u/autum45678910

Hello, thought I would post because it has been a minute. Long story short I had surgery back in September for my big brain🧠😅 20mm, syrinx, severe blockage, and a syrinx. Had the worst nerve compression, headaches you name it. I just made my one year follow up early, due to lower back pain, burning thighs, and lower leg numbness. I pray it isn’t anything serious, but also hope it isn’t from the syrinx(or it has improved). My last follow up was 6 months ago, but I ran into an insurance problem, and basically had to delay any appointments, and or follow up. I been having this lower back pain/ thighs for the past two months, and it is getting to the point where I can’t sit for too long, stand for too long, and or lay completely flat either😭 Anyways, I’ll keep everyone updated once my appointment is here which is in late July. I wonder if anyone else has similar experience, or issues like this. Thought I would share!! My Chiari itself is more manageable which is great, just dealing with spinal issues now!

Okay, so I am a pretty veteran player, and when I see a grove, I call it out in chat, and then say chop at 3am. I know not everyone knows this rule, but usually they will respond or say oh I didn’t know, or sorry!! This player… was vigorously chopping all the trees the minute I found the grove at 12:30am, and then kept spamming the frog emoji. Once I told them twice to wait until 3am, they stopped chopping the big trees that require two people, and dipped, and then did the frog emoji again. I said in chat, hey it’s 3am are you ready?? Or are you just trolling?? That is when they dipped😭😭 I have never in my life had a bad experience until now.

I even looked at their profile(which shows they have been playing the game for a while since some were well above level 200). Was it wrong for me to block them, or report them? Or am I just sensitive😞

Hello!! Well idk where to begin with this post, probably from my three month follow up where I found out I have Platybasia, and also my syrinx going for a 2.2mm > 2.9mm in width. Syrinx is from C6-T1.

My original hernia size was 20mm all the way into my C3, and completely destroyed my vertebraes. My surgery I had a laminectomy, with a dura graft.

Here is my predicament that I am in:

1. All my doctors stopped taking my health insurance offered through my work(I can re shop in a few days and pray they offer one accepted, or find completely different doctors).

2. I feel like my syrinx is still there?? Or I have a tethered cord… which I will explain why. Or it could all be from my syrinx. I really do not know😭

3. My headaches have been returning back but only from over lifting, which also leads me to thinking about getting a different job😅Also keep in mind, I do not lift anything above 20lbs where my work requirement is 50+(I mainly am on the register).

4. The symptoms are TERRIBLE, I swear I can barely move some days, and the minute I lay down, or stand too still my whole body goes numb. My upper thighs feel burning hot, and tingle. My feet go tingly to the point I can barely stand without tripping over my feet. My thighs/legs are super stiff, and if I were to slap my leg, I can’t really feel them. I also have lower back pain around my butt, to the point, it burns, and hard to bend down, or even grab something. My hands and arms go numb at times, and idk what to. I been having bad brain fog, and losing my train of thought. During the times I can’t feel anything, I get super dizzy, and have to ask for help from my bf. I also been having a hard time controlling my bladder, and finding I have to go to the bathroom more often.

5. Pre diagnosis I dealt with daily headaches, to the point I would end up in the ER. My back of head would sweat, and be pounding no matter what I did. I couldn’t leave the house without being confused, and or bad vertigo. I also had a swollen lymph node as well(which now looking at my scans said it could be a thyroid issue).

6. I never gotten a Lumbar Scan, I have only gotten a MRI with and without contrast of my thoracic spine, and cervical spine. I also gotten a MRI of my brain with and without contrast.

I’m at a complete loss of what to do, my 1 year isn’t until September, and if my work doesn’t offer a different plan, I would have to wait until then(and pay 4x the amount which I don’t really have).Every week it has gotten worse, and I cry on the days my boyfriend isn’t here to help me. I also do not have the family or friend support either(none of them took my pain seriously, and didn’t believe me, and have ghosted me, or stopped talking to me). I been keeping it all to myself besides my boyfriend, and I been trying to push it until my one year, but I also know that it isn’t the smartest thing to do with a syrinx, and or the pain I am describing. Does this sound familiar to any of you with other comorbidities of Chiari??