Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Severe Scoliosis

Thank you, Bridget for your post. It is encouraging to read about your aunt and friends. So there is life after the surgery? I hope I do have to have surgery because I can't imagine living in a body brace for the rest of my life.

Gee I wish I could just scoop you all up here with me. My world right now is very bleak. Music used to lift my moods but even it is not working. Just sitting on the edge of my computer chair crying and rocking back and forth like a baby. How long does the surgery last? How many rods have to be inserted? Will I ever be able to walk again? How am I going to look after myself and wash? I do not shower for I have already fallen twice in the shower. Who will I have to speak with?

You know the US medical system backrupts people but it does work. Here in Canada yes the health care is free, the waits are much longer and the patient is often left to find out information for their overworked doctor.

Hey there Magician,

I had scoliosis when I was a kid and just missed the back brace narrowly as I "grew out of it"?

When I had a Nuclear Bone Imaging scan done last year or so, my images show a shocking bend in my spine that looks terrifying to everyone except my doctors - they consider it withing normal limits. I've often wondered if this scoliosis had anything to do with my particularly harsh AS symptoms.

Severe scoliosis must be horrible to live with and I hope you find some relief soon. If surgery could put an end to your suffering, then at least it must be nice to know that you could put an end to it, as terrible as "going under the knife" would be.

Take care of yourself Magician,

Chris

(Can I call you Thaumaturgist or Prestidigitator?)

thank you, inanna. Too much crying for me today. Eyes look like vampire eyes. Red and bloody looking. I find it amazing all the support you are all giving. Thank you everyone. ;}

Hi Magician, It makes me so sad to read your post. I know what you mean about family and friends thinking you could have surgery and everything will be fine, i went thru the same thing with my surgery we had just moved from our home and had to rent 30 mins from where the shell of our new home was being built and my husband worked his full time job and then came home at night to get the kitchen and 1 bath put together so whe could move into it quickly. My little boy was 4 and i had the surgery because everybody eles thought it would not be good to put off, but something in my head kept telling me to wait that it was not a good time. Within 2nd week of surgery i had my son all by myself and had to drive him the 30mins everyday to pre-school so he would know kids in his new home town, by the 3rd week i was doing laundry at the laundry mat and i know now i should have waited it was not a good time, i did not heal well like i should have. My leg pain went away but never back pain from scar tissue, My surgeon had to go thru back instead of abdoman since to much scaring from many pelvic surgeries. It has been 5yrs since i got sick and just this past year my husband has started to help more and offer the back rubs cause he didn't believe in the fibro and now i have been dx with the AS that can be seen on films and bloodwork for the gene. He just was always use to me to being superwoman, working and keeping the house going that involved me spoling him also. He was in denial and some counseling got us back on track. Its never easy when someones partner gets sick.

Like everyone eles has said you need to stay with us we are your friends and family and we know how you feel.

Please smile

I agree everyone around me seems to think the 'solution' is to have back surgery. None of them have ever faced this. Yes, I know others have and very successfully too with their surgeries. I do not have all the information I require. My dr. is still waiting for the xrays to be forwarded to him so he can see what I am facing and guide me to the appropriate health people. Dumb system here. They forward the letter from the Arthritis Specialist first BEFORE the xrays are sent. Totally backwards. Then they leave the patient (me) in the dark to find their own sources of support. So backwards.

I will not make any decisions without complete information. I only have one spine and it must last for my entire life. Other than crying a pile today my mind has totally not been focused on anything. I wanted to go back to work but finding a job is tough in this area. Younger folks get hired before older. That makes me sound so old. I am not even 45 years old. Well close, 44. This is not how I dreamt my life would be.

I am smiling a very ironic smile. Sad smile day. :~ (my back). S shape, piece of work.

I will be 41 this summer and i feel like i am 80. I had an si joint injections 4wks and only had one good day. I just did some stretching and it killed me. I can tell my left hip is totaly fused now compared to the other one, it is not clicking and i don't have that coming out of socket feeling anymore. It just gets tired easly. I have put on so much weight since my car accident last march, i am trying to exercises and my body won't let me. I am just going back in my recliner and heating pad. My house needs to be picked up, because my sister is coming this weekend and the funny thing is she is coming to help me clean, but i don't like for her to see my house cluttered, i use to be a neat freak to where it was boarderline ocd. My brain and body fight with each other and the body wins all the time!

Hi Magician - you can picture us all being that close to you because we are no further than your computer screen and keyboard. Day and night there seems to be someone on KA who you can talk to. So just imagine that you have scooped us all up and we are sitting there beside you comforting you and holding you strong.

thank you, Wendy for all the links and help you provided to me. More than I deserve. I didn't expect to be accepted into the AS family when I do not have AS. My gosh I can't even find information in my own city on the illness. I know we all share similar spinal issues. So very very kind of everyone for making me feel welcome. hehee just spoke with my old chiropractor. He confirmed he saw curvature on my lower spine on the xray I had done with him. lovely.

Hi, Chris. Sorry to hear you had scoliosis as a child but very happy to hear you missed the back brace. So glad. I know surgery will help (crossing fingers) but being left in the dark by my drs was not a nice thing of them to do. I was not sure what Thamaturgist or Prestidigitor meant and thought you were calling me a predator. lol
Call me Magic. Nice to meet you Chris.

Hi again Magic

I am in Winnipeg. That still makes us neighbors When you think of the www. Brandon is a two hr. drive from here.
Just to get your mind off things for a min.or two.
May I ask how did you come up with the name "Magician"? It is lovely. Not like "icky". Sometimes I wish I had chosen a better nickname. I usually have to explain that it doesn't mean that I feel icky or that I am an icky sort of person but it's just short for "Ichabod Crane". The Disney character in "The Headless Horseman...the charater under my signature."

You need to be brave Magic. Remember to come see us often.
You are with us now.You are family. That means that we care about you.
Ray