~Doctors Appointments~Feel free to share appointment updates in this section.
Welcome To EDS-Kids
EDS Kids is a support group and community dedicated to helping children and young adult who suffer from chronic pain resulting from illnesses and genetic conditions like Ehlers Danlos Syndrome and Fibromyalgia. Ehlers-Danlos Syndrome (EDS for short) is a genetic connective tissue disorder which primarily causes chronic joint pain and joint dislocations. EDS Kids is a community dedicated to helping not only sufferers of EDS but their family and friends too.
So I'm being referred to a neuro surgeon and I'm scared to death. First of all I think its just scary that I may need back surgery, and second, just the thought of someone messing with my spine and pretty much holding my ability to walk/move/feel in their hands seems really risky to me.
I know that these guys are super specialized, but it still is scary to me. I've never had a whole lot of luck with surgery and the thought of a failed back surgery scares me more than any failed knee surgery that I have had or could possibly ever have again.
I don't even know if I'm even gonna have surgery, but just the thought is scary. I sound totally redundant, so I'm sorry, but I just can't get the thought outta my head.
I'm still waiting to find out when my appointment is, and I'm really hoping that it will be rather soon, although that means that something is wrong. So I guess I don't really know what I want.
Getting my Spine fused sounds scary and not fun. I guess the only good thing is that the area that I live in has AMAZING spine surgeons, so I'm not going to be seeing some butcher or something.
Sorry for the little ranting/venting things...I'm very foggy, so I don't know if it makes any sense I'm in a lot of pain and funky feeling from my pain meds.
I guess I just can't win.
__________________ Staci Jo *21*
When the world says "Give Up"; Hope whispers "Try one More TIme."
Classical EDS, Fibromyalgia, Depression, Anxiety, DDD & Bulging disk at L4-L5
I'm a moderator here and if you wanna chat or have any questions I'm here.
In your other thread I told you about my mom who had a spinal fusion...I'm sure she'd talk to you about it.
I am supposed to see one myself...for Tethered Cord and Chiari Malformation. It is scary because it's surgery on my spinal cord and on my brain!!!!!!!!!!!!!!!!!!!!!!!!!!!! AAAAAH
I'm here for you...as everyone else is...but yeah I know it's really scary....but you gotta do what you gotta do (aaaah Rugrats)
__________________
What I always wish I was doing ---> :
I'm one of the mods here...feel free to PM me anytime (or IM too)
I just got a call from the doctor and my appointment with the neuro-surgeon is February 20th. So they got me in pretty quick, so I don't know if thats a good thing or not...
__________________ Staci Jo *21*
When the world says "Give Up"; Hope whispers "Try one More TIme."
Classical EDS, Fibromyalgia, Depression, Anxiety, DDD & Bulging disk at L4-L5
I'm a moderator here and if you wanna chat or have any questions I'm here.
I just got the results of my MRI from my doctor and it seems that I have a bulging disk. They didn't give me any other info, but I guess I'll find it all out when I see the Neurosurgeon dude next week.
__________________ Staci Jo *21*
When the world says "Give Up"; Hope whispers "Try one More TIme."
Classical EDS, Fibromyalgia, Depression, Anxiety, DDD & Bulging disk at L4-L5
I'm a moderator here and if you wanna chat or have any questions I'm here.
Thinking of you Staci!!!!!!!!!!!!!!!!! (((((((hugs)))))))
__________________ Gwendolyn
*21 years old*
EDS (Hypermobility and Classical), POTS, NCS, CFS, IBS, GERD, Fibromyalgia, a sliding hiatal hernia, Depression, Gastroparisis
I am beginning to learn that it is the sweet, simple things of life which are the real ones after all.
~Laura Ingalls Wilder
The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.
~Helen Keller
So I'm back from seeing the neurosurgeon. It went ok. He is putting me on a series of steroids to decrease inflammation in hopes that this will reduce some of my pain. I have degenerative disk disease in one of my disks and this disk is also bulging at this time. I'm also being sent to physical therapy and apparently this generally works for this type of problem. Surgery will be a very last resort.
I'm really not looking forward to taking the steroids...I know that I'm gonna be one of the cursed that gets a billion side effects, but the other option was to get them injected into my back, and I'd rather avoid getting a needle stuck in my back.
__________________ Staci Jo *21*
When the world says "Give Up"; Hope whispers "Try one More TIme."
Classical EDS, Fibromyalgia, Depression, Anxiety, DDD & Bulging disk at L4-L5
I'm a moderator here and if you wanna chat or have any questions I'm here.
crappy. I had a steroid epidural and its causing me a lot of pain and PT doesn't seem to be helping. Its kinda disappointing, but I'm gonna give it some more time.
__________________ Staci Jo *21*
When the world says "Give Up"; Hope whispers "Try one More TIme."
Classical EDS, Fibromyalgia, Depression, Anxiety, DDD & Bulging disk at L4-L5
I'm a moderator here and if you wanna chat or have any questions I'm here.