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Just Checking In

Hi scoli group:

It's March and I feel like it's the beginning of the year. What happened to 2019?!

I just wanted to say I think about this group a lot, but since I'm usually on my tiny iphone, I don't have the keyboard to type! I am doing better than I was at the end of 2018. And get this: my lack of luck with acupuncture? Well that's changed. I have been seeing a neighbor who is adjusting my alignment mostly with cupping. The main result of scoliosis surgery, namely a straight spine, does so much, but not everything. I still have such a misaligned body. And no surprise after 35 years of walking around with a crooked, rotated spine.  I've done PT, but it wasn't helping the joints that were still out of whack, if anything I was just tightening muscles that were pulling on misaligned body parts! I have seen my primary care, a podiatrist, a neurologist, my surgeon and his assistants. Oh and a physiatrist...and basically left to feel like I'm imagining most of these issues. My nerve pain, foot pain, knee and ankle pain. etc etc. I even had a bruise on the ankle that came and went, but no specialist believed it was in his or her field.

I do wish that after these lengthy, painful and life altering surgeries, someone would sit down and discuss the changes your body and mind face in areas that are not the spine.  I have often thought that a gait specialist (maybe someone at NASA?!) would come in handy.

So how is everyone?!!!

Noreen

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1

Comments

  • hi Noreen

    I am doing good, getting stronger each day, just minor set back from time to time because I over do it...lol. I so agree with you. I wished someone would sit down and explain why strage things are felt or happening to other part of our body because of this surgrey. it would be so nice to have them say this is normal, this is why, this is what you can do to help it..just not knowing and getting the run around fron docs is madding. I am right there with ya. my understanding about my gait is two fold..one I have pelvic fixsation so that area dose not move the same..part of my range of mostion was takin from me..the other part is the muscles and tendon may be pulling so the the hip is off cuaseing one leg to be a little longer then the other, but none of my doc's feel its worth investagaing. my pt specialist said I do have a left hip weakness that is part of the problem and as far as the leg lengths, its so close hard to tell with out e-rays, she feels I just need to give my body more time to heal. happy to hear your doing better, I understand typing on I phone is hard but love to hear from you now and then...hang in there

  • WLLadyWLLady Ontario CanadaPosts: 1,466

    hi Noreen! 

    Yep, i only type when i have my computer, otherwise the typo (bad at the best of times) are way way worse!  Doing well, still struggling with some rib pain yet. mostly if i am push/pulling-like vaccuming or doing dishes in the sink or raking or shovelling or...well....amazing how much one does that motion through the day!  have to start making some phone calls because i think my trigger point injections have fallen through the cracks somewhere-been a month with no appointment time sent to me.  I'm a little tired also of the changes happening elsewhere-my left hip is still a problem child.  and the top of my fusion is my weak spot now for walking distance.  where i was fused is feeling quite good most of the time-like 99% of the time.  i had no idea how much weather changes would bother me though, which is a little annoying given where i live with the up and down freeze/thaw cycles that seem endemic to SW ontario now.  like robyn the pelvic fixation gets me sometimes.  my walking i think will never be "normal".  it's a little robotic, and penguin like swaying side to side every step.  and i can't get a full length stride anymore.  tying my shoes and shaving....ha ha....it's a bit challenging i must admit.  but on the whole way better than before surgery.  i am a little scared for the future-what will i be able to do in 10 or 15 years, or even later this year!  my surgeon says i'm still healing after 2+ years.  and i believe it.  but i'm ready to BE healed if that makes sense.....getting used to the idea that my range of motion and abilities will be forever changed.....so lately the emotional rollercoaster of this recovery i have found is a little bit harder than for the early days for me.  the improvements just aren't coming....few and very far between.  but stronger every week i think....and i think now it's my duty to help people coming into this now to understand that it's not "just" their spines being changed! it's their entire lives....and i do not think that the doctors, at least those that haven't been through this, can relay that.  i'm also coming to accept that some day i may actually end up more bionic than not, with my left hip degenerating, and my neck too....i am not good at learning how to be "nice" to myself when i've just been a do-er all my life. 

    glad to hear you are doing okay!  and you too robyn!!!!


    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. 

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  • RangerRRanger on da rangePosts: 1,031

    I can relate to WLLady's comments, before I entered this journey several years ago until now, almost 2 years post-op of my latest major fusion it has changed me. And I feel not totally for the better. Yes, I am still fairly active, independent, and mobile. I am thankful and appreciative of that. But the inability to do some things that used to be easy, unforeseen life changing events, and the rapid progression of the underlying disease that just keeps eating away definitely has a way of wreaking havoc on me mentally.

    I try my hardest to put on my game face every single day, I rarely ever complain or hint of my discomfort. I remember the past of my stays in the medical centers when I walked around trying to rehabilitate and seeing how much worse others had (have) it than myself.

    Now I am at a point where I need to decide which part of my body requires attention first. I feel overwhelmed, like I'm behind the eight ball and everything is failing faster than I can have it repaired which actually is very accurate. I've been able to maintain but quite honestly I've considered to get professional help because I question my ability to make the right decision. And besides a few other warrior's on this site, nobody can relate.

    Ugh.... I'll get through this. Mom never said it was gonna be easy.

    Take care you all!

  • Wow! So great to hear from all of you. And I can relate to so many things...

    Robyn, I honestly think the robot walk is improving so much with the cupping. I have the pelvic fixation (now only on one side after the revision surgery...I was bleeding too much for him to re-fix it!) and I feel less and less robotic each time my neighbor adjusts my pelvic area. So, like I said, I'm a surprised convert to the acupuncture cupping world.

    Kathy: I had that rib pain only in the beginning and it was the worst of all. I'm sorry you still have to deal with it. I wonder if it has to do with the degree of the curve?

    And Ranger: Yes, yes, the surgeries have changed me in so many ways. I am not as active as I was...no more cross fit for this gal and I am constantly feeling rising anger because I try to sit up or reach for a blanket and just can't get there. Little things like even trying to get the laundry out of the washer or close the car door! I apologize for not recalling your underlying disease...I'll blame the gabapentin cuz I can. Is it DDD? I am not an over achiever like you lot. I am an average achiever and am very hard on myself. I will never feel good enough. And this experience hasn't helped. I often times try to convince myself that I'm suffering on purpose so I don't have to work as much. And the thing is I quite like what I do! And I love my family and I DO work hard for them. So WTF?!! I feel emotionally messed up. I told my husband I have diagnosed myself (thank you very much) with PTSD after this last surgery. I have total panicked feelings mostly around bed time. I really believe I was struggling to get off that damn table! And well, afterall, my body DID feel under attack!

    I read an article which talked about the lack of emotional care when it comes to these surgeries. Apparently, spine surgery is the worst. It just affects people in such a tough way emotionally. And I don't know whether or not this is true (science lady...weigh in here...) but the article said that the brain processes emotional pain in the same area as physical pain. It also said that we form these new neural pathways responding to pain and even (sometimes) when the injury causing the pain is healed, we can still feel pain; chronic pain. So...can it be that I am just so used to being in pain that I continue being in pain?

    RE: professional help. I see my psychiatrist next week and am going to tell her that I am just not doing well. We need to work on some kind of nerve pain/anxiety/depression cocktail here!!

    Ahhh so good to read and unload. And I am sending healing vibes to all of you...

    N

  • Noreen, a couple of weeks ago I posted a topic of pre surgical counseling. After reading a study done by one of the country’s leading Medical clinics ( apologize but we can’t use the name ) but in this study, It was determined that approximately 80% of individuals who go through spinal surgery end up in a deep depression. God knows I surely did lol. Like everyone here, I never expected to be where I am now. I can tell you how much I lost, but I can also tell you what I’ve gained from this experience! And believe it or not some of it has been good! I’ve accepted the facts and actually look at the smallest things and see where all the blessings are.Yes , I live in pain everyday, ( Gods way of telling me I’m still alive lol ) I’ve met some great people here on this site! Another blessing! I went to counciling for a 6 week term, 1 hour a week for 6 weeks and came to the conclusion that the counciler was crazier then I was! But was great entertainment! I truly believe that anyone who’s fixing to have spinal surgery have presurgical counciling! Instead of the shock of how are lives will change! Hang in there and know we’re all here for you.....David

    DavidG

    Veritas-Health Forum Moderator

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  • Thanks David!!

    I was in that optimistic mode after the first surgery but this second one has just sent me down! I have not read that study but saw one that said 20% of spinal surgery patients get depressed. I'm sure it's higher.

    What have you gained from this experience? I'm not sure I can see much of that right now. Not totally true. My spine is not collapsing. But for the first time I've thought maybe it wasn't worth it. I know truly there wasn't a choice, but I've had my neighbor/acupuncturist whispering in my ear that if only he'd met me before the surgery he's sure he could've helped. I know in my gut that just isn't true, but of course it's sticking with me. Other than the collapsing bit, I can't for the life of me think of what I've gained. I'm not more patient, I'm not the same person. I'm kind of irritated all the time and a little snappy. I want to be a great mom and wife and also be a good designer (that's what I do) but I am simply not that kind of person. I can't do all three things well! I spend much of my time pretending to be happy and supportive and it's just draining. I want to hide in my house!!

    I think most people go into counseling because they are broken! I've had great help from therapists in the past but kind of feel like I know the process and steps and well, I'm just not willing to use them somehow.

    Also, agreed that this site has helped tremendously!! People are trying so hard to make it all work and this is a place to vent.

    Noreen

  • dilaurodilauro ConnecticutPosts: 13,427

    From all my years dealing with personal spinal and joint surgeries and being an administrator for Spine-Health for over 12 years now, the one thing I know is that with Spinal Surgery , Depression can easily follow.

    I think anyone facing surgery for the first time really does not know what to expect.  They probably have had their life sort of put into a jumble just from the spinal problem.  They are hoping for the best after surgery, but those who have experienced spinal surgery understand the good and the bad that can follow.

    I also believe that patients who have had more than one surgery can easily fall into some form of depression.   Then as that continues, its easier and easier to get depressed.   I started back in 1978 and some 11 spinal and 4 joint surgeries, along with Quadruple bypass heart surgery and an upcoming knee replacement, each time I just sigh and say "Again!"

    Its not only the impact to me, but to my family.  My wife has basically been my care taker since 1978.  So while I may be dealing with the physical pain, the burden and extra pain for the caretaker can be even worse.

    Many people feel stoic when it comes to counseling.  Some feel thats for the weak.  Well, when we have physical problems, we go to doctors to seek help, get medication in order to feel better.  Why not for our emotions also?   Its nothing about being weak, its about adjusting to changes in life.   This may not have been what you planned 10 years ago, but here it is now.

    DavidG is a perfect example of what spinal surgery can do.  I am sure he never wanted it, never though it was going to happen, but it did and it did have an impact.   He remained strong and looked at the positive side of everything.   His attitude towards all of this has been such a great help to all members on Spine-Health

    Here are a set of medical articles, that I always suggest for people to read  All about Depression and Copying

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • RangerRRanger on da rangePosts: 1,031

    Noreen, Like you, and others that posted here, this emotional roller coaster is inevitable. I told myself after my first two spine surgeries that I would never let myself to sink to the lows I had experienced. Fusion #3 was a lengthy cervical fusion and I did pretty darn good overall. Fusion #4 I thought I had a good grip on things but I've had some moments and last year with the loss of two people that were so very close to me, I really struggled. I am so thankful for what I still have and what I can accomplish. I also realize I am getting older and if I compare myself to others my age and many younger, I guess I still do pretty good. But their is those times when I'll get into a funk, and the little things can really upset my day.

    Without a doubt this site and the people like you, Noreen, robyn, Kathy, Ronnie, DavidG, Sandra, and I can go on forever, certainly make this journey a lot easier and most often make me smile after reading posts here.

    Crossfit girl, ehhh Noreen? Just look back and remember what you accomplished, that's impressive! btw noreen, my underlying disease that keeps haunting me is a very aggressive fast moving osteoarthritis. I have to remind myself after I get one part of me fixed, it's going to eventually wreck another part of me.

  • Ah thanks guys! I’m in New York for a family memorial and I’m just angry and defeated at how much LESS I can do as a traveler these days. I absolutely understand that life isn’t fair and we are lucky to have these bodies to carry us through and blah blah blah. But inside I’m remembering being here in my twenties and oh how wonderful that body felt! 

    Ron: every time I feel sorry for myself I read a post like yours and think ‘geez girl, get over yourself, so many people have it worse’ and the thought of 11 spine surgeries plus others AND heart surgery too. I’m very grateful that you and this site exist. I am prone to self blame. For everything. So when I think I’m overreacting or even creating pain or symptoms that don’t exist, I find countless similar experiences  on these  forums. Reminds me that when I am in a state of depression, I think wrong. Just flat out wrong. My mom used to say ‘we all have our cross to bear’ and although I am not religious, I do take that saying in and consider the fact that others also have pain beyond my comprehension. And struggles I’ve never faced. 

    Ranger: I am sorry that you’ve had to face four surgeries, personal losses and a degenerative disease. I wish there was a way out of pain. I might try therapy or meditate more. Physically calming myself helps. But depression is so selfish and all consuming. With me, there’s a point at which I can move and it’s just slightly above the point where I can do nothing but hide!! I think I’m no longer drowning so there’s that. 

    Thanks again for the words. 

    Noreen

  • dilaurodilauro ConnecticutPosts: 13,427

    Noreen,

    Keeping that positive attitude will definitely benefit you

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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