Post-op - do you........

[denverluv]

Get the "twitches"? Sometimes I feel like I am going to go into a seizure! My entire body will just jump- sometimes just my legs but when my whole body does it I mean it's literally like I am going into a seizure! It is so weird! I have noticed it happens more when I have my head down (like bowing for prayer or reading) but sometimes it will just come out of nowhere - picture it like if you scared someone and they jumped - that's what it looks like!

When this was happeneing right after surgery the doctor said it was just my nerves re-connecting - and yea I know I am only five months out (that's it? LOL) but geez- it is so weird! I guess if that's all the side effects I have from surgery I am lucky - I am just wondering do any of you post op do this too?

Also, I am still numb in my fingers and toes at times. And lately I woke up in the morning with severe back pain (remember I am STILL on Norco and morephine so to be feeling any pain and pain that is severe is a little unsettling) and my whole right side was numb - that never happened before the surgery, and remember my right side was where I was having the issues before surgery.

Do you think its just the damage done beofre surgery? Or do you think it could be the syrinx or TC? I think they said I didn't have TCX, but they wanted to see the syrinx shrink a bit more to be sure. I dd alreasdy have surgery for that when I was younger, so I don't see why I couldn't have it again.

So, does anyone twitch all crazy? If so what has your dr said about it?
Anyway - Merry Christmas!

[burdzmom]

this is crazy! i read your post last night, and i swear....it was like i was reading my own symptom/pain journal!!!  everything you have been feeling is exactly whats going on with me.  my eyes feel like they are hooked up to a tens unit....that at any given second you get a zap, shock, whatever --- right in my eye balls. it about drives me crazy! and it doesnt feel good either!
the "twitching" you talk about- ummm yeah.....had that before chiari surgery and it came back 6 weeks after. now its worse though. my arms and hands move spontaneously now. before it was typically my legs. my hands tremble. i have pins and needles in my pointer finger and thumb (left hand) and now my hands sometimes hurt! crazy, but in the mornings they feel like sausages! YES,YES----ive drank plenty of water, dont eat unhealthy and keep away from salt....blah blah blah.....
your totally right when you say you feel like your going into a siezure.....though i have never experienced one, its only what i can assume it feels like. my entire body hurts for days because of the "tension" that is a result.
when i went to Hopkins in November, the NS there told me my chiari surgery looked fine, without flaws. BUT-----he emphasized that i have some autoimmune disease going on but couldnt determine which one. i figure this is what is causing my "issues" these days.  the one thing i am very curious about is my CSF flow. ive NEVER had a lumbar puncture done to check this level. though the doctors tell me i dont have a syrinx or TC. i guess thats why it was never done, no reason to suspect a blockage if neither one is present. Still----- could there be some sort of blockage of my CSF and these things are the result? who knows....... it seems to be all related to my central nervous system.
I do know that i  have had abnormal markers on some bloodwork that had been done numerous times throughout the year. After i analyze my symptoms and bloodwork resluts, self - disect, investigate, and diagnose myself via GOOGLE- it all seems to point at LUPUS.....ugh.....really. (insert eye roll here)
I wonder if what happened to me prior to surgery could of been viral. related to this autoimmune disease and the doctors stumbled upon my chairi.  they didnt probe into bloodwork or medical history to see if something else could have caused my episode. then to be told i had meningitis post op - im thinking they just called it that but really something else was showing on my bloodwork that they didnt take the time to look into further.
now that i vented and re-read what i wrote, it really pisses me off! i am sitting here, feeling like a*s and this "autoimmune disease" has taken complete control of my life. this chairi has forever changed my life. (though im glad it was resolved, since i may not be typing this had they not  ) i can completely relate! all that you have going on is like your my clone or something. LOL! unreal....... if you find a magic pill that takes this all away-i will fly out to you and pick it up personally. for realz......

take care polar bear-
jil


OH!  why such a big dose of pain meds?!? i dont take ANYTHING like that. the only med i even take is Lyrica, wellbutrin and cymbalta (all moderately low doses) and some vitamins. typically i just suck it up until i absolutely cant take it anymore - then i take 2mg of dilaudid.....cant take anything else (dumb allergy)
so i think maybe this could be related to meds - but not really......i had the "twitching" before surgery and wasnt on any meds. not even B/C......(dumb hormones)
hmmmmmmm.......................i dont get it.


still want you to feel better though. let me know what is new. <3

[selmaS]

Hi, I am sorry u r having these issues.,..to be 5 months post op and still be on strong meds u must have something else going on...and u r right it could very well be some form of damage that happened pre op.

May I ask what ur dr has told u about the surgery to date?....I guess u would have had ur 6 week post op visit...and u have a month to go for the 6 month visit.....but u should know the meds u r on at this point is not typical.

I had a bulging disk that post op slipped further to be creating a CSF flow issue, and it can cause many of the same issues as chiari...the numbness, even the twitching...but that could also be from the meds.

I did have the twitching post op and it slowly went away...I do startle more than most...so I am jumpy...but the twitching  i do get on occasion when I have pain that I take stronger meds or if I over do.....

Keep in mind u r still healing, but ur dr should give u some indications as to y u r on such strong meds at this point of ur recovery.

"selma"