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strakerstraker Posts: 1,851
edited 06/11/2012 - 8:42 AM in Chronic Pain
after a long hard look at my life and reading plenty of information and countless emails from people .i have made a big decision ..i am not going to have any more surgery on my spine .
i feel that i have recovered as well as i am ever going to from the last lot of surgery and tests and even thou i am still in pain the prospect of being made worse is not an option for me .the discography in its self can paralyse or even kill if done wrong and the operation is a massive one with a lengthy recovery time and even then there's no guarantee that i will be any better .if fact there's more of a chance that i will be worse off .two out of three fusions of this kind fail and for the other one that works they are still never far away from the pain killers .you may think that i have lost my mind .but i have not i am not a religious person but i am a spiritual one and i do believe in taking notice of what your body and mind are telling you and there is a very loud voice telling me not to go through with it {and its not just fear } i really feel that it wont work out for me and i cant afford to take that chance .i will still be part of the spine health team and will be posting things from time to time but i am going to concentrate on getting as well as i can .this i know will take me time but i will get there ......eventually
tony x


  • I know that was a hard choice to make. But that was your to make. I don't think I wouldn't done any better then you. I know there is a time in life that you got to say enough is enough. With no promise I to wouldn't have excepted another surgery. I do think you made the right choice.

  • I feel that you've made the best decision for yourself and I know how difficult it was because you along with all of us, hoped that surgery would be what would bring you much deserved relief. Even if it was a little bit. But you're absolutely right- there is too much at stake and too much risk at this time and it would be heartbreaking if the surgery disabled you further. Maybe someday down the road a nonsurgical approach will come along that will help you. Until then, keep fighting and do all you can to help yourself and we'll be with you all the way. Take care buddy >:D<
  • Tony, Only you can know what is right for you and if you've got a voice screaming NO more surgery then you're wise to heed that voice. If you went into surgery not convinced it was the right thing to do you might end up in trouble. A person has to be mentally ready to have a major surgery--the mind connection is a strong one in healing. Many of us have pushed you to give the surgery a chance and now that you know it's not right for you, we will rally behind you and give you support in your decision. Concentrate on getting as much better as you can--go with the wind, Tony! :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • Keep that spiritual side of you just so it's there when/if you need it. I don't know who or what you believe in but start with believing in yourself, have faith, and the courage to keep the faith.
    Good Luck to you, >:D<
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    You have to go with your gut feeling.And I respect that. Maybe new technology will come for you as it did for me.
    In my case, I had too much scar tissue from the past surgeries. And too much plaque. And even if they could go in from either the front or back. The likely hood of knocking off a piece of plaque or the calcification would be great. And it would give me a stroke or clot that could give me a heart attack. I was the same as you. And I said NO!
    Recently the technology came for me. A XLIF lateral approach. It had very little risk and After researching it, with a lot of help from Susan aka stockbroker, and others. My gut told me to go for it. And it has worked for me.
    I know that the technology will come for you too. And I hope it is soon my friend!
    good luck, Jim
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • dilaurodilauro ConnecticutPosts: 9,837
    when we say enough is enough.
    If you were just another spinal patient, not looking forward to another surgery, I would try to discuss the pros and cons. But you, are very educated and know so much about the spine, the treatments, the surgery, etc

    I am sure that you have wrestled back and forth with this decision... And who knows, maybe at a later point in time, you may change your mind.

    Right now, from an emotional point of view, you need to do what is best for TONY, no one else. And if that is not having another surgery, then that is the correct thing to do.

    I am tipping my hat and a glass of Dog Fish Head World Wide Stout in your direction as a gesture in wishing you the best
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • You are a really amazing person to make the decision to work with what you have and "thats OK". Only you know what is best for you and will be able to make a good life for you and your family. Recently my sugeon wrote that what may be a sucess surgically may not be of benefit day-to-day for the patient. I am learning how true that can be.Good luck to you, be proud of making such a difficult decision. Look forward to seeing your posts in the future. Hugs n' Loves- Paula
  • The decision you had to make was a very hard one, and only you could do it. I understand how you followed your feelings, and only you know what those are. My Ortho told me that surgery was a 50/50 deal. He did the surgery and that was his 50. I had to have the determination and faith and strength to do the other 50. He said that a positive attitude was most of my part. If you dont feel it is right, than you shouldnt do it, at least not now.
    I am with Ron, maybe at another date and time, it will be the right thing, and maybe by then the technology will be more advanced that the odds will be more in your favor, or the recovery wont take as long. We can always have hope. I do wish the best for you. Anytime I feel a pitty party coming on for myself, I think of you, Ron, Gwennie, and all the others that have been through so much, and I think to myself, "Self, kick your own butt, others have been though worse and keep going". So you see, you may not realize it, but you have helped me.
    I had the discogram today. Was bad, but its done. Hope I can get something done and get relief. I told my Hubby, I will only have one more surgery on my back and that is it. So, if I have to this is it. It has to work. Anyway, I hope you feel peace with your decision, and can find some relief from your pain. Take care, Have a good weekend. Robin
  • as you can imagine this has not been an easy thing for me to do .but JIM has mentioned a few pointers on his post about blood clots and fatty deposits etc and when i had a scan last year for an AAA even tho that was ok there were early sings of peripheral artery disease {i was told not to worry as it was slight and many people in the forties would have the same thing ,but as this surgery would be an massive one and i would have to sign my life away {the consent form before the operation} i would have no comeback if anything went wrong and from what i have been told things would go wrong the operation has too many ifs and buts and maybe.then there the 3 year recovery with no guarantees this is what the surgeon said to me and he also said there is a chance that you may be made worse.so he has covered himself.its my life but to him i am just another man with a bad back ..if things go wrong then all he can do is say ..like all the others have ..sorry i did my best now go home and take your pain killers ..and i don't know if i have mentioned this before but i was warned by at least 2 other spinal surgeons NOT to pursue another operation as i would find someone that would operate and it would be the worst decision i would make ..i did not want to hear that but on reflection and all the uncertainties and my home position another operation dose not seem the right thing to do .i could find myself as good as i am now in three years only this time i would have 4 new scars and a back full of mettle ,and again my physio told me a fusion wont take away back ache at best it will only stabilise your spine ..its just not going to happen .....and yes fear played a part in this decision but i must listen to my own feeling and i don't think i would make it out of the theater and if i did i don't think that it would have done me any good .i know i have probably gone from one thing to another on this post but its 3 am over here and i am tired ..so i apologise if reading this is a bit all over the place !
  • I understand totally. After 9 surgeries in 2 1/2 years, trust me, the knife is not something I wanna do either.
    You had a hard decision, but hopefully now you can rest and try to feel as good as you can. I wish you well, and also that they come up with a better option for you in the future. But if not, it seems like you have your head in the right place and will make lemonade with the lemons they have handed you. Take care and rest my friend, Love, Robin
  • I'm glad you made a decision and now can focus on it. Remember that surgery is not going anywhere, that will always be around if you need it. The things your surgeon said sound like the things the first surgeon I saw about a possible fusion said to me. He sounded so negative about the outcome it almost seemed like he didnt believe in himself. He gave me 50/50 odds of either improving or getting worse and he looked pained even giving me that good of odds. He didnt say one positive thing during our meeting, he seemed scared of performing the operation. Obviously I decided to try and move on without the thought of surgery. After about 8 weeks I came to the full realization that things were not going to work that way.

    Second opinion the surgeon was the complete opposite of the first one. He said about 70% of his fusion patients improve, and the improvement was around 2 to 3 pain scoress(on a 10 level system). He also did not say anything about getting worse or anything about the recovery taking years. He was completely confident in himself and he sounded like he wanted to help me. The meeting was short but sweet. I was not expecting to hear anything good, so I was very happy afterwards. When you are happy about a future L4-L5-S1 fusion at 30 years old you know it's time. It is very important to have a positive outlook going in, you have to be mentally prepared. My recovery has been fairly easy especially compared to what I was thinking. 7 weeks out and I'm doing everything as I did before surgery, I already feel as if I could start physical therapy. I try to keep the mindset that I'm improving a little bit every day. If you ever do come to a day where you had to take the next step then you need to find a surgeon that you feel safe with and who seems confident of his abilities. That will help in changing your outlook to a more positive one. Also remember that different doctors have differing opinions on surgery. Outside of the spinal cord stimulator Ive never heard a Pain Management doctor recommend surgery.

    You'll know when its time to go forward with an operation if that time ever does come. I hope things work out for you. Good luck.
  • jlrfryejjlrfrye ohioPosts: 1,110
    I admire the fact that you have made the correct decision for YOU! Hopefully now that you have made this decision and your mind set is to make the best you can of this situation you will now have "peace of mind". Ive said many prayers for you and will continue to do so. I wish you the best in finding what works for you and eases your pain. You have always been someone who I enjoyed reading your post and replies so please dont forget about us and drop a line every now and then. I wish you the best of luck Tony,
  • Tony its been a long time since ive posted but im here everyday, reading .
    I can fully agree with your decision not to opt for more surgery as im in the same boat.
    After the surgeries I had last year, implanting the SCS and its subsequent removal, due to the infection....I just cant do it anymore.
    The thought of another surgery makes me sick to my stomach.
    I live with the pain drugs, as much as I hate them ,as a necessary evil. I strive to live with as much quality as I can on a day to day basis. Its not the best but its the best I can do. I sincerely hope you find the same

  • a very hard things to live with {as if you all don't know that!!!} but the fear of being made worse scares the hell out of me .i can't take risk i am 44 in may my last op was 3 years ago in nov i dont have much leg pain but as you all know i do suffer with back ache .BUT the oxy and TENS make life bearable .if i was 30 and in good health and 3 stone lighter and it was my first operation and my home life was better >>>???well maybe i would have gone for it..if the leg pain starts up again well i may have to go under the knife once more.but for the moment i am keeping away from surgeons .as for keeping in touch with you all that's a definite i love coming on here and there are going to be times when i need to have my say about something .so you carnt get rid of me so easily!! just kidding
    tony x
  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    I know you've put a lot of thought into your decision and I'm sure it's the right one for you. I agree that it's best to listen to that 'little voice'. Like others said, there may be something better come along in the future.
    I'm here for you anytime, no matter what you do I'll support you my friend.

    Take care,
  • But after I re-read and saw what the doctor had said I can not blame you. How could you go into a surgery when the doctor is not really giving you any really hope. He is saying 3 years recovery, poor chance of feeling better and can be worse. It is one thing to protect yourself, it is another thing to paint such a bleak picture.

    Honestly in my situation where all the doctors said no surgery I am glad I listened. I had a chance very early to do surgery with a neurosurgeon. I am glad I did not go with it. The funny thing it was almost like someone was watching out for me. Cause honestly I really wanted it but some reason just did not schedule it. It was not a decision I made it just happen.

    I can also say I finally found a doctor I really trust. We seem to talk the same language. We alsmot finish each others thoughts as we were talking yesterday after my epidural. I will only do the IDET if he tells me to do it. You need to find that doctor before you can move forward on any treatment.

    I believe the body is still an amazing piece of machinery and I would not give up hope that in the coming years things could get better.

  • Hi Tony - I haven't been here for a few days so I replied to your PM before reading this post. I respect your decision and of course, you need to do what you feel is best for you. I did have a couple of doctors tell me they wouldn't do my surgery, but that was only because they didn't do three-levels. It wasn't because they felt I had other health risks.

    All the best,
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • I agree....there comes a time when "enough is enough"!
    Surgery is what got me in the mess and pain I am in today. Not a botched surgery but scar tissue from the surgery.
    I know how you suffer. No need to add to it.
    I know you are doing what is right for you and that is what is important.
    SH would not be the same without you. You still have a lot to add so do not leave us. I just check in every now and then but do like to read your comments. Not much going on with me either until the 31st and I see my new PM. I am just hanging on by my fingertips until then.
    Youe friend :H
    Patsy W
  • I was just hoping you had found an answer to relieve some of your pain. But I truly respect and understand your decision to put your surgery on the back burner. Someday you might change your mind and we'll be here to support you. But this decision had to take a lot of thought. I admire your courage! I know you can endure plenty of pain and will have the strength to make this new plan work! Go Straker!

  • That must have been a difficult decision and I respect you for that.
    You can always change your mind if things get to the point that you can't live with it anymore. If you went through with the surgery you wouldn't have the luxury of changing your mind.
    I'm not sure I would have made the same decision but i'm glad you're doing what's best for you and not taking this decision lightly.
    I hope you are able to improve your quality of life and learn to manage with what you can do.
  • Tony,

    I would have made the same choice as you. If you cannot get some idea that a surgery is really going to work for you, why bother? And if my surgeon had told me the things your surgeon said, there is no way I would have gone under the knife.

    There are times in life when we do need to listen to the voice. And it seems you made the best possible decision in the worst of circumstances.

    Bless you and I hope this allows you to go on, knowing you made the right decision.

    Gentle Hugs,
  • O:) O:) O:) O:) O:) O:) O:)
    I am glad that you have made a decision that's right for you and your situation. For the level of pain that you've been in for such a long time, to not have the doctor give you better odds for pain relief -- well, what you know is a lot less scarier than the unknown (when it comes to pain).

    And, like so many other others have said, have hope that technologies will advance to a point that a solution for you will come about.

    Your focus on having the best quality of life you can have for now is a sound one.

    Oh, and before I sign off, I have one burning question -- what is a stone???? Is that like a pound in the US? If it is, I have BOULDERS to lose! This I say after just pigging out on Easter chocolates (LOL!) :D :D

    Take care my "STONED" friend -- I'll always be here to support you in whatever decisions you make.

  • Tony:

    Good luck, I know its a hard decision and you sound like you have already been thru a lot. At times I have regretted my first surgery, on 2nd now, which is small compared to some. If my doctor told me that its going to help with the pain, I wouldn't have done it. Take care. ;)
  • dilaurodilauro ConnecticutPosts: 9,837
    Yes or No

    How do you make that decision. I know what you have been through and the pain you currently are in.

    Surgery or No-Surgery?

    I am sure you have already churned this around in your head over and over.

    Like IF you do have surgery, what does the potential outcome and future look like?

    And If you Dont have the surgery, what the long term impacts if any to your quality of life?

    When I was faced with an additional spinal surgery (thoracic), I did a lot of soul searching about it. I guess for me it was easier, since my doctor really wasnt keen on doing any thoracic surgery on me, because of the previous cervical and lumbar surgeries.

    But I also looked at all the options. Thoracic pain is a bear to deal with, but with the total overall blend of treatments, I could least manage it so that I could go on .

    Tony, I wish it was a simple as a coin toss to decide what to do. I do know you will make the right decision.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Tony - Wow! I am sure you thought long and hard before coming to this decision and I am sure it wasn't easy. Sometimes we just have to say enough is enough. I admire your strength and courage!

    Take Care, Pam
  • i have just had a phone call from the hospital concerned about my decision to decline the offered surgery and would i come to see the surgeon and discuss the matter further ??? being the nice guy i am i said yes i would come to talk with him ..i am wondering if ..is he annoyed that i have blown him out ..or have i missed something ???? so i have rang the other hospital {the one where the surgeons have said don't have anymore surgery }..to get the reasons why ...they said no ...i will hear both side just to make sure that i am making the right decision ..
  • Honestly, I am glad you are getting a refresher on all this. Only you can make the choice.

    You seemed so down the last few months, I really hope there is an answer to allow you to at least be more comfortable. Be it medication or whatever you choose.

    I have trouble imagining living with only 3 hours of sleep a night for so long. My ancient dog got into some burger king wrappers my son left lay on the family room floor. So, the dog was in and out all night trying to pass those things. Just the nights the dog keeps waking us up does me in. Oh, guess who had to clean off the porch deck this morning too...

    I so hope they can give you some help with all or any part of your pain. Hang in there.
  • since i have said no ..the devil verse the angle thingy on my shoulders have been twitching ..so another session with the big man may help clear my mind either way .some say that i have been a bit hasty in making a big decision and other say i should go with my heart only i can make the final decision and i suppose another few months making it wont hurt ..then i should know if i have made the correct decision ..
    as far as i know there are no other offers of help from anywhere and if i keep to NO THANKS all i have to fall back on is my pain killers. what i may do is ask for time{ once i have seen him }say 6 months and review the situation .at least then i will have has some time to get my head around the facts and i can still say no ..its not as if he is short of work !!
  • is going to be your friend in this situation.
    If you say to your surgeon, now is just not the right time for me, I would like to hold of for a while and make a decision later on, he will respect that.
    While he's a surgeon he's also human and i'm sure he'd understand that this is a big deal and not to be rushed into.
    I think in 6 months of trying to make no surgery work, you'll know if you can live with your current state or not.
    I'll be interested to hear what he has to say.
    Good luck
  • With your Surgeon appointment. That's great he's following up with you so at least if you decide to do surgery he'll be there for you. Always take care. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
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