MVD or Not

[Rooberri]

This is all new to me but we are on the road to making some choices and I've been reading a lot but would like to know from everyone here:

Why did you choose MVD or why didn't you?

My daughter is sitting on go to have this done and we don't even have a confirmed diagnosis yet.

I see that some take meds and just deal with it and some do the MVD.

I would love for you to share your thoughts.

Thanks

Sheri

[crysopac]

Our reasons may not be the same as everyone else's seeing as how young Rae is.

1. If the medicine is working then there is no reason to even think about an MVD the possible complications just arent worth it.

2. She has no obvious compressions. As long as they cant see the compressions and the medicine is working, I am not putting her at risk with a surgery.

3. There are very few doctors who have experience with doing a MVD on a child.

Those are our three top reasons. I hope this helps.

Crystalina

[ella138]

Sheri, please dont look to MVD to be the ultimate answer. It is a long road till you ever have to think about that. Crystalina is right, if the meds work, you stay on the meds until you are pain free and can think more clearly and not make decisions out of desperation.
MVD is the most invasive surgery for TN. If Lauren has Atypical TN then the success rate for MVD goes down. You are jumping way ahead of yourself. I sent Lauren an email this morning with some more detailed explanations.
Has one of the doctors suggested MVD to you or are you coming up with that idea from doing your own research?
Hang in there

[bilateral]

Hi Sheri,

The first thing to do is to get the pain under control. If you have a confirmed diagnosis, then you really need to do a lot of research before making decisions.
When you are in pain, it's not a good time to take decisions about major surgery.

There is a good book available from the Trigeminal Neuralgia Association called "Striking Back". This will give you a great deal of information.

There is also a lot of information in this forum, so take your time finding out, especially all the threads at the top that give you various links.

The MVD is major surgery and there are potential complications/risks that are not to be taken lightly.
Some people have surgery and are ok, ie pain-and drug free.
But complications can and do occur and that is one of the reasons I am waiting for now.
The drugs keep my pain under control and while there are also many side effects from the drugs, for now I shall have to live with those, even though I don't like it.

But I don't like the idea either for someone to bore a hole in my skull to operate in such a very tiny area on my brain.

May be once the pain gets so bad that I can no longer tolerate it or when I have to take so many drugs that I no longer have a quality of life, I will think differently about the MVD.
Also in my case it may be slightly different in the sense that I have bilateral TN, which means that I have a lower chance of the MVD being successful.

If you were to decide to have the MVD, it is very important to take care in selecting a neurosurgeon. It has to be somone who does these regularly and who has a good successrate. It is of course important too that the neurosurgeon and you have a clear understanding of what you both mean by "successrate".

Take care,

Anne

[SwTPeA]

I chose MVD because meds were not controlling my tn. I have type 2...My tn2 is still with me but Ive had no electric shocks or any other symptoms from the type 1. I would choose it all over again...
Laura