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After almost four months of silence I'm finally writing up how my ketamine treatments are going. Yes, they're still ongoing: I have one tomorrow.
 
In short: It's been amazingly effective on my Generalized Anxiety Disorder (wikipedia), but only slightly effective on my PTSD and my debilitating dysthymia (wiki) . We are playing with the protocols to find a treatment plan that fits my very unusual constellation of symptoms. 
 
Since I don't have a textbook diagnosis, the staff at the clinic has been good about working with me on designing new protocols that work best for me. Six weeks ago, I talked with the clinic's Medical Director to discuss trying a session at the length of the pain protocol (six times longer) but at the intensity of the mental health treatments (much lower dosage). I've now had a bunch of these extended mental health treatments and they're probably as close as optimal as we are going to find with Ketamine.
 
These extended treatments are definitely helping me find more interest in living: as far as hobbies, social life, and even in building a career.
 
Hopefully, in a future post I'll talk about what these Ketamine experiences are like for me, but they're far too profound for this post.
 
How often? 
For the mental health protocol, they start at twice a week, with optional psychotherapy (solo or group) twice a week. I have now reduced that to once per week as we are reaching the limits of what ketamine can do for me and are now transitioning to maintenance on those benefits.
 
 
Why Ketamine?
There are basically three components to the effects of the Ketamine: sedation, neuron polyp growth, and psychedelic. As we increase the dosage, the psychedelic effect peaks first, then the neuro-regeneration, then the sedation. The primary goal of the depression protocol is to stimulate the rejuvenation of atrophied neurons by inhibiting the reuptake of the neurotransmitter Glutamate (wiki) — kind of like Prozac inhibits the reuptake of Serotonin. This [amazon] book seems an accessible book for in-depth knowledge of what we've western medicine has discovered so far on how ketamine works for treatment-resistant-pain and -depression. 
 
 
So why has ketamine been so effective for my GAD? 
For the first time since the earthquake (my dw posts 1 and 2) (wiki) I felt safe. For 33 years I've never felt safe — anywhere. That continuous fear was corrupting every part of my life. Those brief, 40-minute breaks from that fear allowed my brain to separate the corruption from that core fear and address and dismiss those other anxieties now that I could see them clearly.
 
 
Why this isn't an option for everyone:
Primarily it's the cost. It's very expensive and hard to access. While Ketamine has been safely used at higher doses as a sedative, its use for pain and mental health treatments is still under investigation. It's similar to a New Drug's phase III trial except ketamine is not a new drug. As such, the American FDA specifically prohibits clinics from charging insurers directly for these treatments. Some (not my) insurance allows patients to submit superbills to try to recover no more than 50% of the costs. I'm privileged that my mother has been very frugal throughout her life and can afford to buy me these treatments. They're saving my life.
 
Also, the detached, trance state isn't for everyone, especially those who heavily associate the almost out-of-body experience with their fear of death.
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The cortisone injection didn't help with the pain at all but wasn't really expected to.

My new Radiation Oncologist thinks radiation is rather unlikely to help either.  If my pain had been increasing over the past four months, then that points to the tumor as the cause and thus radiation would likely help.  We'll do another MRI just after the new year to check on how fast this tumor remnant is growing.  If it is mostly stable in size, we'll wait for a few years before radiation in order to reduce the likelihood of radiation-induced tumors 40 years after the treatments.

Also a good note: i've been feeling a little more productive these past few days.
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 I met up with my neurosurgeon to discuss the results of the latest MRI of my spine.  She's pretty happy with how things look.  On Wednesday, I'll get a steroid injection in the spine below the remaining tumor to try and alleviate some of the pain I'm experiencing.  Then I will undergo radiation to try to shrink the remnant.  Six months after the radiation, we'll do another MRI to see how effective the treatment was.

Not much else is happening: mostly just adjusting to the time change and awaiting the next shoe to drop in the fallout of the US presidential election.

I also need to deal with year-end medical insurance bureaucracy. 
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It's been two months since my spinal tumor removal.

Good:
Tumor was "benign" despite all the nerve damage it was causing.  Johns Hopkins declared it an Intradural Capillary Hemangioma — a glorified vein deformation.  While capillary hemangiomas are actually rather common in other parts of the body, only about a dozen cases have been documented of one growing on the Spinal Conus like mine.

Bad:
I'm still in a lot of pain from nerve damage.  After full regimens of heavy-duty anti-inflammatories, both steroidal and not, I still experience enough pain that leaves me breathing as if I am in labor as well as writhing in agony — I hope that counts as exercise.  It seems like the tumor had done too much compression damage to my right L5 nerve by the time we got to it.

I am waiting to hear back from the neurosurgeon on what to try next.  I hope this isn't my new normal, but I'm working on various chronic pain coping techniques on the assumption that it is.
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 While I will miss G+ when it dies next year.  I am really glad the traffic here has picked up so much
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29 years, today, since that earthquake thing.  It is finally getting to the point of being just another day.

Social
 Projects
 90% done with the spreadsheet/DB project.  I was closer to 95% and then destroyed it.  I deserved to am really lucky I didn't lose more.

Medical The surgical incision on my neck is healing well.

I am starting to feel a little more awake in the mornings, but am falling asleep again by mid-afternoon.

A week from today, it will be one year since my stroke.  It is getting to the point where I may go a day or two between consciously noticing that I have a hole in my visual field. Most of the recovery happened in the first three months. The hole is now about the size of a nickel coin held at arm's length, about half-way from the center of my vision to the upper right edge. This is an improvement from nine months ago when that hole was a slightly larger quarter. All the peripheral vision around and beyond that hole is still garbled as if looking through the choppy surface of a busy swimming pool.  Well, perhaps a photo of that, since the wave crests aren't moving.  Would calling it broken glass be better since it doesn't imply as much motion?   The only time it bugs me these days is when I am driving, since it is right where the rear-view mirror is.
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Social Dodger came over for a bit to use my table saw and also spent a day driving me to and from my surgery.  That is as close as I came to being social.

Projects I have made a lot of progress on my spreadsheet/DB project for this game I would otherwise have stopped playing.  I would put it at 85% complete.  This is the farthest I have gotten on any project of this scale in about a decade.  I think if this was purely for me rather than the people I chat with in-game, I would have given up by now.

Medical I had surgery last week to remove an overactive parathyroid gland that was making me miserable.  My bloodwork shows a complete success, now I just wait while the excess calcium leaves the rest of my organs.  This is good since the surgeon was only able to find three of the usual four parathyroid glands.  She spent most of my surgery looking around trying to find it, but either it grew somewhere else or I had only three (now two). Those who have trouble with overactive parathyroids can get by with only half of one of the glands, so having fewer than normal isn't an issue. The biopsies all came back benign.

I have started taking a new psychotropic medication as an adjunct to my main ones; it will still be a few more weeks before I will be able to judge its benefits to my mood and productivity. Hopefully this and having fewer calcium deposits in my brain (parathyroid) will boost my wakefulness as well.
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Social Projects So I have been playing this game (which I won't mention the name of since the devs seem pretty shady in rather heavily skewing supposedly random odds in their financial favor).  The only thing that has kept me playing without paying is that the equipment system is rather complex and provides some interesting optimization puzzles.  It has hundreds of items that fit in up to 56 slots; and, on average, three new items are being released every week. Most of the items receive bonuses if other specific items are also being used. Figuring out which combination of items provides the most power has led me down a rabbit hole of spreadsheets and databases.  It is good to refresh my skills in those.

Just mapping out the interactions of the latest 33 items has led to an interesting network theory [wiki] puzzle.  I was disappointed that I was unable to find a two-dimensional representation without intersecting edges.  I am pretty sure I wouldn't be able to do it even on a sphere or torus either.

Medical
 I am trying another medication to stave off the worst of my daytime sleepiness: again not much help.  I will stay on for another month or two in case it helps at all with my depression.  My parathyroid surgery is still a week away.  If that doesn't turn out to be the cause of my most of my sleepiness, the next step is probably an ADD med like adderall.
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Social Projects Medical One month with my CPAP, and I am sleeping a lot better, but I am still completely exhausted.  

Since caffeine didn't work for my fatigue, I am trying an anti-narcolepsy medication.  It has not helped reliably, but maybe a bit.  I meet with that prescriber again next week to try something else.

After a third different kind of imaging to try and figure out which parathyroid gland(s) are overactive, one finally showed some tentatively interesting results.  Since each type of imaging has a 30-35% chance of false negatives, the previous bland scans aren't all that surprising, just frustrating.  My surgery is in about three weeks; Dodger has agreed to be my chauffeur.
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Social Projects Medical Two weeks in, I am sleeping better with my new CPAP -- eleven hours' rest in eight hours -- but am still completely exhausted throughout each day.  I have once again been trying caffeine to see if it helps me like it would a normal person, but no:  it makes me jittery and just as likely to fall asleep.  It doesn't even make me feel more focused as it does for those with ADD/ADHD.

I am being passed around from doctor to doctor lately who are all going to the effect of "we could solve issue A this way, but it is contraindicated by you having issue B; I will refer you to a B-specialist to see if they have any ideas."  In the rare times they do have ideas, those complicate issue C (rinse, repeat).  So at the moment, nothing much can be done.  I see two new doctors next week to try and inject new solutions.
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Social once

umm... yeah, pretty boring.  I am mostly just reading and sleeping while awaiting more medical care.
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[cw: cancer mention, stroke mention]

Social
 twice 

Projects Medical I have now been formally diagnosed with the long-suspected sleep apnea.  I have a follow-up in 2.5 weeks to get details and talk to someone about getting a CPAP.

Despite the high cost of the genetic testing of my clotting factors right after my stroke ($720), the testing for all genes so far identified as influencing hereditary cancer (83 of them) will likely cost only $250.  I am guessing the difference is the clotting genes were processed STAT (fearing a major stroke at any time), and I am waiting all of three weeks for the cancer stuff.  Commercial genetic testing has come a long way in these last few years.

Four weeks after her major spinal surgery, my mother is back home and doing as well as could be expected.
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Social once.

Projects Medical I got my endocrinology appointment moved up; I have an appointment in two weeks to get genetic testing that might (only might) explain some of my weird endocrine issues. Since such things are likely not covered by insurance, it will likely cost at least a month's income — well, that is how much the genetic testing unexpectedly cost after my stroke nine months ago.

I am also going to try a sleep study to rule out sleep disturbances as the cause of my inescapable drowsiness; all of my immediate family members have sleep apnea (my brother's sole health issue).

My mother's surgery spinal surgery went well, but her recovery has been slower than we were both expecting. She spent a week in the hospital and now another week in a skilled-nursing/physical-rehab center. She will probably be there another few weeks, but she seems to be making good progress each day.  I am pushing myself to visit her for a few hours most days.
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Social once.

Projects Medical I got my test results back last night and my parathyroid size, location, and activity levels are... all rather normal.  If my mental illness allowed me to cry, I would be crying.  This means my situation is a lot less obvious and it will probably take a lot more testing to figure out why I am debilitatingly tired along with losing a lot of calcium (some of which keeps clogging my kidneys).  

My next appointment with that doctor is more than two weeks away; and in all that time, I will have trouble doing anything other than eat, sleep, excrete, and drive my mother to her medical appointments.  She is in the hospital at the moment recovering from spinal surgery to fuse the vertebrae around one of her two spinal fractures. 
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Social once.

Projects Medical Further medical test results are consistent with primary hyperparathyroidism [wiki].  Now waiting on more specific tests to determine which parathyroid glands are acting up and confirming that they are located in the usual spots (which isn't always the case). So much waiting...

Edited to Add: next round of tests scheduled for the 20th.
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Social only once

Projects so tired...can't concentrate

Medical awaiting test results which should allow insurance authorization of more expensive tests.
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Social twice.

Projects Medical Last week I had surgery to clear stones from my left kidney that were completely blocking urinary flow there.  Fortunately I have another kidney on the right, but it is still unclear why that right one has been in so much pain these last 7 months.  We are waiting until the blood has cleared from my urine to do more tests as to why I am creating so many kidney stones.   The leading candidate is primary hyperparathyroidism [wiki].

[cw: cancer, bowel] If you missed the edit to my previous post: the polyp removed by the surgeon was pre-malignant and slow growing, so we caught it in plenty of time.  I shouldn't need to be checked again for another five years, but I am at high risk for colon cancer if I don't keep getting these occasional colonoscopies to clear me of polyps.


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[TW: icky medical stuff]  UPDATED

Social once

Projects: I am back to playing around with typography (making pretty alphabets) specifically motivated toward letters that can be formed using only a single stroke of uniform width for easy-carving into wood. There are others out there, but I was curious if I could make my own. I never quite realized just how hard it was to make pretty Ks; I have spent as much time on that one letter as on all the other letters combined. Have any opinion on that [personal profile] katybeth or [personal profile] blk?

Medical:

The Good:
  • The MRI of my pituitary gland shows that the prolactinomas have mysteriously disappeared. My endocrinologist cannot explain why, but neither of us is complaining.
  • The MRA of my vertebral artery dissection (a loose flap in the lining of the artery) shows that the blockage has cleared up and likely healed. I still have pain there, but at least it doesn't look to be forming new clots that would lead to additional strokes.
Ickier medical stuff )
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social once

Lots of medical appointments these past two weeks with a bunch of tests upcoming to celebrate check my circulation status six-months-post-stroke.  Also doing other testing to monitor my numerous other chronic health issues.

All these appointments plus depression have left me too tired to do any woodworking. At least I am still looking forward to doing so once I have the wherewithal. 


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Social twice.

As if I don't have enough medical problems, add spinal disc degeneration in my lower back and arthritis in my neck, plus a few more transient issues.

I got my shaper origin! Though I still haven't tried it out yet, but I am watching tutorials and making plans.
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