So I'm now about 3 weeks post-op from my Balloon Compression and so far, other than the residual pain from the Shingles I aquired from it and the swelling, it doesn't seem to have worked. Infact, I have experienced electrical shocks from the bottom of my right eye through my top teeth on the right side. My main problem is still viciously apparent in my right temple and today is a bad flare-up day with both the V1 and V2 nerve, so I think I'm going to safely assume that the BC surgery did no good. I am going to avoid the gamma knife surgery at all costs because frankly, I've read too many reviews about it and it does more harm than good - especially if you have already have had a BC. So that's out of the way. All that seems to be left is a second MVD, which at this point I'd gladly accept.
Currently I am being 'weaned' off of Kepra 500mg 3x a day and being put on Carbamizopine 200mg 3x a day. So far, I am begining to start adding the second pill (been on one for the past week) and I am starting to see the side-effects that made me put this medication on the AVOID AT ALL COSTS list. You see, when I was first diagnosed about 1 1/2 years ago this was the first medication I was put on. Within 3 days of taking it, I had severe confusion, dizziness, muscle twitching, joints giving out (I fell multiple times because my knees weakened) and generally felt like I wanted to kill myself. I told my neurosurgeon all of this and he did avoid it until recently. He thought that my other neuro put me on too high of a dose too quickly, so he wanted to try doing it slowly. I reluctantly agreed. It's been a week on one pill and I'm started to feel unnatural irritability, shaky, dizzy and have nearly fallen at least twice. It hasn't even touched the TN pain either.
I'm going to give it until this wednesday until I call my neuro about my issues (if they continue) and schedule an appt. for another post-op and possibly a pre-op for my second MVD. Any thoughts about how to better tolerate Carbamizopine? Because this medication blows, especially taken at night - It makes me an insomiac. Help!!
That is so sad the BC did not work for you. I had the BC three weeks ago after having suffered with TN for 5 years. I was maxed out on Tegrotol, trileptal, neurotin, and topimax (taking all four anti seizure meds everyday) and they were not effective. When I came out of surgery I knew I had immediate relieve. While my right side is still somewhat numb and I have inflamation in my gums and mouth and can't chew yet - I feel heavenly. My neurosurgeon has done the BC since 1996 and has only had one patient it did not work on and he stated that that patient probably did not have TN - that it was probably shingles, nerve infection or some type of tramatice nerve damage - he has only had one patient return for a redo of the procdure after three years. If I have to have it done every year I would do it. I wished that everyone could be as receptive to this procedure as I was. I wish you luck in the future and hope you find a solution. I had forgotten what it felt like to live without TN and what it felt like to live without all those meds everyday - May God Bless You
i have chronic shingles (went in) and sever temporal pain v1 and v2…teeth right side etc. i take keppra tid, valtrax and dilaudid as needed. i will friend request you and message you …what is bc surgury…so sorry did not work. i did have cyber knife few yrs back and it worked for about a yr and a half …maybe more. right now, nothing can touch my face. hardly water to wash. i feel and understand for you. i have been having more breakthru’s of tn, not shingle flare ups…they are not seen anyway since they are inside my head and ear. only viral s/s when full blown shingles attack and SICK with TN with it.
#Robin Lawler, BC is the surgery where they insert a long needle into your cheek to your trigeminal nerve, thread a balloon catheter into the needle then inflate it on the nerve for about 90seconds to scar/damage the nerve so it doesn't receive pain messages. It has a tendency to do more harm than good, like the gamma knife, since you're hurting the nerve and thus maiking more pain. I'm still recovering from it and dealing with swelling from both the surgery and the shingles. Sorry about you're shingles and your TN. :(
#Donna, thank you for your story. Is it still successful? I wish I could find something for relief and hopefully if I can get my second MVD done this coming week or so and get that relief. God bless you too!!