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Thread: Hi, I'm new and I need help.

  1. #1
    Join Date
    Aug 2004
    Location
    California
    Posts
    15

    Smile Hi, I'm new and I need help.

    I had my original surgery in 1989, with CD instrumentation. In 1997, I had all instrumentation removed....due to pain. I am now 27, and my pain continues to increase and increase. I have 5 bad discs, a few above and a few below the fusion, have facet joint syndrome, as well as various soft tissue damage. I have pain going down my right arm and my right leg, and pain of course in my neck and back. My ortho doesn't want me undergoing any more surgery right now on the discs, because they'd have to replace all 5/6 of them, and I'd still be in pain because of the other stuff.
    I am currently not on any meds right now because I am trying to get pregnant, and of course am fearful of engangering my child with the medications in utero. However, the pain is just awful, and my mobility is terribly limited. I really want a child. I've tried chiro, PT, acupuncture. My questions are 1) can anyone tell me about their experience being pregnant with all of our complications, and 2) does anyone have any other advice on how to deal with the pain without meds?

    Thank you so much for helping out!
    Last edited by melsnapp; 09-08-2004 at 07:31 PM.

  2. #2
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Boy do I hear you loud and clear, I received the first experimental fusion in the State of Michigan in 1954. My spine was 80% fused with no hardware of any kind, at my age of 54 I am no longer able to work full time or sit or stand for any length of time. Without adjustment or a combination of the above. I have also started with Vicodin that sometimes limit the leg stimulation or leg jerks.
    I wish I could tell you how to manage your pain, but over the years I have adjusted to the pain myself. Now I have just recently applied for SSDI and presently on medical leave from my sedantary position.
    Of course the specialist and surgeons are eager for surgery and hardware but I have had enough of the medical model. Besides at my age and physical abilities right now, I will handle it in my own way.
    I sleep only six hours per night if I'm lucky, and again just keep changing positions all the time. It is very frustrating, but I did have a daughter with a deformed back, called Klipel Fiel sysndrom (sp). I sometimes wonder if I was the caused of it, but I love her so much and she has given me so much in return. She is now twenty-two years old and working. She does have a rod in her back and has a very noticable curve. But my other daughter was born without any birth defect, I'am not resentful nor do I wish she was not born. In fact, because of her, I must continue to fight and be strong, I will not have further surgery and I will not give up. God Bless
    Bill
    Live long and prosper!

  3. #3
    Join Date
    Aug 2004
    Location
    California
    Posts
    15
    Thanks for your reply, Bill. I'm in the process of applying for SSDI, as well. I am so nervous about getting it....I hear that they often reject people. I can't hold a job....it's just too hard. I keep telling my husband, "if I could just find a job where I don't have to sit, stand, walk, or use my arms very much, that would be perfect! =) But really, there is no such thing. I'm sorry to hear about your daughter. I hadn't even thought about the genetics of it...I was just worried about birth defects because of medication while I'm pregnant.
    Wow. Well, good luck with your situation!

    Anyone else out there who has been through pregnancy with a back like ours? Most of my doctors have scoffed at me and think I'm crazy for even trying.

  4. #4
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Never say never and keep fighting for your rights, I know applying for SSDI is scary. It seems that many individuals do get it that shouldn't and the ones that need it the most, of well.
    Please keep in touch and let me know when you hear about SSDI, it would be interesting to find out how many individuals with our type of disability do get it.
    Like I said, I did go back to school and got a degree for a sedentary position but the sit, stand and of course walking is history now.
    It does take longer for SSDI and it depends on your state program, in Michigan it is usually between 4-6 months. I hope it does not take that long for you or me. I was working and now receiving Short Term Disability Benefits that I'm fighting the insurance company for, they seem too think that I'm not disabled. What a joke, wish I wasn't but I can not let that get me down and I won't give in. Besides the medication, MRI, and surgery it obvious something isn't normal. Besides my curvature sticks out like a sore thumb, I will keep you in my thoughts and look forward of hearing more about your fight.
    Live long and prosper!

  5. #5
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255

    dealing with pain

    Hi there,

    I'm so sorry to hear about all your pain.

    I've had one year of almost constant pain due to disc injury, and one thing that helped me (with and without drugs) was learning meditation. I went to a class run by my health system, which did a gentle kind of meditation that involved lying down and doing "body scans" and also sitting and walking. There were always specific directions for people dealing with pain, and although it was hard at first, it really helped me relax and almost get some distance from the pain.

    I know it sounds like a long shot, but it really helped me out, and I know there were others in the class dealing with pain who thought so too. You might try and find out if there are any classes in your area. Otherwise, if you email me at lrmb24@hotmail.com, I will try and send you copies of my tapes to listen to while you try meditating.

    Good luck, and keep us updated on your progress.
    Laura

  6. #6
    Join Date
    Aug 2004
    Location
    California
    Posts
    15
    Bill,
    I will definitely keep you posted about the SSDI progress, and I hope that you'll do the same. We just have to keep our fingers crossed and hope for the best, right?

    Laura,
    Thanks for writing, and for your support! I haven't tried meditation, although I do pray a lot, which is a little similar, right? I've also done a lot of stress management and breathing exercises. I'd be interested to hear more about the meditation. I just got a new dr appointment for next Tuesday to try to get a referral to a pain clinic. I don't know why I've been so stubborn about going there so far, however I think I'm finally humble enough and in enough pain that I'll go and see what they have to offer. Maybe they'll have a meditation class there! I'll keep you posted! I'm just kinda at my wits end.
    Thanks, again!

  7. #7
    Join Date
    Jul 2004
    Location
    Dallas, TX, USA
    Posts
    114

    pregnancy and scoliosis...

    you are so young to be in so much pain all the time! it doesn't sound like my back problems are nearly as severe as yours, but i do want to let you know that i managed to have a healthy pregnancy and delivery despite a severe and progressing lumbar curve plus continual back, leg, and arm pain. walking was difficult starting at 12 wks; lying down kind of paralyzed my legs and made my hands go to sleep! i managed the pain with weekly chiropractic; i was in good shape before i was pregnant; i don't suffer respiratory problems from my scoliosis; and i didn't gain too much weight while i was expecting; i think all that helped. my pregnancy definitely increased my pain long term; i haven't had a "break" in 9 years! what does your dr. say?
    Sue


    Milwaukee Brace from ages 8 - 16
    T36 degrees/L56 degrees Pre-Op
    Fused T3 - S1
    Surgery done Sept. 15, 2004
    Dr. Robert G. Viere
    North Texas Spine Care @ Baylor

  8. #8
    Join Date
    Aug 2004
    Location
    California
    Posts
    15
    Hi, Sue! Thanks for your reply. Yes, it's hard to be in so much pain all the time, but I'm sure you understand! As fas as pregnancy, my PT and my physical medicine doc thing I'm nuts. They think I should wait a while. However, my primary care physician is awesome, and totally supportive. He knows that it will be hard, but he totally wants to help me every step of the way. I guess the way I figure it....I've gone downhill so much the past 2 years that it's probably only going to get worse. So I think I'm better off doing it now while I am at my "best". Plus, it feels right, do you know what I mean? =) Thank you so much for your input, as far as how your pregnancy went. I'll keep you posted if/when I do begin that road!

    Wow, I noticed on your signature that you are preparing to have surgery! Good luck! Are you having instrumentation placed?

    Melissa

  9. #9
    Join Date
    Jul 2004
    Location
    Dallas, TX, USA
    Posts
    114
    hi, melissa! yes, in just a month (wow!) i'm having a fusion from t1 or t3 through s1 and they'll put in whatever instrumentation is required. our family life revolves around my back pain and i need to try to fix that. good luck with your family plans...at least your doctors have opinions on the subject. no one i consulted on the subject 15 years ago would give a yea or nay; they all just shrugged their shoulders! i think much more is known about adult scoliosis these days; i remember being told 20 years ago that despite the pronounced "s" curve in my spine i couldn't possibly still have scoliosis because it's a pediatric condition!
    Sue


    Milwaukee Brace from ages 8 - 16
    T36 degrees/L56 degrees Pre-Op
    Fused T3 - S1
    Surgery done Sept. 15, 2004
    Dr. Robert G. Viere
    North Texas Spine Care @ Baylor

  10. #10
    Join Date
    Aug 2004
    Location
    California
    Posts
    15
    Wow....surgery next month! Is this your first? Hopefully it will improve your state of living...that's really exciting! They've come MILES since they did my original surgery in 1989, so I'm sure they've got some great new instrumentation/procedures! Please keep us posted, I'm anxious to hear how things go. That's stinky about your docs just shrugging their shoulders. I had a similar experience, for about 10 years after my original surgery the docs told me that it was "phantom pain" and that they couldn't find any problem. Then I finally found a good doc, who found about 8 differetn things going on that were causing me pain. Duh!!! =)

  11. #11
    Join Date
    Sep 2004
    Location
    north Georgia
    Posts
    20

    SSDI

    I'm new to this site and wanted to share my experience with SSDI. I had my surgeries to correct scoliosis back in 1984 via Harrington Rod and Dwyer Instrumentation. I've had pain every day since then. However, I was able to manage it up until about 2 1/2 years ago. Due to the pain and Depression, I ended up having to quit my job (Bill, I'm an LPC too). I applied for SSDI back in Sept. of 2002. Here in Georgia, it takes a lawyer and a lot of patience. I just got approved! Yeah, haven't seen the $$ yet, should be this week sometime. I just wanted to give ya'll encouragement to hang in there and keep trying even if they deny you a few times. Bless us all.

  12. #12
    Join Date
    Aug 2004
    Location
    California
    Posts
    15
    Wow, thanks for your post! That's amazing that you have to get a lawyer to even attempt to get SSDI. This weekend I have two SSDI physical examinations to go to. Any advice? I'm so nervous.....I guess it's frustrating because it's totally out of my power. But.....I just need to have faith, right? Congratulations on yours finally going through...that's just awesome! Please keep me posted!

    Melissa
    Last edited by melsnapp; 09-08-2004 at 07:33 PM.

  13. #13
    Join Date
    Sep 2004
    Location
    north Georgia
    Posts
    20

    SSDI

    Hi Melissa, thanx for responding. Let me correct something I may have implied. Here in GA, ya don't Have to get a lawyer to apply, it was just Highly recommended. It sux that cha have to give 'em 25% of your back-pay, but I think I would've gotten too discouraged and given up if I didn't have the lawyer explaining things to me. The whole process for me was very discouraging; the things they write back and say to you, telling you that you can still work, that you're not That disabled. Like they have a clue, ya know. Anyway, it was worth the wait. Hoping to get my check today.
    Also, it may seem odd, but I didn't have to have a physical examination. The lawyer told me they may request it, if the documentation wasn't enough, but they never requested one. I wanted to have one, so they could look at my beautiful x-rays!...they are so descriptive in and of themselves. However, I did have to have a Psychiatric Evaluation, I guess because my Depression has been very disabling as well. I have a long history of clinical depression, been hospitalized, been on every medication known to mankind! It has been so much better since I quit my job. Between the stressful job and my constant back pain, I just couldn't function well.
    My SSDI approval letter implied that it was what my psychiatrist wrote that made the final decision. Makes no sense to me. It's all about what the doctors write, cause they didn't even see my x-rays. I mean, my back is the reason I can't sit or stand long enough to keep a job. Actually, I guess it's hard to seperate the two problems (Depression vs. Back), they're both intertwined.
    Anyway, didn't mean to get so long-winded.
    I'm not a big talker, but turn me loose on a letter, and there's no stopping me!
    Hope your evaluations go well. Hang in there.
    Keep me posted,
    Camille

  14. #14
    Join Date
    Sep 2004
    Location
    north Georgia
    Posts
    20
    Hi Melissa, one thing I wanted to suggest, (that was suggested to me, as well). I don't know if you're like me, but I have the strong tendency to minimize my pain. If you have that tendency too, let me remind you that it serves no purpose where SSDI is concerned. Minimizing helps me deal with my pain, but SSDI needs to know just how bad it is and how bad it is on your worst days, with NO minimizing. I'm not sure why, but it's really hard for me to be really honest about the extent of the pain, especially talking to someone face to face.
    I grew up in the "no pain, no gain, be tough" kind of family, so it's really hard for me to surrender to the reality of the pain. It has served as a coping mechanism, but it has also kept me in denial to the extent that I have sabotaged my well-being for way too long.
    I hope this makes some kinda sense.
    Camille

  15. #15
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Hi Carmille,
    In 1990 I lost my original job of over seventeen years because of my congenital disability (Scoliosis, Fusion 1954) no long could do the essential function of the job. After graduating from College I returned to a sedentary position for ten years and worked full time until this year. My fusion is so old and I have no metal or support rod of any kind, it is now just a ugly collection of scares, arthritic joints, spinal stenosis and other wonderful deseases of the spine that I can no longer sit or stand for any length of time. So I have applied for SSDI and expect a fight again, because I did apply back in 1992 but of course I did not have a MRI and my work restrictions did not limit standing or walking...etc. Like it does now. I would like to know more about your LPC.
    Live long and prosper!

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