For those that have had a MVD and a csf leak- does anyone else have pain with shocks over the top of the head? This is a new pain since surgery. I’ve had 3 in the same incision and a 4th scheduled 1/9 for another leak. He put me back on gabapentin on the lowest dose of 100mg three times a day. It’s not helping, I’m sure because I was on 400 mg 5 times a day before! At that dose- it worked ok coupled with others but cause major talkativeness, and a boldness that was not my personality, fatigue, and major brain fog. Any help appreciated
@April May I ask what prompted you to think csf leak? On the 18th I am 3 months post op. On the lower part of my scar I have hard swelling that they think is my bone but I know it’s not. I’ve lived in this body 33 years now. I know my anatomy. But I’ve blown that off. I’ve also blown off a decent amount of severe double vision spells lasting hours at a time. I finally actually ran into my primary dr at work and mentioned it to him and he told me to contact my neurologist immediately. So I did and I must go in tomorrow. I’m a bit nervous since I still definitely feel like I’ve had brain surgery in many ways. I haven’t really been nervous about anything for quite a bit now which was great for me and having anxiety but now I’m feeling a bit nervous. I hope it’s nothing but was told I may need a scan. I definitely can’t take any more time off work right now that’s for sure. I’m so sorry you have a leak… I pray you will be okay and all runs smoothly.
I had a bad leak, but they put a spinal tap & drain ( had to lay prone in hospital bed for a week). They re-sewed the incision point, I went home and had no,pain such as you describe. The surgery ( my second MVD) gave only about a 50% healing from type 1 pain. This was in 2002. I now have type 2 symptoms about 95% of the time, snd it’s liveable. Each day of life is a blessing. Stay strong in spite of this beast, my friend.