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.
Well April 18th finally came. The 3 week wait for my appointment did not take as long as I thought it would. Dr. Kenneth Casey is one of the TOP doctors to see for Trigeminal Neuralgia. He wrote the book Striking Back: The Trigeminal Neuralgia and Face Pain Handbook. Dr. Casey still heads up research trials and actively works on how to better treat his patients and all TN patients.
I had emailed Dr. Casey prior to my appointment and he responded HIMSELF and apologized for the awful pain I was going through. He sent me paperwork to fill out prior to the appointment. I had their office questionnaire, a McGill Pain Chart and a pain journal for 3 days taken one day apart. Prior to my appointment I had filled out all the paperwork and sent it back to him. I arrived today with all of the paperwork completed and included the notes from my 1st neurosurgeon appointment, my appointments with my family doctor, the pain doctor and all my physical therapy notes. Needless to say I came overly prepared. I brought along my two most recent MRIs that were take since this pain had started. I also have a very detailed pain journal that I started post injections to document my changes. Dr. Casey called me back himself to the room; he had me come back alone at first and said we would call my husband back later. Once I got in the room he had me sit in a chair across from him with several common doctor “tools” sitting on the bed. We went over my history in detail and then proceeded with the physical exam.
He demonstrated on himself with each of the items and then had me do the same on myself. We first started with a Kleenex. I touched the right side of my forehead then the left, the right side of my cheek then the left, the right side of my jaw and then the left and HOLY FUCKING SHIT (pardon the French). A Kleenex set off an attack on the left side of my face. I was being shocked repeated as the tears streamed down my face. Next we used the end of a reflex hammer and repeated the steps as above, this time I was to pick a different spot on the left side of my jaw hoping not to trigger another attack. Dr. Casey was wanting to see if I was feeling the same thing on each side. Next we used the rounded side of a paperclip. And last we used an ice pack. I could barely touch it to my jaw on the left side without immediately being in pain. After the ice pack he used a tuning fork to see if my hearing was the same on both sides and to see how much vibrations would bother me. He started at the top of my head and worked his way down my face on the right side with it progressively getting worse. I jumped backwards just as quick as he touched my jaw on the right side. Prior to the ice pack and the tuning fork he had me take my break through pain medication since he started to aggravate the nerve. He wanted to head off any additional flare ups. Once all of those were complete he went to get my husband. He walked in to me having tears rolling down my face.
We discussed my current medications and why one of my medicines was never increased even though it was the first one I was on and I could feel results. So I will be increasing my Tegretol dose from 400mg day to 1000mg day over the next week.
After we talked about the medications, we discussed my other options. Those options are now surgical. Dr. Casey stated that he does not perform Gamma Knife surgery and if that’s what I wanted he could refer me to a great doctor. He then went on to describe the next 3 destructive surgeries: The Glycerol Injection, Balloon Compression and Radio Frequency Lesioning. The last surgical option is the MVD – Microvascular Decompression. The MVD has the highest success rate. Dr. Casey went over all of the statistical data for risks and outcomes for each procedure. He described how every procedure is completed and possible hospital stays. I brought 3 pages of questions for Dr. Casey and by the end of his explanations I only about 4 questions for him. One of those questions was if he could fix me.
Dr. Casey stated that I have Trigeminal Neuralgia Type 1 that is progressing into Type 2 due to the damage being caused to my nerve and Geniculate Neuralgia. Once everything was discussed Dr. Casey looked at my last two scans I brought. He left the room to review the discs. When he came back, he only handed me one of them. He had the other on his laptop for us to look at one of the slices. He pointed out my Trigeminal nerves on both sides and asked me to look at the scan and see if I noticed anything different. I pointed out this darkened spot on the scan and he said you are correct, that is a compression by a blood vessel. WAIT. I had 2 scans read by TWO different radiologists and TWO different doctors that previously told me that my scans were completely clear. Dr. Casey stated that there could be a number of reasons it was missed but it was clear enough for me to point out. (bring on the rage at this point). You can see in the photos below how the two sides are clearly different.
So long story short….We have decided that my best option is to have the MVD. Dr. Casey is currently in the process of getting the insurance approval and then we will be scheduling my surgery. I never knew I would be so excited to have brain surgery, but I finally feel relieved. There is a light at the end of this awful tunnel. Below is a brief overview of the topic.