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. 😦
Last Thursday I met with a new doctor for a second opinion. I was very hesitant at first because I was so scared of doing something that could make me worse. After the appointment I finally felt like I had found more answers. This time I left with hope and not a suicide death sentence.
Dr. McDonnell feels that my excruciating scalp pain is from my previous surgery in 2009. I also have pain on Cranial Nerves V and VII. The pain over my eye, in my eyebrow, in my eye, and down my cheek into my nose is coming from Cranial Nerve V. The pain I have in my ear and the lower jaw by my back teeth is coming from Cranial Nerve VII. He hasn’t given me an official diagnosis because he is having me undergo additional testing to rule out other possibilities.
I did have an MRI this week and it came back ruling out MS and it did not show a compression of the trigeminal nerve (Cranial Nerve V). Now I am aware that just because there is not a compression shown on the MRI doesn’t mean there isn’t one. There are numerous people that have had negative MRI’s but ended up with surgery confirming the compression. I am scheduled for 2 injections after the first of the year. The first one is a sympathetic nerve injection to help see if any of the pain I am having is a result of my sympathetic nerve system firing out of habit for so many years. The second injection is going to help be more diagnostic for the cranial nerves. Theoretically, it should help minimize or relieve the pain all together.
Dr. McDonnell also wanted to change my medications and see how well I responded to that. First we started by lowering my current medication and adding 2 new ones. Well 2 days on one of my new medications and I could hardly walk. I spent 90% of the day on the floor because my legs were too weak to move. That medicine was quickly stopped the next day. I was quickly reminded just how much my current dosage is keeping the pain at an annoying but tolerable level. So once I had the negative reaction to the new medication they had me increase the original medicine back up. The second medication I am on seems to be helping. It took several days for it to build up in my system and just today I can tell a difference. I have had several periods of break through pain that was pretty excruciating.
Overall I feel pretty positive about my new doctor and our current treatment options. It still amazes me how I am still able to feel pain even with the amount of medications I am on. Some days I even wonder how I can function.
My support team is still amazing and rock solid. One of the most beneficial members is my friend and neighbor that just happens to be in a similar boat. We share war stories daily and help encourage each other to keep pushing forwards. I really do not know how I would manage not pulling my hair out without her….oh wait I already got rid of that 😉 But seriously having someone going through the same thing has been a life saver. She makes me feel normal and that I’m not completely crazy.
I am now at my full dosage of the new medicine and I have been for a little over a week. Most of the side effects have lessened now, I no longer feel drunk and I’m not having any vision issues anymore. The only side effects I have still have are memory issues, some speech problems and annoying leg aches. Some days are worse than others but I try to keep finding humor in the fact I feel 80 years old. I have had some weight gain and I finally feel at a point that I can do something to help combat additional gains.
On positive notes I feel as though I have more positive days than not. I do feel the medicine is working on helping me manage the pain. I currently started physical therapy to do some upper cervical manipulations. After doing lots of research on ways to manage the pain upper cervical chiropractic care is one of them. So far I have only had 2 appointments, so I will post more on how this is working out for me.
I have decided to have a second opinion and this coming Thursday I see a pain specialist that loves the thrill of Trigeminal Neuralgia patients and has a great success rate with the treatment.
I am doing everything I can to find ways to cope with the pain without the use of pain medicine. I started wearing wigs at the end of August after I tried on a wig for fun and I noticed the wig cap held my hair in place and it helped with the pain tremendously.
I love wearing the wigs. It’s a lot of fun to be able to change your hair every day without any damage to your natural hair. Plus I have met a wonderful community of other wig wearers that are the most amazing women ever!
Speaking of hair….I have had lots of discussions regarding my hair with my family and my doctor. I cannot even describe how much pain comes from my hair. People look at me as if I am crazy when I say that my hair hurts. Hair cuts are excruciating and I keep my hair in a short pixie cut to help minimize the pain. Well after lots of begging, I finally just said screw it and I shaved my head. It was the BEST decision I have made since this pain has started. The relief was almost immediate. Showers are no longer as painful, I can almost touch my scalp with normal pressure without screaming in pain. The day after I shaved my head was the least painful day I have had in a very very very long time.
I will do almost anything to keep my pain at bay. If it means becoming the next Sinead O’Connor or Demi Moore you better believe I will jump on that train right away!
So I am now currently on week 2 of being heavily medicated and I’m still not at my full dose yet. How I manage to function I still have yet to figure out. The past week has been relatively pain… lessened… I think is the best way to describe it. I have had some minor pain but nothing like I had been dealing with. I walk around most days feeling completely drunk without the joys of actually drinking. I had 2 days that I felt completely like my old self again. No body knew how to handle me because it had been so long since they saw my over the top happiness and better than normal sarcasm. I was elated….and then it came to a crashing halt yesterday. I woke up feeling as if my cheek was being crushed by an elephant and someone was stabbing me repeatedly in my ear.
How could I be on so much medication and still feel this pain? What happened to the happiness I felt? Why do I hurt again? Please don’t mean this was the beginning of the worsening already. I’m not ready. I have goals. My family needs me. Ok McKenna, you must get out of bed and make it to work. Just keep putting one step in front of the other.
I made it to work yesterday, made it through conference calls and trying to put on my strong face for everyone. And then I broke. In the middle of my office I was crying, my face was hurting and I was wondering how in the hell I am supposed to keep going when I feel so bad. Once again all of those thoughts from the morning plagued my brain. I had several great birdies tell me that it’s just one day, today is only one day and that tomorrow may be different. Do not lose hope on ONE day. They were right. I went on with the rest of my day in pain, but I did it. I made it to my daughter’s skating class and I stood there bundled up with continuous ear pain, but I did it.
Today I woke up at 2:33am in pain. I made it a conscious effort to tell myself that yes there is pain, but today is a new day. I drank an entire pot of coffee, had some orange and lemon essential oils diffusing in my car on the ride to work and I decided that no matter how I feel today that I overcame yesterday. I made it one more day. Today is painful, but it is nowhere near the pain of yesterday. My strength and positivity will carry me through and I have my little birdies to help remind me when I need that extra push. I have a long journey ahead of me, but it is one that is filled with lots of laughs, memories and sarcasm. I will always have days that are filled with pain, sometimes more than others. But that is it, just one day. If I keep looking at life and this journey I have been given as one day and reminding myself that I can always rise up and conquer the next, then I will always have the strength to do so.
It has been one week since I received my new diagnosis. I think I have been through every emotion possible in that time frame.
At first I was incredibly devastated. I cried through the majority of the doctor’s appointment, the trip home and into that evening. My face burned on my TN side every time a tear ran down. That day was a day that I needed to cry for myself. I knew that I had to get it out and be sad.
The next day was still pretty hard. People had lots of questions that I had to answer multiple times. My sarcasm was right on point that day (my coping mechanism). My coworkers were great, they made me laugh throughout the day and tried to keep my mind off everything. I googled the shit out of Trigeminal Neuropathic Pain just to find minimal information. Next I turned my searches to Anesthesia Dolorosa, which I knew better than to do, but I had to. I’m one of those type A personalities that much have all the answers so I can plan out every little detail, even though life rarely goes as I planned. This is scary stuff, especially if I’m only at the beginning.
Over the next few days my husband and I talked about how all of this could affect our family and life in general. The medicines I take make me a zombie and slow me down mental so much. Our goal is to get my pain level down to an annoying but tolerable level where I can still function. I want to be able to deal with the pain at a level I am really good at hiding it so the kids don’t realize mommy is hurting. That is probably the saddest part for me right now. They are troopers though. Both of them have witnessed some of my attacks and my daughter will just hug me and ask if it makes it better.
I’ve been angry. I’ve asked who did I piss off bad enough to deserve this. I’ve always been told growing up that every thing happens for a reason. I’m really questioning if that is true. Surely I was not meant to suffer with ungodly pain every day for the rest of my life.
I was dreading telling my boss the extent of my diagnosis not because of what I was afraid she would say but more so that I was more disappointed with myself because I’ve worked really hard to get to where I am. She is and will always be my cheerleader. She reminded me to just stay positive and take one day at a time. I have lofty career goals that I still hope and will achieve. I’m not ready and I will never be ready for this to completely keep me from working and doing what I love.
I’ve made it my goal to laugh every single day. Not to dwell on what I cannot change, even on bad pain days when the meds don’t work. Spend as much time with everyone I love as much as possible. Live my life like nothing has changed. Because as of now nothing has changed. I may not get worse and I pray every day that I do not. Always remember to take one day at a time. Just because I may have a bad pain day today, does not mean that tomorrow will be the same.
I refuse to sink.