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    Old 06-14-2003, 05:51 PM   #1
    Renee016
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    Unhappy Hurts so bad I could cry

    Hi everyone - feeling sorry for myself today I have a long history of back problems but I have never felt so debilitated by it before.

    I had surgery for scoliosis when I was 15 but was basically fine all through my 20's. In my early thirties I started having neck problems and just had a cervical discectomy in February of this year. Prior to that surgery I had some mild leg symptoms that I was hoping would be relieved after the discetomy. At the time, I only had a simple x-ray to rule out any lumbar problems and when that appeared to be fine the doctors figured it was my neck. None of the doctors I saw wanted to MRI my back because of the scoliosis hardware, which is stainless steel.

    Now here I am three months after cervical fusion and my symptoms are bordering on severe pain. Especially since I've returned to work. I have a desk job, so the sitting doesn't help. When I get up to walk, I get shooting pain in my buttocks and down my right leg. I have constant pain in my right heel that is the most annoying, I think. And the pain in my lower back is just getting worse and worse - on some days, I can't even bend down to take a dish out of the dishwasher. The latest symptom I have is a warm rushing burning-like sensation down my leg, which is not uncomfortable but very strange. I also have weakness, which started in November.

    Back a few months ago, I was so anxious to find the cause so I could feel better - I figured it was my neck because I clearly had a ruptured disc that was pressing on my spinal cord. I had been having neck pain for several years but never had more than mild pain in my lower back on very rare occasion.

    I feel so stupid that I did not seek out more testing on my lower back - I could have had a CT-scan or a myelogram. Now I'm told that I can go for an MRI, although the picture might not come out too clear.

    I'm just tired of the constant pain - anyone get any relief from any kind of medications?

    Thanks for "listening"
    Renee

    ------------------
    1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
    1999 Neck problems began
    2001 Cervical Kyphosis
    2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
    2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
    2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
    __________________
    1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
    1999 Neck problems began
    2001 Cervical Kyphosis
    2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
    2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
    2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
    Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
    7/03 EEG, BAERS and MRI of brain all normal
    7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

     
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    Old 06-14-2003, 07:53 PM   #2
    Jack Beanstalk
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    Howdy Renee,I guess I,m a bit puzzled why you are not already on Meds.With all you,ve endured for the past several years,one would think you would already be medicated.What kind of Dr. are you seeing?Have you told him/her about your pain levels?Are you having trouble at night sleeping?I,d like to know the answers to these questions,cause it sounds like you need to be in a pain clinic.Jack Beanstalk

     
    Old 06-15-2003, 02:51 AM   #3
    jdlfmc
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    Renee106,Hi I hope today is a better day for you I have had chronic lower back and leg pain for 4 yrs. now and can so relate to you if you read any of these boards you will see I have been crying like a baby for days now so I could jump in the pity boat with you but instead let's see if we can climb out of there togather there is enough caring people out there to through us a life preserver OKAY!!!I agree w/Jack B. you should have been in pain management long before now and not knowing what kind of DRS you are seeing it is kind of hard to say if you are just seeing your GP well really whoever it is time to ask for a pain management Dr. or clinic you usually need a referral ask your Dr. for one and also go the search on the web looking for PM Drs or cliics in your area it doesn't hurt to try and keeps your mind busy and off the pain for a while.Good Luck and hang in there I know it's hard but you have come to the right place for help.I know I'm hanging in it just seems some days it's by the toaenails as you can see your not alone ,I've been sitting hear this morn. reading the boards and ALMOST had to laugh,if a pain free person read these symptons I guess we people w/chronic pain would seem crazy it sure just isn'f funny when your the one suffering 24/7 I think the goal of the day should be to sit back and read these messages from a pain free persons point of view and laugh until we pee or pants and in our conditions that's not hard to do!!!Sorry got carried away I'm trying to work an some issues and trying to understand my family and co-workers point of view I have got to get my sense of humor back and lighten up so look out I"M COMMING BACK!!(HA!HA!)Avyway a good day to each and every one of you and may today and everyday after be better then the day before.Good luck.
    Linda

     
    Old 06-15-2003, 03:34 PM   #4
    JanieD
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    Hey, nobody understands chronic pain better than us, Cry, I cry every day, usually in the shower, where I can really let it out, and ya know it helps to release, also definetly get some meds, they probably won't take away the pain, but may take the edge off. Hope your feeling better soon Jane

     
    Old 06-15-2003, 05:33 PM   #5
    Renee016
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    Thanks everyone for your understanding and support. Sometimes it seems the people closest to you have no clue - spouse, kids, parents, in-laws. They just think, oh, her back hurts. . . what do you mean you need help loading the dishwasher, you never did before! Gee, mom, why won't you play jump-rope with me? It's very frustrating.

    I'm feeling a tiny bit better today, at least I'm able to sit in a chair! (not really funny) Last night I was just feeling sorry for myself - it happens. I don't let myself stay there, though, because I believe it makes the pain worse.

    I never heard of a pain-management doctor before but I will definately ask my nuerosurgeon about it when I see him again. I don't have an orthopedist right now -I dumped my last two because in my opinion they were incompenent when it came to my history (scoliosis). The first one told me I was too young to have disc problems when I first saw him about my neck and then in the same visit when I questioned him about getting arthritis at an earlier age because of the scoliosis, he said, well you're 35 - everyone your age has some kind of arthritis!!! The other ortho sent me to a nuerologist whom he was supposed to call with his observations and never did. I sat in the nuero's office while he dialed the ortho and left a message but the guy still didn't call him back. I got the impression that he was afraid to make a diagnosis and was waiting on the nuerologist.

    The only meds I have were prescribed a while ago and they're not very strong. All I have left is Carisoprodol, 350mg. I take one before bed just to sleep.

    I'm going to call my doctor tomorrow because I have another question, but I will also ask about pain-management.

    Thanks for the advice.
    Wishing you all pain-free days.
    Renee
    __________________
    1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
    1999 Neck problems began
    2001 Cervical Kyphosis
    2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
    2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
    2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
    Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
    7/03 EEG, BAERS and MRI of brain all normal
    7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

     
    Old 06-16-2003, 02:45 AM   #6
    jdlfmc
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    Renee,I hope you are better today and you get the anwers you are looking for from your Dr. but if for some reason you don't do a search on the internet by looking up pain management and don't stop until you find help,some timeifyou get hold of one of the larger pain management clinics and expalin your situation you can get in.I had never heard of pain management Drs til I hurt my back I know we start out feeling really stupid we can't be expected to know these things when we have never had any reason to before,the important thing is to arm yourself w/all the info you can because a lot of Drs and people will still just think we know all the answers and if we don't know the right questions to ask we can sometimes get lost in the shuffle.I know I have been lost in the shuffle and system for 4 very long years and today Iwill start fighting for myself and I have to say it was comming here and getting answers and finding out what questions to ask but MOSTLY it was rgaining some of my self-esteem back that i have lost,that came from all the supportive people I have been fortunate enough to find here in these boards I had the same problem with my heart I had non invasive surgery back in 1998 after years of seeking answers when finally the next to the last cardioligst took thousands of $ of my money as I had no ins. at the time and afer all the testing patted me(and I mean literally patted)on the head and told me women my age didn't have heart problems but if all I had to do with my time was sit around and think myself sick I would make myself feel sick, go get a pap smear and mammogram!! It took me years to build up anough confidence to seek help again and my husband forcing me to,I was diagnosed of the htest the QUACK took and had surgery and been fine since(at least my heart)it was also a problem I had had since birth!!I was 45 when he said women my age didn't have heart problems the #1 killer of women is heart problems.Any way I just want you to know you have the support here and if I can help please just jump in .God Bless
    Linda

     
    Old 06-16-2003, 06:38 AM   #7
    ChristinaD
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    Hi Rennee,
    I have also had a spinal fusion due to scoliosis when I was 17. I am now entering the problems of post fusion with this whole disease. I have been having lumbar disc problems now for a couple years and don't know how long I can deal with this. I am fused from T1 to L1 and my lumbar is terribly painful. I see revision in my future unless there is something else going on that we haven't yet discovered. I am going for a second opinion in July because it just doesn't seem like disc pain anymore, more like bone pain.
    I found an awsome sight for people such as ourselves that have had the sames surgeries and that are facing more. I think if you type in Salvaged Sisters of Scoliosis in your browser you will find it since I cannot post the address. There is alot of good info and good recommendations for revision specialists. It is a very helpful sight. I wish you all the luck and hope that you find painfree days soon!

    ------------------
    27 years old
    1993: T1 to L1 fusion due to scoliosis at age 17
    2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
    June 2002: Had a relapse and tore disc again. It is going on a year and my disc pain has subsided now I am faced with facet joint and bone problems restricting my movement.
    Not sure what is next!
    Still waiting to go into remission again but I think the damage is done!!
    Current doctor say to wait it out.
    Going for second opinion in July.
    __________________
    27 years old
    1993: T1 to L1 fusion due to scoliosis at age 17
    2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
    June 2002: Had a relapse and tore/ruptured disc again.
    Now I'm 14 months into it and the pain is still there.
    Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!

     
    Old 06-16-2003, 11:58 AM   #8
    BackWoes Lisa
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    Oh noone needs to be that type of pain!!!

    When we are in apin it puts so much extra stress on our bodies. Our hearts will beat irregularly our blood pressure goes up causing headches ect...

    Does lying down with heat or ice help with the pain? Does doing certain activities make the pain worse?

    You need to verse to your Dr. That you need some help with this. Crying is not a normal everyday thing !! Your Dr is being paid to help you !! To make you feel as best as you can. And if he needs to prescribe some pain medication to assist you with your day to day activities then that is his job.

    You don't have to be sitting around with a pain level of 8 or 9 in tears.

    I was afraid of taking medication at first too. Oh I'll become addicted....... I didn't. And people with pain using the medication right most of the time won't become addicted either.

    Please Please get the help you deserve.

    Tell your Dr you hurt. Describe it to him. Be honest and fair.

    Good luck
    L


     
    Old 06-16-2003, 05:23 PM   #9
    Renee016
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    Lisa, you are right. The problem is that I haven't been 100% honest with my doctor because I just had surgery on my neck and I guess I didn't want to start complaining about other pain right away. I know it sounds ridiculous but I was so sure my leg symptoms were due to my neck and so adamant about it that I didn't want to accept that the pain was getting worse and worse every week. But now it's gotten to the point that I can't ignore it anymore. It's gotten to the point that I can't do my regular daily activities, something as simple as washing my face because I can't lean over the sink.

    My doctor was in surgery all day today but I spoke to his secretary and she is going to get back to me tomorrow with the name of a pain-management doctor.

    Christina - it is so nice to hear from someone else with scoliosis...not nice that you have this, but good to know I'm not the only one. I don't find too many people on these boards who have scoliosis. Do you know what your curves were? I don't remember mine and my records are gone. What type of hardware do you have? It's interesting that you're only fused to L1 and you're having lumbar problems. I've been told that I shouldn't have lumbar problems because I'm only fused to L3!!! I was told a lot of things that just weren't true, like when I was told that I couldn't have an MRI. I was also led to believe that I was cured and that there was nothing I couldn't do.

    I would love to hear your story if you have the time.

    Renee
    __________________
    1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
    1999 Neck problems began
    2001 Cervical Kyphosis
    2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
    2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
    2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
    Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
    7/03 EEG, BAERS and MRI of brain all normal
    7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

     
    Old 06-17-2003, 05:30 AM   #10
    ChristinaD
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    Renee,
    Boy do I know what you mean by them telling you you were cured! I was led to believe the same thing. I honestly thought that after the surgery which went very well, that I was cured forever. I had absolutely no concept of what degenerating discs were and never drempt that I would ever have another problem. That is what makes me so angry. I would have treated myself and my back completely different, I mean lets face it, I was hard on myself. They said everything but bungy jumping, motorcycling, and sky diving pretty much was okay and I did it. You know, even all the follow-ups I had the years after surgery, they never once mentioned the discs below later deteriorating. And how could they possibly think that it isn't necessay to mention that! That is what I mean when I say I'm angry, I could go on and on.
    It is also very hard because I blame alot on myself which I shouldn't because at 17 I left everything up to my mom to investigate and she was just as uneducated. Now, till this day I don't think she can quite grasp the fact that I have so many problems because they never informed us then that these things can happen. It is a hard road though, I know. I try to remain optimistic!
    To answer your question, I have two harrington rods, why I'm not sure because everyone say they stopped using them in the 80's but I have no clue. And my thoracic curve was around 60 degrees and I don't now about my lumbar. It does still have a curve in it and that could be contributing to some of my problems too.

    Your right though, there isn't too many on this board with scoliosis but these guys on there understand the chronic pain that is for sure and that is what is comforting.
    You should definetely check out that sight I told you about though,there are many people to relate to!
    Well, sorry for rambling, you'll have to stick around and keep in touch. Good luck to you!

    Christina

    ------------------
    27 years old
    1993: T1 to L1 fusion due to scoliosis at age 17
    2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
    June 2002: Had a relapse and tore disc again. It is going on a year and my disc pain has subsided now I am faced with facet joint and bone problems restricting my movement.
    Not sure what is next!
    Still waiting to go into remission again but I think the damage is done!!
    Current doctor say to wait it out.
    Going for second opinion in July.

    [This message has been edited by ChristinaD (edited 06-17-2003).]
    __________________
    27 years old
    1993: T1 to L1 fusion due to scoliosis at age 17
    2000: Tore and ruptured L4 L5 & L5 S1-it finally got better after about a year. Did really well for about a year.
    June 2002: Had a relapse and tore/ruptured disc again.
    Now I'm 14 months into it and the pain is still there.
    Can't deal with it anymore so I'm having a discectomy in Sept. Hoping and praying that it takes care of my problems!!

     
    Old 06-17-2003, 07:13 AM   #11
    BackWoes Lisa
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    hi

    I was thinkng about this topic this morning and my mind got kinda scrambled but this is what I came up with.

    When we were young kids we learned to "respect" teachers, policemen, and Doctors. And in this respect we have put them almost on a pedestal. I have gone to my Dr and said fix me but kinda expected her to have a 6th 7th and 8th sense and just know what was wrong without me giving her info. Boy was I a dummy.

    until

    My back injury. I have learned to keep my dr informed. I keep a pain med and pain level diary. This helps her know whats going on with me and it helps me realize I am not getting addicted to my meds. I write down my questions and ALL my symptoms. And let me tell ya some of the things I tell her I find hard to get out of my mouth without turning red. But if I don't tell how can I expect her to help?

    ANd in the 3 months or so I have been reading some of the postings here I have seen that my symptoms aren't unusual. This board is great. There is support and venting and the realizing that we are not alone.

    Daily activites.... Oh I can totally relate to that!

    I have learned to pace myself I do things in 5-15 minute intervals depending what the activity is. I cannot bend well either. I sometimes sit in a chair and unload the dishwasher onto a counter and then put them away ( bottom rack ) I don't do a whole lot each day. I do have a supportive family and that is my life line. I guess I have changed my routine alot during the past 6 years. Dropping something... I am gonna get me a reacher grabber tool that people here talk about !
    The activity I struggled with the most was blow drying my hair. I used to bend over and blow dry it upside down, well no more of that !!!

    As you see there are people here who can relate to what you are feeling and going thru. There are suggestions and help on everything it seems.

    good luck

    L

     
    Old 06-22-2003, 06:16 PM   #12
    Renee016
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    Sorry, I was not able to post for a while - this happens once in a while.

    Lisa - that sounds like a good idea with unloading the dishwasher - I think I will try it. I guess it's time I got creative with how I do things. I've been asking for help more I try to have my son mop the floor in the kitchen. I got one of those swiffer things, so it's pretty easy for him.

    I forgot if I mentioned that I scheduled an appointment with a specialist at the end of July in NYC. He worked with another surgeon for several years - someone who developed a later instrumentation device (the Cortrel-D??? something). I also called the hospital where I had my surgery 20 years ago and was so excited to find out that they have all my records on microfilm. I just sent away for the copies yesterday. The only thing is they didn't have my x-rays anymore, which I was a little disappointed about. But I will still get to find out a lot of stuff that I forgot, especially what my curves were. And hopefully I will have them before I see the specialist.

    Actually, I don't feel too bad today. I purposely did not do much housework this weekend to see how much a difference it made and it did make a lot. I think because I do all my housework on the weekends instead of spreading it out, it just kills me. I'm gonna try and spread it out this week and see what happens.

    Take care, everyone
    Renee
    __________________
    1982 Fusion surgery for scoliosis with stainless steel Harrington Rod (T5 - L3) using pelvic bone for grafting
    1999 Neck problems began
    2001 Cervical Kyphosis
    2002 Diagnosed with Epstein-Barr (level was 7+) and Chronic Fatigue Syndrome
    2003 3 Herniated Cervical Discs - C4 thru C7. One disc (C5-6) pressing on the spinal cord (no nerve root compression) causing leg weakness, tingling, burning and numbness - diagnosed with myelopathy and ACDF recommended.
    2/24/03 One-Level Anterior Cervical Discectomy with donor bone and titanium plate (C5-6)
    Post 2/03 - Symptoms returned and worsening. Weakness in my legs is like walking against a 50 mph wind - pain in lower back and all the way down my right leg to the ankle - vertigo, muscle spasms in trunk and legs
    7/03 EEG, BAERS and MRI of brain all normal
    7/03 MRI of lumbar spine showed mild herniated disc (L4/5) with moderate to severe DDD and edema in the endplates. HOLDING OUT FOR ARTIFICIAL DISC REPLACEMENT!

     
    Old 06-23-2003, 03:51 AM   #13
    mokita
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    Ho Renee!

    Glad to hear you were feeling better yesterday! It's good that your son is helping you! and FANTASTIC that you'll be getting your records!

    Good luck w/ your experiment this week w/ housework! Maybe I should try that w/ my gardening... I try to be superwoman when my girls are sleeping... so, I'm bent over for over an hour... and - yikes - it's painful the rest of the day! Maybe I'll let the weeds grow for now.... they have pretty little flowers on them, too!! I'll just say they're a rare form of Daisy!!

    Take care....

    Karen

    ------------------
    9/22/00 24 hour labor, baby posterior, left tailbone killing me
    12/00 MRI - PCP said nothing amiss - but, had to begin taking vicodin
    2/8/02 - 2nd baby born after long, painful pregnance as weight gain
    2000-11/02 various PT + pain meds
    11/02 Referred to Neuro
    3/03 NEW MRI - shows slight bulge L3-L4,slight DDD Neuro Refers to PM for ESI
    3/03 PM Doc orders ESI
    3/21,4/1,4/8 - ESI's no help
    5/9 - Discogram - shows Tear L4 w/ significant leak onto nerves, DDD
    Doc sched NEW discogram 'cuz performing doc oversedated, False Negative
    New Consult w/ Dept Head Cleveland Clinic 7/8

     
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