I am 5 weeks post MVD tomorrow, and while I'm so happy and thankful that most all of my TN pain is gone, I am really slow to recover from the surgery. My neck is so sore and stiff, and scalp still hurt and sting and ache from the incision. I swear I can feel the screws underneath, and those are such sore areas. And I get headaches and nausea at night a lot, but don't think I have a csf leak or anything like that. It's healed nicely, but it's the underneath that is so painful. Also, I'm so overly fatigued that I can only do around the house or walk for about 15-20 minutes before I have to rest, and I still require naps, and sometimes my eyes just close, and off I go. Also, my 11 yr old son and I have been blessed with an awful stomach bug, so you know those and brain surgery just don't mix....I have my follow-up apt next week and was scheduled to return to work after. I cannot see that this will be possible for me....I need more time have a desk job, it is high stress, and I find that it just all throbs when I get upset or have to yell downstairs to call on one of my kids. I do not regret having the surgery one bit, just think I'm a slow healer... Has anyone else taken a long time to recover from their MVD the way that I am?
I'm so sorry that you are having a hard time with your recovery. I'm 6 weeks post MVD right now so maybe I can help a little. First, every "body" is different and I'm sure that having that stomach virus certainly hasn't helped at all. I'm a bit of the opposite of you. I recovered from the surgery part way better and faster than I thought but was still having shocks here and there up until about 2 weeks ago and now am having a different type of TN pain that ranges from 0-9 and feels like a vice has hold of a couple upper teeth and cheek area. Thankfully my bottom branch of TN has completely disappeared. It is gradually fading out and now I'm on day 7 of 0-1 "pain", although am still on my full dose of 1200mg Tegretol. Trying to wait patiently for my nerve to heal and keeping as much stress out of my life and resting as much as possible - per instructions from both my neurosurgeon and neurologist. 8-12 weeks is how long they expect it to take to exit all the way.
I might offer you a couple tips that helped me earlier on. I had to sleep at a serious incline for about 4 weeks. I would try to go back to sleep in my bed (so much more comfy) but then would wake up with a headache that would linger all day. I stacked up about 6 pillows on my basement sectional that "sloped" so that I could sleep pretty comfortably with about a 30% incline. It also helped the fullness, popping and clicking in my ear to exit faster (that's gone). You might be doing something like that already but if not, try it. For my neck muscles, I would walk on the treadmill for 20-30min. (not super fast) and then after my body was nice and warm, I would do neck stretches that I learned looking on a physical therapy website. With body relaxed and shoulders down, gently look up, look down (try to tuck chin to chest), look each way side to side, tilt your head side to side. Try holding those stretches for 20-30 seconds as much as you are able to stretch. Try to do this several times a day after you've been a little more active. You can do it standing or sitting down. This helped my neck muscles a ton in just a few days. The last tip I have is walk (you might be doing this alreadY). I know it's freezing right now but find access to a treadmill if you can. I started walking on a treadmill 4 days after surgery at just 2.5 mph for only 10 min and then built up to 4 miles at a nice pace before I moved on to more intense cardio. Don't over do it of course. My rule was that if it made my head hurt anymore, I would stop and fortunately that never happened.
Prayers for you! You will get there, I promise :).
Yes! I had a very, very slow recovery…I would get so frustrated reading of others who were able to do so much more than I …patience is NOT a virtue of mine lol.
I felt less than, thinking something was wrong with me and would try and push myself, BIG mistake…in fact we are ALL different and our TN as well as our lives are different, so all these things factor in, my TN pain was gone instantly, but I was sooooo low energy, I could only walk 15-20 minutes at 4 months post op, prior to that it was 10-15 min only. I didn’t start to feel like myself and fully recovered until about 5 months post op and then my pain started up again, slowly…
We’re all different and as hard as it was to recover slowly, in hindsight I wasted a lot of mental energy worrying about how slow my progress was…
Listen and let your body guide you…it will heal in its own good time.
Huge (((( hugs )))) Mimi