I decided to do a basic Q&A of my
Trigeminal Neuralgia and Anesthesia Dolorosa, simply because it's easier here. Several people have asked specific questions and I feel like this is the easiest way to answer. I am completely fine with questions and if you have more to ask, don't be afraid. I'm a pretty open book these days. My, how 10 diseases and adulthood makes you more open. haha
Question: What is Trigeminal Neuralgia?
The TRIGEMINAL nerve is the 5th cranial nerve that has 3 branches. It is how you feel in your teeth, lips, tongue, eyes, cheek, forehead, nose, etc. Trigeminal neuralgia (TN) is when this is damaged or compressed, then chronic pain ensues. The pain is excruciating and feels like stabbing, electric shocks, burning, crushing, exploding, or shooting pains. Often it is intermittent, but with MS can lead to more frequent attacks with less remission time between. It is one of the most painful diseases known in the medical world. Think of how sensitive your lips are, your eyes, if you've bit your tongue, or if you get a tiny particle in your eye. Magnify that by a million with hot coals, scissors, knives, fire pokers, branches, boulders, and more and it still won't touch this type of pain. ha.
It is also known as tic douloureux or "The Suicide Disease," because so many patients committed suicide before treatment was developed.
People with TN due to a compression or agitation are usually from a blood vessel or tumor pushing on the trigeminal nerve. This is much more easily treated than those with MS. MS trigeminal neuralgia actually tears away the myelin sheath which protects the nerve and actually destroys the nerve fibers, as well. This makes the communication between nerves and the brain or spinal cord less effective and to misinterpret signals as pain. (My brain actually thinks I'm being stabbed, burned, etc). This is kind of like the coating on electrical wires being exposed and misfirings, glitches, and other issues happening between the brain and nerves or spinal cord.
The neurosurgeon explained that my trigeminal nerve is very, very bad (damaged). Most people only have TN on one side of their face/head. But, my MS has destroyed both sides of my trigeminal nerves, as well as the left side of my occipital nerve. Few people also have all 3 branches of the Trigeminal nerve affected, but mine has been destroyed/damaged on all 3 branches on my right side and 2 branches on my left side. Before my surgery V1 and V3 were my worst pains and were progressively getting worse in frequency and level of pain.
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What can they do for Trigeminal Neuralgia?
Most often people simply have the tumor or blood vessel moved or blasted away, relieving the pressure. Kind of like a water hose being kinked. But, mine is like a water hose that has been torn down, holes poked all over, and lava replacing some of the water. haha. It doesn't mean mine is more painful than someone with a tumor or blood vessel but I use the simile to explain the differing issues in treating the two types of TN. I won't get into the variety of surgeries for that type of TN. (Balloon, Gama Knife, Gauze, etc). In these cases the trigeminal nerve hasn't been damaged as it is with MS. Mine, however, has been very damaged and is therefore much more difficult to treat. Often others can simply go on a medication or two (usually an antidepressant or anti-seizure medication) and it stops the pain signals from getting back to the brain. They do well. Others try medication after medication and it doesn't help. In fact, it continues to get worse. I was the latter type of patient. I've had TN for 4 years. My 3 neurologists didn't know what it was, and therefore didn't know how to help me. I also didn't have insurance for part of this time, so I just suffered through it. After I met with an incredible ophthalmologist and discovered I had OCCIPITAL neuralgia (often just a temporary issue), we finally found out that there was a name for my facial pains as well. Trigeminal neuralgia. It is often a long road to answers, just as my MS diagnosis was decades earlier. Mine was also compounded by the fact that I had lost hair over the spot that was swelling and stabbing. I had developed HYPERthyroidism after 15+ years of HYPOthyroidism (I have Hashimoto's thyroiditis-another auto-immune disorder).
Once we got my thyroidism under control, we could focus more on the face and head pains and swellings. I tried 4 different medications but continued to get worse. At this point surgery was the next step, since medications obviously weren't cutting it.
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For MS caused TN, I went in for RADIO FREQUENCY LESIONING (Rhizotomy). They make an incision by the mouth with a long, hollow needle and enter the brain through a small opening in the skull. They then use some heat from electrodes to cause lesions in the nerve. This numbs the nerve so that the pain signals to the brain stop temporarily. It stops temporarily because your body will try to fix the lesion (like a scab). Once you gain feeling again, the pain signals continue and you keep getting the surgery. (Usually 1-2 years but can be as soon as 6 months and as long as 3 years). Ironically, I have brain lesions which causes so much havoc on my body and do not heal. But, there is a 90% success rate with rhizotomies and much further down the road if it stops working they can do an open rhizotomy where they completely kill the nerve. It causes more problems with permanent numbness, but BELIEVE ME, it is much better than the unbearable pain. ALSO, you cannot treat both V1 and V2 or else you risk permanent cornea and other vision problems. It's simply too risky. So, the plan was for V2 and V3. But after further discussion we decided V1 and V3 because those were my worst pains. It is hardest to get to V1, but worth a try.
What happened in your surgery?
I wasn't supposed to remember it. They go in, make sure they got the right spot, and put you under further. The most they said before the surgery was that if they got the right spot some patients actually have a tear drop from their eye because of the pain. Or a nod or yes when you are groggy and mostly out of it. Then they know they got the right spot and use the full heat to cause the lesion AFTER you are put under completely. You don't remember it and don't feel the pain like you would when it is actually destroying the nerve fibers. (Again not fully destroying the nerve). I went right under anesthesia once I was situated on the surgical table. I was happy, jovial and optimistic and then blissfully asleep. Truly I had no worries. I was put under and they did my first branches of the trigeminal nerve lesions. I didn't remember the first two times they did it. But, I was in surgery for 2 hours. At the end as they were doing the final lesions, I woke up and felt the full effects. I was screaming, jerked my head and begged them to stop. The anesthesiologist I believe didn't give me enough towards the end. I could feel the needle in my skull, the burning, and the pain was out of this world. The anesthesiologist quickly gave me more and my body jerked more than it ever has before (I jerk a lot throughout the day because of my medications but it's mild). They quickly stopped the procedure and I continued to moan and jerk drastically. I remember them moving me from the surgical table to my rolling bed. I even asked if I needed to help move myself to the bed. (They said no and the nurses moved my body instead). They wheeled me down the hallway. They parked my bed and the nurses, anesthesiologist and neurosurgeon stood around my bed to see if I could feel and how I was doing. I kept saying, "It hurt. It hurt." The neurosurgeon asked what hurts and I clarified, "No, the SURGERY hurt. It was horrible. It hurt so bad." I was still just so awake. All of them looked at each other worried. The shock on their face was almost comical if I hadn't have been in such horrific pain. He felt my forehead to see if V1 worked and I could feel it fine. He and I realized immediately that my worst pains would stay. It didn't work. V2 and V3 did instead. I was wheeled out of surgery at 10:00 am and at 10:05 I was begging to leave, simply because I hated the experience. The pains were so severe as I was rocking back and forth holding my head that they wouldn't let me leave. They gave me pain killers that usually knock most people out. It didn't for me and the nurse said, "It seems like nothing knocks you out. Like nothing works on you." I saw others being wheeled out of surgery around me and they were groggy and totally out of it. I was jealous. In other surgeries I've had I also come out of anesthesia quicker than most patients. I think it is because I have to function at a difficult level on a daily basis. When most would lie in bed, I am up talking and walking/hobbling. However, I have NEVER been out of anesthesia while on the surgical table and so awake as I leave the room. 20 minutes after being wheeled out of surgery I left the hospital. I believed 100% that the surgery would be successful. I was shocked and depressed more than I had been before. In looking back I think I had some PTSD right after the surgery because it was so terribly traumatic and didn't go according to plan at all. I know they gave me more when I was screaming, but was forcing myself to stay awake because I was so afraid. I also am so grateful for prayers and fasting. I can't imagine if V1 had been completed. They did it 3 times and if both V1 and V2 had been lesioned, I could be permanently blind. I'll take my darkened, altered vision over permanent blindness any day!
What happened next? What is anesthesia dolorosa?
Immediately after the surgery, most of my face and head was numb and I felt like an ice pick was being shoved down my right ear. I couldn't hear very well out of it and I still got the trigeminal attacks. My lips burned, I couldn't chew on that side or taste very much at all. My tongue was stinging, I felt like bugs were crawling under my skin by my ear, and it was a very difficult adjustment. I also got a cough either immediately after the surgery or by the morning of the next day. I was told to just take tylenol and I couldn't even take advil until 6 weeks post-op. The pain continued to spread and the numbness didn't leave. A spot by my mouth always burned with intermittent jolts of electricity. My lips always burned and when I coughed, yawned, spoke, smiled, etc, the burning increased. My tongue was almost all numb and it felt burning and stinging always. I felt like someone was constantly yanking out my teeth (lower) and I was always being kicked in my front teeth. I had to chew on my left side of my face, which was my worst trigeminal pains on that side of my face. It was like leaving the dentist with a terrorist torturing me non-stop. If I had been placed in a dark room and told I was being tortured to death I would have believed you. It was because I was the 0.8% who got anesthesia dolorosa. My brain misinterpreted the numbness as severe pain instead. So, I HAD numbness, but ALSO now had NON-STOP burning, yanking, stabbing, stinging, crushing pain ON TOP of still having trigeminal neuralgia attacks. It is EXTREMELY rare and I was one of those patients. The more I did, the worse the torture became.
Anesthesia Dolorosa literally means painful numbness. Without doing anything I have extreme pain. But if I do anything that causes movement or any slight form of touch to that side of my face I pay dearly. Yawning, smiling, talking, laughing, eating, a fan, a very slight wind, lying down, showering, kissing, etc, causes MORE pain, burning, yanking, kicking, shocking pains. Coughing was especially difficult. With MS I had to choose daily what sacrifices I would make and pay for later in the day, week, or month on a lower level of pain, fatigue, nausea, and dizziness. Now just living was supremely painful, exhausting, depressing, dizzying and knocked me down emotionally.
With my recent sickness (I believe I got from someone in the waiting room at the hospital, which later my husband and daughter got as well), it was an added level of torture. I tried to get into my family doctor and/or nurse practitioner. They were backed up by two weeks. I went to the Urgent Care and the doctor gave me steroids and said I had an eustachian tube dysfunction that was pretty severe. (My eustachian tube had retracted into my head and it caused an imbalance of pressure). I also had an obvious cough, but it hadn't reached my lungs yet (bronchitis). She said if I was still struggling to wait 2 weeks and then she would give me another round of steroids, even though I explained over and over that with my MS I always need multiple rounds because my body is always attacking itself and my immune system is so bad.
Two weeks later I passed out once and had fevers, chills, and almost passed out several more times. My husband covered me with ice packs everywhere. I kept thinking I just had to hold on until I met with my neurosurgeon. I was feeling significantly better the next morning. We were regular with ice packs, it was cold outside (January), and I was about to hopefully get a new medication to take away the severity of my new pains. However, apparently I looked pretty bad. I had a fever of 102.6 (I had been much, much worse for 2 days earlier but never took my temperature), obvious infections, and the nurse, doctor, and others were very worried. He told me that I DID have anethsesia dolorosa and that they could no longer help me with surgeries. BUT, he was most worried about my current situation and sent me directly downstairs to the ER. He didn't want me to walk down with my walker (which surprised me because I was walking better that morning than I had several days before). I got a nurse, wheelchair, and ended up 12 hours in the ER. It took that long to get my fever down. They tried a spinal tap (even though I told them I always need at least X-ray and to lie down. The cocky doc didn't listen to me and failed. (More details in an earlier post).) He pushed and pulled several times and was surprised at how well I handled it all. Everywhere they looked they found infection. Because I was in so much pain I didn't know I even had pain in some parts. ha. Pneumonia, sinus infection, UTI, and possible meningitis. Because the doctor didn't listen to me, by the time they could have gotten a spinal tap with Xray the next day, I would have had SO many antibiotics in my system that it wouldn't have shown up. I stayed in the hospital for 4 days with IV antibiotics almost continuously. I struggled breathing, could only get up with a nurse to use the restroom, and was grateful that even though I'd told my mom I was fine, she came from Idaho to help.
Once I was out of the hospital it was easier to move forward. My two neurologists met with me. This time they were worried about my depression and how severe the anesthesia dolorosa is to deal with. I was put on more medications. Both my neurosurgeon and neurologists are meeting with me much more regularly. It is a long game of try this med and hope for the best.
How did you handle it all? How can you keep going?
Truth be told the depression, suicidal thoughts, and anxiety were something I have never experienced to this extreme before. I have had depression and anxiety for 26+ years, but this was a level I had never known. I am grateful few people in this world will ever know it. Around November I was quite depressed over my health and financial situation. I opened up a TINY bit about it and friends came to my aid. Some friends I hadn't really been in close contact with for more than a decade. I thought I was so lost and forgotten. Even unloved. But, they helped us in more ways than I can count. All of a sudden we were able to survive December, January, and February when I had no idea how we'd make it. They lifted a burden I had carried for 3 years. They answered prayers I'd given years before and continued with each passing year causing me to question more and more. It was like I had prayers answered a few times in the years before and then all of a sudden the heavens opened up. I thought all was turning around and my surgery would be the ICING ON the cake! Little did I know that ALL of their sacrifices and assistance would actually help me to survive the worst journey and darkest depth of despair I'd ever known before. By having my financial struggles, it opened a door for angels on earth to assist me in so many ways. They all gave me something to hold on to physically when I felt like I had so little to survive on. My friends and family still are lifting me when I physically, emotionally, and at times spiritually cannot. I have developed a greater appreciation for the gospel, Priesthood, and God and Jesus, as well. My connection to my Father in Heaven and Savior have developed even more.
I also focus more on what I CAN do instead of what I canNOT do. For example, I was thinking about how sad it was that I hadn't really sung in over a year and wasn't sure if I'll ever be able to sing again. (My trigeminal neuralgia will always be with me). Then my next thought was, "Well, I could hum along. I usually just read the words or think them, but I could do more." My daughter loves music and I used to feel awkward at church when I was the only one not singing. But, I thought...I can even hand it over to my spirit. My spirit can belt it out. I still listen to music almost daily, so it's still an influence.
Additionally I do a worry journal, which I've done for years. I pray-A LOT. I use notebooks or texting to "talk," as well as Facebook. I'm learning sign language. My daughter and I can communicate pretty well without words. We've been able to for a long time. I'm planning a trip with a friend, whether I can make it or not. I am seeing a counselor. Sometimes it is worth it to smile, talk, laugh, and then I reach my max and stop. I keep telling myself "Every minute, every hour, turn the pain into power." I pretend like the pain is good and to accept it. It's a reminder of what I've overcome and will overcome. When I'm sad about not being able to do the most basic of things, I allow myself to feel the sorrow. But, I don't let myself stay there. When I can write and see well enough I journal. A friend is teaching me tapping and I'm learning some meditation stuff. I'm eating better (I've tried WHOLE FOOD, PLANT BASED OFF AND ON for a while. I never stick with it long enough, though. This pain a great motivator). I am much more limited by going out than I was before (which is saying a lot), but I force myself to once a week still. I find things daily to be grateful for, even if they are miniscule. A dear friend and I share our good things daily, as well as in my prayers.
My family is my strength. My friends have been my beacon of hope. The gospel of Jesus Christ gives me eternal perspective.
Are you getting better?
Somewhat yes, somewhat no. I'm learning that if I just sit and rest, without interacting with anything or anyone, my pains aren't as bad until the end of the day. But, it's also not much of a life. All of this is teaching me balance even more than my MS has for the last 19 years. Half of my life has been lived altered and painful. I'm on many medications, creams, and trying alternative methods to deal with it. So far everything is VERY temporary. The only thing I've found to last about 4 hours are my various anti-seizure medications. When I get off by 30 minutes, I pay so dearly. But, even with all of my medications, I still have a great deal of pain. Sometimes it comes when I do absolutely nothing. The afternoons and evenings are the worst for me. Overall I want to die less, so that is a huge improvement. It used to be that I wanted to die 98% of the day. Now I'd say I want to die 1% of every other day. Last week it was probably only a few minutes in about 5 days! The pain in general is better, I would say. I would NEVER say I'm used to it, but I am learning to live with it. So, that is a remarkable improvement. I am sleeping better. The burning in my lips is better. My nose isn't numb at all. My ears popped for 12 minutes last weekend! So, there are some obvious physical improvements. Even more than that is the emotional and spiritual improvements!
(Weeks 8&9: I itch more which is hard to deal with, but I assume it means I'm healing.)
I can literally feel prayers of others. I can feel when many people are praying for me and then when prayers of people stop or go down in number. It is kind of remarkable. When prayers are high, I feel strength to carry on and much more hope. Even when the pains are bad, I still feel like I can handle it. It's almost like physically they are there, but emotionally it isn't as bad. It's hard to explain. When the prayers go down, I feel EVERYTHING more. It pulls me down more. Last week I was feeling pretty good. This week I'm doing a bit worse. The pains, even though my meds haven't changed, are worse. I don't know if that was because I went to my brother's wedding or because my body is again adjusting to the medications. There is only so high you can go on anti-seizure meds and only so many available on the market. However, I've got 2 more weeks and then I'll be at full dose for my second anti-seizure medication. I'm hoping that I'll be even better then.
Have you thought of/tried medical marijuana?
No, I haven't tried it. It's illegal in Kansas. Have I thought about it? Heck yeah, I have thought about a LOT of things since anesthesia dolorosa. My neurosurgeon suggested CANNABIDIOL. Cannabidiol (CBD) is NOT medical marijuana. Marijuana has many compounds but the two most common ones are THC and CBD. THC is the one that gets you high. It is a psychoactive part of marijuana. I don't want that part and my neurosurgeon agreed. I understand that for some people they do want all parts of the marijuana plant in tact and it helps them, but I personally don't want the THC for me. The CBD instead is extracted and you are left with the part that helps with pain and mood. It is NOT psychoactive, addictive, and will never get you high. Higher concentrations of CBD are available with a medical card in a few states that have passed the laws. I do not believe in recreational marijuana use. However, JUST getting CBD for my pains sounds like a 5th good option. You can get it from a HEMP plant, which IS actually different from marijuana. In fact if a marijuana plant has 0.3% or less of THC, it is reclassified as hemp. Marijuana has also been modified over the years to have a higher concentration of THC in ratio to CBD. CBD, by the way counteracts the affects of THC. A dear friend sent me an oil form of CBD, with a very low concentration (3mg mixed with olive oil per dose). I've tried a full dose and it makes me sick, but I'm thinking it's the oil. I've cut down on my oil consumption this past year and seem to get more sick when I use it. I'm looking into topical or tablets/capsules. However, when I've tried my cream or this oil rubbed on my face or gums, once it wears off (1.5 hrs), my pain is worse than when I started. So, I'm still learning how to deal with it all. For now I use half a dose (1.5 mg) twice a day just dropped into my right side of my mouth. I'm also still waiting on the machine I put on my forehead. Thankfully since Jan/Feb, I have been able to pay for all the expensive medications, creams, doctor's visits, travel expenses, and more that I would have put off just a few months ago.
Are you going to die from any of this?
From the diseases and reactions directly, no. People don't die from MS or any of my other diseases. However, with MS, my immune system is constantly fighting itself. People die instead from infections that your body struggles fighting through most often. It is a big reason why it was so scary (which I underestimated until I spoke with the doctors later) that I had so many infections after my surgery. But, I'm good now. In the beginning of my struggles with anesthesia dolorosa I did think about death a lot. Thankfully those thoughts don't come as often.
Is there a cure? Can you just find the right medication and then be okay from there?
No, there is no cure for any of my diseases. With anesthesia dolorosa, sadly, there is not much they can do beyond medications. And even a bit more tragic is that it often isn't enough. Since my MS seems to be continuing to attack my nerves, there is a very good possibility that I will continue to get worse. There is a very good chance that the medications will become less and less effective, as they have in the past. But, mentally I just tell myself that we will cross that road when we get there. Until now I'm just focusing on surviving. I hope someday to thrive. I'm learning balance. I'm realistic in that I most likely will not be able to have the pain completely disappear (although I'm COMPLETELY open to it and think it could be a possibility). But, I do believe that I'll be able to learn to live with this. I feel like I'm already half way there. I'm laughing more. I was afraid I wouldn't, but it is such a big part of me, that I still do. Granted, I have to force myself to stop and that has impacted how often and how big I laugh. But, I still laugh. And smile. And talk. Sort of, on most days. I believe one day there will be a cure. I am with an INCREDIBLE neurosurgeon who is brilliant and specializes in Trigeminal Neuralgia. He is so understanding, compassionate, knowledgable, and won't give up on me. I have friends and family who won't give up on me either. Most of them knew me back in my healthy days. They know I don't give up. I'm optimistic, faithful, and determined by nature. They also know I suck at asking for help or admitting my weaknesses. They've stepped up as I've fallen down. I'm learning to be more open, ask more, and share more of my weaknesses. In doing so, the blessings have touched me tremendously.
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| I take these medications daily plus an oil, cream, and hopefully a few more in the very near future. |
Will you always have anesthesia dolorosa?
Most likely, NO. I will always have trigeminal neuralgia with a good possibility that it will continue to get worse. There is a type of trigeminal neuralgia that is also constant pain, including the burning. But, I have the intermittent pain for now. The anesthesia dolorosa should only last as long as my body keeps the lesions. For most people that is 1-2 years. For some that is 6 months and for others it can last as long as 3 years. It is the amount of time it takes for your body to heal the lesions in the nerve.
***UPDATE, SEPT 2017*** We HOPE the answer is NO, but I have discovered that many have anesthesia dolorosa for the rest of their lives. In fact, their AD continues to get worse and worse without options of relief.
Why didn't the prayers and fasts work?
I'm working on a blog post specifically about prayer. ...to be continued =). Short answer: they did, but not in the way I expected. Also, people often think faith just takes into account our will, but completely discount the Lord's will. And just because the answer is "Not right now," doesn't mean it won't happen later.
