I met with my neurosurgeon, Dr C, after my ER Visit. Sadly, he said my surgery is considered a failure. I did go 2 months pain free, which was the longest amount of time ever in the past year. After the ER visit, I continued to have pain for about 3 more days and then it tapered off. Since then, the TN has flared up a few times, most being about a 5 on a 10 scale. Dr C said I could go back on my meds at the dosage prior to the surgery but I opted not to. I suffered through the pain a bit, taking about 300mg of Neurontin and 200mg of Tegretol two times a day and then stepped it down when the pain was gone.
The past two weeks I have taken doses of both when I've had a bit of burning but I am not taking the meds on a regular schedule. Those medications, albeit they did their job with taking the edge off, made me a zombie. I was taking such high doses, along with the added Topamax, that I was in a fog everyday. The side effects were horrendous. Since I've been off these meds (I first stopped taking them about 2 months ago - and then added them back here and there) my family has noticed a huge change in my personality and behavior. My mom was in tears saying she finally had her daughter back. I do feel like I am back to my old self. It's liberating. I feel like I missed my son's entire first year of life. Even after having this surgery I still have occasional attacks of TN, I still consider the surgery a success. Without it, I don't believe I could have continued to function. My liver enzymes were elevated from the meds and again, the side effects were no longer tolerable. The pain of TN was like being in a torture chamber. The combination probably would have rendered me crazy. MVD was a success to me.
I am supposed to have a follow up appt tomorrow with Dr C but I think I am going to have to reschedule it because I have been dealing with bronchitis (as is my whole family). I will decide for sure tomorrow.
I will also try to keep updating this blog more regularly. I know it's much easier to blog about TN when it's bad and then forget to keep going when things are good. Most of us are looking for the good when we google search so I will do my best to keep you updated.
I hope those of you who are struggling with TN continue to find comfort in this blog. Please also consider visiting the site, Living With TN - the folks over there are a blessing. I joined as the 68th member and now there are over 200. It's sort of like a facebook for people with Trigeminal Neuralgia.
Thanks for reading,
Misty
