Trigeminal Neuralgia
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My husband has been suffering from facial pain for 2 years. Today we saw our eleventh doctor and he is sure it is Classic Trigeminal Neuralgia after the Pain Mgmt Doc and the Head of the Maxillofacial Dept at Loyola Medical Ctr, in Chicago said he didn't think it was. So Gamma Knife Surgery is the 28th of April. Anyone oiut there recently or years ago have this procedure and how are you doing? Please we would like all the help we can get. A BIG Thank You !!
1 like, 6 replies
army183 sandy38747
Posted
Hi Sandy
The saddest thing about your posting is that it took 2years and 11 doctors to get to this diagnosis. The best and clearest definition of classic TN (e.g. TN type 1) is the proof that the patient has an artery thumping away and compressing the root of the Trigeminal nerve. You only get this with a high quality MRI. Has your latest medical team shown that this is the case?
If it is then there are several options available including your gamma-knife and MVD operation of course. Each of these procedures have their own success rate and you need to be sure that you are doing the very option for the type of TN that your dad is experiencing.
Many people on here emphasise the importance of research, research, research before deciding. I'm my case it was obvious that most success would be likely from having the MVD. That was about 6 weeks ago and I haven't looked back. I know it's early days yet, but the prognosis is looking good. Of course, MVD might be no good for you at all. But it really does depend on getting the clearest/unequivocal clinical definition of TN first, then making the decision on what treatment to follow. I'm sure several people on here will say the same.
Good luck
Keep safe
Big D
joanne49021 army183
Posted
army183 joanne49021
Posted
Hello Joanne
Mine was done at Addenbrooke's Hospital in Cambridge UK. It was about 3.5hr and when I came round my neurosurgeon asked me if I had any TN pain - answer was "no". Hooray.
Was on industrial amounts of Carbamazepine before the op and so have had to reduce the dose gradually to avoid risk of a seizure. When I got to a very low dose, I felt some pain around my previous trigger point (top lip) now and again but not significant but my consultant said that was ok because I'd reduced the drug rather quickly and there was still residual inflammation/bruising to clear up.
So I'm taking a low dose (for me) of 200mg per day. Seeing consultant for review on 25th April. Head wound cleared up a treat, very quick. Had some waves of exhaustion for first 4 weeks or so and was not too good at looking right and left while walking! He said I was making usual progress and that I was not 25 years old, so stop moaning and get on with the expected recovery.
Hope that helps
Cheers
Big D
joanne49021 army183
Posted
mallory22442 sandy38747
Posted
It is my understanding that the only way to be sure it is TN is to have aMRI along with a MRA to see if an artery or vessel is pressing against the T rigeminal Nerve >Have u had this done?
army183 sandy38747
Posted
Looks like the concensus is growing - as we and Mallory say, you need a high quality MRI to confirm the vascular loop compressing the nerve. It's the only way ahead and based on that, you and your neurosurgeon consultant (and it should be the neurosurgeon rather than others in the clinical area) can make some considered choices re possible procedures that are available and the likelihood of success, including long-term outcomes.
Good luck
Big D (aka Metal Head)