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Thread: My Scoliosis Story, (so far)....

  1. #16
    Join Date
    May 2008
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    reno,nevada
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    Michelle, If you have scoliosis, you really should consult with a scoliosis surgeon....... They have the best chance of catching things the others will miss....after a little chat discussing scoliosis related stuff, chances are you can move on. The surgeon might just have a few connections with knowledgeable PT people or otherwise......A major scoliosis center is best. I posted recently about a lady (age 54) who had some back pain, she thought it was a pulled muscle and had devastating news about metastasized cancer (uterine) wrapped around her spine with resulting emergency spine surgery. I know, it is very scary since we are all used to pain, many of us brush it off. One can continue to take massive amounts of medications for scoliosis related pains that mask cancer, and end up in a whole bunch of trouble.

    One of the things about massage is that no leverage moves should be used. I had this done once and I was DONE. So, yes its not easy finding the right person, I was active at the famous Steamboat Springs at the base of Virginia City, Nv. Mark Twain used to go there back during the 1860ís. If it was good enough for him, it was good enough for me! (smiley face) I found out that BOILING in a deep hot tub before a massage was the ticket. I would then have a 2 hour massage immediately after and walk out in heaven. That was an expensive habit, and did those 2 times a week for 6 years. About $85K worth. After my surgeries, I didnít need massage, I donít have the pain. My masseuse was devastated since I was a heavy tipper and wanted priority scheduling.

    I did Chiro for multiple decades. Thousands of adjustments.....they kept me going...They also had a Chinese accupressure girl there, trained in China, and she worked miracles....Half of her therapy was painful and the other half felt ok. On the painful pressure points she would say ďEd, it is necessaryĒ...... She wanted to get married, but I was afraid she would give me the finger.....(thatís my accupressure joke) Ha ha

    You say your having neck, back, arm, and leg pain? I wonder what this could be?......Sounds like the neurologist visit will be worth trying, I never saw one myself. What can be common with elder scolis with decent lumbar curves is resulting sciatica which is devastating hip and lower leg and ankle pain. When discs herniate they push against the spinal cord and create major nerve pain. It becomes a new much higher level or class of scoliosis related pain, with the switch setting on full. It drove me into A/P scoliosis surgery. I am 9 years post now.....

    You need x-rays shot. Request a copy burned to disc from the radiology dept. I had a doctor throw out my diagnosticís upon retirement and was NOT pleased, so donít let them give you any guff about this. I get copies of all my expensive diagnostics, I paid for them. Surgeons like seeing dated x-rays and history. It helps them with their decision. You can also tell them you might move and not having them is not an option.....When you get your full digitals, you can zoom in on them. Mine in my link are digitals, you should be able to zoom in.

    Also, always double check your co-pays on diagnostics......If the co-pays are out of control, get the order and shop your own diagnostics with a cash payment. There are radiology companies all over and they like cash.

    Be sure to let us know how it goes....

    Ed
    49 yr old male, now 58, the new 53...
    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

  2. #17
    Join Date
    Jan 2017
    Posts
    6
    Ed,

    I enjoy reading your posts and insight to things I would have never thought of, like requesting a copy of x-rays. Thanks. Yeah, I have nerve pain and tingling near my right shoulder blade, where my thoracic curve is. The nerve pain then radiates up my neck, and down my right arm. I also have nerve pain and tingling in my lower left back, where my lumbar curve is. That nerve pain shoots down my left arm, and left leg. All of these symptoms have been going on 24/7 for the past 2 weeks. I really thought maybe I just sprained something and things would settle down after awhile. So my husband took over everything I do at home; chores, cooking, etc., so I could just sit and not move around! The shooting nerve pain stayed active when sleeping at night, so I'd spend all nights tossing and turning. The only thing that's helped is hot baths! Only, the nerve pain and tingling always came back within minutes of getting out of the bath.

    My PCP started me on Gabapentin yesterday for the nerve pain. I slept pain free last night....it was so great! Today I've still been experiencing nerve pain in my back, (in the areas I mentioned above), but only intermittently. However, the tingling in my back never went away. It's still constant 24/7 tingling. The medication is just to get me through the pain until my neurology consult. My PCP said the neurologist would probably order an x-ray and extensive MRI. So hopefully if there's something crazy going on, it'll show up on the MRI. If I get worse, or if I feel the neurology consult is scheduled too far out, then I'll go to the ER.

    I dislike how long the referral process takes. My PCP has until next Monday to schedule my neuro consult. I'm now questioning why she didn't just send me to an imaging place to get the tests done quicker, seeing the severity of my pain and how long I've had it (2 weeks now).

    Oh wow, I'm so sorry to hear about the woman who found out she had a cancerous tumor wrapped around her spine. That's just awful! Yeah, I don't like taking medications for the reason you mention. I was hesitant to get on the medication for my nerve pain, but my PCP said it's just to give me temporary relief until my neuro consult.

    I have Cigna Open Access Plus coverage. Their website is great and has a cost estimation calculator that I've been using to gather costs for x-rays and MRIs. My annual deductible needs to be 100% paid before Cigna coverage starts. So that'll be a big cost out of my pocket, but I'll probably max out my deductible on this neuro consult.

    Michelle
    2017 - recheck curvature in April
    2010 - 40*lumbar, 51*main thoracic, 33*upper thoracic
    1999 - ASD (heart surgery) ---- congenital heart defect that wasn't discovered until age 20

  3. #18
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    Mar 2010
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    I think is very much reasonable and important really to see a surgeon but there is a risk!. What you would do if he recommends you fusion? I think that 99,99999999% has fusion.

  4. #19
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    Jan 2017
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    Quote Originally Posted by flerc View Post
    I think is very much reasonable and important really to see a surgeon but there is a risk!. What you would do if he recommends you fusion? I think that 99,99999999% has fusion.
    To be honest, I'm not sure what I'd do if surgery was recommended! Having been through open heart surgery at just 20 years old, I understand the investment going that route....I always put my health first. As much as I'd want to avoid back surgery, if a really valued surgeon in the field says I need it, then I'd definitely do it. In fact, I've been reading the Surgical part of this forum to gain knowledge and understanding of every aspect of this decision. So if I'm faced with it down the road, then I'll be prepared to make a decision. A decision not just based on an Orthopedic Surgeon telling me I need it, but also based on my research too.

    Today I called back Washington University Orthopedics Dept. to see if I could get an Orthopedic Surgeon elvaluation, but they want me to keep my appointment with their Physiatry sub dept. They said Physiatry will do x-rays, evaluate my spine, and see if PT is an option. They don't want to consider a surgical consult unless the Physiatry dept. recommends it.

    On a side note, I went to the ER this morning. The sharp back pain, and nerve pain was just getting hard to manage. I was diagnosed with Cervical Radiculopathy. A CT scan showed degenerative disease at C-5-6, and C-6-7. This area is also bulging. They did not do a CT of my entire spine, just the Cervical portion. They also prescribed PT for this. I *think* it's PT for just 1 day, and just for the Cervical Radiculopathy Weird. I go to PT next week. I'm on Orphenadrine (muscle relaxant), so we'll see how that helps.

    Doe anyone here have Cervical Radiculopathy? The ER doc told me it's common in those with scoliosis.

    Michelle
    2017 - recheck curvature in April
    2010 - 40*lumbar, 51*main thoracic, 33*upper thoracic
    1999 - ASD (heart surgery) ---- congenital heart defect that wasn't discovered until age 20

  5. #20
    Join Date
    May 2008
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    reno,nevada
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    Quote Originally Posted by diznee25 View Post
    Doe anyone here have Cervical Radiculopathy? The ER doc told me it's common in those with scoliosis.

    Michelle
    Yes, many of us. Myself included...

    Michelle, Your close, but I would INSIST to see Dr Gupta.
    http://www.ortho.wustl.edu/content/P...ta-MD/Bio.aspx

    This guy is no hack.

    Hang in there

    Ed
    49 yr old male, now 58, the new 53...
    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

  6. #21
    Join Date
    Sep 2003
    Location
    Northern California
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    Quote Originally Posted by diznee25 View Post
    I *think* it's PT for just 1 day, and just for the Cervical Radiculopathy Weird. I go to PT next week. I'm on Orphenadrine (muscle relaxant), so we'll see how that helps.

    Doe anyone here have Cervical Radiculopathy? The ER doc told me it's common in those with scoliosis.

    Michelle
    Hi Michelle...

    We often write prescriptions for PT with 1 visit, and the PT evaluates the patient and decides how many visits and how often they're needed.

    Cervical radiculopathy is fairly common in people with scoliosis. I have it, but keep it at bay with daily exercise.

    Best of luck getting your pain under control.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  7. #22
    Join Date
    Mar 2016
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    153
    Quote Originally Posted by flerc View Post
    Remember that fusion is for ever and ALWAYS have a negative side regardless the surgeon doing it.
    is it forever? if you cut the bones they will be mobile again.
    Spinal cord and nerves being intact you can add some mobility again. researchers just need to think a little bit more. if you cut a fusion of course it will be mobile again. there is even pseudoarthrodesis.

    don t believe a doctor that says " forever" . forever is when you are death. As we are still breathing we can find a better solution.

  8. #23
    Join Date
    Jan 2012
    Location
    Yacolt, WA
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    Hi there, Michelle
    Uncertain what Richard means above.
    I started my "journey" like you probably will from what I have read of what you are planning.....with physiatry. Not a bad place to start. When I originally called, the receptionist asked if I wanted conservative or surgical care and I said "conservative", so off I went to the alternative to surgery, pain management. The PM MD sent me immediately to an orthopedic scoliosis spinal surgeon. He explained surgery [then had my husband come for an appointment the next week when he explained surgical option again] and I said that I wanted to continue with PT, etc to avoid surgery. I do recommend seeing a surgeon early one because you can start the relationship, maybe then get another surgical opinion because if you do need surgery down the road, the last thing that you want is to be desperate in severe pain and take the first surgeon that come along [bad idea].

    Best of luck with your journey. My guess is that pain will be the factor that tips whether or not you are offered and agree on surgery. I recommend trying everything possible before agreeing to surgery. When your life is so compromised that surgery is your only option, that's a good time to have surgery. And yes, I have had numerous setbacks with surgery, but for me in severe pain and disability, it was a good option.

    Susan
    Last edited by susancook; 02-11-2017 at 06:18 PM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  9. #24
    Join Date
    Mar 2016
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    153
    Quote Originally Posted by richardis View Post
    is it forever? if you cut the bones they will be mobile again.
    Spinal cord and nerves being intact you can add some mobility again. researchers just need to think a little bit more. if you cut a fusion of course it will be mobile again. there is even pseudoarthrodesis.

    don t believe a doctor that says " forever" . forever is when you are death. As we are still breathing we can find a better solution.
    As of now, it is irreversible to almost 99% of the population, unless you know some super specialized top surgeon in the field who has the knowledge and hard-work mentality to crack the solution. Spinal fusions have already been unfused with success. Fact.

    Science has no limits and so as the human progress as long as you keep working and researching. It will be possible in the future, not sure if in our lifetimes but it will. Every problem has a solution. We know the problems so it is about time to find solutions.

  10. #25
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    890
    Hi Michelle I'm Kara welcome.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  11. #26
    Join Date
    Jan 2017
    Posts
    6
    Quote Originally Posted by LindaRacine View Post
    Hi Michelle...

    We often write prescriptions for PT with 1 visit, and the PT evaluates the patient and decides how many visits and how often they're needed.

    Cervical radiculopathy is fairly common in people with scoliosis. I have it, but keep it at bay with daily exercise.

    Best of luck getting your pain under control.

    --Linda
    Thanks Linda. Yesterday marked my first PT visit, and at the end of my session I was told to schedule 2 or 3 appts per week, and when I asked how long PT would last for me, they said it depends on how responsive my body is to the therapy. Due to the sevarity of my pain, it was decided that I would not exercise on my first visit. Instead my therapist did manual decompression on my neck, and then did an electroshock thing on my shoulders and neck area to loosen up the muscles. Tomorrow I'll be doing posture exercises.

    Quote Originally Posted by titaniumed View Post
    Yes, many of us. Myself included...

    Michelle, Your close, but I would INSIST to see Dr Gupta.
    http://www.ortho.wustl.edu/content/P...ta-MD/Bio.aspx

    This guy is no hack.

    Hang in there

    Ed
    Thanks for the info on Dr. Gupta, Ed. I do plan on a surgical consult...soon. My husband has a lot on his plate right now with his mother's health. She has cancer, and just started hospice care yesterday. We live out of state from family, so we'll be flying to Colorado a couple times in the next few months. Sadly she isn't expected to make it past April/May.


    Quote Originally Posted by susancook View Post
    Hi there, Michelle
    Uncertain what Richard means above.
    I started my "journey" like you probably will from what I have read of what you are planning.....with physiatry. Not a bad place to start. When I originally called, the receptionist asked if I wanted conservative or surgical care and I said "conservative", so off I went to the alternative to surgery, pain management. The PM MD sent me immediately to an orthopedic scoliosis spinal surgeon. He explained surgery [then had my husband come for an appointment the next week when he explained surgical option again] and I said that I wanted to continue with PT, etc to avoid surgery. I do recommend seeing a surgeon early one because you can start the relationship, maybe then get another surgical opinion because if you do need surgery down the road, the last thing that you want is to be desperate in severe pain and take the first surgeon that come along [bad idea].

    Best of luck with your journey. My guess is that pain will be the factor that tips whether or not you are offered and agree on surgery. I recommend trying everything possible before agreeing to surgery. When your life is so compromised that surgery is your only option, that's a good time to have surgery. And yes, I have had numerous setbacks with surgery, but for me in severe pain and disability, it was a good option.

    Susan
    Hi Susan,

    Thanks for sharing your experience. Interesting, so you tried physiatry and they immediately sent you for a surgical consult. That's great to know that physiatry won't push PT, or prolong alternative treatment if surgery is really warranted. Yeah, I'm just trying to start from the ground up, meaning I don't even have current x-rays or MRIs of my spine. All that info is 7 years old. The receptionist said the Physiatry dept is where evaluations, and tests are done. At this point, they won't schedule a surgical consult until I get evaluated. Once I have that appointment, I'll definitely follow up with this thread, and share how my recheck goes.

    Quote Originally Posted by kennedy View Post
    Hi Michelle I'm Kara welcome.
    Hi Kara! Nice to meet you.
    2017 - recheck curvature in April
    2010 - 40*lumbar, 51*main thoracic, 33*upper thoracic
    1999 - ASD (heart surgery) ---- congenital heart defect that wasn't discovered until age 20

  12. #27
    Join Date
    May 2008
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    reno,nevada
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    Quote Originally Posted by diznee25 View Post
    Thanks for the info on Dr. Gupta, Ed. I do plan on a surgical consult...soon. My husband has a lot on his plate right now with his mother's health. She has cancer, and just started hospice care yesterday. We live out of state from family, so we'll be flying to Colorado a couple times in the next few months. Sadly she isn't expected to make it past April/May.
    So sorry to hear this.....

    I had a good friend give me his words of wisdom while he was alive. Once your parents are gone, they are gone. Spend more time with them now.

    I think about my parents every single day. Every single day.....You can avoid thinking about your back, but this never ends.

    Ed
    49 yr old male, now 58, the new 53...
    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

  13. #28
    Join Date
    Dec 2016
    Posts
    32

    Hi Michelle,

    Quote Originally Posted by diznee25 View Post
    Hi everyone!

    My name is Michelle, I'm 37 years old, and I was diagnosed with scoliosis at the age of 21. However, I knew I had scoliosis when I was 9 years old, thanks to Judy Blume's book 'Deenie'. As I read the book, my heart sank because I realized that my body looked the same as Deenies' did. Even so, I grew up in a very religious home, and my dad didn't believe in doctors. So my condition was ignored my entire childhood, even though many of my Aunts and Uncles tried to change my dad's mind. I went on with life, and didn't think about it again until I was 21.

    age 21 (diagnosis) 2001 - 28 degrees lumbar, and 32 thoracic.
    age 30 (recheck) 2010 - 40*lumbar, 51*main thoracic, and 33* upper thoracic.

    My diagnosis and recheck were done by 2 different doctors, because I lived in different states. The doc from my original diagnosis said I was borderline for needing surgery, and that if my curves progressed at all, then I'd need surgery down the road. The other specialist I saw in 2010, said he didn't recommend surgery at all, even though my curves had progressed. He recommended PT, which I ended up not doing because my insurance wasn't great, and I couldn't afford out of pocket costs. This is currently the last recheck I've had.

    Fast forward to the present: The past month, just shortly after Christmas, I've been having constant nerve pain, and tingling in my back and neck. Add that to the moderate pain I've always had from my scoliosis, and I'd say this is the worst pain I've felt. My husband has taken over household chores, and cooking because I can't do those right now.

    So I've scheduled an appointment with Washington University in St Louis MO. (We live in southern IL, just 30 mins away.) At first, the receptionist was going to schedule me with a surgical consult with Dr Buchowski. I was like, no, no.....I don't want to waste his time, at least right now. I just need a recheck of my curvature, and want to see if PT is the way to go first. So I was transferred to the Orthopedic Physiatry dept. They'll do X-rays and whatever other tests are needed, and then see if PT is an option. If I do PT, and it doesn't help any of my symptoms, then they will have me do a surgical consult. I have great insurance now, so I'm looking forward to trying PT. Only downfall is my appointment isn't until April. Sigh! That's a long wait.

    Sorry for the long post! I look forward to getting to know all of you.

    Michelle

    Thank you for posting about your health and scoliosis issues. I am so sorry that you have constant nerve pain. I do too, and for the life of me, couldn't go on like this for long. I hope that you get all the help that you need. I'll keep you in my prayers.

  14. #29
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
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    Michelle, If you ever just want to talk, send me a PM and I will send you my phone number and email. I am on the forum irregularly. I am still dealing with some back problems, but such is life.
    Take care,
    Susan
    Last edited by susancook; 02-17-2017 at 05:39 PM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  15. #30
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by diznee25 View Post
    Instead my therapist did manual decompression on my neck, and then did an electroshock thing on my shoulders and neck area to loosen up the muscles.
    Michelle, how is this? What do you think?

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