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Dont know where to start

2

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  • 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

  • Well I met with the surgeon again, he stated that surgery was the next step if that's what I thought I wanted.  I am not someone who goes to the dr alot and when he said, if that's what I want,  somewhere deep inside of me screems "Elective Surgery" then when I moved I realize, it's really "Not" elective if I want to be able to walk down the street,  play with my grandbabies,  or just make my bed.  Im not blind to the fact that i will still have pain, but my hope that it's better than now. He referred me to a surgeon at the University that deals with complex spinal surgery.  Because he said the surgery involved  fusing T4 down to my tailbone. I am scheduled for a thoracic MRI tomorrow,  and am dreading it,  I get sick because it hurts to lay still on that table.   But it has to be done.   Thank you everone or really helps getting my thoughts out.   

    .

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  • Can you ask for a sedative beforehand? 

    And just breathe and try to get through it because you don’t want to have to do it again. 

    Best of luck. 

    N

  • WLLadyWLLady Ontario CanadaPosts: 1,494

    yeah i would ask the nurse/doctors to get a combo of a light sedative and pain meds before you go for the MRI-and get them to put the wedge under you knees and head and they can pack you with blankets to help support your spine.  My last MRI and my last CT before surgery i asked them to look up my previous ones and the help me out....as soon as they saw what they were dealing with i was well looked after.  and if i was feeling sick they could stop the scan for a little to help me out.  and i also had gravol to help the nausea, the moving of the table was the worst for me.  even though it's only moving about a mm at a time i could feel every movement so the pain meds really really helped. 

    yeah, these aren't elective surgeries really....if we want to keep living in some capacity....good luck today!!!!

    Kathy
    Veritas-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • Went to another appointment today for a second opinion.  Also to find out what I could do to help the pain.  It started out just like the others, with him questioning why I was there.   Dont get me wrong, he was really kind and listened.  He began with the dangers of surgery,  and that it wont get rid of all the pain, and may cause more.  I am grateful for the honesty and also the idea that he's not surgery Happy.  I totally understand  and know that surgery is a big decision and should not be taken lightly. But what frustrates me more than anything is that  every time i ask the different doctors what non sergical things I can do,  they don't have any answers. He said its a personal decision and  you will know when youve had enough.  And im thinking  REALLY... why do you think I'm here.   Its so frustrating i told the dr what I want to be able to do is to walk down the street, make my bed and play with my grandbabies without hurting every day.  He ordered a bone density scan to start with.  Guess we will go from there.

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  • Well had my Dexa scan, didnt think it would be so painful, put she was trying to position me so she could get the spine.  Ended up not happening.  But by then my back hurt bad.  She was able to get a scan of my hip and my forearm.  My question is, when I ask them what my alternatives are they cant give me any real answers. I just want to know what I can do to help this pain, aside from being on pain pills for the rest of my life.  I worry about that because of my family history of addiction.  I have seen what it has done to really mess up a family.  I may have no other choice though.  Also what is everyones thoughts on acupuncture?  Let me know what you think.  Thanks for giving me an avenue to get my thoughts out 

  • WLLadyWLLady Ontario CanadaPosts: 1,494

    i've never tried acupuncture myself, but i have a friend (2 knee replacements, 2 hips replaced, inflammatory arthritis, mostly in a wheelchair) who swears by it!  it really really helped him, and he has managed to stay off pain pills for the most part.  Like i said, i don't have any experience with it.....or even know how it's supposed to work, maybe worth a try and see....?  the way i look at it is if it doesn't help me i'm no further behind...and if it does it's a bonus! 

    i'm sorry your scan was so painful!  for me with my back i found massage helped me a lot.  it was painful at the time and that day, but then better the next....

    Kathy
    Veritas-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  •  I've tried it and it has only worked for my foot pain. It may give you temporary relief, if that is what you're after. Nothing but surgery will correct the curve, and I believe you said you were at the  60 degree mark and still progressing, is that correct?  But what are the options? They do call it an 'elective' surgery and yes, that's weird. I felt the same way. Did you already mention the Schroth PT method for scoliosis pain? I've heard good things about it, but my assumption is most of these things work if you have a much smaller curve.  At this point, especially if you are a mature adult (over 45-ish) it would seem that surgery is the only viable option. I have a history of addictive genes and behavior and I've been very careful with the pain meds. I also notice that I am not taking as many as I did before surgery.  I am coming to terms with the fact that I may still have pain, but it's less and I can walk. You should definitely explore all options before committing to surgery, so you are on the right path!!

    Take care,

    Noreen


  • Thanks for the input I really appreciate any advice that I get.  Boy it seems like I can win for losing...I received the results of my Dexa Scan and it appears that on top of everything, I have Osteopheros, I have been researching the options, and I am not sure what I can do now.  The one thing that I do not want to do is to go in and have this invasive surgery and have it not work because of my bone strength.  I have an appointment with a Neurosurgen at the University hospital.  I guess that is one of the many things I need to dicuss with him.  Oh well..Like Dori says "Just keep Swimming"  sometimes thats all we can do.  

  • for sure , keep swimming, and let us know what the neurosurgeon has to say. we are here for you, hang in there, may its not so bad that the surgery will work just fine. just write down all your question and ask lots!!

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