So after my 20th MRI, I finally had the "correct" one done in London and my specialist has just rung to say that he's discovered an arterial looping around the nerve. I am in complete shock - after so many MRIs I'd 100% convinced myself they wouldn't find anything this time either. Shock no.2 - although I only have symptoms on the right side, the specialist has seen that the nerve and a vein are touching on the LEFT side and at some point in the future I will present with symptoms there too. So, I've been offered an MVD for the right side at the moment with the objective of placing teflon between the nerve and artery. He says he can do it as early as mid-January. I had a complete meltdown after the phone call and haven't stopped shaking since. He reminded me that I potentially face 'hoarse throat syndrome' should I go through with the MVD....I'm currently a part time teacher so that would in effect end my career. I am just so shocked.
Your thoughts please would help me make this massive decision. I realise most people want to have the MVD and I'm not saying I don't, it's just that I've lived with the not finding anything on an MRI for 4 years now and never having been a candidate for MVD until today. Might be worth mentioning that on a daily basis my pain is a 2/3 out of 10, rises when it feels like it and I'm on 800mg Tegretol and 10mg Amitriptyline and aside from the pain, I'd give anything to NOT be on medication. I've been on Tegretol 3 years now and it's likely at some point in the future it will stop working or I'll have to increase the doseage.
Sorry to hear about your pain it is a ++++ illness, I have had it myself since 2010. I am also on Tegretol 400mg at the moment but I have to up the dose when the pain gets worse, it would seem that mine goes in three to six month cycles. I think if I had a positive diagnoses and an offer of an opp I think I would take a chance and go for it. I, like you, live in the UK and it seems very hard to find a specialist who understands or has even seen another patient with it. Please let us know what you decide.
My MRI was read as negative for 6 years till an experienced neurosurgeon (Dr. Fukushima of Raleigh, NC) read it and saw the offending vessel. However, he apparently operates on the symptoms, not the MRI, which often is negative. I actually had 2 vessels putting pressure on the nerve, and my pain was excruciating.
As far as surgery is concerned, there are no guarantees: you might end up worse off, but I had a wonderful pain free result. I did have a lot of side effects including "Mickey Mouse" voice for months, but all of the side effects went away eventually, and my GPN pain disappeared completely, I'm now 2 years postop.
I'd do the MVD again. But it's your decision. Good luck!
Thank God they finally are providing U with MVD. I pary and hope this will help U with your pain.My husband was just told he has the same problem that u have and I am working with the doctors to tell them we dont want the med's they dont work just do the MVD. Good luck to you.
Granadam, bitter sweet news that is too familiar to me. I suffered, past tense, with GPN for eight years with MRIs that were inconclusive, until I went into NYC which houses finer technology then the suburbs I live in. City specialist detected healthy nerves in conflict with blood vessels. My pain was low at the time, but one hurricane and a bit of stress later, I was in an episode that was the deciding factor for me.
Like you, I teach for a living, middle school, and my voice is my livelihood. In my opinion, hoarse throat was the less of all possible side effects. I was blessed with it. For several months I had a Minnie Mouse voice. It was frustrating, but with speech therapy I regained my voice. I have a paralyzed right vocal chord, the side the pain and nerve were on. I use a personal amplifier and am back to work after a 10 month leave. Without the amp, I am fatigued and short of breath. Yesterday was my two year post MVD anniversary. I pray you have the same or even better results. I am completely pain free and med free. After 8 years of a plethora of rxs, it is a blessing to be of clear mind. Prayers to all who suffer in pain.
My MRIs were without any results for 6 years and then they found this vein sling touching my GP. I had the MDV in August, but did not help at all… actually it made things worth, now I have ear pain too.
One week ago I did my 1000th MRI and they found a vein wrapped around my trigeminal neve … nobody has seen it in the last 6 years.
Just because You have a vein in the vicinity of a nerve does not mean that this is the cause for your pain. But giving it a try is better then dining nothing.
But like you said, medication is not forever and there is not much choice if you are at a young age.