One railroaded patient :(

General General TN & GPN (Old Site)
1

I have had TN for two and a half years. I had seen a neurosurgeon in April who offered me the choice of MVD or balloon compression. I said I really wanted an MVD (due to better success rates and finding the actual cause of the pain like an artery for example). So I went on the waiting list for an MVD and ended up last week in the ER in agony which meant I got bumped up the list and scheduled for an MVD this Wednesday (2 days ago).

BUT on the morning of the MVD the consultant turns up, declares that he is sure I don't have TN (hello, I've had it this long, I know I do, plus I've been diagnosed by a neurologist), that he thought it was atypical facial pain, an MVD won't do anything for me and a balloon compression would work and prove it was TN by knocking out the nerve, if I had pain still then it wasn't TN. I was absolutely stunned. So he changed his mind at the last minute, I felt all I could do was go okay, I've been in pain this long, I'll take anything and you obviously won't do the MVD. I called my husband and cried down the phone as I had psyched myself up for the MVD and wanted to find out what was causing the pain.

So I thought okay they need to consent me for the balloon compression (they had already asked me to consent to the MVD) and all of a sudden an orderly comes to push me to the OR and I said don't I have to sign another consent? And the anaesthetist said oh it has the same sort of risks so we just crossed out MVD and put balloon compression instead?! (Heck, even I know that's not right and I'm not a doctor).

So I went in and had it done. I was numb from the top of my head (if you drew a line straight up from my ear) to my chin with half my nose, half my mouth and half my tongue numb). I thought how much local did they give me, then a doctor came and went oh well it could be permanent, after all it's a good trade-off for the pain. EXCUSE ME?! Drinking with a straw, not kissing my husband properly, having a numb eye I could easily damage and bits that tingle or prickle is not my idea of a trade off, an MVD would of carried that risk but doesn't damage the nerve on purpose.

It's now 2 days down the track, my forehead, upper half of lip and cheek by my nose are still numb, some feeling has returned to the edges. How did people go after a balloon compression? I feel so bullied. And to top it all off I was stuck in the only non-single room when I am supposed to have a single one being a nurse at the hospital (so my case isn't discussed in front of the public) and got no sleep due to a lady who did things like sleep with the light on, be up half the night and demand cups of tea at 4 in the morning. So the whole experience has left me feeling really despondent :(

2

Oh and I don't get the reasoning, balloon compression doesn't prove TN as it doesn't work on all people with TN?

3

I had a Gamma, then an MVD on Sept. 2. I went in with that numbness and burning and pressure in my lower teeth. I have moments of feeling like it’s getting better and 10 minutes ago my lower teeth started to hurt. I have a superficial blood clot on my ankle annoying the hell out of me and I accidentally bit my tongue today so bad it bled. I threw my sandwich across the room. I did have bad days after the Gamma so I’m hoping my Trigeminal is throwing a tantrum. I am right there with you. Really. When they removed the staples they suggested a rhiziotomy. Now I’m really scared. Who do we trust? Does anyone really know what’s wrong with us? I feel like a lab rat. So I am so sorry that you feel despondent and realize I haven’t helped you at all. I’m sorry I dumped my garbage. My Gamma worked for a year. Maybe after your numbness is gone or lessens the pain will be gone. Maybe we will both get better. I pray every day for all of us who suffer. Tomorrow is another day. I just realized when I hit your icon that it is 2 mice. I thought it was a lady with a large green hat on. Ok no more oxy for me.

4

I have ATN which means an MVD was out of the question. I tried nerve block and it only worked tor two days. But, seeing that it did work, I was tested for getting a neurostimulator. I took the test and found that I was a good candidate. I had surgery 9 days later. I was given a local and given a light anesthetic. Stayed overnight and was home the next day. This procedure is/was experimental in 2013. It has relieved my pain on average 75-80%. At times I do get breakthrough pain for which I take hydrocodone and baclofen.

The procedure is expensive and most insurance companies will not cover it. I was fortunate that mine did. It was done at the U of Iowa and I was the 6th one to have this done in that experimental study by Medtronic. It is a different stim than what has been used in past studies. The breakthrough pain doesn't happen often, maybe once a week, unless there is a big change in weather.

5

Shoot, I am so sorry you have been through this mess. The release situation is strange. I wonder if that is common or if things were handled differently since you are a nurse there. They are such different surgeries with very different outcomes. It's sad that we know more about this condition and how to help us than the professionals who we have to rely on for help.