Results 1 to 8 of 8

Thread: Omg!!!

  1. #1
    Join Date
    Sep 2006
    Location
    D/FW Area
    Posts
    8

    Cool Omg!!!

    When it rains, it seems to pour!! I had surgery in 1993, an extensive A/P fused from T9-S1, complete with rods and pedicle screws. The year before last, I was having some severe pain, and decided to see a pain management specialist. During this last year, it dawned on me that I was "listing" when I walked, and that I was limping as well. I had pretty much ignored all of my back pain/problems prior to this because I was dealing with some pretty intense family problems. After the death of my mother, I decided it was time to take care of myself again.

    Went to a specialist, had my consultation and discovered that I, like so many others, had flatback syndrome. Good news/bad news. Can be repaired...tests to follow.

    Had my myelogram and they discovered that I have mild Chiari malformation. Scared the hell out of me (I am a nurse!). Brain MRI followed to check that out. MRI shows that it was probably congenital, and since I am 47, it is unlikely to change-but I have a neurosurgery consult coming up for that. Oh, by the way-did you know that you have a tumor in your right parotid gland?? Very rarely malignant, but needs to be checked out as well. Another appointment with my PCP and probably a general surgeon as well. Maybe biopsy, maybe not.

    Right now, I am feeling overwhelmed. Logically, and professionally, I know that it is good to find these things out now. Emotionally, I am wrecked. It has just been a little over a year since I lost my mother...and right now...I want my mommy badly. By the same token, I am glad that she isn't here to deal with this. She didn't handle my original surgery very well.

    Still have to have bone density, stress test and pulmonary function tests to follow. Needless to say-thinking of having these tests doesn't thrill me. Wonder what else they will find??!! Like one of my patients said the other day: "I was healthy till I started going to all these doctors!"

    One foot in front of the other, the journey continues. More to follow later...

    Mary
    A/P Repair 12/93
    Scottish Rite Instrumentation
    Fusion T9-S1

  2. #2
    Join Date
    May 2005
    Posts
    42
    Just wanted to offer some sympathy, Lilly. I'm also in my 40s and sometimes feel I'm just waiting to see what will go wrong or what the medics will find next! Don't know if being a nurse would make things better or worse - i suspect you can know too much! Currently I'm awaiting physiotherapy to get my lungs working properly following my op/pneumonia/tracheotomy, am facing further surgery to reduce the prominence of a front rib left sticking out after last surgery and am about to come off antibiotics for the MRSA I contracted in hospital and see if the wound starts weeping again (in which case the rods will have to come out)!

    You are not alone. As you say, it's a question of taking the next step and trying not to worry too much keep us informed!

    Best, Diana

  3. #3
    Join Date
    Apr 2005
    Posts
    913
    Hello Mary,

    So sorry for everything that you're going through, as if a spinal fusion wasn't enough I sometimes say that it's pretty often that big problems and issues in life happen to a lot of the same people who already have dealt with many things. All I can say is take it one day at a time, and try to deal with these issues with strength and courage, and if you ever need advice or support come here, even for venting.

    Take care of you.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  4. #4
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    Goodness Mary if its not one thing its another isnt it. Its hard isnt it. I actually lost my mum when I was 22 which is 31 years ago and I need her every single day. I think when we are sick and feeling down that is the time we feel that we would just love them to be there.

    You do sound a strong person even though you doubt that right now. You will wonder where I got that from I know but I just feel it in my old bones.

    I am so glad that you wrote to us and agree with Sweetness there is not a better place to ask things, vent, have a cry which I do quite a bit and just generally have some people who understand what you are going through.

    God Bless
    Macky
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  5. #5
    Join Date
    Sep 2006
    Location
    D/FW Area
    Posts
    8
    No new news to reoort right now. Still wading through the endless waiting of getting appts. with my respective docs. But hey--no news is good news--right??

    I just wanted to give a quick "thanks" to everyone for words of encouragement. What a Godsend this site was!! It is great to be able to communicate with others that are in my same boat!

    Today is a good day, which means I get to do laundry. Blea!
    A/P Repair 12/93
    Scottish Rite Instrumentation
    Fusion T9-S1

  6. #6
    Join Date
    May 2006
    Posts
    36

    This is the place Lilly

    Hi Mary (Lilly)
    I just want to start by welcoming you as well to the site, I also was very overwhelmed and so releaved when I found this site. I really needed it badly and like you said it is wonderful, and as you already know alot of great pople to talk with.
    Ican't beleive the luck you have been having, I admire your courage, please keep use informed. Anytime you need to talk. The people here are really great, and some like me have there private adress to which you can write privatly as well. (you probebly already got that) .

    I hope things work out for you, please let us know. Sorry also if I am a little lat on this response but I haven't been able to sit alot so I don't get to visite the sit as much. But like I mentioned somewhere else Lyrica is working at helping manage alot of the pain. So I will be on more often now.
    Take care of yourself, anytime you need to write about anything I am here and so is everyone else.
    Best of luck, Cic.

  7. #7
    Join Date
    Sep 2006
    Location
    D/FW Area
    Posts
    8

    Wink Lol

    Thanks for the words of encouragement Cic! I sometimes wonder how I can keep going as well, but if I couldn't laugh about it, I would spend all my time crying! Not that I haven't had my share of pity parties with me, myself and I!

    My mother always told me to put on my PF Flyers and pick myself up and keep going. I honor her memory by trying to do what she told me to do (mostly! )
    A/P Repair 12/93
    Scottish Rite Instrumentation
    Fusion T9-S1

  8. #8
    Join Date
    May 2006
    Posts
    36
    Hey Mary,

    I know it isn,t easy when we are missing a parent and are going trew alot of serious crap, it is hard , you have so much you would want to tell them. I lost my father it will be 6 yrs this Nov. and eventhought my Mother knows more about my back then he ever did,(she as scoli too.)He use to always ask and try to be as informed as he could, and I still to this day miss that. I can,t talk to my mother about it as much, because of her worring, she is 72 now and I feel she just doesn,t need to know all the details, she pitties me too much and I ate that very much.
    Scoliosis as made me who I am, all that I have been trew was very difficult, but I wouldn't change a single thing. I get to see every six month just how lucky I am, when I have my appointements. Their are so many worse off then me.
    And being a mother of two, (another miracule) I have to be strong and not make this such a big deal. Example My f------n neck is out again, I become totaly in unbearable pain on both sides of the neck and harm down to the shoulder blades, all because of trying to bruch my hair. I tell the kids it is no big deal and I explain that the hooks are probebly causing this and this is why I am going to get more test to see ........... I take the meds and move on. I have too. I don,t want to make it a big deal so that if both my son and daughter end up having it, it will be taken as it come and no worring about it for nothing.
    But , let just say that since Sunday I am a little pist off and get to show it once there off at school because this neck situation is very unpredicatble, and prevents me from doing anything. Being and artist I am in the middle of a contract which needs to be out this wk. Not good.
    I have a MRI full body schedualed for Nov. to see if the hooks are causing these problems like sweetness, and to see other problems the I have been having.
    Anyway, blah blah blah, enough heh! Take care of yourself, keep in touch.
    Cic.(in case you are wondering where I get the Cic!from CÚcile, A friend of mind who past away at the young age of 40 use to call me Cic all the time. I use it since is passing so I don,t forget him) Just thought I would share.
    P.S. Hi sweetness ,!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •