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Thread: Open discussion on PAIN, VENTING.

  1. #1
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75

    Open discussion on PAIN, VENTING.

    Hi Everyone,

    It seems that PAIN and Scoliosis goes hand in hand, after viewing and discussing pain on many different forums. I thought that maybe we could open a new forum on PAIN, how people deal with it, and how people don't deal with it. It can be very open and frank, just a venting system, discuss your frustration and fears, discuss your future or what you feel might be lack of.
    I know that as an individual with a disability (Scoliosis) I have many fears and many concerns or issues with pain. Just knowing that this forum is available and that I'm not alone is such a great feeling and we are people first
    Of course everything that is discuss in this forum is confidential and personal, their is NO right or wrong question or answer, no stupid question or feelings, just be yourself.
    Let's just vent our concerns and frustrations, and be ourself.
    Anyone?
    Live long and prosper!

  2. #2
    Join Date
    Jun 2004
    Location
    Long Island, NY
    Posts
    7
    Yeah I'll give you some fears... Since I started researching stuff about my scoliosis and I saw some of the pictures, you know the old Milwaukie Brace, (ughh), and the body cast, OMG, the pictures alone scared the hell out of me.
    When I had my surgery back in 71 I was 14. My parents made all the plans, and trust me I know they did what was best I know having the surgery was the best thing to do. But at that time it was so tramatic. I was in the hospital for 8 months then I had surgery. Then put in a body cast sent home bed ridden for 4-5 months, no bath, no shower, no walking, no ever ever getting out of bed, (if it had not been for my sister I would have gone mad). Then back to the hospital to get the 300+stiches out. I could not wait for that day, I kept thinking to myself, finaly I'll get to get up and take a shower. Yeah right. Little did I know that I could not WALK! I remember the doctors saying to my parents before surgery, if she does not have this surgery she will be in a wheel chair, with a hump. So imagin my shock when I found out I could not walk after surgery?
    But that was temporary, I was taught how to walk again, and life seemed so much better.
    Of course I was a teenager, and I wanted to get out there and live, but my parent reminded me constantly that I had had major back surgery so I should be careful with what I choose to do.
    But life seemed fine. Until 10years ago. I started getting lower back pain, that would come and go. I learned how to deal. People would say to me,well your getting old now, (like I wanted to hear that). I thought yeah there right. But in the back of my mind I would remember the surgery and worrry myself sick that something is wrong with my back again. Then the pain got worse, and worse, it would not come and go, it would come and stay for days on end. I should have bought stock in Tylenol, I lived on them. I worked for many years as a retail manager, and a waitress, so working was unbearable. I finally quit my jobs, and looked for a job I could do sitting down thinking that would help. I found a desk job, that I wound up quitting also, cause sitting too long is also very painful.
    So what do you do? I cant work, sitting nor standing, the pain, has progressivaly gotten worse. I think I deal with the pain pretty good, but my biggest fear is more surgery. I dont think I could go threw with it again. Then again I dont know. My finaical situation is bad, heck very bad. I am fighting with SSI for the past 4 years now, and the fight just adds to the pain. There doctors say my pain is in my head, what? I told one doctor to walk in my shoes then tell me where the pain is. It's just such a battle, like daily life is a battle...
    Well thats my story....

  3. #3
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73

    Pain

    Hi,
    I hear you both. I am 32 and had surgery at 16. I was lucky to have modern technology that helped me recover quickly. But if I had the guidance of my parents more back then I would have done better by staying in school. I worked hard and long and put up a good fight to stay afloat until 2000, and it went down hill from there. Can't say why the turn around happened, but it all just literally came undone. The whole Harrington rod, Luque procedure just came loose. Bone grafts and all. Painful.

    But after x-rays were done the doctors all said I cant be in alot of pain due to no broken bones.

    Now 4 years later on S.S.D. and taking to many ibuprofen type pain releivers. I am now on stronger meds. like Vicoprofen. And the doctors say, I have no broken bones so I should not be in pain,that is the stupidist thing I have ever heard. I broke my
    hand 2 times and had little to no pain. Go figure.

    Anyway, one thing I want to make perfectly clear is we all have nerves that connect to these distorted out of place spines we all have and each of those are attached to something. When our spines are compromised like this it send negative signals to those nerves. That is when we get these unknown pains and unknown causes. So don't let them tell you to take anti-depressants because it is in your head. It is BULL. i took them and all it did was make me sleepy and lifeless. Unless you are really saddened, rethink this technique. Always second guess. We have this problem but it could be far worst.

    Take care of yourselves during the Holidays. Krystal.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  4. #4
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Not surprise, glade of the responses and yet angry at our fights, boy do I remember the ugly Milwaukie braces, I wore a couple of them after wearing a plaster cast for almost a year. I too can remember my parents, mostly my Grandmother always telling me not to do this or to do that. I always had to fight for my rights, including getting an act of congress to allow me to enter the United States Navy at (1972) twenty-two years of age. All of my friends were being drafted into the Army and I wanted to do my part, and I thought that IF I had a honorable discharge from Military Services that I could get a good job. Boy was I wrong, I lost so many positions because of my back or scoliosis it is not funny. I worked as a Maintenance person for a Public School for almost 17 years before I had a serious incident with my back and I thought that my employer would give me reasonable accomodations under the ADA, JOKE.
    Got my first work restrictions in 1990, caused me to lose this job and go back to school so that I could get a sedentary position. After six years of college, I finally worked for ten good years until just this year, I can not longer sit long enough to do the essential function of the position. Guess what, now I'am on SSDI and fully retired but I work at part-time projects for individuals with a cause. Oh well, keep venting...God Bless.
    Live long and prosper!

  5. #5
    Join Date
    Nov 2004
    Location
    fl
    Posts
    73

    Pain

    Hi,
    I am so suprised to hear about you working for all of those years and neither the military or the school could not provide better care for you. That is a shame. I feel for you. I was young and misguided thinking companies were good and wasted time with them instead of having my own gig. It took having children for me too see my goals would not be met in a company. I went on to cleaning for companies and got fed up and did it on my own. It was hard work but not as aggravating and hard as the other jobs I have done in the past. I miss working sooo much and cant wait to get back to it even part-time. I also wanted to add tothe question before about pain meds. I also take Somas for the muscles spasms and this is the only thing that helps. If I dont take them before the spasms start I am in trouble. This for me means weeks of sciatica. Stretching doesnt help anymore. I used to be able to catch it in time and would be able to stretch but it doesnt work now. Does Soma work for anybody else? Just curious if something better is out there now.
    Diagnosed 11 at school screening, surgery 16.
    Had Harrington rods w/fusions.
    Luque-thorasic.
    Full term pregnancies,no major issues.sciatica with the first. Epidurals with C-sections
    2005:lumbar reconstruction, 2 plates, 6 screws in sacrum, and 2 cages with my own bone.
    2007: cervical surgery to correct 4 bulging discs, two fusions with cages using cadaver bone.
    Both of my daughters have scoliosis. Both were diagnosed by 7.
    http://spinedoctors.md/ Dr, Jospeh Flynn Jr

  6. #6
    Join Date
    Dec 2004
    Location
    Fairfield, California
    Posts
    9

    Unhappy PAIN!!!

    I have read a lot of posts tonight. It's very tempting for me to complain about my pain. But, for some reason I can't. I just want to say to everyone else out there that is suffering, I admire you so much for being so strong. Especially when some of you have been suffering for YEARS!!! I am guessing that will be my fate too, but still I really admire that. I am so glad I can come to a place where people understand what I am going through.

    I try to be tough, but I am really new to this pain thing. I had surgery when I was 14 (I goofed earlier and put 12). The surgery was successful and until December everything was peachy. Then things changed.

    I honestly don't know what to do, doctors make me feel like I am a NUT CASE and they always emphasize how WONDERFUL my rods look... Whoopdeedo I have pretty rods, here's a honest to goodness picture of them if you want to see www.s-curve.org , wow pretty rods some how don't give me any comfort.

    I had a doctor who had me do an MRI................... Helllllooooooo, ya can't do an MRI with rods in your back, it doesn't come out! He also looked at my x-rays backwards and scheduled me for an appointment on a holiday.

    I had another doctor who wanted to pump me up with Steroids and Vicodin and Flexerall.. finally I said WOAH, enough with the drugs. I said no to the Steroids, too many bad experiences in my family with those. I took the Vicodin for a while, but started having stomach issues and the Flexerall didn't do anything.

    Then I went to the emergency room, because I was crying and rocking back and forth because of the pain.. only to be given 2 pills of Valium, a shot in my rump, and Benedryl because I was allergic to the shot in my rump.. The Valium made me hallucinate and the rump shot made me extremely itchy to the point where I ended up with pits on my nose.

    I was still in a drug induced state about 40 hours later when I then attempted to take my own life because the drugs they had me on screwed with my thought process. I just remember thinking, hmm what am I doing in a tub full of water with my clothes on? That's after I snapped out of it. Scared my poor parents and boyfriend to death, thinking I had completely lost it. I thought I had lost it too, however my mom realized that since I didn't remember anything until my memory was jogged that perhaps it had something to do with the drugs...

    Well anyways, so much for not complaining. I really do hope that some of what I said though, is a warning for some body out there who may end up in a similiar situation. Don't take any drugs unless you know the side effects. Don't go to a doctor who is not recommended and don't give up. I may be frusterated but I am not giving up. I am looking for more suggestions though. By the way, a special thanks to Linda Racine for her help. I really appreciate it.

    Thanks everyone for letting me vent.
    Crystal

  7. #7
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    It is great that this forum allows us all to communicate and vent with each other, because we have been there, or soon will be at certain different stages of life with scoliosis. It is an individual thing, but the pain, discomfort and each of our concerns over our future is something that we all can relate to. I have never fully been accepted in life because of my appearance and/or physical limitations, except for this forum and close family members or firends. I feel understanding, and appreciated, thank you. Knowing that I'm not alone, and that I'm not a freak, because for many years I did. I remember seeing a young lady at the beach one day many years ago with scoliosis, I wanted to speak with her so bad but she was gone before I could make contact. Fighting for my rights all these years, fighting for jobs, school, and recognition as an individual with a disability is scary and very difficult today. But if we can win one fight, then maybe our younger brothers or sisters with scoliosis will have a slight better oportunity for inclusion and acceptance in todays world?
    Live long and prosper!

  8. #8
    Join Date
    Dec 2004
    Location
    Fairfield, California
    Posts
    9

    Question Too much venting..

    I think I vented too much last night. I apologize if I scared anyone.


    Crystal[COLOR=royalblue]

  9. #9
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    Scurve83

    Never feel that you are alone or that you can not vent here, if anything you are safe and are understood here, so please vent here. We are all individuals with scoliosis issues or concerns that are individualized according to each person, such as independent living issues, environmental, or surgery and even the medication for pain.
    What may work for one, may not work for the others, disability or scoliosis is an individualized and private issue for each individual. One of things that really tick me off is the medical model, and the catagorizing of disabilities. No two surgery or no two disabilities are the same they may be similiar but the emotional, psychological and pain is a individual thing. People with disabilities understand and appreciate the importance of this, sometimes not at first. But the longer an individual has the disability, the stronger the ownership of the disabiity becomes creating an independence. Anyway, welcome and vent......
    Live long and prosper!

  10. #10
    Join Date
    Dec 2004
    Location
    Fairfield, California
    Posts
    9

    Thank You

    Danite,

    Thank you for your understanding. I appreciate the fact that you initiated this thread. Your insight on the medical model is very accurate and unfortunetly true. It's one thing to have the disability, it's a whole other thing to have to deal with the doctors and insurance companies in order to have the disability taken care of. So, again I thank you for bringing up this topic.

    Thanks,
    Crystal

  11. #11
    Join Date
    Jul 2005
    Location
    East Tennessee
    Posts
    1

    New here to this website

    I'm new here. I have known for some time, probably around age 21, that I had some curvature of the spine. I was never checked for it early in life. No one ever mentioned it to me. I have had back pain on and off, but nothing that I couldn't deal with. It's better with exercise. Lately for the last 3-4 years I became kind of lazy with my strength training and tried to start it up again. I hurt my patella because of poor muscle strength and I went to an orthopedist. He is sending me for strength training and stated that the knee can be fixed with this. But during this time, the inability to perform the normal exercises due to knee pain has caused me severe back pain. Also pain has been getting worse over the last 2-3 years. I have been to the ER with muscle spasms while trying to drive. No one x-rayed me. I was having severe back pain and told the orthopedist. He x-ray'd my back and said he was amazed at how no one ever knew about this and that surgery would have been recommended at age 13 or 14. I've had some bad experiences with medical doctors on some other health issues, so I am skeptical about going to the doctor. He said I had compensated very well meaning that I don't appear very crooked. But the x-ray was very scary to look at it. It disturbed me greatly, and I am in severe pain until I can get my appointment set up to start the physical therapy. I'm just in pain, aggravated and scared. That's my experience with scoliosis.

  12. #12
    Join Date
    Apr 2005
    Posts
    92

    Know exactly how you feel...

    I' ve known I had scoliosis since I was a teenager. I just really kind ignored it during my 20's and 30s. Once in a while I would notice spasms or mild pain but nothing that would stop me from doing what I wanted. I did consult w/ a doctor when I first got married and asked him about having children. He said it would be best just to have one or possibly two.
    Well, now in my 40s it started taking over my life w/ a vengeance! I'm experiencing pain in places I hardly knew existed. I don't know what to expect from one day to the next. Just a few minutes ago I didn't know if I could bend down to get a pan underneath the stove. Another morning I felt numbness and tingling in all my limbs. It was almost impossible to brush my teeth- my arm was so weak.
    Anyway enough about myself...I hope that pt helps you. I know it does me. They do some wonderful things and help build strength.
    Keep us posted. This is a wonderful forum with a lot of encouraging, caring people. Also thanks so much Danite for starting this thread. It is so nice to know you're not alone.
    CSC
    Last edited by csc; 07-31-2005 at 10:37 AM.
    CSC
    Idiopathic Scoliosis; Wore a Milwaukee brace; Told by physician it would not progress
    S curve; Surgery date: January 29, 2008!!

  13. #13
    Join Date
    Jan 2006
    Location
    new york
    Posts
    212

    insurance hassles

    I'm just upset that I was assured that my insurance would cover every aspect of my surgery and if it didn't the hospital and surgeons would just take the amount offered. Now I'm finding out that this is not the case. As I slowly try to return to work and recover I stress out over my medical bills that I can't pay!
    Any advice or suggestions would be greatly appreciated.
    Jenn
    37 y/o female
    60 degree lumbar
    45 degree thoracic
    1st time anterior/posterior surgery May 8th and 10th 2006
    T 5 to S 1
    NYC

  14. #14
    Join Date
    Oct 2005
    Posts
    10

    Disability Living Allowance Application

    I am at the moment in the middle of an appeal to try and get more disability living allowance. AT the moment I receive higher rate mobility and lower rate care. I am trying to get more of the care component, and am now waiting for a tribunal date.

    Last week I went in for a sleep study and now have to use a nippy ventilator as my oxygen level drops at night, I thought this would make a difference to my claim, however when I contacted the man acting for me he said that this new fact doesn't make any difference to the current claim which I feel is very unfair.



    What do you suggest I do, what are the rules should circumstances change?





    Many thanks

  15. #15
    Join Date
    May 2008
    Posts
    2

    Help!!!!

    Does anyone have problems with coming off the pain meds following surgery? They have me on Oxycontin20 mr 3x's day and Norco 1-2 tabs 3x's a day. I am 7 months post op! Just started to get off meds and it's terrible.



    Quote Originally Posted by Scurve83
    I have read a lot of posts tonight. It's very tempting for
    me to complain about my pain. But, for some reason I can't. I just want to say to everyone else out there that is suffering, I admire you so much for being so strong. Especially when some of you have been suffering for YEARS!!! I am guessing that will be my fate too, but still I really admire that. I am so glad I can come to a place where people understand what I am going through.

    I try to be tough, but I am really new to this pain thing. I had surgery when I was 14 (I goofed earlier and put 12). The surgery was successful and until December everything was peachy. Then things changed.

    I honestly don't know what to do, doctors make me feel like I am a NUT CASE and they always emphasize how WONDERFUL my rods look... Whoopdeedo I have pretty rods, here's a honest to goodness picture of them if you want to see www.s-curve.org , wow pretty rods some how don't give me any comfort.

    I had a doctor who had me do an MRI................... Helllllooooooo, ya can't do an MRI with rods in your back, it doesn't come out! He also looked at my x-rays backwards and scheduled me for an appointment on a holiday.

    I had another doctor who wanted to pump me up with Steroids and Vicodin and Flexerall.. finally I said WOAH, enough with the drugs. I said no to the Steroids, too many bad experiences in my family with those. I took the Vicodin for a while, but started having stomach issues and the Flexerall didn't do anything.

    Then I went to the emergency room, because I was crying and rocking back and forth because of the pain.. only to be given 2 pills of Valium, a shot in my rump, and Benedryl because I was allergic to the shot in my rump.. The Valium made me hallucinate and the rump shot made me extremely itchy to the point where I ended up with pits on my nose.

    I was still in a drug induced state about 40 hours later when I then attempted to take my own life because the drugs they had me on screwed with my thought process. I just remember thinking, hmm what am I doing in a tub full of water with my clothes on? That's after I snapped out of it. Scared my poor parents and boyfriend to death, thinking I had completely lost it. I thought I had lost it too, however my mom realized that since I didn't remember anything until my memory was jogged that perhaps it had something to do with the drugs...

    Well anyways, so much for not complaining. I really do hope that some of what I said though, is a warning for some body out there who may end up in a similiar situation. Don't take any drugs unless you know the side effects. Don't go to a doctor who is not recommended and don't give up. I may be frusterated but I am not giving up. I am looking for more suggestions though. By the way, a special thanks to Linda Racine for her help. I really appreciate it.

    Thanks everyone for letting me vent.
    Crystal

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