My surgery was on July 11th so it’s been a little over 3 weeks now and I am feeling great. I still seem to get tired and it is frustrating to me because I’ve always been on the go nonstop. Prior to my surgery I was extremely tired from my meds but now it’s a different tired – just run out of steam after an hour or two.
To refresh you on my surgery results – I had 4 compressed nerves and scar tissue on the lining of my brain I think?? that Dr. Casey cleaned up. As he got closer to my Trigeminal nerve the scar tissue was worse. My Trigeminal nerve was also compressed the worst by a large vein that drains the blood from my brain so it couldn’t be removed – he squished the vein down as much as he could and put pads in by that part of the nerve, which was gray. He said he also had two students who viewed the MRI and then viewed my vein compressing the nerve in the microscope so he could point out to them that the compression did not show on the MRI since only arteries show, not veins. That’s why he doesn’t take a lot of stock in what an MRI shows, except to rule out other things like MS.
I am on 900 mg of Trileptal now which is only half of what I was taking before my surgery and I don’t take Nortriptylene at all anymore. I hope to continue to reduce my Trileptal by 300 mg per week until I am off of it. Dr. Casey said I could go down faster but I still have a few symptoms of TN 2 so I’m taking it slow.
My TN 1 symptoms – stabbing in my ear and teeth are completely gone. My TN 2 is much better but my chewing muscles are still sore by the end of the day although not as bad. Best of all the intense pain in my whole right side is now gone when I ride in vehicles. That slight jarring was always the worst! I have a little bit of pain in my neck muscles and some slight discomfort at the incision yet but very little. I also have numbness on my right side, like I just left the dentist and everything is wearing off but I don’t notice it much except when I’m putting on my makeup or washing my face. That is slowly getting better. I take ibuprofen only once in awhile when my neck muscles hurt or I have a headache which is very infrequent.
I’m not back at work yet but I have been working a few hours every day from home. I think I’m going in at least a couple of days this week but plan to leave early. I don’t think I’m ready for a full 10 hour day but I’m hoping I can do it next week.
I feel more normal now than I have in 2 ½ years and it’s wonderful. I’m so thankful I took the advice of so many on this site and pursued MVD. It also helped so much to know what to expect with the surgery. This site also pointed me in the direction of Dr. Casey (KC Dancer in particular) so thanks again KC Dancer and all for the great advice and accounts of your surgeries!
What great news to hear that you are feeling great!! Dr Casey is truly a SuperHero in the world of face pain. It sounds like you have a great outlook! I am also a Casey Alumni, I truly believe that he can do more that the average Neurosurgeon!!
Continue to do things that make you smile, feel good, and rest!!! Brain surgery is a good enough excuse to take it easy!! There is so much healing going on that we really cannot see, or feel.
Enjoy every pain-less day, week, and hopefully months and years to come!!
So awesome Deej! You’re right it’s a different kind of tired…hope as each day passes you feel better and better.
Continue to take it easy and let your body be your guide!
Big ((( hugs ))) Mimi
Congrats! It is great to hear that you are healing well. Make sure to take it easy. You don’t want to overdo anything. I agree the tired is different. I too am coming down off of my meds. I am completely off of topomax (50 mg before surgery after switching from baclofen) and trileptal 2400 mg now (3000 mg before surgery). Keep on healing. We are on our way!
Hi!! Deej- How are you feeling? Every week gets better i hope!! I just “celebrated” 2 months, and I am still thrilled with my outcome. I hope your recovery continues to be easy!
I'm ok now but definitely not great. Yesterday was 6 weeks since my surgery and I am completely exhausted and had more TN2 pain this week then I have since my surgery, especially Tuesday and Wednesday. I'm not sure if it's the stress of going back to work that's causing it?? I went back full time last week so at 4 1/2 weeks after my MVD. I think it might have been a bit too soon but I felt guilty staying home when I could sit on the couch and feel so good. All I do is sit at a desk but I guess there is so much thinking and talking to people on the phone and researching issues, etc - just alot more stress! I have always thrived on stress but I probably rushed it.
My incision is also quite sore now - I'm pulling my stitches out daily now that were supposed to dissolve. Has anyone else had this happen? I guess they don't dissolve for some people. It's red and irritated but I sent a picture to Dr. Casey - he wasn't concerned and explained it was the stitches and they act like splinters coming out. I think it is slowly getting better now.
I am still on 900 mg of Trileptal and hanging in there with that. When I went to see my neurologist on Monday, my blood pressure was way down and my sodium levels were up so that was good news.
I still have numbness on the right side of my face but it doesn't bother me much - just annoying once in awhile.
So hopefully next week will be better. Tiffanie I hope you continue to do great. Keep us posted on your recovery too! Thanks to everyone else for the well wishes too!! Kathy I hope to hear from you again soon as well and everything is continuing to improve.
So sorry to hear this Deej. Hopefully it’s just a temporary set back.I could see how the stress of work could fire things up a bit. Hang in there, rest up this weekend. Maybe ask your boss if you could work 1/2 days next week?? Do you use lidocane patches for your type 2 symptoms? KC dancer told me about them, they helped me. Praying for you.