My last (and only) post was a countdown to my MVD surgery. On May 21 I had my MVD performed by Dr. Ian Dunn at Brigham and Women's Hospital in Boston. I will just come out and say right off the bat that this was the best thing I could have done for myself and for my family. I've gotten my life back and feel like my old self again. I'll start with the beginning. This is just my experience, how I went through things and what it felt like for me. Every person is different, heals different and responds to treatments differently but hopefully this will give some of you some comfort and maybe some hope regarding your TN.
Leading up to the surgery I was calm, even looking forward to it. Each time I would have one of my TN shocks I would think "Yep, get it all out now you rotten, worthless nerve. It's only a matter of time till you won't be able to torture me any more!!!" The day before the surgery is when my anxiety kicked in. Mind you, I've never had anxiety before in my life and thought "WTF is this?????" I started worrying what if I didn't make it through the surgery, what if I had some sort of cardiovascular accident, all sorts of foolishness that had never crossed my mind before but then again, it's not like I had ever had a major surgery before either, so I guess it was to be expected. Regardless, I was able to sleep that night and was up at 4:00 am to get ready to go to the hospital. Part of the preop prep was having to bathe with Hibiclens soap for 5 days prior to the surgery. Good Lord does that stuff stink. The morning of my surgery I had bathe literally from head to toe with it, even my hair. This made a good hair day virtually IMPOSSIBLE but I managed to work something out where I didn't look homeless. My husband got me to the hospital at 5:00am and that's where the real fun began.
First was the usual preop stuff, blood pressure, some labs, etc. Then we were brought down to the preop holding area where you get to put on a couple of johnnies and those socks with the traction strips on the bottom. Gorgeous, I tell ya!!! Then an IV was started on one hand, then on the other wrist an arterial line. The hunt for my arterial line was MISERY. Yes, they numbed me up as best they could but SHEESH. The other fun part of the arterial line was having my hand put in a splint so I essentially couldn't move it. I know, I know, it was to keep the line stable but really? ANNOYING! So anyway, the IV and line were started, I was hooked up to the heart monitor and had one of those O2 saturation clips on my finger. (By the end of my hospital stay I would grow to hate those stupid things.) Dr. Dunn checked in with me and my husband finally had the opportunity to meet him and the go ahead was given to start giving me the happy juice. I gave my husband a kiss and a wave goodbye and off I went. Admittedly, I was scared but I thought to myself "Well, you're pretty well hooked up now, I think you're kind of committed to doing this" and just went with it. They rolled me in to the OR, I remember them putting the mask on my face and telling me to count backwards from 10. I think I made it to 9........
What seemed like 10 minutes later it felt like there were people yelling at me to wake up, that the surgery was over. All I knew was that I had an oxygen mask on my face, I was sweating like it was my job, my head was freakin KILLING me and what the hell was this thing trying to crush my skull????? I'll be totally honest, it was awful. When I sleep I tend to run hot, so apparently anesthesia puts me on "sauna" setting. That wasn't the awful part of it though. The awful part was my head. It hurt like hell and I had this big, stupid tourniquet-like dressing around my head. Apparently it's supposed to keep cerebrospinal fluid from leaking and also to help keep the swelling in your head to as much of a minimum as it can. You know, nothing really important or anything. I was in misery though. My head was killing me, I was convinced this foolish dressing was going to either crush my head or at the very least leave me with a skull shaped like a kidney bean and I felt nauseous. So nauseous that *KAPOW!!!!*, throwing up. Then a little while later, *KAPOW!!!!* again, and again. Apparently there were a few things going on here. According to my awesome nurse, Jerry, #1 where this type of surgery is performed in the brain it can cause motion sickness type feelings, #2 they need to keep you on a pretty minimal amount of pain meds so they can check your neurologic function what seems like ALL THE TIME and #3 this is an extremely painful surgery so really, give me just one of those issues and I'll probably toss my cookies, but three? I was doomed to puking. They were giving me as much in the way of pain meds as they could and anti emetics and.....yeah.....still puking. I did have one fellow tell me that if I could I should try not to throw up because it does increase pressure in the brain and they want to avoid that. Yes, I understand that, excuse me while I vomit in front of you. At this point I seriously began to wonder what I had chosen to do to myself. Did I make the right decision? My poor husband was sitting by my bed just holding my hand, alternating between listening to me whine and listening to me snore. Again, my awesome nurse Jerry was so helpful, reassuring my husband that yes, I did seem to be in pretty rough shape but this was normal for this procedure and considering how painful a procedure it is I was holding up really well. (That's right, an amazing tolerance for pain RIGHT HERE!!!) I was just about 45 minutes in to being able to sleep when Dr. Dunn came bursting in, all full of smiles and wanting to chat. I wanted to bite his face. This is the person that did this to me AND I was told that I "might have a big, fluffy dressing on post op but only if it's necessary and only for a day or two". This was no fluffy dressing!!!! Had I not been essentially strapped to the bed with about 87 wires leading to about 54 machines I probably would have chased him from my room when I asked him when I could get the dressing off and his answer was "In a week. *smile*" A WEEK!?!?!? Listen, I may have just had brain surgery but that did not effect my negotiation skills. Once I stop throwing up we'll have further discussions regarding the length of time this thing keeps residence on my head. He did at least tell me that I did have a vein pressing on two spots on my trigeminal nerve, that the nerve was turning dusky because of how long this had been going on and that he thought the surgery went great. My feelings at that time were very different, but I'll just chalk those up to being miserable at the time. I may have even taken his name in vain a couple of times.
Finally after about 5 hours I sent my husband home, got some water down and became emotionally attached to my emesis basin. However, that's when I came to a few realizations, the neuro ICU is a real lonely place and I was so uncomfortable I couldn't sleep. Because of the pain in the pressure in my skull I could only sleep on one side or sort of on my back and any time I moved it hurt. I was also hot as hell still and just had had enough of being in a hospital bed. My night nurse Diane got a recliner for my room and helped me transfer to that. Finally some relief!!!! I spent the entire night in that chair, dozing and sulking. What did I do to myself? Did I make the right choice? Will this get better? Oh good grief, I was just such a Poor Me it wasn't even funny. As the night went on though I began to notice something. The pain in my head was starting to go away. The right side of my face was numb--pretty much just like when you go to the dentist and get a novacaine shot, just on a larger scale--and I hadn't had a single jolt from that rotten trigeminal nerve. What was honestly causing me the most pain was that foolish dressing!!!!! I began to be able to move without feeling like my head weighed 100 pounds--maybe it was down to 75 pounds. Around 7:00am was when I took my first walk around the ICU--seeing folks that were in much worse shape than me also helped give me a better perspective about what I was going through. I knew I looked ridiculous, I knew I was still in a good amount of pain but I had CHOSEN to have this surgery, a lot of these people hadn't chosen to wind up on a neuro ICU. The day went on, I was feeling better and better (watching Jerry Springer will do that for me), I had visitors in and out and was given the clearance from Dr. Dunn (we were friends again, but the negotiations were still going on over the dressing) to go home the following day if I felt up to it. Both myself and my husband felt much better and I was transferred from the ICU to the neuro floor for my last night in the hospital. Once I was settled in my new room I was out like a light from about 7:00pm till around 6:00am. Dr. Dunn came in for a final check on me, I had negotiated him loosening the dressing and being able to remove it on Friday (it was now Wednesday). I had a fabulous, uneventful trip home and was overjoyed to sleep in my own bed.
One little tidbit here for all the folks that are equally as vain as me. Once the dressing is off you can't wash your hair or get the incision wet until your stitches come out which for me was 10 days after the surgery. I put my poor husband through the ringer, convincing him to wash my hair for me while I kept the surgical site dry. Oh the lengths I will go to for good hair!! You can shower, but a shower cap is mandatory. Also Dr. Dunn did have to shave part of my head. It wasn't a lot, it was all behind my ear and if you were to look at me you honestly wouldn't even know I had surgery.
Now for the post op details, for the first few weeks I did have a lot of dizziness and I got tired over anything and everything. One of the things you have to do is get up and move every hour so you don't develop a clot. My husband and dog would take me for walks around the block and that would essentially wipe me out until it was time to walk again. Showering wore me out. Sitting up wore me out. Just remember, IT'S BRAIN SURGERY. I know I was getting frustrated with myself over not being able to do things that I was able to do preop. Forget about the whole surgery thing! I should be able to do whatever I want!! Ugh. Patience is very necessary at this point. I know I was sleeping a lot more than I usually do when I first came home, I couldn't lift anything heavier than a gallon of milk and I couldn't clean my house without wanting to pass out. Again, PATIENCE. As I'm about 6 weeks out now I'm doing much better. The dizziness is essentially gone. I've still got numbness in my face, but that is slowly getting better. I'm able to do a lot more but there are days when I still get tired. On those days I have to just suck it up and take a nap for Pete's sake! One thing I haven't had is ANY trigeminal pain. As far as that goes I am 100% thrilled with the results from this surgery and Dr. Dunn is a miracle worker and has the patience of a saint for dealing with the likes of me.
At this point I'm feeling as if I've gotten my life back. I can have dinner or a conversation with my husband without wanting to cry. I'm weaning off my meds so my appetite is easing up as well as the swelling in my hands and feet. I don't feel like I want to be a shut in and not leave my house because I don't know what the weather will do to trigger my pain. While parts of it were tough, to me, the surgery was 100% worth it and I would do it again if I had to. If anyone needs a neurosurgeon in the Boston area you simply HAVE to go see Dr. Ian Dunn at Brigham and Women's hospital. My experience with him, the hospital and every nurse I came in to contact with was spectacular.