Anyone in the UK been treated with MVD despite having a normal MRI?

General General TN & GPN (Old Site)
1

Hi, anyone in the UK had an MVD, or about to have one? I am in the limbo position currently, meaning I have had a 'normal MRI', showing no compressions, but I have classic TYPE 1 TN, which has taken a turn for the worse recently - probably with the bad weather starting - and is giving me a lot more pain than it was during the summer.

My neurologist has written me off, and laughed in my face when I asked about getting an MVD done. I am getting a new neurologist and I intend to request a consultation with a neurosurgeon, but I am far from convinced that I want to go down that route; I just want to know if it is actually even open to me.

However, I am aware that it's better to treat with MVD sooner rather than later; that the op works better if you catch the disease early on, so I do want to know it's there as a fall-back position.

What I want to ask is did any of you get your MVD despite having a normal MRI? Or were you all 'blessed' with a clear compression showing on your scan? Any information on my likelihood of being considered or what the NHS policy actually is most gratefully received.

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After reading almost daily here for 4 years, my guess is that about 70-75% here showed no compression.

For my MVD
I had two that he found in my head…would not have shown on regular MRI.

I had total faith…that something was zapping me with TN1.!

3

Hi Kc - absolutely. That was my thought. It seems to be far more common for people to have all clear MRIs than to show any compression, yet to listen my ex-neurologist you'd think it was all done and dusted.

So how did you get put forward for an MVD? Did you ask for one, or did your neurologist recommend you to a neurosurgeon for one or what? If they recommended it to you, how long had you be suffering before they suggested it?

Kc Dancer Kc said:

After reading almost daily here for 4 years, my guess is that about 70-75% here showed no compression.

For my MVD
I had two that he found in my head…would not have shown on regular MRI.

I had total faith…that something was zapping me with TN1.!