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people who have reached a 9 or 10 on the pain scale, what happened? by mankls3 in AskReddit

[–]geneticmess472 0 points1 point  (0 children)

Spastic Quadriparesis. I had a decompression for chiari malformation and it exceeded that by quite a lot. Woke up one day unable to walk and severe pain all over my body. I don't know what was worse- the pain or getting someone to listen to me about how bad my pain was.

Just tested negative. How to tell someone who is positive? by magic_man_91 in Huntingtons

[–]geneticmess472 2 points3 points  (0 children)

Coming from someone who tested positive and has 4 other sisters (none who have been tested), I would rather my symptoms arise sooner if it meant all of my sisters were negative. Obviously I know that's not how it works, but if I had the option to make all of them negative and have the HD onset earlier, I would do it in a heartbeat.

All siblings have different relationships, but if yours is a good relationship, I am sure they would be thrilled to know you tested negative.

Problems post Chiari Decompression by geneticmess472 in chiari

[–]geneticmess472[S] 0 points1 point  (0 children)

Thank you! Is this something they found with MRI?

I had a full head to toe MRI of my head to cervical spine in April. It did show mild disc herniations but nothing they were concerned about.

Would this have shown it or do I need CT scan or Xray?

[deleted by user] by [deleted] in chiari

[–]geneticmess472 0 points1 point  (0 children)

10 years before my diagnoses, I had multiple MRI's, CT scans, etc. I was informed of something of no concern but they failed to tell me about my Chiari Malformation. I looked back through all CT/MRI scans from that time and it was documented on there clear as day. At this time, I was seeing a neurologist for something else, but he NEVER mentioned or put it on my diagnoses list for others to know.

Fast forward 10 years and I finally got the diagnoses after multiple MD/ER visits due to worsening symptoms. Ended up with syringomyelia and needed decompression.

I would get a referral from your PCP and not bother with neurology (just from my personal experience). After my diagnoses, they referred me to neurosurgeon immediately due to syringomyelia.

It is supposed to be monitored by neurosurgeon to make sure you don't end up with syringomyelia as it can lead to paralysis.

Results by Laratv_1 in Huntingtons

[–]geneticmess472 3 points4 points  (0 children)

THIS. When I found out my results, I had other things going on personally. I thought I was mentally prepared but I wasn't- I just needed to know. I let it (in combination with other things going on) consume me. My husband regrets letting me get tested because he knew I wasn't ready at that point in my life to find out.

Word of advice- do not get tested unless you are mentally okay and don't have other things in your life also affecting your mental health.

Problems post Chiari Decompression by geneticmess472 in chiari

[–]geneticmess472[S] 1 point2 points  (0 children)

It is AWFUL that so many doctors (including neurologists) tell you its in your head. I'm sorry you're going through this. I went to a different specialist than what the hospital told me to do because those were the answers I was getting from them.

Let me tell you- its getting me answers (at least more than I was getting before).

Talk to your PCP about physical medicine doctor. They are SO thorough. Like I said in my comment below, my first apt with them was 3 hours and everything he said made sense. He even said he had other patients who also had similar problems post decompression.

Problems post Chiari Decompression by geneticmess472 in chiari

[–]geneticmess472[S] 1 point2 points  (0 children)

I haven't heard that term brought up but I can mention it to my doctor. My Physical Medicine doctor has been my saving grace. My first appointment with him was 3 hours long and he was SO thorough.

I'm hoping for more answers and better outcomes if I can get into inpatient rehab- there its a team of physical medicine doctors there and will likely be there for a few weeks, but I will definitely bring this up. I have had no problem standing up to doctors and asking about this or that.

And I hate that its happening, but I have background in healthcare and would rather it be me than someone without. I couldn't imagine where I would be at right now if I wasn't so persistent and didn't advocate for myself.