Thursday, August 2, 2018

Medically Exhausted

I know it's not a term, but I feel like it's a thang! You can be emotionally, physically, financially, ...every 'ly' exhausted...and I'm adding MEDICALLY exhausted. There have been a few times I've reached it. Mayo Clinic after racking up lots of debt and lots of diagnoses, followed by, "There can't be THAT much wrong in one person's body." After a doctor screwed up and I started to die (serotonin syndrome). After my body rejected my first and second disease (MS) modifying drug. After my failed minor brain surgery. After my 6th spinal tap.

And this week...

My pains have progressively gotten worse over the last several months.  I kept chalking it up to stress, heat, two moves, and many changes resulting in MS flares. I've taken it on as a bigger challenge of hiding my pain and carrying on living as real & happy as possible. I assumed my pains would settle down as we settled into our new place and life. #reallifegaming

BUT, my memory has been starting to come back a bit. Not specific memories, per se, but my ability to remember things like numbers, various words, directions, names, etc. We've realized that my body has built up a tolerance again and I need to increase my medications, do another surgery...or something.

My KS neurosurgeon at my 2 week follow up said 3 things that I'll never forget.

  1. Your nerves were so, so, so badly damaged....SO damaged.
  2. You have anesthesia dolorosa.
  3. I can't do any more surgeries on your nerves.
  4. Oh...4 things... go down to the ER immediately. I'll call up a wheelchair and nurse. 
A year and a half later, I'm here. I moved to Colorado and was excited by the idea of a neurologist who ONLY sees MS patients and a Trigeminal Neuralgia Clinic. Plus accessibility to higher dose CBD. 

The Trigeminal Neuralgia Clinic first has you meet with the nurse practitioner for the neurosurgeons. They specialize in facial pain and I hoped I would meet with the whole team (pain management, neurosurgeon who would do the work, etc). But I only met with her and she was quick to say GAMMA KNIFE RADIATION was the next step. They typically do it first with someone like me (MS caused TN, ATN, but my other side of my face is TN1), instead of RFA. I asked questions about risks, side effects, possible complications, and the differences between RADIO FREQUENCY LESIONING and the GAMMA KNIFE. They both destroy the nerve. She talked a little about the ganglion (in my cheek). But she didn't go into any more explanations. All of her replies regarding risks were, "Not usually," "normally," "nooo," (with a pause). She had an approach more like, "It's so rare to have a complication that we don't need to discuss it." My KS neurosurgeon was really straight forward. I had all the hope in the world. My tooth had been healed after a year and a half, so I figured a surgery inside my skull would be too since it was more important. But in looking back I'm glad he went over all the risks and possible complications. 

The nurse practitioner mentioned some injections first and then afterwards doing the gamma knife radiation procedure. It's even less invasive than my last surgery. BUT, after talking to others who've done it, and a bit of research, it sounds more aggressive on the nerve. Immediately after the appointment I was hopeful. But, the more I thought about it, I realized why my KS neurosurgeon doesn't wanna do more. Radiation is a big deal. If you do Gamma Knife, you limit possible surgeries in the future (granted, being MS caused Trigeminal Neuralgia, I'm limited already). A decent % of people get worse after the procedure. AND if my brain couldn't respond well to lesioning how would it respond to a focused degree of radiation? WHO gets Anesthesia Dolorosa and then does MORE surgery to mess up the nerves? The only other surgery my KS neurosurgeon mentioned (several meetings later) involved stimulator/electrodes implanted under the skin with a pace maker kind of thing to adjust. The few people I know who have anesthesia dolorosa have ONLY done these (or a pain pump) AFTER they developed AD. Did I mention my PTSD from waking up in my last one? AND that they screw in a halo/cage thing into your skull and I figure if I can't handle hair or wind touching my face, how will I handle the cage? And injections into my face while awake weeks beforehand? An oncologist will be involved...it all felt like a rabbit hole I didn't wanna go down. 

A few days later I met with the new neurologist (who, by the way, doesn't take insurance and instead of $300 for a first visit it was $390...gulp. Thank goodness for my hubby's new job with overtime =)). My neurologist was quick to talk about the next surgery, why I'm not currently on a disease modifying medication, and that I should move on to a pain management specialist. But mostly his focus was on the 2nd minor brain surgery/procedure. He talked about how I was such a complex case and his specialty was just MS (I'd have to talk to the neurosurgeon about the questions about nerves and even some medications). It was obvious that he wasn't comfortable with TN. I started to cry...I don't want my ONLY options to be continually increasing my worst anticonvulsant med every 6 months until I can't anymore OR a procedure with radiation! It was then that he got a box of tissues, Mike woke up (he sleeps during the day and can sleep amazingly well in a sitting position-haha), and he got up to get a book. He searched through the book. Gave me a pamphlet for a pain management doctor. He put together a lot of orders (MRI of brain and spine, blood work, etc). Wrote one prescription and then I reminded him that he will have to be in charge of a lot more than one. 

We decided to increase one of my anti-seizure medications. I'm at the absolute highest you can go...and need to be aware of any giraffe-shaped rash that is also a sign of your CORNEA THICKENING! Oh, and there's a possibility of death too, so I have to go into the ER immediately if I notice the rash or vision changes. (No wonder why my KS neurologist didn't wanna increase that one to the max. She knows that if there IS a side effect or complication, I'm a likely candidate.) Thankfully, though, if you notice the rash your thickening cornea will go back to normal after you go back down. It's the best medication for me at the moment...but yikes. 

I also stopped for higher dose CBD options afterwards. So far I've tried two without much luck. CBD helps a lot of people, but my pain is so severe that it only helps a little. 

So, at the moment my options are:

GAMMA KNIFE RADIATION with a halo screwed into my head and 2 injections done weeks before...into my face...no better way to flare my PTSD, TN/ON/GN/MS and AD!!!

https://www.mayoclinic.org/tests-procedures/brain-stereotactic-radiosurgery/about/pac-20384679
OR

INCREASE ANTICONVULSANT MEDICATIONS which results in side effects like:
  • Major memory issues (I feel like I'm heading down the dementia path my grandma did when she would talk to me and try to remember the names of her grandkids).
  • Drowsiness
  • Dizziness (increased)
  • Muscle Spasms
  • Suicidal thoughts
  • Painful sores around mouth or eyes
  • Blistering/Peeling or yellowing skin or red/purple spots on body
  • Blood or Liver problems (I have to get regular blood tests to make sure mine is still working)
  • Weakness, Fatigue
  • Severe muscle pains
  • Weight gain
  • Frequent infections
  • Worsening depression, anxiety, headaches, etc
Many of these I ALREADY deal with-have dealt with for 20 years-on a daily basis. So it's hard to determine which is which. But I can tell you I don't want to increase any of those (and obviously some have already increased, but it's worth it for some of the pain to decrease). 

AND...

I think we've decided that I'll increase one medication and see how I'm doing. In the mean time I'm looking SO far OUTSIDE the BOX that I've turned it upside down and am trying to stand on top just so I can see any outliers who have miraculously found relief, no matter how tiny. #shortgirlproblems

I've tried several higher dose CBD items from edibles to tinctures to creams. So far it's minimal improvements. But a cream I bought from California (Gallixa with Gallium Maltolate- only 0.5%-higher concentrations injected or ingested they use for cancer patients), and it seems to help. It numbs my face more, but actually does give some relief. This type of gallium in topical form doesn't have side effects and is more natural, which I like. Next I'm searching for another thing a gal from Spain told me about. She has had TN for 10 years and Anesthesia Dolorosa for 7 years. She landed in the hospital because she had HOLES in her pancreas! The meds are so severe, so she tried something you don't hear much about. If I find it and it helps I'll share. If it doesn't, I'll just add that to the virtual list I keep of things that have cost money and failed. #HEALthISwealth                Did I mention that this week I found out a guy who's had MS for 20 years and TN for a while was in the hospital recently with a bad attack, ended up having bleeding in his stomach, and passed away this week? (She reassured me it was also due to being on blood thinners, but the timing of me asking questions and this coming up was eerie.) 

I was depressed and honestly a bit angry at all the decisions I have to make about my health with what seems like choosing between an uncertain path or a bleak path. Decisions. Decisions. Dementia or Death or DEAD nerve beyond what I've experienced thus far...why do those have to be my options? Plus all my other diseases? There are so few people who have AD, so there is minimal research. There aren't that many people in the world who have this thing where we constantly juggle knives, lightning bolts, scorpions, hammers, acid, hot pokers, bugs, vices, and fires behind invisible walls. Studies are almost nonexistent. So you are left with brilliant minds who offer conflicting treatments and then your own gut...which ironically is a side effect to many meds. haha. My spiritual gut is pretty good, but my physical gut is a mess. (Dang doc who almost killed me with my intestines entirely shutting down, followed by kidney issues. Then you add in all these medications and it's a war up in here. Yes, I'm working on my microbiome.)

But, once I got that Gallixa cream and have done more and more research, I feel like I can come up with a plan on my own. Then meet with the pain management if the things I'm setting up don't work. Yes, that path will involve more meds, some injections of all kinds of things, and MAYBE another surgery. But I'm putting all of those options in my back pocket for the moment. We will see how my so-far-out-of-the-box-it-looks-like-a-dot gets me. The glass o' hope is still half full!


{My plan:
  • Bed 10:30-6
  • 6 glasses of water (plus morning lemon)
  • Clean eating as much as possible
  • Gallixa
  • CBS
  • Atlas Orthogonal and NeuroStructural Chiropractic
  • ?Wait on increase with Lamotrigine or go ahead?
  • Water Aerobics 3 times a week if possible}


2 comments:

  1. Why can’t the pain pump be an option? I’ve heard some about it and I’ve been wondering. I know you had side effects with some pain medicine and had withdrawals. Is that the same kind of medicine they use in the pain pump? I don’t like the other 2 options either. I have had the medically exhausted moments and it messes up all the other areas in your life. Would the pain management doctors have other ideas? 😩

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    Replies
    1. Maybe because a lot of patients are being taken off opiates and doctors are being limited. But, I don't know for sure. We didn't actually discuss that option. All he really mentioned was a cerebral motor cortex stimulator (I think that's what it's called). I got the info on pain management doctors. I *think* my plan is to try 2 more "natural" options. Then if that doesn't work I'll go with the pain management doctor up here. If that doesn't work then I'll go down south to the TN Clinic and insist on meeting with their pain management team. So, there are several options. Who knows???

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