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.