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  • I myself have wondered when reading some posts, but then I remind myself that my own journey has not gone the way I planned it...
    As a currently frustrated control freak :) I look at folks words and feel their frustration.
    I did my best to postpone surgery as long as possible. I had a cervical fusion 18 yrs ago and fought the pain and limitations with all the tools for the last few years.
    Then I did go in and see the ns who promptly told me that I needed both neck and lumbar fusion.. blew me away, yes second opinion, but this was what had to happen.
    I still thought no prob, they will do both (this year) and I will heal fine.. famous last words..

    so, I now am working thru the rest of the probs that haven't gone away and find myself in the doc offices having them tell me that they can do other surgeries, which I am still avoiding like the plague!
    so far, injections in both si joints and shots in shoulder for pain from advanced arthritis and some tears in the rotator cuff.. who knew..

    so, though I will continue to cock my head to the side and wonder I will give the benefit of the doubt and my best support to all in their personal battles :)

    thank you all for the support I have received!
  • Being in the medical field we see this type of behavior all the time and joke about it. When we are in need of help we don't want to be "that patient" but the pain can make you do crazy things for any hope at all. Funny how creatures are . I think if we can practice sadistic behavior and learn to love the pain then maybe this life would be fun! Let me bend over and spasm ...... Ahhhhhh..... Feels so good!" lol. Seriously though we have to honestly weigh both options..... Are we in truly of need or are we nuts? My nuts hurt all day and mostly my increases in pain are because i push myself to do things because I refuse to sit and accept disability .I am impaired ,not disabled despite my permanent parking tag says. I only use it rarely , I cried when he gave it to me. And Alex , before you chime in , my nuts are rhetorical , not a hermaphrodite ! Lol. I love your posts btw, always a feel good read. Whoever is considering surgery should make a list and have someone else read it and try to give you their opinion if your way to eager sounding and why? Just another perspective.
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  • It is a very interesting topic Ron.
    I am one of the fairly new spine/neck soldiers' and I will be honest, IF the dr said he could perform a suregry and it would help me..even 30% I would be very happy. Though I would research the heck out of it and him and pray for the right answer, know what I mean?
    Over the past 3 years I NEVER in my lifetime imagined pain like this. How ungrateful I was prior to this! Simple things we all took for granted are gone.
    At this point, they say "it" is inoperable at the moment but in 10 years I will need one. (huh?) It's all so confusing and the Canadian health care system seems to keep failing me.
    I think it would be very innappropraite and questionable IF someone who had surgery and keep insisting on it. It sounds bordeline crazy (I hate using that word but the topamax grabs all the right weaning off and going back to neurontin as I type.. THAT is another CRAZY story)
    Am I a bad person if the neurosurgeon that I have been waiting almost 2 full years to see says on Jan 4.."I am sure we can eliminate some of your pain and restore some mobility and freedom to you"..I think I would kiss him. At this point all I do is cry.
    (I couldn't help feeling that someone up above posted about people having meltdowns comng on here..was that at me? A lot of the times I just read posts and feel too new and definately NOT qualified to respond, so I apologise if I am that person who cries to you guys :('s just a godsend for me to have a community where people DO understand)
    Enough rambling..sorry Ron.
    Surgery is a very BIG decision and it could even be the last decision you make so it should be done in an educated fashion I believe. Not hastily.
  • To this day i refuse to get my handicap sticker or plates, I know i would have no problem in geting it, But for now as long as i can still walk from the parking lot in to a store without having to park in a disabled parking spot i will continue to do so,

    Some days thats about the only exercise i get is walking from the farther point of the parking lot in to the store,

    I hate the word disabled, Just because some of us cant stay on our feet for too long and hurt most of the time makes us more inabled then disabled.

    I had many fights with my dad when he parked in handicap parking. He had handicap sticker afer his liver transplant but i always told him your legs still work so dont park here,

    Ok i guess i am also off topic here from having the need for surgery that might not be needed, But i think if anyone needs to have surgery just because they feel they need 1 and drs for the most part dont agree then that person simply wants to gamble with there own life and future,

    I needed the surgery and i wish i never had it because it made me worse. So you can imagine what surgery can do with a person who did not realy need it, The life time of complications and life time of treatments for attention is just not worth it,

    There are other ways of geting attention and sympathy in life, Someone complaining about every small medical issue in there life and blowing it up in to something its not is another illness on its own,

    We see old people a lot of times talk about there every medical issues and what medications they take and when which of course is all day every day and we get frustrated listening to it.

    We realise they dont know any beter and they seek the attention sometimes to the point where it can suck the life out of others around them,

    This is the same reason even with our condition people can get wore out listening if we do too much complaining to them, Even if they understand ,how much can they listen to the same old story before it becomes ok enough,

    We all know some family member or another who can talk about there problems and medical issues all day and they cant focus on anything outside of that, You go visit them and you are mentaly drained to the point if you had to listen to it for another minute you want to hang yourself while they complaining,

    Thank god you are able to say good bye and leave and go home to deal with your own personal issues,

    Do we want to become like them? I know i dont, Just because i am injured dont mean i cant think of other things in life then myself and my condition, Talking about my pain dont help me put it behind me,

    Its good to know others understand to some point and once in a while might help to talk about it, But talking too much about it aint going to fix it and aint going to help,

    Sorry Ron i know i got off the topic myself. But not realy sure what more can be stressed about anyone who might not realy need surgery and they want it anyways,
    Nobody in the clear mind wants to go under the knife, And if they are not in a clear mental state then no mater what is said will change that anyways,

    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • I had to get my gimpy tag for school. Campus is on alot of hills and I had to park over a mile away sometimes so to be able to use staff parking that's closer to my classes the school requires a gimpy tag. Sucks , i have only used it at a store when my leg was dragging and I was pregnant.
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  • I had to get my gimpy tag for school. Campus is on alot of hills and I had to park over a mile away sometimes so to be able to use staff parking that's closer to my classes the school requires a gimpy tag. Sucks , i have only used it at a store when my leg was dragging and I was pregnant.
  • If I could have seen the future, I would not have it.

    I wander if I am one of those persons that in an unconscious way looked for the surgery. I really thought it would fix me, but at the same time I thought it would not. It was as if I had to opposing forces with me. One that wanted to treat myself in the more conservative way and one that wanted to end up with the drama and the pain. And now I found myself in a bigger hole.

    My fisiatrist told me wow! you can see that herniated disc from an airplane... I started crying, I remember all the horror stories of a dad with stenosis and with constant pain. A dad joking that just when he finally could not move he would have surgery. A dad that was angry because of pain but continue with his life, working and refusing to be call disable.

    I also had an aunt that was operated from the cervicals, and they told me she was always in pain. I came back from NY with this weird pain in the neck, I call my mom to look for me at the airport, and she told me your aunt just died. She died after her second surgery, she was a diabetic. So I had an MRI for the weird pain and the fisiatrist sent me to the same neurosurgeon that operated my aunt because he is one of the best. He told me that I did not have the symptoms, but I had to be very careful with everything I did. So I saw my dreams melting down. He told me he would see me in a month.

    When I spoke with my neurologist that was my highschool best friend she told me here surgeons operate to quickly, that is my opinion. So I got some relief, she told me the body compensates and decompensates... she told me if you go to a surgeon saying that you are bad he would probably suggest operation.

    When I went back to the surgeon he saw my reflexes in 2 and huffman and he said that he would operate in my case. He ask me if could button my shirt, I said yes... but he said I would operate to the spinal cord would not be compromised. I was scared I decided to do other stuff and when I went back he said all my symptoms were BETTER, that he would see me in six month!!!!!!!!!!!!!!!!!

    So I went back to NY to see if I could reconcile with the love of my life, since this journey made me stop a lot of things in my life, such as work and studies(things I should not have stop because my pain was more emotional and it was more the fear to end up as my dad and my aunt... yes the pain was constant and sometimes pretty bad, but I had good days, I could go into a classroom and take a class.

    In NY I hit myself on the head pretty hard and on my coxys, in NY I started feeling pain all over my body. I read books one of a surgeon another of a fisiatrist, that promoted the alternative methods, the exercise and to deal with the psychological.

    They explain that you end up in so many doctors trying to figure out that you stress out so much, your identity becomes this, and exercise could be a great option for all of those that can still do it.

    My neurologist my friend told me so many times I did not need surgery eventhough I had supposedly extremely mild myelopathy. My things did not go well with my boyfriend, WHY???? Well I stop my life to supposely get better and not to end up as my father and aunt and as the scary stories.

    So back in my homeland I face my room-mate with a depression, a room - mate I chose to live with me. Back in my homeland after four month I was with so many different pains that confuse me. So I took neurontin as my neurologist told me, and it made me worse, I started to loose sensations, my neurologist my family ask me ask me to take antidepressants and it made me worst... I was so SCARED, I thought it was the myelopathy progressing, it was the medicine.

    My neurosurgeon told me when I came back, that he would operate, but he was sincere enough to tell me that I could maybe get better without surgery. I went to a second opinion and to a surgeon that took my insurance, he told me to forget about my other symptoms, and to deal with my neck first and then to see what was left after surgery. He said I could improve an 80% I had my day for surgery, and I cancel it because I started feeling better, I think I finally was getting better from the hit to my head, the anxiety, and the side effects of medicines.

    I went to another surgeon, I think the most honest, he check my reflexes, no huffman, they were in 2. My arms were strong... He said that maybe surgery but not at that moment, he knew a case of a girl like me 35 that had a disc like mine and it resorb in time. Hopes he gave me. I started going out and enjoying life again even with some pain.

    My exboyfriend came to my homeland for christmass, I was no longer living in the house of my dreams because I was not working because of pain and depression, I thought my room-mate was having me back when I got better. My ex was back and he call me a series of time and finally I accept to see him. I got nervous... I am thinking I am so phisically and mentally messed up... I still have lost of sensations... I went to a psychiatrist because of the anxiety on december 31st he told me his wife had this surgery with my aunts surgeon and she was great, and he told me to have the surgery and he gave me ativan, ambien, aplenzin, vistaril and I took them because I wanted to sleep, maybe a quick fix. So that night I felt better and I think it was placebo it was taht finally I could sleep, and I saw him. I also stayed at my house because my room-mate let me stay there. My ex went back to his homeland and we talk about the possibility of going back together once each of us put ourselves together with our stuff.

    I ask my roomie I wanted to come back to the house after being out for two months because I had a new job, the house she lives, thanks to me, the house that was still with my name and she said NO, I let go a week ago the house, still dealing with the moving. That broke my heart, so its been a while of pain and confusion, its been a while living at grandmas and not being in my 7 year house. So I am scared, I call the honest surgeon he told me you have to much medicine.

    I was scared because I could not tip toe a test they always did, I had ataxia, I thought it was the myelopathy progressing. But why did the symptoms got better as I winned up the medicines?

    So I went to the surgeon that took my insurance because of all this symptoms and he said it could be the myelopathy, when he at first place said that he did not think I had that, when he did the reflexes and said that it seemed that the arms reflexes resolved. So I schedule surgery thinking that finally everything will be back to normal, that is what I wanted to think, I push my body into a place where I felt the desicion was the right one. I did not wanted uncertainties, and I thought at that moment it was and emergency. And I was willing to proof my friends, my family and me that I could go on with the surgery

    So I was scared to death of ending up like them and now I a scared of whom I become. I wish I would just have listen to my neurologist, and the other surgeon, and my family doctor, I wish I could have been more brave and be able to continue with my studies and my job, things I use to love very much, very much. I wish I would have listen to my father who has his spinal cord pinch, as well as my psychologist that tried to pull me out of surgery but at the end she said get it done so I will not continue saying and saying how bad I wassssss.

    If only I would have go out more the time I was getting better to ackowledge I could live like that, if only I would have waited for my anxiety to loosen up, to fix my things as the surgeon I liked told me, if only I would have listen to my father that a lot of things where mental... but I felt so confuse because of all the information I read... so there is where alexhurting says that the surgeon has a responsibility. I did study about what was going on, too much I think. I wanted to proof myself right.

    So yes I come here for sympathy because all my life change because of fear, because of circumstances, because of intelligence, because of romanticism, because of emotions, I come here because if see that maybe there is someone so scared as I was, so confused I could maybe provide a hand to see surgery as a last option.

    Iunderstand that if I had continue my life, and had done exercise, and my studies... my disc would have gotten better. Because eventhough I felt, eventhough I hit my head the MRI proof that the disc was shrinking and one of the neurosurgeon observed that with AW! And my neurologist told me I can also be hit with a car as you and end up in a wheelchair. I understand the ones that decide to have surgery because they need it want it because is a very personal decision, because it has helped a lot of others, I understand that if you have moderate myelopathy is worth it, if you can not buttom a shirt, or can not move your arms up... but men myelopathy I think it progresses very slowly for what I have seen and heard... Please I do understand all the people that have had surgeries and I respect your decisions is just that in my case I feel worst than before.

    Thanks to someone from here I am lowering my klonopin and trying to go out everyday to go back to society. I was straight As and a very outgoing person, I hug my friends all the time, help them, very creative, love to read. Now I am so scared to go out... the strangeness of my neck desconcentrate me more than how I felt before. But now there is NO surgery to be offer, just ADAPTATION and having a lot of mental WILL, to put up with all the what ifffffff... all going well and suddenly.

    Yes I became a hypochondriac, everything I felt I wanted an explanation... I was no hypochondriac before... I had lower backpain for years for herniaed disc that did not stop me.

    So I think there should be compassion for all those out there with mental health problems because not everybody has the strength that a lot of people here have. Not everybody has a family, or a faith, or a spouse, husband that supports them... Guilt is a very unhealthy situation, dreams are healthy but what happens when your body feels in a way but then realizes that things are not like that.

    Some adapt faster than others, some have motivation to move on. But what happens when your are very kinesthetic, when your job was a lot about body movement, how you reach out again when your body is still living in another space, hoping everything was just a nightmare.

    Thanks Alexhurting for your comments... yes I know wining won't get me back the story I wanted to accomplish. I want to be able to feel my skin as before and to feel the sun as normal as I felt it, not everybody has the same perceptions in life. some have gratification in watching a movie, a hug, helping others... I had a lot in giving hugs and now it hurts, it is strange... and sometimes my head is gone, is hurt, so I recognize because of herniated disc I lost it my mental health and I have 35 and have to start all over again and I wish I had had kids.

    And no wining would get me back to where I was. So I have to adapt and belief that it will be better for me. I use to love to draw and now is so strange. Who can undo this. I have to change my perspective... how do I go back to my old friends?

    There are markers in my life as friends birthdates where I see ok that year I was mess up, hey that one I was better and now in Christmas I am worst than last year when I wanted to be better for me and my friends and family. so I cocoon myself??? with light bulbs. I guess the frustration comes in thinking that I did my best to get better and it ended up like this and now I feel ridicule and sad. I am in delay because after your neursurgeon telling you I see you in six month you would think yayyyyy!!!! I proof him wrong I escape from the knife!!!

    So at the end maybe I did the surgery for LOVE thinking that will mend all the relationships, thinking my exboyfriend thought I should have it, thinking that maybe I had a poor judgement and that the other judgments where better. I lost me, I lost my focus.

    I know this is an extra long post, don't know if I will be banned or move, or I don't know.

    To Alexhurting, yes is true complaining won't get my pain away... so this is my last post as for explaining my situation and as for complaining. Thanks for all the help all of you have offered me in different ways.

    I hope that when I get back to some kind of normal I will post here some good news.

    Accupucture, meditation, yoga... tried them all before and after surgery and they transport me into a place of remembering I was trying so now is just the real life... I will continue with PT and then I need a job. A job I did not try that before surgery! Wish I can handle it!

    Hey maybe I don't fit in the wackos because I had surgeons that told me to have surgery. I really wish I was told many times not to have surgery!
  • Wow, don't know what to say except I'm sending you very big hugs right now. Several of us were made worse with surgery. We took a chance and now have to adapt and live a new normal. This takes time as it goes through the grief process . Hope you will find a way to build new dreams as you live your new life. Big hugs
  • ziga,
    I read your post over and over because it is such a heartfelt outpouring and because it touches on so many issues.

    What comes through to me loud and clear is that you were not prepared mentally for surgery and for the possible outcomes of that surgery. Also you appeared to have pursuaded yourself that the surgery was going to instantly resolve a whole lot of other stuff in your life, which was probably fantasy.

    I'm not in any way blaming YOU for this as it is clear you have been searching for help and guidance and have been confused by conflicting opinions from professionals who were very pursuasive and plausible. Not helped of course by VAST amounts of medication, which probably not only clouded your judgemenmt, but their's too.

    You had very real doubts, based on the experiences of members of your family, as to whether to have surgery at all. These doubts were never laid to rest and now come back to haunt you. This is not your fault. All of this should have been discussed with you in a rational way so that when the time came to make a decision it would be on the basis of what was best for you and nothing else.

    What a surgeon considers to be successful surgery is not always the same as the patient's expectation. Removing pain is often the major factor for us whereas stabilising a degeneration is their benchmark of success.

    I hope you are able to resolve your job, home and relationship issues soon so that you can be happy again and see things through new eyes.

    I'm not young enough to know everything - Oscar Wilde
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