I have been looking for a group and maybe someone who can help me, encourage me, maybe even have the exact post op (MVD) symptoms. I am 9 weeks post op. According to the NS my Trigeminal nerve was encapsulated by vessels and the amount of work he had to perform was unusual and unexpected. Well, my condition now is also unusual and after so many tests (blood, lumbar punctures, MRIs) the drs are at a loss and are hopeful that merely time will return me to a full functioning active mother of 4. Here's my situation...I lost full facial feeling to touch on my right side, including tongue and teeth. I have trouble speaking and eating because I cannot feel my tongue, I still have pain, and my right eye lids droop and are hard to keep open or closed. I have a "tingling" in the upper part of my face and head that sometimes drives me crazy and honestly because I cannot feel myself scratch I have made some pretty bad sores. I'm just looking for anyone out there who may have had similar results.
Oh my! do they think this is temporary? Is NS one with many TN patients? If not - Do you feel you need a visit with a more renowned TN NS?
I am so sorry to hear this. It can be a temporary thing, lets hope it is. Are you able to relax at all? I don't think I would be able to. I have 2 little girls, and know how much it takes, I cannot imagine 4.
I will keep you in my thoughts, and stick around, there is a wealth of knowledge here.
I similar results but I had the cyberknife treatment. I've been numb for about a month. My biggest fear initially was that I'd bite my tongue, lip, or cheek or hurt myself and not know it. Now I fear it is permanent. But I prefer this over the pain. Good luck, and let me know things progress and I will do the same.
well, I hope you're improving. I am not. In fact the TN pain I felt initially is breaking trough as I am weaning off the post op pain and muscle relaxer meds. I have been having a hard time with my neurologist and finally "fired" him when after telling him about the tingly/itchy/crawly feeling that seriously affects me he submitted some lab requests which included one for illegal drug use!! My Neurosurgeon is taking care of me pain wise or trying to and taking care of my needs as related to leaves from work and things, but he is no longer looking for answers, in fact, he suggested I look for second opinions because he is at a loss. My PCP is now making me an apt with a neurologist he knows and asking him to review my surgery minutes as he believes I am suffering nerve damage. Has your balance come back? Have you had any eye/vision problems? I have started speech therapy to help me speak without the ability to feel my tongue/teeth/mouth on the right side.
I have read so much on this site, and honestly, if I had read all of these things before the surgery I may have chosen to wait it out and deal with it through pain medications longer.
Again, I hope you're doing well :)