Hello. And congratulations in considering this brave step.
I had MVD surgery last July. I was truly frightened, but found that I felt desperate to improve my quality of life so that I could continue to work and be active. I had never had any surgery before and thought it was a huge leap to consider brain surgery. Just thinking about it sent my heart racing.
So, I needed to deal with my fear.
First I got my affairs in order, my health care directive and even let people know what I wanted if the small percentage chance of death applied to me. I tried to complete those items quickly and then moved on to positive visualization for my surgery.
Before surgery I benefitted from listening to the CD, "Meditations to Promote Successful Surgery" by Belleruth Naparstak. Even as I was lying on the gurney, being wheeled into the surgery room, I found myself relaxing a bit remembering the guided imagery I had practiced several times leading up to the surgery. I found I could take interest in the people around me and found some humor in something that felt so bizarre even while still being a little afraid.
I relied a lot on my own spiritual beliefs and practices. And asked my church community for prayers.
In the week of the surgery, I gathered with a few friends along with my husband, who, throughout the previous two years I had been able to share deeply from the lonely place we seem to experience with TN. I told people I loved them.
I asked two friends to stay with my husband as he vigiled in the hospital while I was in surgery. I was worried about him being alone. I felt better knowing our friends were with him.
I also purchased ahead of time all the meds I was going to need to combat constipation. I had a plan in my mind since in my preop appointment the nurse recommended this. During this appointment, I asked a lot of questions regarding what I would need to do when I got home. What could I eat? How much could I lift? When can I go back to work? When can I climb stairs? When can I drive? etc...
I also prepared a bunch of mashed sweet potatoes (a favorite) that I could eat when I returned home. My husband organized friends to help with meals.
My husband and I spent the night in a hotel near the hospital the day before the surgery. We didn't want to have to deal with a commute. We also went out on the town the day before and had some fun.
For me, these actions before surgery helped me feel as ready as I was going to feel.
After surgery, they woke me up without pain med. which is important for their assessments. The headache was not fun. But, TN pain prepares you for handling pain. The doctor then was able to give me pain medication. The ICU nurses assured me this was not the time for heroics--I needed to stay ahead of the pain by being honest so they could administer the pain meds. Not having the pain actually helps your body heal faster.
I was sent home after two days. The second day I was at home I walked a half of a block with my husband. I would increase this distance a little bit every successive day. I continued on pain medication and I continued on the anti-constipation regimen. I also would put ice on the wound, a practice started by the nurses in the ICU as well as an ointment given to me at the hospital.
I was surprised that I did not want to read. I tired very easily. I just had to listen to my body. The healing journey is unique to each individual. So, I listened to audiobooks. I did not even want to watch tv or dvds. Thankfully, I had checked out a variety of CDs, dvds and books from the library a few days before the surgery.
People came to see me. I needed to ask that only one person at a time come. I found it difficult to track more than one person at a time. Visits were short at first because I would get so tired. I slept a lot.
I had lots of questions after surgery and was able to call and later email questions to the healthcare team.
So it was slow go for me. At six weeks out from surgery, I went back to work part-time. I was totally off heavy duty pain meds by that time. Two weeks after that I neared full time hours, but still was needing a good break around lunchtime so I could nap a bit. I felt ready to drive after two months.
During this recovery time I still encountered fear with every little pain I had. I also experienced grief. I tried not to bury these feelings. But I also, began remembering all that I was grateful for. I began focusing on the little joys of being at home. I began counting my blessings. Gratitude has become a very important practice for me.
I am very grateful for all the care I have received. I would say I am 90% improved. I still have some pain but it is much less and is managed by ibuprofen/tylenol. The tegretol was ruining my life just as equally as the pain. I no longer am on it. I still have some numbness on my scalp in the area around the incision. I have not had any of the extreme pain on the right side of my face since the first week after surgery.
In short, the MVD surgery was the second best decision I have ever made; the first was marrying my husband.
Wishing you peace in these days ahead.
Marie