Hi everyone. I’ve been gone for a while but have been reading posts to find out if anyone has experienced the same. I had my MVD in January 2013 and all pain disappeared. I had side effects from the surgery and was off all meds and pain free. I had my life back and I was So happy. Then in august 8 months after surgery I was walking the dog (rottie) and pulled and pulled on his leash for him to come. I had not clipped his leash on properly and, like being in a tug of war and someone letting go, I flung backwards hitting my head on the concrete path. I didn’t black out, but was scared. About two weeks later I started to get small TN pains again, but in a different location. Within a few weeks the pain was so bad that I started back on tegretol. I saw my neurosurgeon in February and he looked at my MRI results and said all was good. Within a couple of weeks I was onto Neurontin, and dose escalated to 600mg tegretol and 300 mg Neurontin. By May the pain was pretty bad even on the meds so I went to see a neurologist for pain relief. He looked at the MRI scans painstakingly and went and got a second opinion on the spot from neuro-radiologists. He came back to tell me he had never seen it before, but it seems my trigeminal nerve is stretched, which would have happened when I fell. We adjusted my meds and I went on my way. The pain has continued to get worse and this week it was so bad that I called him and I am now on 1200mg tegretol and 600mg Neurontin. In the last couple of days I am getting facial spasms whenever I talk, eat etc. this morning I woke up and couldn’t talk due to the ongoing pain, and when I tried to take my meds, the TN spasms wouldn’t stop. Out of 10 this is a 9, because I’m scared there may be a 10 coming. I’ve increased Neurontin to 900mg and am waiting for it to kick in.
We have discovered that I have a prominent vein running down this side of my face, which has recently branched out where my pain is. The doctors didn’t seem concerned about it and didn’t know why it was there.
Has anyone had there pain returned after MVD after head trauma? I don’t know what to do and cannot live on liquids forever. I am so scared. I am waiting to try and get an urgent appointment with my neurosurgeon in the next couple of weeks.
This is such a cruel affliction.
Update…things got incredibly worse since my last post. I was unable to drink 2 days ago, eating impossible. I think the Neurontin has kicked in a little but not enough. I only lasted 2 hours at work today. Went to my GP and he called my neurologist while I was there. He has added Kepra to my cocktail. Still waiting to get urgent appointment with neurosurgeon.
Has anyone ever been on Kepra? I am combining it with Tegretol slow release and Neurontin (gabapentin).
Gen, I am so sorry you are going thru this again after an MVD. Have you tried Lidocaine patches or cream? It seems to help some here and your GP can order it for you.
Oral gel tooth ache gel on your gums it hurts really bad when you first put it on but it can give you enough relief to eat but it does make the food taste icky. I am so sorry that you had this happen to you good luck I hope you can finding something to fix this horrible pain
Thanks guys. Will try both. Have managed to book in for emergency appointment with neurosurgeon Friday. In the meantime he has increased my Neurontin. Am annoyed to not be able to work, but unable to even walk today…vibration from the walking??
I wonder if that is from the Neurontin increase?
But shouldn’t an increase in pain meds reduce the pain I’m experiencing?
Sorry, I read it as you had vibration from walking...thought the med could be causing internal vibration (I get that sometimes).
Oh ok, no when I’m walking sometimes I’m getting pain in my face. It’s horrible.
Visit to neurosurgeon yesterday. He has booked me in for immediate MVD next Wednesday, first surgery of his day. Seems his second look at my MRI shows that Teflon pad is not looking to be in ideal position and could be touching nerve in wrong position. Plus artery could be re looped over from my fall. As it will be second MVD all extra risks apply so I’m very very nervous. I think also nervous because I remember from 18 months ago first MVD. I really do love Australia’s health system in that I could get immediate help. And this will all cost me $775 for doctors bill. We have private health insurance which will cover hospital costs and anaesthetist, and any tests done while in hospital.
What are the costs in other countries? And waiting times?
Gen, I'm so glad your neuro is quick to respond.