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Thread: Anyone still here from the "old" days?

  1. #31

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    I first found this board in 1997, following a stroke that led to Central Pain Syndrome. It was wonderful to find that other people have learned to cope with constant horrible pain. I've followed the board ever since then (When it's been available; I've had to re-register several times. I don't post much, but I'm hoping that somehow the board will resurrect itself. Recently, it seems to be trying to be active again, so I thought I'd post.

    Anyone here remember KD? She passed several years ago, but I remember her as one of the central figures of the board then....

  2. #32
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    Default I'm still here.

    Quote Originally Posted by MountainMan View Post
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    I first found this board in 1997, following a stroke that led to Central Pain Syndrome. It was wonderful to find that other people have learned to cope with constant horrible pain. I've followed the board ever since then (When it's been available; I've had to re-register several times. I don't post much, but I'm hoping that somehow the board will resurrect itself. Recently, it seems to be trying to be active again, so I thought I'd post.

    Anyone here remember KD? She passed several years ago, but I remember her as one of the central figures of the board then....
    I joined in the late 90s but read more than posted. I just re-registered. Since 1997 I've had had 2 lower back foraminectomies and fusion (L3 thru S1) and in August 2011 I had ACDF C3/4 and 4/5. In December I tripped over a long dress I was wearing while singing with a symphonic chorus, fell backwards and lost C5/6 and 6/7 - another surgery in May 2012. I am having serious, serious pain in my lower back, no one seems to know what it is. Back for MRI last week and to neurosurgeon on Tuesday. I am about ready to give up. Nothing helps any more. The pain isn't responding to OxyContin, muscle relaxers, steroids or anything else. Pain seems to cover my entire buttocks area from waist to hip joints. I hope someone will have an idea what this could be. I'm about done in, AND am a caregiver to a disabled husband who is waiting to hear from Cleveland Clinic about aortic valve surgery. This place used to give me hope. I hope it can again.
    Lee

  3. #33
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    Mountain Man and Lee welcome back as it is good to see old members getting involved once again. It seems our pain never goes away but we often get tired posting about it and need a break. Lee, have you tried one of the medications for neuropathic pain yet? I use Cymbalta to control that pain that pain meds and muscle relaxers couldn't touch. If you have tried Cymbalta, Lyrica, or one of the other nerve meds it would be worth a try.
    1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
    2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life

  4. #34
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    Lee - Be carefulful with the Cleveland Clinic. I took my S/O there (Ft. Lauderdale,Fl) where they did a Nerve test with something that looked like a TASER. s nerve conduction test. I am ashamed to admit that I did nothing (I have Durable power of attorney and Health surragate status for her.) when I heard her SCREAMING in pain - they were AWARE that she was a C/P Patient. i should have stepped in and told them to stop - I had the legal right. I had simaler test at the VA and while uncomfortable at times, it did not cause me to scream in pain. WE both have Periphial neuraopathy(sp). I consider that doctor a sadist - I would advise you to take a friend, parent or some kind of witness to your appointment. It is lucky that I a have some EMT training as well as CPR and Advavanced First aid as when I got got her back to the hotel She went into shock and I was a step away from calling 911 - I was able to treat her, the next morning was 9-11 - the twin towers and that only added to her distress. that was not the clinics fault but it did not help. Please,ask lots of questions - I wish you the best of luck. I would also google cleveland clinc - complaints - as in MHO - they did a lot of unnrccecary tests, made my S/O scream in pain that i took with just a bit of discomfort - they just want the money and the Doc was a sadist to keep on going when I heard her begging them to stop. As I said in the beggining, I am ashamed

  5. #35

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    First hi to all I have been a long time member of BT also though for the last couple of years I haven't been here much (sorry).

    Lee I'm not sure in what state you live in and which Cleveland Clinic you are referring to however I went to the one in Cleveland Ohio for years, in 1998 I had heart surgery there due to a problem I had since birth and had been to Drs in numerous states that could never even diagnosis me.

    Later I went there for a back injury I was fortunate to get a really good Dr that diagnoised me however he left snd I had nothing but problems with the other drs I saw there.

    Cleveland Clinic is famous though like everywhere there is the good with bad I wish you the best..

    I'm so sorry you are having a problem getting a Dx this is so common with back injuries it took me years to get answers and some are still noy just don't give up and be active in your health care this is so very important..

    Best to you,
    Linda

    (sorry my spell ck isn't working so forgive any errors)

  6. #36

    Default Hi Linda

    Gee, for so long you were all pain and no diagnosis. So discouraging. I am glad you have gotten some relief. Are you still with the in-laws? It's hard to believe so much time has gone by.

  7. #37
    Distinguished Community Member Jo6's Avatar
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    Yes, it is good to see names I haven't seen in a long time. The board was down more than up for awhile there. I'm happy to say we have very caring people now that does much stuff to keep Brain Talk growing.

    I'm looking forward to seeing BT get better and more old as well as new members will join.

    I pray none of our members have been in the worst of the recent storm, Sandy. Take care all and you all will be in my thoughts and prayers.

    Julia
    Did you ever know that you're my hero and every thing I would like to be I can fly higher than an eagle
    'cause you are the wind beneath my wings

    for my brother Ben

  8. #38
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    Hi, not sure if anybody will remember me as it's been several years since I last posted!

    I just came by to take a look around and see if I could get into the forums... happy to see my login still works, yay! It's nice to see some familiar faces. I checked and my last post here was in 2008. I was in the midst of pain hell then, and the worst of it was yet to come! I went through a knee replacement and had both hips replaced last year, after going through almost three years of the worst pain I have ever had from my hips. I got to the point I couldn't walk without a walker, couldn't do much of anything. Suffice it to say, it was bad. It took a long time to find a surgeon who would take on my high-risk case, but thank God I finally found one! He's my hero. I'm still regaining strength in my legs but I'm so much better than I was and walking on my own two feet again!

    I'll always have the fibro, the myofascial pain syndrome, the failed back stuff and nerve damage pain to deal with; those are forever for me. But I have an amazing pain doc and he manages to keep me around a level 6-7 most of the time. I'm good with that.

    Went through a bit of a dark spell for a few years first waiting for, then going through both hip replacements. Pain I hate to even talk about, but I finally just did. I just finished writing an article about surviving unbearable pain a couple days ago. Maybe you might find it helpful. Come to think, I probably should put up a separate post about it because I think it could help a lot of you guys in the same boat as me.

    I've had to retire from my active role in Miniature Schnauzer rescue, I still have three rescue kids here who will live out their lives with me. I've changed the focus of my work to trying to help match people with dogs in need. I'm still crochet designing and crafting, enjoyed a little gardening this summer, not a bad year so far. My kids were little when I first joined here, they are now all grown up and doing well.

    Hugs to every one of you, wishing you an "as good as it gets" day at least! Best regards, -Sheila
    Last edited by Moderator #7; 11-13-2012 at 08:48 AM. Reason: Your link to your article didn't work. Please check and repost it :). Welcome back!

  9. #39
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    alex44, thank you for the information. My husband is being referred to the Cleveland, Ohio clinic. However it has been 2 months and we haven't heard whether they will take him or not. He is too sick and too obese for open heart surgery. I grew up with 2 invalid parents and now have a husband with CHF, pulmonary hypertension, remission of kidney disease and now, diabetes. I am a strong advocate with his POA and DNR and do not hesitate to get in the face of any medical person if I feel it necessary. I will have his sister with me. He had a nerve conduction test by our neurologist and with his peripheral neuropathy it was bad - but the doctor realized it and stopped the test. We are going for an aortic stenosis repair. I appreciate your input.

  10. #40
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    Thank you Linda. This week I am having a myelogram (ugh) to see if they can further pin down my diagnosis. Apparently the hardware placed in 1997 and 2001 throw so much artifact the MRI can't clearly show the status of L1 and 2. My scoliosis is at 30 degrees and causing me tremendous pain. About anything like buying groceries and putting them away keeps me in bed the next day. We do know that 2 of the screws at L4/5 and broken about 3/4 inch from the surface and have a lot of scar tissue. Now I am having a lot of weakness in my legs along with the pain. We live in Georgia and my husband is referred to the Cleveland, OH clinic for aortic stenosis repair. Stil haven't heard whether they will accept him or not. My surgery will be done locally by the neurosurgeon who performed the two ACDFs.

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