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question about revision surgery/new member

Hello,

I am 51 years old and was diagnosed with scoliosis at the age of 1.  I wore a back brace for many years while the doctors waited for me to grow enough to perform surgery.  I do not remember the exact degree of the curve prior to surgery but my mother said it was well over 100 degrees.  At the age of 9 I had my first Harrington Rod surgery.  It corrected it down to around 60 degrees.  However, the fusion didn't hold and subsequently broke the rod so had the same surgery again at the age of 10.  The second surgery was successful and three years later I had another surgery where they went in and shaved off some of the rib hump so the hump on my back wouldn't be quite so sharp.  Fast forward about 38 years I could feel something had shifted and I was starting to experience shortness of breath.  I had always had some back pain to one degree or another my whole life and at that time wasn't experiencing anything more significant to what the pain had always been.  Just was getting fatigued quicker than before.  So in 2016 I went to a scoliosis specialist and he said I would need to have surgery again and he called it collapsing spine syndrome with my spine collapsing above and below the Harrington rod.  I also saw a pulmonologist then and they said my lungs were functioning at 60%.  The pulmonologist said I would "have" to have the surgery if my lungs got down to functioning at 50%.  I had another breathing test a couple months ago and it was still at 60%.  So at least thankfully that is stable for now.  

I don't have the info stating which of my vertebrae are fused.  After reading some of the posts from members I can see I guess I should know that.  The only info I have from 2016 says the curve was a 68 degree thoracolumbar curve convex with a single left scoliosis rod spanning the thoracic and lumbar spine, significant dextroscoliosis.   I haven't been back to the back doctor since 2017 at which time it was unchanged.  

I had decided I would hold off doing any surgery until I absolutely had to.  Kinda was hoping it would just stabilize and never have to have it.  The thought of them actually having to break my spine in order to correct it sounds pretty darn scary to me.  All I can think about is what if it makes me worse than I am right now.  So, anyway, the last three weeks I have been experiencing a constant dull pain in the middle/upper right part of my back where my scoliosis curve is. Lying down nor sitting helps.  I can feel it going down my right arm as well.  It's not a sharp pain like I pulled anything; just a constant throbbing.  Kinda hoping it will just go away.  The only way I get some relief from it is if I am constantly moving and walking but can't do that 24/7.   

My question is did some of you get any second opinions before going through with surgery?  Am I crazy to think and hope that they could ever find an easier way in the future to fix this instead of such a major surgery?  

Thank you for reading my post.  I know I jumped around a lot so hopefully it all makes some sense.  

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1

Comments

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

    Hi Creekmom!

    Welcome to the forum! Welcome to Veritas Health Forum

    i took the liberty and deleted your duplicate post-no worries...it happens from time to time! 

    your post makes perfect sense!  i'm so sorry you have had to deal with these problems.  I would venture to say that 30+ years without too many problems after such a huge surgery is one success story i hope i can have the same!  it would likely help you if you found out where you are fused to/from.  if the top of your fusion is mid-thoracic and now is giving up and eroding that could explain the breathing difficulties.  I ended up fused from T10 through S2 and with my 110 degrees, mostly below my ribs i could still tell in my breathing!  and it was only my bottom 3 ribs moving.  would they actually break through your fusion to straighten it more?  or would they fix the top and bottom by essentially extending the fusion?  with your harrington rods are you only screwed in at the top and bottom level?  or do you have screws at each level?  my surgeon told me they used to just secure the ends, but now it's much more common to anchor every vertebra to the rods and use 2 rods for stability. 

    so i didn't have the option of a second opinion with my health care system here in canada-but i trusted my surgeon....and didn't really see the need for a second opinion.  i knew i could not live with where i was obviously headed.....

    can you talk to your doctor about seeing maybe if something like physiotherapy could help at least before you absolutely need surgery?  do you know if it's nerve pain you are feeling?  my nerve pain started as a dull toothache kind of pain that just never quit...until my spine fell and pinched things, and then it didn't hurt anymore (because the nerve stopped working)...the less pain was nice for me, but not for the nerves!  now that things are healing after surgery that nerve pain burns like crazy some times....

    i hope you can discuss with your doctor....and get that pain looked at and make sure that the nerves aren't being damaged.  it's perfectly fine to find it a scary surgery-in fact i would be worried if anyone didn't! i don't know about easier ways to fix these problems.....your doctors might know of other options.  anyways, i'll stop rambling now, i know there are a few other people with long fusions-i'm not much help since mine is mostly lumbar only a little thoracic....hopefully they'll stop by soon and chat.  and again, welcome to the forum!

  • Thank you for the nice welcome!  I will definitely ask about where I am fused to/from the next time I see the doctor, which probably will be sooner than later if this dull pain keeps up.  You described the pain perfectly, like a dull persistent toothache.  My Harrington rod is screwed in at just the top and bottom.  It is about 8 inches or so long.  They took bone from my hip to do the original fusion.  

    I certainly need to ask the doctor more questions for sure.    He told me that more than likely it would be a two day surgery, going in from my front one day and from the back the following day.  He would actually have to break my spine and reposition it to get me aligned.  Right now I am way off balance. He said it was a severe scoliosis with major deformity.  After he described the extensive surgery/recovery I kinda was stunned and wasn't prepared with any questions.  I will have a list next time.  

    Thank you again for responding!!

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  • memerainboltmemerainbolt IndianaPosts: 3,406

    Hello creekmom!!
    I am so sorry to hear of you going through this. Four years ago I developed idiopathic scoliosis on all 3 levels. I am not a candidate for surgery but wish I were. As far as second opinions, we had a total of 4. If you would feel more confident then yes, I would get another opinion. 

    To me, for this type of surgery, you need to have a lot of confidence in your surgeon as well as a good relationship. Make a list of questions and concerns that you have. Take someone with you if possible, 4 ears are better than 2.

    Good luck in all of this, stay positive and keep us posted on how you are doing.

  • Hi creekmom - welcome to the scoliosis section of the forum.  I am another of the long fusion cases.  Ten levels, T9 - S1, due to adult onset scoliosis.  I can understand you being 'kinda stunned' after your doctor described the extensive surgery. I always refer to it as my deer in the headlights period. I went back twice with my husband and a list of questions.  I didn't really get a second opinion because there really was only one way to correct my condition but I did talk to a second surgeon in the same office. I ultimately went with the second guy because these long fusions were kind of his specialty and I immediately felt comfortable with him.  I do remember how I felt when I heard him say (very nonchalantly I might add) we will break your bones.........blah, blah, blah.  Anyways, I was 58 when I was diagnosed and post menopausal so time was a factor to consider. I didn't want to wait until I was in so much pain that I couldn't function but then be too old to be a good candidate for surgery.  Easy decision for me, my curve was progressing fast, my pain was getting worse, I wasn't getting any younger.  Two and a half years later here I am just living my life.

  • Thank y'all very much for the responses.  I will definitely have a lot of questions and will be taking my husband with me next time.  I was not too impressed with the doctor's bedside manner the two times I have been there so will see what my husband thinks about him when he meets him.  Kinda torn between I know you definitely want a good doctor that knows what he is doing, but I'm wondering how important it is that you actually like the doctor and feel comfortable with him plus feel that he cares just a little bit about the patient.  Not wanting to be treated like a baby, but at least think they care somewhat.  Wondering how important it is to have both qualities.  

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  • urbmshruurbmshr Posts: 169
    edited 02/07/2019 - 3:07 PM

    Gosh creekmom it seems that I hear/read this quite a bit.  The part about not having a great bedside manner, that is.  When I think back to my thoughts on this at the time I was going through it, I don't think my surgeon had a great bedside manner.  But everybody's definition of that is probably different.  My guy was pretty much all business, didn't go into much detail about the procedure unless I asked and then he told me anything I wanted to know (without sugar coating it).  The trouble is you don't really know what you don't know and so you may not know what to ask.  For me, I didn't want to know all the 'gory details' before my surgery because I did not want them to occupy my thoughts.  And trust me I love the 'gory details' of things like this and I am not squeamish by any means.  But I did get a feeling of competence, knowledge, skill and even excitement at being able to provide this type of surgery when it is needed.  Now after the surgery that all changed and I wanted to hear about all the ins and outs of everything - haha.  I guess the surgeons also have to consider that they are dealing with many patients and many different personality types.  Not everyone wants to be treated the same way and some may even be insulted if they are 'molly coddled'.  I'm a just the facts kind of person so what some may see as a lack of bedside manner probably appeals to me more than it may to others.  Surgeons see these cases everyday and to them it is probably just  - here's a problem, here's how you fix it, let's GO! My kind of guy actually :-)

  • WLLadyWLLady Ontario CanadaPosts: 844

    i have to second the take your husband!  LOL  mine came with me for a couple of the appointments and at the one appointment i asked "what do you need to do" and then when he started to describe the surgery my brain just went for a hike...i don't remember most of the appointment....i remember him looking at me and saying "it's okay to be scared, and it's your decision" and then i realized i was listening but not hearing anything LOL.  guess i had the deer in the headlight look-and i honestly felt like running down the hallway and never going back (except i couldn't run anywhere i could barely walk at that point!).  my surgeon visited me every day for the 5 days i was in the hospital...and was super excited about the work they managed to do!  it's weird to see someone so excited that he got me back to 4 degrees but all i could think is wow, he's in the right profession if he's that excited about this....but the bedside manner-especially after the surgery-did help me...at least i knew someone cared about me as a person and could explain what was done exactly in the surgery.

    a second set of ears and another brain to listen to what the doctor says is really important.  and writing down your questions so you don't forget to ask something (yep....guilty....i had to start writing stuff down or i would forget....).  i have to do that now, i have a followup (my 2 years post surgery) next week.  have a few things to ask about. 

  • I'm so glad I found this forum.  That "deer in the headlights" is exactly how I felt.  I remember thinking to myself there is no way I will ever do that.  I wasn't hurting too much at the time but am rethinking it all now.  Guess I will make an appointment and go from there.  Have to admit....I wish I was already on the other side if it and done with it.  Glad y'all had very good outcomes and that is very encouraging to me for sure.  WLLady, I hope your two year post op visit goes really well  this coming week! I'll keep y'all posted..

  • WLLadyWLLady Ontario CanadaPosts: 844

    thanks! yes please keep us posted!! we are all happy to help any way we can.  for me personally i am glad i am on this side of it now...still slowly healing....but to go back to the pain before i had surgery no thanks!!

  • I clearly remember saying to my husband that I was looking forward to the pain that comes on the other side. Because that will be temporary.

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