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Thread: "virgin"

  1. #1
    Join Date
    Apr 2004
    Location
    WILTSHIRE, UK
    Posts
    9

    Thumbs up new member from uk - would really appreciate some help !

    I WAS BORN WITH SCOLIOSIS - SO TO ME THE UNEVEN HIPS, SHOULDERS AND LEG LENGTH IS PRETTY NORMAL. AND I COPED WITH IT REALLY WELL UNTIL 18 MONTHS AGO MY LIFE HAS BEEN TURNED UPSIDE DOWN - PLEASE HELP !!!!!!!!!!
    I am 32 years old and luckily (so far) have not had surgery for my scoliosis. when i was 16 i stopped growing so the doctors said hopefully my curves (I have one at the top and one at the bottom of my spine) should be ok. and that was true until about 18 months ago when out of the blue i started to get excruciating back and rib pain. I had recently moved area so these new doctors did not have a lot to go on (infact i had my gallbladder removed - although it did turn out to be diseased and i found i had a lesion on my liver and one on my kidney - is this scoliosis related ?) after a lot of hospital admissions it looks as though my spine has trapped a nerve and i am having a scan to confirm this, but what i don't know is if anything can be done about it if this is the case - does anyone know ? at the moment my husband has to do everything around the house, i am in too much pain to do anything, i also have to self-catheterise now and have lost the feeling in my right thigh, although this is also very painful at times. i have never before contacted anybody about my scoliosis so i would be over the moon if someone contacted me. i have not lived in wiltshire long so don't have many friends, and now i am virtually housebound it would be really really great to here from you.
    can anyone from the uk help me with a claim for dla. i have applied but been turned down, they say, there is nothing wrong with me ? any comments ?
    Last edited by ANDREA W; 04-17-2004 at 11:01 AM.

  2. #2
    Join Date
    Apr 2004
    Location
    WILTSHIRE, UK
    Posts
    9
    wow 47 viewings, but nobody wants to speak to me, i am most upset !

  3. #3
    Mary Lou Guest
    Andrea...
    Don't be upset that no one has responded to your posting. We all read every posting on this site, but I personally can't offer you an advice since I'm dealing with my 12 year old daughter's Scoliosis. Don't give up hope--there is someone out there who is going through what you are going through and will respond.
    Mary Lou

  4. #4
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Since the pinced nerve is causing so much problems they might do fusion of the area (if it' scoliosis caused). I have heard of a surgery that open up the openning that the nerves come through, but I don't know anything else about it. I will keep you in my prayers though! God Bless.

  5. #5
    Join Date
    Apr 2004
    Location
    WILTSHIRE, UK
    Posts
    9

    Smile

    thank you mary lou and mary k you have made me feel much better to know that you have read my posting. Mary: I am a roman catholic so to know someone is praying for me (and is a stranger) is very touching. Mary Lou: I hope your daughter is not too badly affected.
    Last edited by ANDREA W; 04-26-2004 at 03:49 PM.

  6. #6
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Andrea,

    Did the pain come after or before the galbladder surgery....
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  7. #7
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    Andrea,
    I know that the medical system on that side of the pond is a bit differant, but do you think that your insurance will let you see a doctor that specilizes in adult scoli? A doctor that deals with adult scoli may be able to help you immediately and in the long term.
    Good Luck
    SandyC
    SandyC

  8. #8
    Join Date
    Apr 2004
    Location
    WILTSHIRE, UK
    Posts
    9
    dear connie
    The pain came 6 months before my gall bladder op. i am new to this area of the country so the doctors treating me here, did not know the extent of my scoliosis, because my records were in another part of the country so when i presented with this pain they asked me what did i think it could be, i mentioned my scoliosis, but they disgarded this. I started with the pain in December 2002 and had my gall bladder out in May 2003, and the doctors thought this would cure the problem because it was diseased and stuck to my liver, but 5 weeks later i had not recovered from surgery and had not returned to work and was then readmitted to hospital, i was there for 2.5 weeks undergoing all sorts of tests and on a morphine drip for the pain. it was then during x-ray and CT scans the doctors had to agree that it looked as though it was my scoliosis causing the problem. it has taken all this time and suffering ! I am due to have an MRI scan this friday to see what can be done.

    sorry it is such a drawn out answer, but nothing seems straight forward with my medical history ? hope it helps x

  9. #9
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Andrea,
    Here's hoping that they see something. It isn't often that you actually pray for something to be wrong, but this is one of those times! Unfortunately the medical system isn't that much better over here either! I went through something similar with my stomache about a yr and a half ago. Keep shouting until they decide to listen. You're the one that knows your body the best!

  10. #10
    Join Date
    Apr 2004
    Location
    WILTSHIRE, UK
    Posts
    9
    thanks mary, i know what you mean about hoping for something to be wrong, i think only people who have something wrong, could understand this almost strange way of thinking, but like you say we know our own bodies best. why can't all the doctors here in England think like you and me God Bless. Just got everything crossed for friday now. I have had an appointment come through today for a pain clinic appointment, which i should have gone to on 27 May 2004, but I rang my own doctor and said i was in so much pain i could not wait that long, so i am going back again, to the same hospital, hopefully for the results of the scan and some more pain killers on Thursday 3 May 2004, i will let you know how i get on, if thats ok with you, i feel really good talking to you. thank you.

    Sandy: unfortunately or fortunately, whichever way you look at it, we do not have insurance here in England, we have our local general practitioner who then refers us on to the consultants at the hospital, we get this all for free, which i suppose is good, but then they make a lot of the decisions for you and you have to, like Mary K says, do quite a lot of shouting and jumping up and down, before anything is done. but thanks for the thought, i really do appreciate it ?

    I would be interested to here all of your stories, i feel very selfish melfish (as we say here) you may get bored

    thanks to you all, hope to touch base soon xx

  11. #11
    Join Date
    Apr 2004
    Location
    Brush, Colorado
    Posts
    89
    Personally I like exchanging stories! And I'd love to hear how things are going! It's good that you didn't wait so long for the pain clinic appt. It seems sometimes that the docs don't have a clue! After six months of runaround and being called a hypocondriact I insisted on a stomache scope. They found a polip just past the stomache, right where a lot of pain was. They removed it and, magicly, the pain stopped and I started to get better! Amazing isn't it? If you'd like I'll give you my e-mail and you can e'mail me.

    Take care and God Bless!

  12. #12
    Join Date
    Apr 2004
    Location
    new jersey
    Posts
    323
    Dear Andrea,.

    I believe your pain is coming from something else..They took out your gallbladder because it was stuck to the liver? why was it stuck...do you have adhesions...that is very painful..can u get a copy of your operative report and see if they did adhesionlysis on you,? if so I want you to go to a website and read about this doctor..he's in Germany..thats where I travelled from NY to Germany to have surgery, because he was the best in unexplained abdominal pain,..he will answer all your questions...look up ENDOGYN......His name is Dr. Daniel Kruschinski ..if you have more questions on this matter , EMail me
    connie
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  13. #13
    Join Date
    Apr 2004
    Location
    WILTSHIRE, UK
    Posts
    9

    MRI SCAN

    connie, it is really nice of you to take such an interest, but i don't suffer with stomach pains, it is back pain i have. Actually though i did have mystery stomach pains starting about 9 years ago, i suffered for 3 years until endometriosis was diagnosed and i had a hysterectomy at aged only 26, no children. In fact, I have had my long awaited, though much dreaded MRI scan today (that tunnel is awful isn't it ?) I was in there for a whole 2 hours, it does look as though something has been found, i was in absolute agony with back pain while i was lying there, so I was thinking to myself - surely something must be showing and i know they aren't allowed to say until a doctor has reported on the findings, but when i eventually came out, she did say to me,"your back must be in bits after that", so i took it from that they saw something and she was very keen to make sure i had a follow up appointment, which i have on Thursday 6 May, so fingers crossed. keep you posted.
    MARY. have my e:mail address by all means, then I can e:mail you back. WESTON.LINDSAY@VIRGIN.NET

    best wishes to all - andrea x

  14. #14
    Join Date
    Dec 2003
    Posts
    7
    Hey Andrea!

    Our history's sound very similar. I wore a brace when I was a teen and now at 32, I have to say, I'm a lucky woman. I don't really suffer much---some stiffness, but what can you do? However, a couple of years ago I picked up a box of paper at work. Sounds harmless, right? I pinched a nerve and sweetie, when I tell you I was miserable I'm not exaggerating. By the end of the day at work, I was COMPLETELY bent over. I went to chiropractors, massage therapists, physical therapists....nothing. Finally, a doctor told me I should see someone for depression because I was bummed out that I was in my twenties and waddling around like I was pregnant six months after lifting a box! I never saw him again and I went to a sports injury physical therapist in NYC. I got a gym membership...a personal trainer...yeah...it cost a lot, but that was the only thing that helped. Exercising with a personal trainer who really knew what she was doing, who worked from an exercise prescription that my doctor wrote really helped me. If you find qualified people, it really can't hurt. Best of luck to you!
    Cristy

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