eagles surgery didn't help with my pain either.