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.
Did you know that you need to be able to think clearly to function at work? with your kid? in a marriage? Yeah well that all goes out the window when you are on high doses of two anticonvulsant medicines. I knew it was time to do something when I could not comprehend what I was reading off, I started to question my boss and I could not read out loud. Plus why experience all this when clearly the pain is still there?
I went back to the doctor and they decided to drop my gabapentin dose from 2700mg a day to 1800mg a day over a span of two weeks. I was terrified. I knew the pain would increase, but I knew it had to done. At the very end of the two weeks I had a 2 day work conference. Let’s just say that was a WHOLE lot of fun! (Completely sarcastic) I was in excruciating pain through the entire thing. I wasn’t able to spend time with my other coworkers in the evening. I went to bed and took my max amount of break through meds and hoped the sleep would make it better the next day. It didn’t. The weather did not help at all. It was rainy and storming. The ride home was even worse. Those days are the hardest not to let this completely get me down.
I’m fully down to 1800mg now and have had more pain than I can remember at the beginning. My pain doctor wants to implant a neurostimulator on my Stellate Ganglion which is located in front of my spinal cord at the C6 level. I questioned how this would work considering the injection didn’t provide that much relief. In a moment of desperation I agreed to start the process of insurance approval. I had to complete a psych evaluation (yes I passed!) but it was pretty much a joke.
I know the complications that can come from stimulators, my stepdad had one for his back. I needed someone to talk some sense into me. I went and saw my NP knowing she would help talk me through the pain. We decided that I would not do anything until I saw Dr Casey for a second opinion.
Call made…appointment set in 3 weeks. April 18th.
Well lots of things have happened since my last post. I have now had 3 sets of injections. They all majorly sucked. The medicine changes have greatly helped decrease the intensity of the pain. I had the MRI that my doctor requested and once again is came back negative for any abnormalities. Basically all that says is there is no tumor or evidence of MS. I know there can still be a compression even though it is not visible on the MRI.
Injection #1 – Stellate Ganglion Block
This first injection wasn’t too painful to experience. My neck was pretty sore but nothing some ibuprofen couldn’t take the edge off of. My excruciating scalp pain was pretty well instantly relieved and really has yet to come back. Some time it will still rear it’s ugly head. My ear pain was calmed for about a week, which was a nice break.
Injection #2 – Supra Orbital, Supra Trochlear and Maxillary
This injection was hell. During my exam before my doctor found a new trigger point (YAY…not) I was in a full blown attack going into the procedure. During recovery the nurses put an ice pack on my face to help with the swelling and unfortunately all that did was put in into excruciating pain. It took about two week for the steroids to really start working and I managed to be pain free for a week free. That week was amazing and almost eerie. I had been in so much pain for so long I forgot what it was like to be “normal” again. Once the pain came back it was a bitch. Man. I don’t know what I did to piss off the TN gods but geesh. The follow week was awful waiting to go back to see the doctor for the third injection.
Injection #3 – VII Cranial Nerve & Repeat Stellate Ganglion Nerve Block
This injection hurt like hell. It was not fun. He did my neck first for the Stellate Ganglion and then the VII Cranial nerve. This one was just in front of and below my ear. It was very uncomfortable. The pressure he applied after the injection put me into another attack. (insert eye roll). The next several days were extremely painful and then once again I experienced pain free days! This time it was only 4, but hey it was a chance to be normal again. Sometimes the pain of the injections is completely worth it just to have a small window of relief. Once again the pain has come back with vengeance. 😦