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Thread: 11 years later and the pain is getting worse... can anyone else relate?

  1. #1
    Join Date
    May 2012
    Posts
    1

    11 years later and the pain is getting worse... can anyone else relate?

    Hi!

    My name is Alesha and I am brand new to this site. I am so excited to get a chance to talk with other Scolio patients.

    In 2000 I was diagnosed with minor Idiopathic Thoracic Scoliosis, I was 11 years old. I went through Chiropractic treatment for just about a year when they told me that my curve was to severe to continue their treatment and I needed to see a surgeon. In early 2001, at 12 years old, I began seeing Dr. Jeffery Settecerri. He said that my curve had surpassed the brace stage and I would need surgery, my curve was 60 degrees at this point. I had to have a full body MRI to make sure that there wouldn't be anything that could be disruptive to the surgery. In that process, I was diagnosed with Chari Malformation type 1. They said that I would need Chari surgery first and I may not have to have the Scoliosis surgery depending on the outcome. On February 5th 2001 I had my first Chari Decompression Surgery. In about a month after the chari decompression, my curve increased from 60 degrees to 71 degrees and the Scoliosis Surgery was scheduled. The Spinal Fusion took place on April 16, 2001 and it took 13 hours. In November 2009 I under went a second Chari Decompression surgery.

    This year has been the worst year yet, in regards to pain. My lower back and shoulders seem to hurt more than ever before, even before the surgeries. I have problems with tingling and numbness in my lower back and my legs, which only seems to get better when I get up and move around. I know the doctor said that there is a strong chance that I would have to go through another surgery in my upper 20s-mid 30s, but I am starting to wonder if the pain I am experiencing is what he was warning me about.

    Is there anyone on this forum that has/is going through pain again? What are you doing to help the pain?

    I thank you for taking the time to learn a bit about my story and help with some advice.
    Alesha A.
    22 years old
    _______________________________________
    Had surgery 11 years ago
    Idiopathic S-Curve
    Was 71 degree curve, Now 30 Degree Curve
    _______________________________________

  2. #2
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Alesha--
    I'm afraid I don't really have any answers for you but I know there are ones here who can or can direct you to the right place. I just wanted to welcome you. So sorry you are experiencing that much pain at your young age. Good luck with all of this. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,557
    Hi Alesha

    You came to the right place, there are plenty of us scoliís here who support one another.

    So sorry to hear about your pain and your surgeries at such a young age. Iím wondering where your fusion ends since you mention this pain and tingling in your legs.

    Everyone has their own ways of dealing with pain....One of the things I do is simply to eat something light, and lay down. I know this sounds very simple, but its basically the 1st thing I do.

    I also like hot water immersion.....taking a hot bath helps.....

    These are some of the easiest things we can do.

    Anyway, we are glad you are posting. Welcome to the forum.

    Ed
    49 yr old male, now 59, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
    Join Date
    May 2009
    Posts
    3,745
    hi Alesha
    welcome...i hope you find helpful suggestions here....
    i am sorry you need this forum, but will be glad if it helps you...
    this is a group no one wants to need...after all, who wants scoli....?!
    but there are many kind and helpful people on this forum...

    did the doctor tell you that numbness and tingling usually means nerves...???
    i did not see mention of where you are fused...where it begins and ends, as Ed mentioned...
    and where do you live...??

    i hope you find help....
    pain from spinal problems is so awful, before or after surgery....

    jess

  5. #5
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    I just want say welcome . Please ask your questions here and someone will answer you
    This is a wonderful group of people
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  6. #6
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Hi Alesha,

    Welcome to the forum, I'm new to this too, a few days :-)

    Sorry to hear your getting so much pain. As Jess said, where is your fusion?

    I too have an S curve and have been getting increased pain since 2010 and am now waiting for a full fusion with possible pelvis fusion as my top curve has go progressively worse.

    I take pain meds and anti inflamatorys which sometimes help and I have a hot water bottle at work and home wish can really help to relax the muscles and lessens my pain and tingling in my right arm or legs. You could try that, others find that an ice pack works so you could try both. When possible I lie down and let my back relax that way.

    I also keep exercise to a minimum but I'm having to do that because my lung capacity has been reduced on my right side because of my top curve. If you're able to light swimming or walking may also help.

    Hope you find something that helps
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  7. #7
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Hi,

    welcome to the forum. I'm sorry you are having so much pain. I would think the first thing to do is to check in with a scoliosis surgeon, just to make sure that something isn't seriously wrong like a broken rod or something like that. Are you near your original surgeon?
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  8. #8
    Join Date
    Nov 2012
    Location
    Arizona
    Posts
    1

    Have you found anything out??

    Quote Originally Posted by Alesha View Post
    Hi!

    My name is Alesha and I am brand new to this site. I am so excited to get a chance to talk with other Scolio patients.

    In 2000 I was diagnosed with minor Idiopathic Thoracic Scoliosis, I was 11 years old. I went through Chiropractic treatment for just about a year when they told me that my curve was to severe to continue their treatment and I needed to see a surgeon. In early 2001, at 12 years old, I began seeing Dr. Jeffery Settecerri. He said that my curve had surpassed the brace stage and I would need surgery, my curve was 60 degrees at this point. I had to have a full body MRI to make sure that there wouldn't be anything that could be disruptive to the surgery. In that process, I was diagnosed with Chari Malformation type 1. They said that I would need Chari surgery first and I may not have to have the Scoliosis surgery depending on the outcome. On February 5th 2001 I had my first Chari Decompression Surgery. In about a month after the chari decompression, my curve increased from 60 degrees to 71 degrees and the Scoliosis Surgery was scheduled. The Spinal Fusion took place on April 16, 2001 and it took 13 hours. In November 2009 I under went a second Chari Decompression surgery.

    This year has been the worst year yet, in regards to pain. My lower back and shoulders seem to hurt more than ever before, even before the surgeries. I have problems with tingling and numbness in my lower back and my legs, which only seems to get better when I get up and move around. I know the doctor said that there is a strong chance that I would have to go through another surgery in my upper 20s-mid 30s, but I am starting to wonder if the pain I am experiencing is what he was warning me about.

    Is there anyone on this forum that has/is going through pain again? What are you doing to help the pain?

    I thank you for taking the time to learn a bit about my story and help with some advice.
    Hi Alesha,

    My name is Laurie and I am 21 years old. I also had scoliosis surgery when I was in 8th grade, so about 8 years ago. After the initial year of recovery, I was able to do just about everything: soccer, running, wakeboarding, etc. As of the past 7 months or so, I seem to be experiencing the exact same symptoms that you have described such as tingling and numbness in my legs, lower back pain, and sharp pains between my shoulder blades. I was recommended to physical therapy and did that for about 6 months, but am still experiencing many of these symptoms. I am seriously considering going to a scoliosis institute because unfortunately, my surgeon passed away a few years ago. Have you gotten any answers about your pains? Have you been recommended to get another surgery, and if so, where do you see a scoliosis specialist? I am looking for the best of the best to finally get some questions answered regarding all of these strange symptoms, so it would be nice to hear from somebody who is experiencing the same thing! Thank you for posting, it made me join this forum and realize I'm not the only one out there who is having so many issues so long after the surgery.

    Hope to hear from you soon,
    Laurie

  9. #9
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Hi And welcome,
    Please go back to your Dr. I could not find where you live,but make sure to see someone who can tell you what is going on. It does seem as if the younger people that have had a fusion--it may not extend down to the lower levels of your spine and that may now be a problem. You will not know until it is checked. Some one here may be able to suggest a Dr in your location. Best wishes!

  10. #10
    Join Date
    Sep 2012
    Posts
    23
    I am so sorry to hear of your pain from surgery and at such a young age.
    It, too, am in pain from my surgery but I'm a lot older.
    I know this is not much consolation, but I lie on a heating pad and I also have a cushion with a heating pad that I lean against while at my desk.
    Soaking in a hot tub always helps.
    And some people find relief in pain medications, either anti-inflammatory meds or opiates. It's not a good solution, but it might help you through the really bad episodes.
    Have you considered a hardware surgery? I had my metal taken out and it did make me feel more comfortable overall.

    Best of luck to you. I am so sorry that you are in such pain and I do totally understand.

  11. #11
    Join Date
    May 2009
    Posts
    3,745
    Alesha, since another surgery in the future was mentioned to you before,
    i am wondering if you had a fusion that doesn't go all the way down your
    lumbar...if so, it could be possible that the spine below your fusion has
    been taking brunt of shocks and jolts of everyday living...and now you
    are feeling the effects of that...
    i agree with whomever said...Jackieg412, and debbei...to see a top surgeon to be
    evaluated...make sure nothing has broken, and see what condition your
    spine that was not fused is in...

    i am so sorry for your pain and hope you find a doctor who can help you
    soon...

    jess
    Last edited by jrnyc; 12-20-2012 at 12:40 AM.

  12. #12
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Quote Originally Posted by Alesha View Post
    I know the doctor said that there is a strong chance that I would have to go through another surgery in my upper 20s-mid 30s, but I am starting to wonder if the pain I am experiencing is what he was warning me about.
    Hi Alesha,

    Very sorry to hear of your pain. Do you remember why the surgeon told you that you would need another surgery? Several folks have commented on this already... where is your curve and where did the fusion end?

    If your curve is not entirely in the thorax but extends into the thoracolumbar or lumbar region, I have noted that surgeons will not fuse the entire curve in young people in order to retain mobility. And indeed you went back to your normal sports it seems. In older people, they will fuse the entire structural curve so it is one-stop shopping for surgery but decreased mobility. It's a trade-off that the surgeon might have discussed with you unless the protocol for young people is to not fuse the entire curve but trigger a second surgery many years down the road. I am thinking that is the protocol based on the testimonials I have read. But I really have no idea. Only your surgeon will know.

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  13. #13
    Join Date
    Jan 2013
    Location
    Willington, CT
    Posts
    10

    Welcome

    Hi, Alesha - I am new to this site, too, but it has helped me by simply making me see that I am not alone. I don't have a specific answer for you, but if you haven't had regular scoli scans each year, you should get checked out. I wish I could say that scoliosis surgery fixes everything forever, but as you'll hear from everyone, it doesn't. It could be that a round of physical therapy will help. And although it may seem counter-intuitive, moving more definitely helps. But do so under the direction of a therapist or trainer who specializes in spinal issues. Over the years (almost 30 since diagnosis), I have found that there are three stools to managing our condition and our pain -- relaxation/restoration, movement and nutrition. Managing your food can also help with pain, nerve and tissue regeneration. So you may also want to consult with someone who knows about using food as medicine. If you have trouble with finding any of these resources, let me know and I will do my best to help! Good luck and welcome!
    Fused T10-S1 and C5-7
    Adult Onset at 25, with first surgery at 38
    Six total surgeries, including one for staph infection
    Found relief from pain without pills

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