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  • MRI tomorrow

    Hi, finally we have an MRI booked for tomorrow for my son Tobey (nearly 2) we've been waiting a year but due to kidney problems he needs a general which meant a long wait, I'm just nervous now that it'll be cancelled or that it'll go ahead. He has had a general before but it's just so terrible when you kiss them bye as they go to sleep and the wait is so stressful. Then once through that sucessfully (touch wood etc) I'll start worrying about the results!!! The surgeons still want to do a fusion asap but I need the results and a lot of internet trawling and prob millions of questions here(!) before I'm convinced-oh well one thing at a time I'll seal with tomorrow first-take care all.

    Jenny x

  • #2
    Jenny - I hope the MRI went well today. I'll be waiting to hear the news. Good luck and keep us posted.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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    • #3
      thanks, it went ok, in fact we got in early and were home by 7ish, we were expecting a late night so were very pleased.

      I had a chat with the surgeon about the next stage and they are still assuming he will have surgery to correct the hemi vertebrea and do a fusion. They seem to think I'm insane when I ask if there are any other methods of correction. It just seems that everyone on this board has braces etc or is surgery the norm?

      It just seems so much on a 2 year old but the surgeon (the fourth I've seen) is still certain its the only way and it does seem to be normal procedure at GOSH-is this normal everywhere?

      I don't know the degree of the curvature but the sureons keep saying that they don't know the progression it will take so it is better to correct early so the child doesn't remember the op.

      I'm just after knowing what people think and if there are any good questions I should ask at my next appointment with the surgeons in a few weeks.

      Thanks everyone!

      Jenny

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      • #4
        Good morning Jenny,
        First I sincerely hope and pray that you will have some positive news from your MRI. I was four years old when I had the first spinal fusion in the State of Michigan in 1954, I have no rods or metal parts of any kind. Nor have I had any further surgery done on my back, sure the medical specialists would love to operate more. In fact it could or could not help, that is my decision and in fact I prefer no surgery. My spine is over 80% fused and is severe scoliosis with roto and spinal stenosis, but again I prefer no surgery. But anyway, as you can see even at my age of four, I was able to live a normal life, but I had to fight for inclusion all my life. I was in the Military, had factory jobs, gone to college and received a M.A. in rehabilitation. But now I can no longer do the sitting or standing to keep gainful employement so I have applied for SSDI and my pension. But my parents did what they thought was needed and I did too.
        My daughter was born with a congenital disability also, severe scoliosis, she received her first surgery at the age of twelve after wearing a brace to correct as much as possible. It did a great job and she still received the surgery and a rod. It is a very difficult decision to make, and a very scary one also. But life will go on, and the medical knowledge today is so much better than fifty years ago. My daughter is now twenty-two and working full time, while trying to make a decision on college or not. Empowerment and information goes a long way, I hope you consider everything, small and large and listen to God.
        Live long and prosper!

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        • #5
          Thank you both so much, we found out yesterday in an appointment with Tobeys nephrologist that the MRI showed a normal cord which is a relief, she didn't want to go into details as she'd reather leave that to the ortho team but at least our minds are at ease on that issue! She also thought it looked quite mild but again wants us to keep an open mind and talk to our ortho consultant. We should get in to see him in the next few weeks and then start getting some answers I hope and then be able to make an informed decision on surgery, then I'll be back with a list of questions!!

          Thanks all

          jenny

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