FAQ
Several people have asked questions about what is going on. I'll try to answer all the questions here, since it's easier for me. (I'm still limited in how much I can talk.)
My title is deceptive. I'm not saying NO to ALL prescription drugs, but I'm hoping to avoid increases, as well as other negative options.
What is new?
My pains have slowly been getting worse and worse since February. I've worried it was because my body was building up a tolerance, but the side effects are so drastic that I've put off increasing my meds. (My neurosurgeon recommended increasing.) The last 4-5 weeks I have only slept well 2-3 nights. In the past 2 weeks I've had some nights where I couldn't even sleep
5 minutes. My memory has returned just a bit. Both have shown me that my body has built up a tolerance to 2 medications. The pain has gotten back to the somewhat-unbearable level recently at certain parts of the day. You can't tell if you look at me. I feel kind of proud of how much I can hide my pain and remain happy. But, sadly I've reached the point of "better return."
What do your doctors propose as help?
Neurologist: Increase meds, pain clinic referral (more meds). High risks because of high dosages. Thickening of the cornea, liver failure, an increase of issues I'm already having (cognitive, drowsiness, balance, dizziness, etc), and death.
Trigeminal Neuralgia Clinic was a bit of a disappointment. First you meet with a nurse practioner for the neurosurgeons. The whole team (pain management included) aren't even in the same building. She looked at everything and immediately decided I should get GAMMA KNIFE RADIATION "surgery" and said they typically start there for MS caused TN. It's less invasive than the surgery I had 1.5 years ago (Radio Frequency Lesioning).
What is GAMMA KNIFE RADIATION and their plan?
1. Injections into ganglion in cheek to see how I respond. After 2 separate injections they proceed with surgery at a later date.
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| http://www.flymedi.com/guide/how-much-does-gamma-knife-treatment-cost/ |
2. They
screw a halo/helmet (like a cage)
into your skull.
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| https://www.acoustic-neuroma-brain-tumour.org/english/acoustic-neuroma-gammaknife |
3. Put you in a MRI.
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| http://www.checksutterfirst.org/gammaknife/ |
4. Oncologist and Neurosurgeon work together to use
RADIATION to destroy the Trigeminal Nerve.
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| https://www.mayoclinic.org/tests-procedures/brain-stereotactic-radiosurgery/about/pac-20384679 |
5. Outpatient procedure, so you go home the same day. Cost is around $35,000-$45,000.
Success rates seem to lie around 75% with typical Trigeminal Neuralgia a year after surgery. At 5 years 58% have pain reduction (and risks increase with multiple gamma knife surgeries). However,
MS-related TN only has about 50-60% pain relief after the first year and 20-30% at year 5. Some DO get worse, including a possibility of anesthesia dolorosa as well.
What did you decide? How did you decide?
I spoke with several people who have Trigeminal Neuralgia, Occipital Neuralgia, Geniculate Neuralgia, and Anesthesia Dolorosa. It's amazing how rare it is to have the diseases (few have MS-related TN, very few have anesthesia dolorosa, and an extremely few have geniculate neuralgia). It's even more jaw-dropping how many suffer an incredible amount year after year. Truth be told it was quite depressing. Some just have to sit in dark rooms day in and day out. Notably since the pull back on opioids and what doctors can prescribe many have gone from sort of functioning to not at all. For some the gamma knife worked wonders. For others they've had to repeat it. There are some who strongly suggested I do NOT do it because they got
immensely worse after the procedure.
I wondered why my KS neurosurgeon didn't do this first instead of radio frequency lesioning. But, I later learned that doing gamma knife radiation limits future surgeries available because of how much it damages the nerve. However, I have both typical and atypical TN anyway and have very few options as it is.
During our appointment with the new nurse practitioner for the neurosurgeons I had hope. Something CAN be done. But, her vague answers as to risks, as well as the question regarding my anesthesia dolorosa, made me think harder. I still don't understand how my brain could react so poorly to the first surgery and would react positively to this one. Plus, I always seem to be that
rare patient. I did discover that anesthesia dolorosa can be caused by a
traumatic surgery or a surgery that damages a nerve. It was an intentional damage to the nerve but unintentional waking up
feeling the needle in my skull, burning in my face, and thinking that I had 6 people surrounding me trying to kill me. Maybe it's not that surprising that my brain can't understand the continued numbness. Confused on so many levels. ha
- I am not going to do the surgery at this time.
- I have a MRI of my lumbar, thoracic, and cervical scheduled (and will have my yearly brain MRI at the end of this year). I will see my new neurologist one more time and see how I feel. If I don't feel like he knows enough or is too overwhelmed, I will go to a neurologist closer to home.
- I will continue to try different brands of CBD and even some THC
- Sleeping and eating well
- NeuroStructural Chiropractor is my new focus
- If all of these fail I will try the pain clinic closest to home. If that fails I will try to push my plan of no surgery, but pain management at the Trigeminal Neuralgia Clinic.
Are you going to sue your doctors or the anesthesiologist?
No, I don't think so. Honestly, I could sue three doctors who have royally messed up. I guess you have a higher likelihood of encountering some bad doctors when you've had issues for 20 years. Only one was truly negligent (2005/2006). Two were ignorant and careless, but my neurosurgeon is compassionate, my nerves were so severely damaged, and the anesthesiologist was young. I expect they both learned a lot from my case- PLUS I didn't die. I don't necessarily feel that any of them should stop practicing medicine (except maybe the first one). Don't get me wrong; I have to work on forgiveness every once in a while when feelings surface. But instead of focusing on the money I could have, forgiveness is where I'm putting my focus. Would my life be easier with a settlement? Yeah. Specifically those years that we didn't have insurance or jobs could have been less stressful. But, we've been taken care of and I've seen miracles come through the struggle. I can see why some people do sue. But for us we are just fine.
Have you tried cannabis/medical marijuana/THC or CBD?
I have tried several brands of CBD (hemp-NOT cannabis) in various forms (creams, tinctures, edibles, oils). So far it doesn't help all that much; 5-20% maybe. I can see if I only had one of my diseases that it could help (depression, anxiety, cysts on my ovaries, IBS, and maybe even fibromyalgia). But TN/ON/GN and especially AD are so severe that it really doesn't help enough. I am trying two new brands, though, as recommended by several others. THC does help me a bit with sleeping. But not enough to really want to keep it up (tincture, gummies-some combinations CBD+THC).
How are you feeling?
I still have my usual issues. I still always feel like my lips are burning, tongue stinging, kicking in of front teeth, yanking out my jaw, bugs crawling under my skin, ice pick shoved down my ear and parts of my face and head being stabbed or electrocuted. I could literally be stabbed, electrocuted, a dentist performing a root canal on all the teeth on my right side without anesthesia (ironic), and a sprinkling of bugs, scorpions, hot coals, hot pokers, and a vice on my face and parts of my head, and my brain would know no different. Thankfully the half of my nose that always felt broken is better. But, sadly, my Trigeminal nerve is taking longer to heal than expected.
Overall I'm much better today than earlier in the week, emotionally speaking. Truth be told, I was incredibly depressed, stressed, and angry. It seemed like EVERY attempt I've made to try things that have worked for others haven't made a noticeable dent in my severe pain and struggles, other than my anticonvulsant meds. In only a year and a half I've reached the max on one anti seizure medication, one Parkinson's medication, and an antidepressant that helps me with sleep and pain.
The suffering people have with Trigeminal Neuralgia (suicide disease/Tic Douloureux), and especially Anesthesia Dolorosa, is astounding. It is heart breaking how so many of them have had to deal with it all. The depressing options I have/had ahead of me were maddening. Some people wrongly believe that ALL you need for a miraculous healing is FAITH. But, they completely remove God from the equation instead without realizing it. FAITH is more than expecting what you want to happen with only a focus on an easy journey through mortality. Faith is asking for what you want, but being willing to take God's will into account, as well as His timing, for the best eternal outcome. Truly healing takes FAITH + GOD'S WILL + GOD'S POWER (Priesthood). For whatever reason, I'm not healed yet. In the meantime I feel better about not doing the surgery, trying the NeuroStructural Chiropractor, and the years ahead of me. I was angry for about 3 days. After the first day I prayed and prayed to deal with the anger I had welling up inside. Thankfully I am doing a lot better. Looking into the future usually served me well in my past. But now I'm working more on living in the moment, gratitude, and grace. Today was a good enough day and that is enough to carry me through to tomorrow.
I have SO much to be grateful for and to celebrate. In a lot of ways things are going great. In a few ways things aren't going that great. So, if you add it all up, the GOOD outweighs the bad by quite a bit.
#blessedms
