• Member Since 23rd Oct, 2012
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Klamnei


Write what you like, and like what you write.

More Blog Posts97

  • 8 weeks
    Klamblog - January 26th, 2024

    Hi.

    I have good news! We finally figured out what was wrong. I’m in the process of getting it treated. It requires two surgeries, one of which I had two weeks ago. It went very well, I’m recovering nicely. The second surgery is scheduled for March 5th.

    If you want to know specifics, read on.

    Read More

    8 comments · 341 views
  • 52 weeks
    Lost a Friend

    It's with extreme sadness I announce my fellow writer, collaborator, and friend, Bother, has passed away.

    He died on March 16th, 2023 due to a recently discovered congenital heart defect. He was 32 years old.

    Read More

    9 comments · 869 views
  • 72 weeks
    Klamblog - November 8th, 2022

    Hi.

    I’ve had a few developments over the past week. Hard to say how major they are just yet. They’re each certainly significant in their own ways, but they each also have strings attached to them. I’ll do my best to explain. 

    Read More

    7 comments · 635 views
  • 74 weeks
    Klamblog - October 26th, 2022

    Hi.

    Read More

    6 comments · 382 views
  • 104 weeks
    Klamblog - March 25th, 2022

    Hi.

    Read More

    10 comments · 772 views
Nov
9th
2022

Klamblog - November 8th, 2022 · 2:11am Nov 9th, 2022

Hi.

I’ve had a few developments over the past week. Hard to say how major they are just yet. They’re each certainly significant in their own ways, but they each also have strings attached to them. I’ll do my best to explain. 

First, I got the results of the sleep study today. It’s official. I have obstructive sleep apnea. I’ve already contacted the vendor I was referred to for a CPAP machine. They need to reach out to my insurance, as it requires pre-authorization to set up an appointment for picking out a machine. Guy said it usually takes about a week. Insert joke/criticism about the American healthcare system here.

There’s something I need to keep in mind when picking out my machine. I believe I’ve mentioned I’m hypermobile, aka double-jointed (Benign Joint Hypermobility Disorder is the medical term). My mother is also hypermobile, and like me, she also has sleep apnea. When she got her CPAP machine, the mask put pressure on her jaw throughout the night and caused her jaw to hyperextend. Her jaw became painfully inflamed within weeks as a result. Temporomandibular disorder (TMD) is the term. Like any other kind of inflammation, it is an absolute BITCH to deal with, and I’d like to avoid solving one problem only to develop another, thank you very much. 

My provider assured me the vendor has multiple kinds of masks to pick from. She also included in the order that I have a connective tissue disorder. I have to think that given how common sleep apnea is in general, there are plenty of lightweight masks out there. Fingers crossed.

I have a deep-rooted suspicion that I’ve had sleep apnea ever since I was fourteen. For context, that was when I had my bilateral hip reconstructive surgery. They had trouble bringing me out of anesthesia, and my autonomic breathing system was slow to recover afterwards. This is the part of your body that lets you breathe… well, automatically. They literally had to have a nurse in post-op watch me like a hawk continually reminding me to breathe because I kept stopping and would start to drift off into oblivion. Fun fact, you know the description of Neighsay waking up in Chapter 3 of Tomb of the Nameless Evil? I based that off of what it felt like waking up after the surgery, and subsequently what it felt like while drifting off. 

But I digress. Ever since that surgery twenty-one years ago, I’ve felt like my quality of sleep has been… less. I started waking up multiple times in the night, switching positions. Mornings became an absolute nightmare. I relied on caffeine more and more. I started having dead zones in the early afternoon. I couldn’t concentrate as well. My grades slipped a letter. My work performance went down. My energy levels sank. I thought it was from the discomfort of having my hips operated on, and of course later having them replaced. There were other warning signs, too: a friend telling me I snored, occasional choking fits in the night over the years. I never considered sleep apnea because I’ve never had high blood pressure nor have I ever been overweight. 
 
I honestly can’t say how much this might help me. If I’m right, I’ve been dealing with this so long that I’m not sure I remember what a good night’s sleep feels like. At the very least, I’m hoping it stops the pounding headaches I’ve been waking up with for the last year, and resolve this goddamn mid-day slump that’s been plaguing me for as long as I can remember. I guess we’ll find out once I get the damn machine and get used to sleeping with it. Provided no other problems arise from using it… ugh. Think positive, Klam. Positive thoughts.

That’s one development. This next thing I want to talk about has a lot of potential impact as well, potentially even more than resolving the sleep apnea. Remember that appointment I mentioned in my last blog that wound up being scheduled seven months out? Yeah… so I also shared that news with the doctor who had referred me, and they were NOT about that. 

They were not about that AT ALL. 

Flashback to 11/2 (last Wednesday)

*phone rings*

Me: “Hello?”

Nurse: “Hi, I’m the nurse for that neurologist your CMT doctor referred you to.”

Me: “Hi.”

Nurse: “Yeeeeeaaaah, so your doctor REALLY wants you to get in. Like, REALLY bad. You free later today?”

Me: “...Sure?”

I don’t know what my CMT doctor did or said, but I gotta give props to the man. I saw this new doctor last week, who among other things, is a specialist in thoracic outlet syndrome (and suddenly I understand why my CMT doc wanted me to see her) This new TOS doctor was as smart as she was thorough. My appointment with her was almost two hours. First, she got a whole picture of everything I’ve been dealing with. She noted my history with thoracic outlet syndrome, that I’m hypermobile, that I had a spinal tap last year with abnormal results, and all the doctors visits ruling out the issues I DON’T have. Then she did a physical exam and discovered I have protruding “cords” on both sides of my neck, which is something NO ONE, not even me, has ever noticed before. 

The TOS doctor ordered an ultrasound, which I got done first thing Thursday morning. We found the cords in my neck are swollen inflamed veins near the surface of the skin. This is an indicator that one or more veins are being compressed throughout the network. Sure enough, the ultrasound also found that my left interior jugular vein is significantly compressed pretty much all the time, to the point they couldn’t detect any blood moving through it. There is also minor to moderate compression in both sides of my collarbone region when I have my arms in various positions.   

According to my TOS doctor, my tinnitus and migraine-like symptoms occur from one basic problem: my brain isn’t getting enough blood. Having my arms in certain positions is what’s causing the venous compression, and pretty much anything that puts more strain on the circulatory system causing increased pressure on the veins around my head and neck. Typing with my right hand specifically is one of the things that absolutely destroys me, but so does eating a salty meal, physical exertion, and stress. 

So, yeah. I have congested/compressed veins in my upper torso and neck. My history of thoracic outlet, a previous scan of my neck that showed an issue with a major vein, my hypermobility, my having mild scoliosis, the recent ultrasound and TOS scan results, and having abnormal spinal tap results all indicate this. My brain isn’t getting enough oxygen due to the venous compression, and then even less oxygen during the night due to sleep apnea, which is why I wake up with the pounding headaches. This is also why I’ve had such issues with writing, for reasons you can probably imagine. Can’t really write when your brain is constantly oxygen-starved AND sleep deprived. 

By the way, I’m typing most of this while lying down. Doesn’t set me off since I’m in a neutral position. Split keyboard for the win.

We have an answer, ladies and gentlemen. After such a long search, we have an actual answer backed up by multiple test results. I now understand what I am suffering from, as well as what makes it worse. With this knowledge we can move forward…

Probably.

See, My TOS doctor isn’t sure what we should do about this yet. She gave me a medication called methazolamide to help with some of the symptoms, but she thinks multiple doctors might need to be involved to identify the source of the compression. She also reached out to a surgeon to see about decompressing my left jugular vein. Not sure what’s gonna come of that, but given a previous scan identified the compression last year and they felt no action was needed, I dunno. Maybe now with the presence of other symptoms they’ll feel it’s serious enough to warrant intervention? Maybe someone more medically trained could offer insight on that. I’m hoping she messages me soon with more details on a plan to move forward.

Right now my only instructions are “take these pills. I’ll get back to you.” Granted, the pills DO help, but they certainly aren’t a long term solution. If anything, the pills de-muddy the water just enough to confirm my doctor is right on the money. Is surgery in my future? No idea. Perhaps there’s a less invasive procedure, but given the scope of this problem and how long it’s gone on… yeah.

That’s about it. I’ll give more updates as I’m able.

Report Klamnei · 635 views ·
Comments ( 7 )

Oh thank goodness they seem to potentially have finally figured something out! Here's hoping things keep improving n__n

Im so danged glad you are finally getting answers here and hopeful solutions.

Sorry you had to suffer for so long with the unknown. Hopefully your quality of life goes way up now.

I'm happy that you have some more answers, and I hope for the best Klamnei. Fingers crossed. Thank you for keeping us updated. I'm rooting for you.

Wooooo, improvement!

Hail to the king. Glad that you're starting to get answers, dude! Here's hoping they can get a solution to ya and I'm super happy to hear you're already feeling some improvement!

"gentle GLOMP"

I'm so glad you have an answer now, Klamnei ;-; I hope that you're doing better now that you're diagnosed and taking the right medication. I'm sorry I'm so late with these words, but my Mom's been having medical issues of her own, but I'm here now and I'll cheer you on till the end, my friend :heart: Please, take care of yourself and do whatever the doctor says is best for you "hugs"

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