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Thread: Desperate and in Pain

  1. #1
    Join Date
    Sep 2004
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    New Jersey
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    Desperate and in Pain

    I am very worried (and releived) after reading some of your messages. I had my surgery in 1995 and a surgery to clean out infection a few weeks later. I have been made to feel like I am crazy for having any pain. My surgeon's nurse told me that everyone has back pain and mine most likely has nothing to do with my scoliosis surgery. I am so sure that something is wrong. I haven't been able to do much in about 4 weeks. I can't really stay out of bed for long. I am taking pain medicine and muscle relaxers from my PCP, but they are not helping. I can't get into see my surgeon for another 2 weeks (alreday waited 2 weeks), and I am terrified that something is wrong. I had an awful pregnancy with alot of pain. I stayed in bed after 4 months because my pelvis and hips were in so much pain. My surgeon said it had nothing to do with scoliosis, but my physical therapist and OB said it did. I haven't really been right since the pregnancy. But recently, the pain is so much worse.

    The pain in mostly in my shoulders and especially in my neck. But I have pain also in my right hip area. I have tingling in my hands and feel dizzy alot. I can't concentrate because of the pain and I can't care for my son. My family has been trying to pitch in, but it is really causing a problem. I can't stay in bed for 2 more weeks until my appointment, but can't do anything about it.

    My question is, should I go to the emergency room for x-rays and will that even help?? It is Saturday of Labor Day weekend. Should I have my PCP send me for x-rays on Tues, and if so, what then. Is there anything he can even do about it. I already called to see if the surgeon can see me sooner and they said there is nothing they can do.

    Should I be worried and if my rod is broken, can it kill me or paralyze me. I don't know how urgent this really is????? Is is OK to wait it out??
    Last edited by LauraH; 09-05-2004 at 11:44 AM.

  2. #2
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    Sep 2003
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    Northern California
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    Laura...

    Your symptoms sound like they might be neurological. I think you should try to see a neurologist.

    It's pretty common that we all think that something has gone wrong with our hardware. It usually hasn't. I'm fairly certain that your spine doctor will take x-rays. You should get the originals, or copies, to take with you to the neurologist.

    Only you can tell if things are bad enough to go to the ER.

    --Linda

  3. #3
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    Sep 2004
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    New Jersey
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    I hope that it is something easily fixed, I guess I'll wait and see over the next two weeks. Thank you for responding so quickly. I appreciate it.

  4. #4
    Join Date
    Apr 2004
    Location
    new jersey
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    feel better soon

    Dear Laura,
    I'm so sorry 2 hear your in so much pain...It's the hardest thing when U have pain and have no idea what is wrong with you. I'm sure you'll get to the bottom of the problem so that U can care for your son.
    CONNIE


    Surgery June 28th 2004
    fused T4 -L3
    Hip graft
    Grown 1 1/2 inches
    25/o upper T 15/o
    53/o T 15/o
    37/o L 6/o
    Dr. Micheal Nuewirth
    New York City

    August 6, 2004
    Pulmonary Embolism
    complication from surgery

    January 2007 currently
    increasing pain at the T4/5
    point irratation heardwear

  5. #5
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    Aug 2004
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    California
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    15
    Dear Laura,

    I'm sorry to hear that you are in so much pain! I wanted to share with you that I have had a very similar situation....with very similar pain. I had my fusion in 1989. I began having pain about two years later, but none of the doctors believed me...they called it "phantom pain". It wasn't until about 1993 that they started listening. I, too, thought there was something wrong with my hardware...I was having a lot of pain in my shoulders, neck, especially on the right side ( I agree with Linda, I think that crosses most of our minds, for sure!) . I ended up having the hardware removed in 1997, because they thought it might be irritating my muscles. That didn't help, unfortunately, and I'm still suffering from the pain. My new ortho, who is very good, has said that the pain on the right side, near my rib hump, is probably soft tissue damage from the surgery and the hardware. I also have damaged cervical discs, which cause me pain and tingling down my arms. I too have pain in my right hip, and my doc believes that it is soft tissue damage/scarring from the bone graft (that's where they took my bone from). I also have disc damage in my lower vertebrae that causes pain down my right leg.
    To make a long story short, I wanted to share with you that you are not alone! I know that my case isn't identical to yours, however some of the causes may be similar. It is very common for those of us with fusions to have the discs above and below the fusion to begin degenerating, which can pinch the nerves and cause terrible pain and numbness. I hope some of this info helps you. Definitely see a neurologist, and also try to get some MRI's taken. That's how they finally found out about a lot of what's going on with me.
    I wish you the best! Good luck!

    Melissa

  6. #6
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    Sep 2004
    Location
    New Jersey
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    Thanks for you input. I am scheduled to see my surgeon this Thursday. I have called their office every day for two weeks to try and get an appointment sooner, but they won't even call me back. I am very frustrated that they are already blowing me off and haven't even seen me yet. I know they will do an x-ray on the spot on Thurs., but I am worried that whatever is wrong won't show up on the x-ray and then I am back to square one.

    I noticed that alot of the women's problems started during or after pregnancy. That is when the worst of my pain started as well. I think it in interesting that no surgeon will say that pregnancy can have an adverse effect. When I called the surgeon when I was pregnant they said there was no correlation at all. I know that was not the case. I'll post an update after my appointment on Thurs., because I may need to get some names of good neurologists in the Southern NJ/Philadelphia area. If this appointment doesn't go well, I guess that will be my next route.

    Thanks again for your help and support (I love this site).

  7. #7
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    Aug 2004
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    California
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    Laura,

    Good luck with your appointment! I know how tough it can be...however maybe you'll find a really great doctor!

    Please keep us posted!

    Melissa

  8. #8
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    Hi Laura...

    The medical community gets their knowledge from studies. And, unfortunately, there are plenty of studies that show that pregnancy does not ON AVERAGE have any effect on scoliosis. That doesn't mean, however, that some people experience increases during that time. Actually, I personally think that many people experience an increase in pain following pregnancy, which may be confused with an increase in curve.

    Regards,
    Linda

    P.S. If you're interested, here are some abstracts on the subject:

    Spine. 2001 Jul 1;26(13):1449-56. Related Articles, Links

    Childbearing, curve progression, and sexual function in women 22 years after treatment for adolescent idiopathic scoliosis: a case-control study.

    Danielsson AJ, Nachemson AL.

    Department of Orthopaedics, Sahlgrenska University Hospital, Goteborg University, Sweden. Aina.Danielsson@vgregion.se

    STUDY DESIGN: A consecutive series of female patients with adolescent idiopathic scoliosis treated between 1968 and 1977, either with distraction and fusion using Harrington rods (n = 145) or with a brace (n = 122), were followed for at least 20 years after completion of the treatment. OBJECTIVES: To determine the long-term outcomes of childbearing and sexual life in women treated for adolescent idiopathic scoliosis, as compared with matched control subjects who did not have scoliosis. SUMMARY OF BACKGROUND DATA: The effect of pregnancy on curve progression is not established, and results are contradictory. Few reports exist on the social life (marriage, childbearing, and sexual function) of formerly treated individuals with scoliosis. METHODS: In this study, 136 surgically treated women (94%) and 111 brace-treated women (91%) completed the Scoliosis Research Society (SRS)/MODEM's questionnaire concerning childbearing and sexual life as a part of an unbiased personal follow-up examination. Of these, 129 surgically treated and 105 brace-treated women also underwent a radiographic examination. The Cobb method was used to measure curve size in present and earlier examinations. An age-matched control group of 90 women was randomly selected and subjected to the same examinations. RESULTS: The mean age for all the groups was 40 years. Of the surgically treated and brace-treated women, 85% were or had been married, as compared with 82% of the control women. In the total cohort, 628 pregnancies had occurred. No significant mean difference existed between the groups in the number of children born (1.8 for the surgically treated, 1.9 for the brace-treated, and 2 for the control women) (P = 0.25). The patients in the brace-treated group had a significantly higher mean age at first pregnancy (28 years) than the control subjects (25.9 years) (P = 0.011), whereas the age for the surgically treated women (26.6 years) did not differ significantly from that for the brace-treated women. There were no significant differences between the groups in rates for low back pain (35% for the surgically treated, 43% for the brace-treated, and 28% for the control group) or for cesarean section (19% for the surgically treated, 14% for the brace-treated, and 18% for the control group) during the first pregnancy. The rate of vacuum extractions was higher in the surgically treated group (16%) than in the control group (5%) (P = 0.036) or the brace-treated group(8%). Limitation of sexual function from the back was admitted by 33% of the surgically treated, 28% of the brace-treated, and 15% of the control women: surgically treated vs control subjects (P = 0.0042), brace-treated vs control subjects (P = 0.026), and brace-treated vs surgically treated subjects (P = 0.57, a nonsignificant difference). These limitations were largely because of difficulties participating physically in activities or self-consciousness about appearance. Pain was a minor reason for limitation. There was no correlation between progression of the major or lumbar curve and number of pregnancies, or between curve progression and age at first pregnancy. CONCLUSIONS: Patients treated for adolescent idiopathic scoliosis appeared to function well with regard to marital status and number of children. The scoliotic curve did not seem to increase as a result of childbearing. Minor problems occurred during pregnancy and delivery. Some patients, however, experienced a slight negative effect in their sexual life.

    J Bone Joint Surg Am. 1987 Jan;69(1):90-6. Related Articles, Links

    Scoliosis and pregnancy.

    Betz RR, Bunnell WP, Lambrecht-Mulier E, MacEwen GD.

    The effects of pregnancy on patients who have idiopathic scoliosis were investigated in terms of increased risk of progression of the curve. The charts, radiographs, and other pertinent data on 355 affected women who had reached skeletal maturity (Risser Grade 4) before 1975 were reviewed and analyzed. One hundred and seventy-five patients had had at least one pregnancy each (Group A) and 180 patients had never been pregnant (Group B). The groups were comparable with regard to the treatments that they had received. After skeletal maturity was reached, the curve progressed more than 5 degrees in 25 per cent and more than 10 degrees in 10 per cent of the patients in each group. The age of the patient at the time of the first pregnancy did not influence the risk of progression, and the stability of the curve before pregnancy did not decrease the risk of its progression during pregnancy. In patients who had had a spinal fusion, progression in the unfused portion of the spine was negligible in both Group A and Group B. The presence of a pseudarthrosis did not result in progression of the curve during pregnancy. The effects of scoliosis on pregnancy and delivery were evaluated in the 175 women in Group A. No specific problems that were directly related to the scoliosis were noted except for four patients, in whom delivery posed difficulties. The incidence of cesarean section was one-half of the national average, and no sections were directly related to the mother's scoliosis.


    J Bone Joint Surg Am. 1980 Oct;62(7):1083-7. Related Articles, Links

    The effect of pregnancy on idiopathic scoliosis.

    Blount WP, Mellencamp D.

    To study the effect of pregnancy on idiopathic scoliosis, ten patients were followed through nineteen pregnancies. Three patients lost 2, 6, and 18 degrees of correction during their initial pregnancies, but the curves remained the same or improved with later pregnancies. The curves of the remaining seven patients, which had stabilized before conception, did not progress. The stability of the scoliosis was not related to the age of the patient. Stable scoliotic curves did not progress with pregnancy in patients in the second decade of life, while unstable scolioses progressed in patients as old as the third decade. The amount that the curve increased was not associated with the initial size of the curve. We hope that our experience will aid orthopaedists in counseling their patients regarding the effect of pregnancy on the magnitude of scoliosis.

  9. #9
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    Sep 2004
    Posts
    5

    9 years later after scoliosis surgery pain in the upper back

    Hi just found this havenly site. My daughter is now 24 and for the last 1 1/2 started to get severe spasms on her upper back where the rod is. there seems to be some inflamation or something like swallen bump. the pain so severe she cant to anything at those times. I have given her skelitex 400mg. but that doestnt really conclude the pain. Her operation was done in Netherlands Amsterdam when she was 15 years old. the curve was 45% the shoulder blade was really stiaking out. But it seems like its bending again. She doesnt have any medical insurance. Ones i took her to orthopedic he sad there is nothing wrong with her back. But yet this severe attacks of pain come back every 5 month or so. Does anyone out there has this problem to? Please let me know. Does anyone know how i can get her insured so she could see doctors and get the x-rays. In europe its covered even if its pre-existing condition. Please someone help me to find what is wrong with her back. sorry for the spelling very, very sad after reading all of this posts. I never even thought of pocibility that people are having problems after such a surgery.
    stell.

  10. #10
    Join Date
    Aug 2004
    Location
    California
    Posts
    15
    Hi, Stella.

    I'm sorry to hear about your daughter's pain. I had very similar pain about 2 years after my first surgery. The doctor's couldn't find any explanation, either. However, years later a newer, better doctor discovered that it was from scar tissue and muscle damage from the surgery. Sometimes that just happens. I don't know if that is what is going on with your daugher, but that's what happened to me. Anti-inflammatories or muscle-relaxers and what help me the best.

    Regarding your insurance dilemma, please see this other scoliosis site...I know that many of the people who are on the forum regularly are from Europe, and they may be able to help you out, as well!
    http://www.scoliosis-support.org/modules/ipboard/

    Good luck, and please keep us posted!!

    Melissa
    Last edited by melsnapp; 09-14-2004 at 09:28 AM.

  11. #11
    Join Date
    Jul 2004
    Location
    Northern California
    Posts
    255

    doctor recommendation in Philly for Laura

    Hi Laura,

    So sorry to hear you are in so much pain. I had intense pain for most of last year, and can sympathize. But you WILL feel better one day, you have to believe that.

    I just thought I would post a brief message as a friend of mine told me about an excellent neurosurgeon in the Philadelphia area, perhaps you could ask your MD if they have heard of him. His name is Dr. Paul Marcotte, he works in the University of Pennsylvania medical system, and he operated on my friend for a trapped nerve in her neck. He comes highly recommended, and I believe he does a few kinds of spine-related surgeries. (My friend particularly liked him because he recommended _against_ surgery for another acquaintance, so he doesn't like to cut for no reason.)

    In any case, all the very best in finding a good doctor. You deserve the best you can find.

    Take care. Laura

  12. #12
    Join Date
    Sep 2004
    Location
    New Jersey
    Posts
    10

    Thanks

    Thank you so much for the doctor's name. I had an appt. with my surgeon last week and there is no broken rods!!! That was a big relief, but now we are back to sqaure one. He found nothing on the x-ray and sent me for an MRI, but again, can't see me for another two weeks. I like him as a doctor and trust him, it is just so hard to see him. Once I get the MRI results, I am defiantely getting a second opinion, no matter what the results (he thinks it may be a disc problem, not related to the scoliosis??) so I will call Dr. Marcotte.
    Thanks again!!

  13. #13
    Join Date
    Jul 2004
    Location
    Dinwiddie,VA
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    8
    I had my surgery in 1989 and the past 5 years I have had pain in my neck, shoulders and right hip as well. The doctor says I might as well get used to the pain in my neck and shoulders this is caused by the stress the rod puts on the back. I also have two discs bad,L5 and S1 and this didnt happen until I had revision surgery and they removed a piece at the end of the rod that was bent. They said I have nerve damage in my hip and leg. I wonder if discs problems arise out of having the metal rod implanted?

  14. #14
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    Luvteddybears...

    Disc degeneration above and below the fusion is relatively common.

    --Linda

  15. #15
    Join Date
    Jul 2004
    Location
    Northern California
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    disk pain

    Hi again Laura,

    Just for reference, if the pain does seem to be coming from a disk, there is also a Philly doctor who specializes in disks (and is taking part in clinical trials for total disk replacement). His name is Dr. Richard Balderston, at Penn Orthopedics--Booth Bartolozzi and Balderston, at Pennsylvania Hospital, Philadelphia.

    I don't mean to bombard you with names, but the more contacts we know the better placed we are! (at least, I console myself with that )
    Take care, Laura

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