Hi everyone,
Has anyone heard of Anesthesia Delarosa after MVD?
I’m 11 wks post surgery and I am in more pain now. Not TN pain but my lips, inside of mouth and half of tongue are burning constantly, 24/7. I’m starting to feel worn down.
Hi Denise, unfortunately I am well acquainted with AD. I have had 5 MVD's and at no time was AD explained to me, and it has gotten worse with each MVD. It has been explained to me now (FINALLY) that is was caused due to the MVD and damage that subsided from the procedure. I agree with you- I think most days its worse that the TN pain, but after a while it all feels the same. ITs just burning, vibrating, hot, hellish, non- stop pain. How can one head have so many rare syndromes fighting with each other right? I use a dish towl filled with 5# rice and sewn on the ends to provide pressure to the burning spot. So I lay it right across my lips, jaw, cheek etc. I even sleep with it on. The weight seems to help with the "nothingness" feeling that comes with not being able to stop- or quiet the pain. I am sorry that you are experiencing this. I also take 3600mg. Gabapentin, and 600mg Tegretol, and I go up and down on the Tegretol because it seems to help the most with the AD. I also take 60mg. Cympalta just to name a few. I get Tegretol toxicity sometimes so we have to back down on the doseage and go up again once I get feeling better. Hope some of this helps. Hang in there.
I had my MVD in 2006 and now suffer with AD, at time I feel like I am used to the pain and other times I can’t. I now have anxiety from it and especially at night getting to sleep was horrible. So, now I take Ambien to help with my racing thoughts at night, it helps. For the anxiety I take Xanax low dose. My neurologist put me on dilantin 300mg, Nortriptyline 50mg and MS Contin 15mg twice a day and that helps control the pain, unfortunately the burning and tingling and tightness in cold weather there is nothing they can do for. This is very frustrating to deal with and I am sooooo sorry you have it too! Prayers are with you as I know what you are going through! Take care and look forward to hearing updates from you!
Rachel