No problem Monica.
Neurosurgeon:
I was VERY nervous picking a neurosurgeon. I started by looking at the list here and then doing an online search. I wanted someone that was interested in TN and that was experienced in doing MVDs. I chose my surgeon partly because on his webpage he had a section where he spoke about his interest in TN, he had patient experiences and that he had studied under the Dr that invented MVDs. When I met him he explained why he was interested in TN, how many he had done total, how many he did per year on average, why he did surgery in the hospital that he works from and his surgical plan. (He does from 1-5 MVDs per month. He worked out of that hospital because they had 2 operating rooms that were made for brain surgery and had everything he needed and would need if there was an emergency. He also liked that hospital because it had a Neurologic Intensive Care Unit where all the nurses were trained for patients with neurological trauma or post neurological surgery. They knew what to look for in his post MVD surgery patients. I had a nurse and an aid that were assigned to me and no other patient. It was amazing. While I was in the hospital, a total of 7 days, he did 3 MVDs, including me.)
Prepping for surgery:
I packed a bag for the hospital. Actually, I overpacked. But it worked out because I was in hospital for 7 days instead of the planned 4 days due to a CSF leak. I took underwear, yoga pants, socks, a sports bra, a razor, deodorant, lotion, face wash, Chapstick, phone charger and something to read. A neck pillow is a must! It will become your best friend. Because I had a lumbar drain for 4 days, I had a catheter and couldn't use underwear. But that's not the case for everyone. I was allowed to wash my hair on day 6 but only with a no rinse shampoo that they provided. The day before surgery I was told to shower and wash my hair, not to put any hair products or body lotion. Because I knew they were putting in a lumbar drain, they had me scrub my back with 2 antiseptic pads that they had provided me when I went for pre admission testing. When I went to the hospital, I was told not to wear any jewelry.
Before surgery I saw 5 doctors that I can remember. My neurosurgeon saw me and marked my body to make sure they did the surgery on the correct side. I also saw a Dr that was going to check my hearing throughout the surgery. I want to say audiologist? She told me that I would have something in my ears that would check my hearing throughout the surgery and some other things in my face that would probably leave black and blues. (Which they did.) I also saw the anesthesiologist and his THREE assistants. Then there was pain management and one more but I just got a total blank between the time I started this paragraph and now. Ugh. It'll come back to me.
After surgery:
I woke up very confused and in pain. They will not give you pain medicine unless you ask for it. I had a nurse that stayed with me from the moment I woke up in the post-op room to the moment I got to my room in NICU. He would give me pain medicine every time I asked. They don't want to give you too much at a time because they don't want you to fall asleep while you're recovering. After surgery I went straight to get a CT scan. It's all very foggy but some Dr's came to talk to me. I was told later that it was pain management and that they were trying to figure out what medicine to give me. After my CT I went to my room. They had me hooked up to machines to check my vitals every 5 minutes. I was also hooked up to a patient-controlled analgesia (PCA). It's a machine that has IV pain medicine that you control by pushing a button instead of the nurse coming in to give you medicine. The machine allowed me to give myself medicine every 20 minutes. Now, you're not giving yourself a big dose of medicine like a nurse would. For example, a nurse might give you 1mg of Dilaudid every 4 hours if you ask for it. A PCA might give you 0.2mg of Dilaudid every 20 minutes if you press it. I wasn't getting enough pain relief so they ended up changing it to a basal rate. (A constant dose of pain medication even if you do not push the button on top of the dose you press for. I believe mine was 0.5mg per hour on top of the 0.2mg I could push every 20 minutes.) This shows the importance of telling your nurse if you are in pain and if the medicine is helping you or not. Also, your neck is going to hurt. A lot. At some points my neck hurt more than my head. Ice packs became my best friend. I would positions them around my head and neck and support them with pillows.
Sleeping:
I was not able to sleep on my left side at all. (It was a left MVD) Lots of pillows are very very helpful. Just ask the nurse. I needed them to help support my head and my neck. This is where the neck pillow comes in handy. For some reason my head felt ridiculously heavy for almost 2 weeks after surgery. 3 weeks later and I am finally starting to be able to sleep on my left side for a few minutes but with lots of pillows and a muscle relaxer.
When it comes to the TN pain, I woke up from surgery miserable and in a lot of pain from them drilling a hole in my skull, but I could tell the pain in my teeth was gone. I was so happy! 3 days later then pain in my cheek and nostril was gone. A week and a half later the pain in my eye and eyebrow disappeared! 2 1/2 weeks later the ear pain improved about 70%! It just gets better every day! I'm still dealing with some hearing issues and a CSF leak in my ear (which I think is why I can't hear) but I'm so happy because there is SO MUCH improvement.
I hope I covered what you wanted to know. If I missed anything let me know. I don't mind sharing at all.
(The 5th Dr will come to me. lol)
