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stellakitty

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About stellakitty

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  1. Maxine- Have any of your docs put you in a collar yet? I wear a Miami J right now but I'm getting a custom one because my neck is too long and skinny for any of the pre made collars to fit... I habve to wear it anytime I am sitting or standing (which isn't often). I'm seeing Dr. Oro right now and it looks like I'm going to be having TCS surgery and then we're planning on going to TCI to have the patch removed and fusion (can't fly right now)... I had my wisdom teeth in feb removed and what the OS did is he put the head down below my heart and he kept my collar on and he tried not to open my
  2. Strangest place... Hmmm... I've fallen off the toilet more times than I care to confess and then can't remember getting up and going to the bathroom and wonder *** I'm doing on the bathroom floor with my panties down around my ankles. But I've read on some website that is a common occurance, only for me it happens just because I'm sitting there.... Strangest thing anyone has ever said... My mom and I were taking the Amtrack back from Milwaukee 2.5 years from a nsg consult to dx chiari malformation... We were at the Chicago station and I kept passing out... Finally this man carried me to
  3. I have Chiari I (decompressed June 7, 2006), Cranial Cervical Instability, Tethered Cord Syndrome, all caused by SEVERE classic EDS... Even after I get the CCI and TCS surgicallly fixed I will still have Dysaut. Hopefully I will not be totally incapacitated by symptoms... Right now I sleep (live) on living room floor and am home bound due to symptoms. The goal of the surgeries will be to bring a functionality to my life not a cure.
  4. Hey... I have chiari malformation (which caused brain stem and spinal cord sompression)... My decompression surgery which was preformed 2 years ago (on June 7) has failed because the surgeon didn't take my severe EDS into account and I know have bad cranial cervical instability (my head is sinking into my c spine and when I flex/extend my head my vertebrae come out of place, causing trauma). I also have Cervical and Lumbar DDD, along with thoracic scoliosis, and kyphosis... We also strongly suspect that I have tethered cord syndrome. In my case dysautonomia hasn't been CAUSED by my spinal
  5. I need to say this... You can't break up the fetynal tablet... It is a tablet that you stick between your gum and cheek right above your molar and it fizzes away.... IT works in <10 mins... Any crushed tablets (and with the sucky packaging when you try to open the tabs you get alot of crushed tabs) you have to throw out. And once the tab is exposed to air, IT MUST be used....you see, your idea wouldn't work. Flop... I used Fentora BEFORE i was on the patch. Most docs prescribe oxyodone for breakthrough pain... BUt I am still having a hard time understanding WHY you want to start off on
  6. STAY AWAY FROM FENTORA (the fetynal lozenge).... I tryed it and I am opiod tolerent.... I was on it for headaches from my chiari and cranial cervical instability... I'd only take it when the headaches left me in pain to the point where I was barfing and on the edge of fainting from the intensity of the pain. I ended up addicted. First time EVER! I stole them from my mom's lock box and didn't even remember... It would knock me straight out for several hours (this is someone who goes to the ER and last time I got 3 mg of dilaudid and 75 mg of bendryl due to itchyness from painmeds... I was
  7. I don't have scolisis that bad... At last measure it was 28*... I also have kyphosis. And yes I have EDS and chiari.
  8. I just wanted to say be careful with the canes... If you *really* don't feel good sit on the floor. My cane at least isn't very steady. I don't use it anymore because I progressed to a wheelchair (and now I can rarely get out in the w/c but...)... There were several times where I felt dizzy and whipped out my "handy-dandy SEAT CANE!"... Either I would lose my balance or I would just pass out but either way the result was the same... I ended up on the floor. Just an FYI... But I do (did) like my seat cane. I took it on a photography field trip to downtown Denver 4 years ago and if I hadn'
  9. I concur with Sophie... Also... Chiari decompression most likely isn't going to cure you of POTS but help with your central nervous system symptoms. I see Dr. Menezes in Iowa (for now... I go back on jan 18) and he told me that even after my spine is fused (I''ve already been decompressed... overly actually, which I will get to) I will STILL have sytmptoms. His genetcist concured... The hope is to get me functional (I'm homebound, practically "floorbound", I sleep on the floor). Another good reason to procede with caution is that this surgery has many risks... Example.... I am now par
  10. Before letting him cut into your head you NEED to be evaluated for a connective tissue disorder... If you have EDS or something that changes the gameplan... Unfortunately I know from personal experience!!! I had the surgery June '06 and went from being unable to sit upright and on O2 (with tons of other sx) to putting around the mall wihtout my wheelchair like a normal teenager. But this was after I had contracted Bacterial Meningitis AND several strains of staph that required the doctors here in Denver to go back into my head only 3 weeks after the surgery. According to my doctors I'm v
  11. It depends on how obvious the herniation is... Mine was not caught by radiology. However when we showed the films to my pcp before sending them to the nsgshe said that looks like it right there. Typically you have to send your MRIs out to someone who specializes in chiari and related disorders. Not to mention alot of doctors don't believe that chiari can cause symptoms (in truth, there are alot of people walking around with CM asymptomatic... it's when the CM blocks off CSF flow, and causes brainstem compression that there are issues).
  12. Hi.... This is Angie's daughter, Alexa (I'm the one with Chiari, dysautonomia, neck junk, EDS).... I have so many symptoms due to the chiari cervical stuff. We have determined that my disk issues are from Cervical instability/ cranial settling. We first found the bulging/ herniated disks when I was 16 (I'm now 18) and needless to say that's rather young to have disk degeneration. I have fairly severe Ehlers Danlos as well. Symptom wise I have had a SEVERE unrelenting headache at the base of my skull for almost seven years... It has not gotten below a 7/10 on the pain scale even with narco
  13. Sure can. We belong to this club, believe me, you don't want to be a member. Angie
  14. I definately don't have ADD or ADHD... I have always been a "go with the flow" kinda gal... Even when I had a knife sticking out my gut (NOT when they sent me to the pysch ward!) and last June when I was being wheeled into brain surgery. I can just sit down and get my school work done by myself with minimal self proding (I have had "senioritis for the last 2 years...), even though I haven't been able to go to school.
  15. Joey and Sophia... If you guys are willing... I will send you two a PM. I think that's enough... I don't want to end up overwhelmed... Thank you! I will let you know what the results end up being.... Alexa
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