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Thread: Welcome to the Transverse Myelitis and Atraumatic SCI forum

  1. #11
    Senior Member Bhaskar's Avatar
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    Question TM : is there any hope ?

    Respected Dr. Young,

    I am suffuring from TM since May. 2003. I have only one question is there any treatment avilable today that can restore me to my previous state ?

  2. #12

    hope i am not butting in

    hi , i a mother of tm patient. he is 34. this just happened to him this last spring. we, He, has been through a lot, but doing better.. i wanted to get him involved in a group. he is ready now,,said so . so i am going to take a chance and post his email address so someone can invite him to join...i am sure he and cheryl could use a understanding helpping hand rob at eagleeagel0217@AIM.com if there is a group for me or my hubby , let me know. we both are having extensive, and risky back surgeries oct and dec.

  3. #13
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Bhaskar
    Respected Dr. Young,

    I am suffuring from TM since May. 2003. I have only one question is there any treatment avilable today that can restore me to my previous state ?
    Bhaskar, are you a complete or in complete TM suffer? Also, check out www.myelitis.org or pm me, click on my name, with your city and I can find the nearest support group for you. There are hundreds around the world.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  4. #14
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by birdiecup
    hi , i a mother of tm patient. he is 34. this just happened to him this last spring. we, He, has been through a lot, but doing better.. i wanted to get him involved in a group. he is ready now,,said so . so i am going to take a chance and post his email address so someone can invite him to join...i am sure he and cheryl could use a understanding helpping hand rob at eagleeagel0217@AIM.com if there is a group for me or my hubby , let me know. we both are having extensive, and risky back surgeries oct and dec.
    Your son can find a nearby support group by joining the TMA. It's free and they can connect him with a support group.

    For yourselves ask your doctor or search WebMD.com for groups. It does help to have city, state or country for aiming you at the proper help.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  5. #15
    Junior Member ev50's Avatar
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    Hi Zoey,
    Thankyou for your info, and I would be interested to know how you go with your neurologist, and how you cope with your condition. I found a lady in Queensland, with a Thoaracic Syrinx, who was running an information session on SM for disability week. Please keep in touch, I am still learning the computer and it takes a while for me to work this posting business out.
    All the best
    Evelyn.
    Last edited by ev50; 09-29-2006 at 05:23 AM.

  6. #16
    What kind of pain do you have and where is your syrinx? A lot of doctors have acted as though I was crazy when I decribe my pain or symptoms.

  7. #17
    I'm new to this forum and this ailment... Just diagnosed with C4/C5 stenosis and scheduled for fusion December 7th here in Austin, Texas, USA. I'm a 55 y/o teacher with 6 y/o triplets, previous compression fractures of T-12, L-1,2,3; also a Retired Marine and Volunteer Fire Chief. So much for King and country. Does tension work better than fusion? Does fusion fail [ 50%?] as high as I hear? Do I have any other options? Thanks!

    Chief Don

  8. #18
    Super Moderator Sue Pendleton's Avatar
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    Quote Originally Posted by Chief Don
    I'm new to this forum and this ailment... Just diagnosed with C4/C5 stenosis and scheduled for fusion December 7th here in Austin, Texas, USA. I'm a 55 y/o teacher with 6 y/o triplets, previous compression fractures of T-12, L-1,2,3; also a Retired Marine and Volunteer Fire Chief. So much for King and country. Does tension work better than fusion? Does fusion fail [ 50%?] as high as I hear? Do I have any other options? Thanks!

    Chief Don
    Bad day for a Marine to have any work done on him. I, personally, would get a second opinion from some place like Baylor before fusing if there is a 50% failure rate. I just hear pain stories afterward. I hope Wise will step in here because I believe some surgeons are now treating some stenosis cases differently. If you have insurance primary to Tricare then Tricare should pick up any extras the primary doesn't for the second opinion. Getting a statement of non-availability also should not be a problem right now.

    Go Army!
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  9. #19
    Quote Originally Posted by ev50
    Hi Zoey,
    Thankyou for your info, and I would be interested to know how you go with your neurologist, and how you cope with your condition. I found a lady in Queensland, with a Thoaracic Syrinx, who was running an information session on SM for disability week. Please keep in touch, I am still learning the computer and it takes a while for me to work this posting business out.
    All the best
    Evelyn.
    Hi EV,
    Am new to this but was just reading your statements. I have chari 1 syringomyelia, first diagnosed late 2001, after complaining to doctors for about 10 years. I had 8 operations(due to complications involving meningoceles) and now am aparrently stabilised (surgically that is), although symptoms seems to be worsening, which I don't understand. However, the point I am getting at is that after going through 6 operations before one neurosurgeon admitted defeat, I was referred to another Neurosurgeon who was in the process of moving to Brisbane. She stabilised my condition from a surgical point of view (so far), so if the day somes when if you do need surgery her name is Doctor Marianne Vonau, and she is at the Royal Womens Hospital in Bris.
    As for me, am in England, and am trying to PE teach however, it seems my body has other ideas.Am due to see a neurologist next week in the public system over here, but am not holding my breath.
    Hope things go well
    Angela

  10. #20

    Question wise young ''transverse myelitis''

    Hi i am a 29 year old female i came across this web site and wanted to see if u can help me make some sence out of this whole thing,feb,13,2007 i had gotton rear ended in a car accident went to the ER got cat scans-x-rays every thing came back great. ok so i got home and was sore which is normal for being in a car reck, 2weeks later i was at work i work as a cashier so it is no hard work and i got the worst pain in my legs,back ,toes , so i went home and had my husband put pressure while i was laying on my stomach ,i finally fell alsleep and when i woke up the next morning i was completly numb from my waste to my toes tingleing-needleing feeling very scary so i made a doc appt.and he insisted go get a MRI and i did for the lower spine it came back and nothing! ok so i insisted for me to go and see a neurologist he said ok went there yesterday which was the 16th of march and he took it very seriously told me to go to the ER ASAP!! and get a MRI of the C and T spine with/without contract and admit my self saying he thinks it is transverse myelitis ok i am really worried i might die what is it and could the car accident made this happen for me? or is it a desease that i was born with? i have no clue i need all the input i can get.
    HELP!!!!!!
    thank you...brandy

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