Today I am 3 weeks post op. Today has been probably one of the most painful since I’ve been home. I had been warned about how weeks 3 & 4 are probably the worst in recovery. Well I’m here to tell you that these people are correct. The stupid pain didn’t wait very long before it decided to say “Heyyyyyy, I’m here let’s play”. Probably the past 4-5 nights have been awful for me. I’ve been crying myself to sleep. I’m having a lot of sharp pain around my incision. Today I had a few zaps at the very top of my incision. My neck muscles are so tight and I can feel the pull all the way up to my forehead. UGH! Finding a position where I can fall asleep is a LOT of fun. HA! I usually end up wedged between two pillows since laying on my incision is painful.
Ghost pains – Healing Pains that run along trigeminal nerve but have no trigger. Today I felt my first ghost pain, in my chin. I had hoped that I wouldn’t have to experience these. I wanted my face to be completely free from all types of pain. Even though these are to be considered healing of the nerve, it’s never fun to have pain of any kind after going through this for the past year. Now granted this pain is more annoying than anything, it may register as a 1-2 on the pain scale compared to the off the charts pain from before.
My ear has been my biggest annoyance out of all of this. My left ear feels like I’m underwater constantly. In the past few days its has been popping and loudly! Every time I swallow it pops. Sometimes the echo of my voice is so loud that I have to plug my ear just to talk without hearing myself talk. Today I’ve also had intense pain inside my ear; I’m telling myself it’s ghost pain.
I’m hoping tomorrow is going to be a better day.
The muscle relaxers were a god send for my recovery. I have been able to sleep easier at night and a short nap during the day if at all. It’s been nice that I’ve been able to move around more easily and get out of the house and ride in a vehicle without feeling like I was going to puke.
Just a couple days after I added the muscle relaxers I was able to get out of the house and have a lunch date with my dad. This past weekend was wonderful! I had 3 amazingly pain free days. I have not felt this good in over a year! I had so much energy. I spent 2 days doing housework along with the help of my daughter so I was not doing too much bending over. Sunday was father’s day and I was able to spend the day at the pool with family. Monday was just as great! We went out shopping, I didn’t tire as I had previously. I swore that life was going to be great again! Tuesday I drove for the first time since surgery. My daughter and I had a huge day, I drove everywhere. It was great to have my freedom back again.
Well that freedom came to a screeching halt Tuesday evening. Tuesday morning I had taken off my final pain patch post surgery and I didn’t give that little square enough credit. The driving and constant moving my head really flared up the muscles in my neck and head. By that night I was in tears. Wednesdays wasn’t a whole lot better. I thank my great friend and fellow TN warrior for watching my daughter all day so I could rest. The pain level was so bad by last night that I thought my husband was going to have to take me to the ER. The ice and medicine was not enough to help relieve the pain. I love my husband so much and his ability to calm me down. There is just something so calming and reassuring when he holds my hand and tells me that everything will be okay. I finally fell asleep a little after midnight last night and slept in until about 11am. Pain kicked my butt. I ended up napping for the majority of today too!
I had given myself a goal to go back to work before July. I completely underestimated how much brain surgery was going to kick my butt. Every day is still unknown whether its going to be great or I have to sleep the day away to allow my body to heal. I’m just a little over 2 weeks out of surgery and I still have a whole lot of recovery left to go.
On June 7th at approximately 8:30am I was finally taken back for my microvascular decompression of my trigeminal and geniculate nerves. About 3 hours later my husband and my dad met with Dr. Casey to discuss what he found inside my skull. (According to my husband-nothing-) Dr. Casey found a very large vein sitting on top of my nerve and was pulling other vessels over with it. He had to separate the vein to fully pad the trigeminal nerve and then he put the vein back together. With my geniculate nerve, Dr. Casey wasn’t able to to fully attack this nerve without causing damage. He tried to pad the nerve as best as he could without causing permanent hearing loss. He feels that both nerves were fully padded and I should not have anymore issues.
I was woke up in the OR to make sure that all of my functions were still intact before being take up to my room. Eric and my father met me in my room about an hour later. I knew that recovery was going to be hard. My body does not like anesthesia. I spent the next 24 plus hours getting sick with the littlest movement. The only plus side to recovery is that I woke up without ANY Trigeminal or Geniculate pain!!!!!!!
The first 2 days were rough. I didn’t really have any appetite. The nausea was awful. Dr. Casey liked to show up at 6am to complete his rounds. His biggest thing for me was that I needed to get up and walk. Getting up was hard. I was short of breath with any large movements. Just getting to the chair or bathroom was a challenge. I finally made it around the half of the wing with the help of my nurse and assistant. Which I have to say were completely wonderful. I can’t say enough about them.
I was able to leave the hospital on Thursday around noon. Experiencing a 6.5-7 hour drive home was not comfortable following the surgery. I was very thankful for all of the recommendations to purchase a travel neck pillow prior. It definitely made the car ride a bit easier. I was able to sleep for a portion of the car ride home. There were times it was a bit rocky but overall the ride wasn’t too bad. I was welcomed home with a beautiful sign, a shirt saying “I survived brain surgery” with the kids hand prints on it and 3 beautiful Gerber Daisies.
Friday (Day 3) consisted of me staying in the recliner with the exception to pick up my medication. The Pain wasn’t too bad however, the nausea was still awful. Zofran is my best friend, we meet up about every 6 hours. Saturday (Day 4) – Sleep is not my friend at the moment; broken and only for a few hours here and there. I woke up in pain that day, my muscles around the incision were tightening down all over my head. I was able with the help of ibuprofen to get the pain down to a tolerable level that I made it out to my daughter’s skating practice. I do not recommend getting out of the house for anything at 4 days post op. I learned my lesson. I spent Sunday and Monday in bed barely coherent with the nausea plague. Tuesday (Day 7) I had an appointment with my NP to check out this cough that rattles my brain each time. Let me just tell you, it hurts when your brain hits your skull. My lungs sound ok, I just have to continue with deep breathing exercises. We decided that a muscle relaxer would be good to try and help release some of the tension I experience first thing in the morning and at night. Wednesday (Day 8) Last night was the BEST night sleep I have had in a very long time! I was able to sleep all night and I woke up without feeling like I was going to puke with every tightened movement.
It has been a week since my surgery. Recovery was rocky in the beginning. I was overzealous in trying to get out and about. I would do it again in a heartbeat. It has been wonderful not having the pain in my face.
Yesterday I received the call with the arrival time for my surgery. I expected to start getting nervous and scared by now and I’m not. Honestly the biggest thought on my mind is today being my last day of work for the next 2-6 weeks.
The emotions started when I went back after the holiday weekend knowing I only had 4 days left. My wonderful work family put together a “Support McKenna” flyer to hand out to all of our residents. As of this morning Darrel now has to shave his head!!!!
The overwhelming love and support has been amazing. Yesterday was hard. It was an extremely painful day. I cannot wait until I’m no longer a human barometer! But aside from the pain it really hit me that I only had 2 working days left. I have so much pride and responsibility for my property that it’s hard for me to just hand over the reigns while I’m gone. I trust my team completely but if something doesn’t get done, I feel like it’s my fault because I wasn’t there to remind them. As the day went on, those emotions started changing to happy/sad feelings. All of the calls and visits really made my day. They also made me realize how much I’m going to miss being there. My work family and my residents really make my job so amazing.
This weekend is going to be so crazy busy I’m not going to have time to think. My dad and I are heading to Detroit Sunday so I can be there for preop testing Monday morning. My surgery will be here before I know it. Right now I’m just excited for the outcome. A day without pain is so close. I will not miss having icepicks, lightning bolt shocks and knife stabs in my face.
4 days left.
Click here to find our Give Forward page to help with donations and a meal train.
There are only nine days left until my surgery.
Nine days until I can hug my family on my left side without fear of touching my face.
Nine days until I can kiss my husband without pain.
Nine days until I can wash my face without pain.
Nine days until I can brush my teeth without pain.
Nine days until I can eat more than mashed potatoes.
Nine days until I can ride in the car with the windows down.
Nine days until I can be outside in the blustery wind.
Nine days until anything cold can touch my face.
Nine days until I CAN touch my face.
Nine more day until I get my life back.
Oh nine days please go quickly by.
I’m tired of the pain.
Your stay in my face is now over.
Please say goodbye.
When Eric and I left the doctor’s office two weeks ago we were relieved. I happily called and text everyone that knew what was going on that I FINALLY had honest answers. I was so excited. Eric and I talked the rest of the way home how we felt a weight had been lifted. We were told we could expect to hear from Heather to schedule the surgery after she received the approval from insurance. This could take anywhere from a day up to 10 days. Well that phone call came today.
I can’t even begin to tell you the crazy amount of emotions that I experienced listening to the voicemail. I was happy, sad, excited, nervous and then anxiety hit! The wait is over..well almost. On June 7th I will be having my surgery with Dr. Casey. Since the day the surgery was scheduled I haven’t really had those emotions again. I’m trying my best to get everything ready at work for me to take 2-6 weeks off. Just to complicate that matter I’m trying to hire a new part time leasing specialist before I leave.
I have the count down going. Only 35 more days. I still don’t think it has fully hit me that I’m having brain surgery yet. On my not so bad pain days I tend to think about what is going to happen, but when those bad pain days the surgery can’t come soon enough. This week has been hell for me pain wise. It’s amazing that I am able to put one foot in front of the other at times. I can’t even speak or eat without feeling a cattle prod to the side of my face. 35 days really isn’t that far away but other days it feels like its forever.
Eric and I are as prepared as we can be for the surgery…I think. I’m always a “what if” person and think of the absolute worst possible outcomes while Eric just tells me to chill out. We have a Give Forward page to help raise money for the “what if”. We are very excited to donate any money not used to the Facial Pain Association. There is also a meal train set up. Eric will be going back to shortly after we get back from Michigan. As reluctant as I am to ask for help, I think we will need it. We would greatly appreciate anything you can do to help us.
I’m hoping the anxiety stays away and I don’t have any more “oh shit” moments. I have a feeling the closer I get to the date, the more anxious I will be. I keep telling myself I’ve beat cancer, I can rock brain surgery too.
How the fuck can I hurt so bad with all this damn medication. According to some I shouldn’t even be walking. Today has been hell. I felt like I had an ice pick sticking out of my forehead and ear, someone taking a hammer to my cheek. The intensity of the pain is enough to drive a person insane. Not to mention the stupid cattle prod anytime I open my mouth to eat or talk.
June 7th cannot come soon enough.