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Thread: Not sure if this is the right board-pain question

  1. #1
    Join Date
    Jul 2006
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    17

    Not sure if this is the right board-pain question

    Hi there this is my first post here. Man i wish they had boards like this when i was growing up!

    My name is Wendy and I am a 37 yo mother of two from Oregon, who has had 2 harringtion rod/spinal fusion surgeries for an S curve. THe first one they did the upper back the second the lower back, and they were done 4 year apart. The first was in 1983 the second in 1987.

    I had never had any pain problems before but the last few years i have been experiencing excrutiating pain in my left upper shoulder and neck (the shoulder that is higher and still has a pretty large hump.)

    My orthopedic surgeon has since retired so my primary care dr. sent me to another one. Who informed me scolisis doesn't hurt and treated me like i was lying. Trust me this pain is very real and affects my daily life greatly. I can't work, can barely sleep and can't do a lot of things i would love to with my kids.

    The xrays hadn't changed at all and nothing looked at all different, the pain seems to be muscular. I have had physical therapy in the past but unless i continue on it the pain resumes.

    Has anyone else here experienced this or does anyone know of anyone else that has? There are days i feel like i am losing my mind and i don't know how much more i can take.

    I currently don't have medical insurance but will be getting it soon so i can hopefully get some answers but i want to be able to go in a bit more informed than the last time.

    Thank you for your time.
    Last edited by pleasemama; 07-11-2006 at 08:23 PM.
    37 yo
    diagnosed at the age of 5. Wore milwaukie brace with boston girdle from 2nd grade until 8th, had first spinal fusion/harrington rod surger upper back, 1983. Brace was taken off after healing.

    In 1987 discovered lower back needed surgerie as well, had 1st rod replaced and 2nd put in.

    I have a 6 yo son who was diagnosed with infant scoliosis at the age of 1. Seems to have outgrown but we are monitoring.

  2. #2
    Join Date
    Apr 2006
    Posts
    227

    Smile

    Oh my! I'm a 36 year old with 3 kids. Wore the Milwaukee from 3rd-7th grade. Harrington rod in 1982 (T2-T-12). Started pain in my right shoulder (EXCRUCIATING!) and down my right arm. (Have still lost tons of feeling in my arm). Pain started this March. All told me nothing was wrong - until I finally saw my scoli specilialist - my spine below and above (neck area) look like snakes (I kid you not!). Keep looking for a specialist! I think many of us on this site are in your predicament - you may want to scan sites - there are some recent sites on Harrington Rod you may want to check out. I was just shocked at how similar our situations are!

    Keep searching for answers!
    Always Smilin'

  3. #3
    Join Date
    Jul 2006
    Posts
    17
    Thank you for your reply! I am fighting of tears right now. I was beginning to think it was all in my head. That dr. i saw told me point blank "Scoliosis doesn't hurt" and basically dismissed me. I am sorry that you are having problems with pain as well but i am glad to know that i am not alone.

    I haven't had a scoliosis specialist since i got my last brace off. I moved around a lot and honestly it never gave me any problems until the last few years. And it seems the more time that passes the more painful it gets. I was taking so much aleve and advil that i developed stomach bleeding from it, so now i am really limited in what i can take.

    Thank you again for taking the time to respond. I really appreciate it, you have made me feel so much better, just knowing that there are others that are going through what i am, and that the dr. i saw is a complete bafooon LOL
    37 yo
    diagnosed at the age of 5. Wore milwaukie brace with boston girdle from 2nd grade until 8th, had first spinal fusion/harrington rod surger upper back, 1983. Brace was taken off after healing.

    In 1987 discovered lower back needed surgerie as well, had 1st rod replaced and 2nd put in.

    I have a 6 yo son who was diagnosed with infant scoliosis at the age of 1. Seems to have outgrown but we are monitoring.

  4. #4
    Join Date
    May 2005
    Posts
    42
    Pleasemama,

    That doctor you saw knows nothing. Dozens of messages here alone confirm that, though scoliosis CAN be painless, it can also be anything but! Aside from that, you have had two serious operations and any doctor should know that this will leave you with some degree of pain as muscles are stretched in different ways, to say nothing of the tingling-rising-to-sharp-pains at the site-sites. Don't go back -find someone who knows a lot more and doesn't make you feel an imposter.
    Best,
    Diana

  5. #5
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    Pleasemama,
    Run do not walk away from this doc. Diana is right, this doc is an uneducated jerk! If he is telling you what you feel, he most certainly has no clue how to measure a "cobb's angle" or anything else to do with scoli. See an ortho that deals with adults
    SandyC

  6. #6
    Join Date
    Mar 2005
    Location
    NJ across from NYC
    Posts
    329
    Pleasemamma - It's not uncommon to suffer years later (not everyone) with that darn Harrington Rod. I had my surgery in 1981 and was pain free until 1997. All of a sudden the pain began and became relentless - under the right shoulder blade, the neck, the hips. I just assummed that I would never have a back problem again after my first surgery but I was wrong. I suffered from pain since 12 years old until my surgery,so that doctor should read up on pain and scoliosis! Granted not everyone suffers from pain but the ones that do certainly do not appreciate a doctor saying different. He/she should walk in our shoes. I wish this pain on no-one. Read through this site, it's extremely helpful. You make connections with people that help you through the good and bad times. Hang in there. Hope you are having a good day. Lynn
    1981 Surgery with Harrington Rod; fused from T2 to L3 - Dr.Keim (at 26 years old)
    2000 Partial Rod Removal
    2001 Right Scapular Resection
    12/07/2010 Surgical stabilization L3 through sacrum with revision harrington rod instrumentation, interbody fusion and pre-sacral fusion L5-S1 - Dr. Boachie (at 56 years old)
    06/11/14 - Posterior cervical fusion C3 - T3 (Mountaineer System) due to severely arthritic joints - Dr. Patrick O'Leary (at age 59)

  7. #7
    Join Date
    Jul 2006
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    17
    Thank you everyone. It really must sound strange but it makes me feel better knowing i am not alone.

    I am glad i found this board. I only wish they had something like this when i was a kid so i didn't feel like such a freak! LOL Its nice to know there are others like me out there.
    37 yo
    diagnosed at the age of 5. Wore milwaukie brace with boston girdle from 2nd grade until 8th, had first spinal fusion/harrington rod surger upper back, 1983. Brace was taken off after healing.

    In 1987 discovered lower back needed surgerie as well, had 1st rod replaced and 2nd put in.

    I have a 6 yo son who was diagnosed with infant scoliosis at the age of 1. Seems to have outgrown but we are monitoring.

  8. #8
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,291

    Question Darn Harrington Rod???

    It's not uncommon to suffer years later (not everyone) with that darn Harrington Rod. (Jaques mom)
    I had scoliosis surgery before Harrington rods were used: that meant spending a year in bed for the fusion to heal--no walking, a modest correction and later on loss of correction because no hardware was there to reinforce it.
    When I later became a nurse-anesthetist I used to give anesthesia for the Harrington Rod surgery. How I envied how straight the patient became because I still had significant deformity after I went through as a teen.

    The problem with some of the rods was that the spine was made too straight from the side (front to back) in other words the normal lordosis and kyphosis were flattened causing abnormal wear on the spine and hips. This caused problems with the discs above and below the fusion among other things. There cases are now helped with revision surgery.

    Harrington rods were the state of the art in the 1970s and 80s. Far from perfect but a significant advance none the less. And far better than spending a year in bed as a 14 year old like I did.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  9. #9
    Join Date
    May 2005
    Location
    Wheeling, WV
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    1,105
    Hi Pleasemama,

    You should have kicked him in the nuts, and when he bent over in pain, said now that doesn't hurt!!! Here I go again!!! WHY are so many medical professionals IGNORANT to Scoloisis??? I just don't understand it.

    There really are Dr.'s out there that understand and devote themselves to adult scolosis.

    Shari

  10. #10
    Join Date
    Jul 2006
    Posts
    34

    Pain!!!

    Hi everyone! I am brand new to the forum. I read the e-mails about the pain and problems and I can't believe it! I have been seeing a neurologist and have tearfully told him I feel like I am going crazy. He has been very sympathetic to my pain but said he cannot do anything more for me. Almost a year of physical therapy, cortisone shots, muscle relaxers and no relief in sight. I wore the Milwaukee brace for 3 1/2 years and then had surgery in 1987, not with the Harrington rods, but the more "improved" Cottrell-Doubuoset rods that were supposed to not produce any problems later. Wrong! My right neck, shoulder and arm (side with the higher shoulder) are a mess. I am always in pain and do not know how much more I can take. I cannot find a doctor who wants to tell me anything, because they are too afraid to say anything that might be negative against my former Scoliosis doctor who is now retired. Has anyone had these type of rods and does anyone feel like their scoliosis is progressing in the non-fused parts of their spine. I feel like my curve is progressing in the parts of my spine that do not have rods, but cannot find a doctor to tell me what is happening. I am now 35 and had the surgery when I was 16. I know I am babbling, but I feel like I have finally found people who can get what is happening here.

  11. #11
    Join Date
    Apr 2005
    Posts
    913
    Quote Originally Posted by MGM Grand

    I wore the Milwaukee brace for 3 1/2 years and then had surgery in 1987, not with the Harrington rods, but the more "improved" Cottrell-Doubuoset rods that were supposed to not produce any problems later. Wrong! My right neck, shoulder and arm (side with the higher shoulder) are a mess.

    I think even if Harrington rods are considered to bring more problems later on, it's true with the newer rods as well, like the CD and Titanium(one of mine broke). Bottom line is, a fused spine is not as flexible as a non fused one(obviously) and it's unnatural. It is a reality that repercussions on the other vertebreas that are not fused can happen years later. But, we can try to take care of our backs the most we can and this is one problem that life had in store for us-scoliosis.

    Welcome to the forum.
    35 y/old female from Montreal, Canada
    Diagnosed with scoliosis(double major) at age 12, wore Boston brace 4 years at least 23 hours a day-curve progressed
    Surgery age 26 for 60 degree curve in Oct. 1997 by Dr.Max Aebi-fused T5 to L2
    Surgery age 28 for a hook removal in Feb. 1999 by Dr.Max Aebi-pain free for 5 years
    Surgery age 34 in Dec.2005 for broken rod replacement, bigger screws and crosslinks added and pseudarthrosis(non union) by Dr. Jean Ouellet

  12. #12
    Join Date
    Sep 2003
    Location
    Fernley, Nevada
    Posts
    352
    MGMGrand,
    The CD rods are very similar to the Harrington and cause the same problems. Instead of seeing a neuro, you need to be seeing an orthopedist that deals with adult scoli patients. If you do a search at the top of this page you may find a doc in your area.

    Sweetness,
    Just to clarify, CD Rods are just a name of the type of rod, like Harrington. Titanium is a metal, like gold or steel
    SandyC

  13. #13
    Join Date
    Jul 2006
    Location
    Ohio
    Posts
    4
    pleasemama, yes, most of us have had the same or similar symptoms to you. There are days when I'm not sure if I'm going to be able to get up out of bed. To sit in the car or an airplane for more than a couple of hours is completely out of the question unless, I want to lay flat on my back for 2-3 days afterwards.

    My left side seems to be the one that gives me the most problems. At times it hurts to let my left arm hang naturally. I find myself holding my arm around my waist for support.

    I agree with the others, find another doctor. Any doctor that tells you it's in your head is not one you want to spend anymore time visiting or listening to his/her recommendations.

    Good luck and do try to find someone who deals with adult scoli patients. You might want to check with the nearest children's hospital to you and their ortho dept. That's how I found mine.

  14. #14
    Join Date
    Jul 2006
    Posts
    17
    Quote Originally Posted by Shari
    Hi Pleasemama,

    You should have kicked him in the nuts, and when he bent over in pain, said now that doesn't hurt!!! Here I go again!!! WHY are so many medical professionals IGNORANT to Scoloisis??? I just don't understand it.

    There really are Dr.'s out there that understand and devote themselves to adult scolosis.

    Shari
    LMBO i just spit coke all over my keyboard.

    I was in too much shock to really do anything. He basically made me feel like i was making it up. I have some bursitis in that shoulder and that was all he saw. I left there feeling like i was kicked in the nuts (and i am a woman LOL) and beaten down. After that the primary care dr i was seeing also downplayed the pain.

    Since then i have changed primary care Drs. and she understands a lot more. My biggest problem is i can't take a lot of drugs for the pain due to heart problems and i can't take things like aleve and motrin that used to help because i developed a gi bleed from taking so many because of the pain. It sucks!

    My insurance kicks in on August 1st and i can't wait to go in and talk to my Dr.

    Whatever is going on it seems to be getting worse and i am having more and more bad days and let me tell you as a very active mom of two even more active boys it is killing me to not be able to keep up with them!
    37 yo
    diagnosed at the age of 5. Wore milwaukie brace with boston girdle from 2nd grade until 8th, had first spinal fusion/harrington rod surger upper back, 1983. Brace was taken off after healing.

    In 1987 discovered lower back needed surgerie as well, had 1st rod replaced and 2nd put in.

    I have a 6 yo son who was diagnosed with infant scoliosis at the age of 1. Seems to have outgrown but we are monitoring.

  15. #15
    Join Date
    May 2005
    Location
    Wheeling, WV
    Posts
    1,105
    Hi Pleasemama,

    This matter of Dr.'s dismissing our pain and situation, just really chaps my ass!!! I think most of us have experienced it more than once. I had one Dr. tell me I had arthritis. Had another tell me he wanted to wait and see, because he had nothing to prove I had progressing curves, all my xrays I had since I was 12, were lost in a house fire and he wouldn't take my word that my curves had changed over the years.

    I finally found a Dr. that felt that it was what my curves were now that mattered. They are out there, you just have to find one. Sorry about your keyboard, but this subject riles me up!!!

    Don't give up,
    Shari

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