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Scoilosis - My Spine is Twisting and I Dont know where to start

dkolneyddkolney Posts: 13
edited 07/31/2019 - 8:47 AM in Scoliosis

I have had scoliosis for my entire life, they found it when I was a child.  I have just dealt with the pain and went on with life, but the last couple of years it is getting worse.  I cannot walk around the block without my lower back hurting.  Part of the problem is that I do not have a baseline xray of my curvature, I had a MRI in 2013, then went to Physical Therapy for 2 years, didnt help.  the last two years the pain in my back is worsening.  I had another MRI which found my curvature is now 60 degrees, and my spine is twisting.  My question is are any of the non surgical processes going to work in the long run..I have been investigating surgery but dont know where to start.  Just wanted to get some thoughts on where I can go to do research for my problem.  Thanks in advance for any suggestions you can give me.

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  • Hi DK -  welcome to this site.  There is a lot of information to be found here and many personal experiences that people are happy to share on this forum.  To read my story you can click on my name (urbmshr) above and then click on discussions.  But in a nutshell I was diagnosed with scoliosis at age 58.  Don't know the status of my spine as a child, teenager or young adult because I never had any issues.  A couple years before my diagnosis I had a spinal xray but no one seemed too alarmed by anything at that time.  Then 12 - 18 months later I had pain in my calf that got to the point I couldn't stand for more than a couple minutes.  Finally saw an orthopedic surgeon who diagnosed a fast moving curve.  To be honest I didn't research any non-surgical options.  I knew surgery was in my future and because of my age (post menopausal) and the pain I was in I knew it was going to be sooner rather than later.  So I had a 10 level fusion 3 months after diagnosis.  I think age plays a big part in deciding what to do.  You don't want to tough it out until you can't stand it anymore and then not be a good candidate for surgery because of your age.  Fusions require bone growth and that osteoporosis villain can rear its ugly head and severely limit your options.  Have you seen an orthopedic surgeon or a neurosurgeon recently?  What do they recommend?  Of course a surgeon will see most things thru a surgical correction but they should be able to give you some direction regarding likelihood of progression and possibilities of correction.  You do have an MRI from 2013 so you have some history.

  • hi my progression was slow at first at 17 it was 32 degrees and then in 40s 46 degrees, then around 55 it started to curve a lot faster and at 58 it was 60 degrees and a scond curve now at 22 degrees and wirh all kinds of twisting. I had one sublsation that looked like if it moved any more it would of cut into my spine. my surgon had been following me for over 15 yrs and said he thought it was time. so I had the fusstion from t9 to s2 with pelvic fixastion at age 58. I was in grate shape and did adv yoga. I had givin up running cuz it was just hurting too much. no I will never be what I was, and the surgery cuz a left leg weakness and foot drop. I live in far less pain now, but lost my way of life so I have mixed feeling still..

    look into shochot pt dang it need to look up spelling..there is a thread on it here..also elise browning miller yoga for scoliosis. good luck on your research..read lots of storys hear and ask lots of question.

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  • WLLadyWLLady Ontario CanadaPosts: 844
    edited 07/23/2019 - 1:08 PM

    hi dkolney!  i want to formally welcome you to the forum!!!!

    welcome to spine health

    all new members should take the system tutorial
    new member information guideline / checklist
    so much depends on what is wrong.....in my case i apparently had pre-existing scoli that i didn't know about and once my curves started moving they went fast.  facet arthritis destroyed the facet joints so i twisted badly too and from the time they figured out what was causing my left leg numbness and dysfunction i was 69 degrees lateral with almost 90 twisting between l1 and l5.  when i finally made it to the or i was 110 degrees between l1 and l3 and twisted almost 120 degrees rotational.  lots of nerve damage....and my spinal cord was being compressed.  i honestly didn't have time to try much in the way of non-surgical things, because it was a little over a year from diagnosis to be pushed up in the queue for surgery as fast as my surgeon could....i do have permanent nerve damage, and i'm a little slow in the learning department for not pushing too hard post surgery but i did get most of my life back, so i'm pretty happy with it. 

    i hope the forum helps, and there's lots of information on the different surgical procedures on the main site....so please take a look around.  but remember that the best source of information on what is right for your specific case is your surgeon, and your doctors, and you....being informed is extremely important, once you go through a surgery for spine issues, you never really are back to the same again....but in my case it sure beat the alternative!!!!
  • Thanks everyone for your input, it gives me hope in knowing I am not alone, Yes, urbmshr my dr referred me to a back dr for pain management, he seen my xrays and referred me to a neurosurgen, I went to the visit, didnt get alot of information from him, I kept asking what is my next step, he really didnt want to answer he said you need to go home and talk to your family and really think about it. Then he asked me what I wanted to accomplish, I told him I want to walk down the street without hurting, I want to pick up my grandbabies and be able to do day to day activities without having to stop because i hurt,  He then scheduled a Scoliosis Xray, and scheduled me for another appt in two weeks.  I  had the xray , which from what the results say...  Im  a Pretzel...  I am scheduling an appointment for a second opinion with another dr.

  • WLLadyWLLady Ontario CanadaPosts: 844

    being informed is definitely a major part of the challenge!  i'm glad you going for a second opinion.....in my opinion a doctor should be up front about the risks etc of whatever surgery they think you need, and upfront with the information.   i think a huge question i should have asked myself before my surgery was "am i willing to have pain for the rest of my life?"  because this surgery doesn't STOP the pain, but in the case of my nerve pain it took my pain from living at 8 constantly to living at a 3-4 constantly.  it's a huge relief for me.  but i wouldn't say that these surgeries will make someone pain free for the rest of their lives.  for me, if my pain wasn't unbearable and never quit, i would be very upset at my pain levels today....if i had gone into surgery with no pain then i would have more pain after my surgery....but since i had so much pain before i can live with this level of pain now quite well.....

    having scoli fix is a huge surgery, and will change how you do things.  but if you are problem solver, and willing to find new ways to do things (like using a reaching aid for picking things up; or learning to bring your foot up to tie your shoe or put on your sock etc; turning instead of twisting) then pretty much anything i've tried i can do.....of course there are things i would NOT do willingly - like running - quite yet...maybe someday....but not yet.  so please, make sure the doctors are clear about the risks, the surgery, the recovery-and people here on the forum can also fill you in.....

    my entire story is in the my scoliosis threads, parts 1 2 3 and 4.....everything from my diagnosis to today....my almost 3 year journey so far....

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  • WLLady - 3 years??  I think almost 2, right?  I follow your journey pretty closely and for a minute I thought I lost a year.  Seems the level of pain that still remains after these surgeries is directly related to possible nerve damage prior to the surgery.  My surgery was 3 months after diagnosis and the curve progressed so fast that I don't think I had any permanent or even significant nerve damage.  In my mind anyway I think things were still pretty fluid and flexible.  I was bending over to place my palms flat on the floor several times a day to relieve the pain in my calf.  I think that movement opened up the vertebrae and freed up the nerves being impinged upon.  When I stood back up after doing that I could feel shifting and jerking in my lumbar area along with clicking sounds.  That's why I think things were still fairly flexible and not in a fixed and damaging position.  That's my theory anyway <lol>. 

  • WLLadyWLLady Ontario CanadaPosts: 844

    LOL.  it was about a year from the first surgeon's appointment to my surgery. and i'm almost 2 years post surgery now.   so.....i did post first about sept 2016....so posting about 2 years now....but my story in there covers a lot of the year prior to surgery as well....but i found the forum a little over 2 years ago.  so nope, you didn't lose a year! (yay!)

    i'm sure that's right-pain after related to nerve damage......i have pain, and i have nerve damage for sure at 5 levels.  but i can also tell you that nerves reconnecting and healing hurt quite a bit too!  and nerves that were damaged and supply muscles, when they heal the muscles freak out and can't figure out what's talking to them again so they spasm......and muscles spasms aren't fun.  sigh. 

  • Hi dkolney:

    Welcome to the forum! You asked if any of the non-surgical options would help and I personally feel the answer is no. I think most people here, who eventually came to surgery, took very similar paths which included exercise, yoga, PT, shots, you name it. We've all done our due diligence! The thing is with age the curves seem to advance and once you're at that tipping point (mine were 55 and 45 when I had surgery) there appears to be little to no choice in the matter. I was told that I could certainly wait to have surgery and my curves may only increase a couple of degrees a year, but even at that rate I was in pain just like you. I remember clearly New Year's Eve 2016 I realized I wasn't able to walk long enough to enjoy an evening out. I knew I had no options aside from surgery. As the other forum buddies have already pointed out, the pain doesn't go away. In fact I'm into my second year of recovery due to a recent revision surgery. I have not ever regretted the surgeries. I am not ecstatic with my new body. I'm often pissy with the fact that I can't reach things or bend or play tennis or ski (yet); I'll never do a flip off my diving board again. BUT, I truly did not see another choice and so I just look ahead with hope everyday that I will improve pain-wise and mentally.

    And I had a similarly strange experience with my surgeon too. I first visited him in my 40's and although he thought I should have surgery he never really made it clear. When I returned in my 50's I had to ask a very direct question as to whether he recommended surgery or not. He said 'even if the curves were not progressing, I would recommend surgery'. The funny thing is I think we go in for these appointments and the surgeons just assume that we are there to discuss surgery! It doesn't seem to enter their minds that they may need to advise us a bit! So I wonder if your surgeon was sending you home to speak with your family because the surgery was such a big deal and he wanted everyone on board. They are a strange breed, but thank goodness we have them.

    I hope you are able to make a decision soon. And whatever you decide, best of luck!!

    Noreen

  • Thank you everone for your input, I have a followup appointment this next week, I called and changed the appointment because I need to get some answers.  I have also contacted another doctor for a second opinion, faxed them over 21 pages of reports.  They stated they will contact me when the dr reviews them.  One day at a time right now...All of this information really has been a big help..

  • Hi dkolney,

    My story is similar to others who commented. I just went thru a 14 level fusion this summer BEFORE it was to the point of being disabled. I am 58 years old and had a 53 degree curve, my rib cage had started to rotate and that plus too much time on my feet had started to cause constant pain.

    Before I had my surgery, my doctor and I had been discussing this for 5 years. He left it up to me to decide "The right time". He never pushed me, and wouldn't tell me when to have the surgery either. Funny, I almost wanted him to tell me to do it, because I didn't want to decide. He said I would know when the time was right. I often told people it would have been easier if it had been an emergency, then I wouldn't have to decide on my own.

    Anyway, about 4 years ago, while speaking to my doctor about deciding the right time, I asked him "If I was your wife, what would you advise me to do?" He said " I'd tell you to wait". I knew he was the right doctor for me at that point.

    My advice is ask A LOT of questions of your doctor, of their nurse and on this forum. Ask your doctor for another of their patients for their experience. You will read some things on this form that will make you sad, scared, laugh and cry. READ THEM ALL. No question is off limits here. I've asked questions about what clothes to take to rehab, how sex is after recovery, how to properly wipe yourself and more! We are forever "fused" together as a family. (Pun intended)

    Take care and keep us posted.

    Julie

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