Hi Everyone!
I know I haven't been on in a long time. I had my MVD surgery back on January 28th and here is my story...
I was extremely nervous for my surgery until the day of. On the morning of surgery I was surprisingly calm. When I woke up from surgery I spent one night in the ICU one night in a regular room and I was home!! I had read A LOT of stories about everyone's experiences with MVD and felt good about what to expect. I knew the first several days were going to be bad, but I went in knowing that I had already felt the worst pain there was so anything surgery brought me wouldn't be worse.
The doctors said they were able to find the compresion point without any problems and said I was most likely born with TN. In the ICU the pain was bad, but nothing that couldn't be helped with the medication. I had a lot of nausea from the pain medications, but once I was able to eat that went away. I was experiencing a lot of numbness in my check and tongue and limited movement on the left side of my mouth. When I left the hospital the movement was back, but I stil had the numbness. I was worried it wouldn't go away but they told me it was normal.
Once home I think I slept the whole frist week away! I noticed I had a small amount a fluid building up around my incision. I was able to easily control my pain with the medication they gave me and the stiff neck is what bothered me most. When I went for my two week check up they desided to leave the stitches in for an additional week because of the amount of fluid. They said the fuild would absorb and go away on its own. It didn't. At 3 wweks they removed the stitches and decided we would just watch the fluid levels bcause I wasn't having any leakage.
By four weeks post surgery I was still having horrible headaches on a daily basis and still spening a lot of time in bed. Half way through the week I noticed the fluid level around the incision was increasing. I called and made another appointment. Once their they told me I might need to go back into surgery to have the fluid drained. I swear my heart stopped when they said that!!! I was sent for blood work and a CT scan to make sure there wasn't any fluid inside the skull building up. After getting all that done I checked in with the doctor before goin home and was told they decided to do a lumbar drain the following week to drain the fluid instead of reopening my head.
Of course I went home and that night my incision started leaking, but stopped on it's own so I was told to just call the doctor in the morning. In the morning (Friday morning) the fluid started pouring out of my incision and I was admitted into the hospital that day. The lumbar drain was placed in my back...oh my god did that hurt!!!!!!!!! I was awake during the procdure, it was not fun. It felt like they were pushing sharpie markers through my back. For some reason it took them close to an hour to get the drain set instead of the 20 minutes they told me.
Once in place they drained 10cc of spinal fluid an hour for the first two days, then increased to 15cc for the rest of the time. I sat in the hospital for 5 days while they drained the fluid and then an extra day for evaluation. This week was the worst of it!! The headaches still persisted and i had to stay in bed all day :( By the second day of draining all the fluid around my incision was gone which then allowed my incision to really start healing.
I went home from the hospital on Thrusday afternoon and returned to work on Monday for the first time. I am still having headaches on a daily basis and taking vicodin for them. The computers I work on don't hellp them one bit, but I purchased a pair of computer glasses on the internet for $60 and they seem to help looking at the computers all day. I still get headaches, but I feel like the computers are aggitating my head any more.
I saw my doctor yesterday and they seem to think the headaches are still related to the surgery and think they are lingering because of the set back with the fluid build up. We are hoping they go away within 2 weeks. If I am still having them in a month I will go and see a neurologist who specializes in headaches.
All through this I have not mentioned once my TN pain...and that is because I don't HAVE ANY!!!!!!!!!!! I have not had any TN pains after surgery and all the numbness has also gone away in my check and tongue. Even though I am still dealing with headaches MVD surgery has been the best decision I have ever made!!!!!!
