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Thoracic Fusion, solution or the end of life as I know it.

Hopefully I can find some support and answers here, don't have a date yet but staring down the double barrels of a long fusion from L2 on up to T5. It is due to kyphosis, a curvature of the spine which has stretched the spinal cord to the point where damage is starting to occur. 
I see the neurologist in about 10 days and they will tell me the progression and how long I can safely wait to do the surgery.

I'm a very active person though I have herniation at several levels of the mod-thoracic. While it does cause soreness and pain I have never allowed it to slow me down. I take a relatively light dose of pain meds and have refused to up the dosage after nearly a decade even as the doctors have offered it.

I am an avid fisherman, fishing for large tuna and sharks up to 100 miles offshore. I am a long time volunteer firefighter and am still able to wear/carry almost 100 pounds of gear at times. I have a 14 month old child and work from home 3 days a week to take care of him. Our home is nearly renovated top to bottom, all done by my hands. From tile to plumbing, electrical to paint and everything in between.
I'm not one that you'd even expect had back problems other than a slight curve, but instead am a healthy 6'4", 220 pound man, just a couple years shy of 40. Maybe that's the thing that really gets me, I had issues but could always work through them.

A month ago my regular check up MRI showed a herniation that had grown in size so that it was impacting the spinal cord a solid bit and had gotten progressively worse than the last images. They suggested strongly that I see a surgeon, and I knew that surgery might be coming though I hoped on every chance that it could be avoided. I did figure based on my knowledge of back surgeries that a discectomy or fusion at that level, even a prosthetic disc could be the answer.

I was floored when they explained at the surgeon's that it wasn't just the disc but the curve of the spine that was the issue. They showed me how my reflexes in my legs were not right and that I had some balance issues in my legs when I tried to walk a straight line. They explained that I had very simplistic choices, surgery or the possibility of waking up one day with major nerve issues from the abdomen down, possibly even paralysis.
So now it's time to start dealing with reality. I've spent a week alternating between sobbing and cursing the heavens. I want to do everything I can for now until they tell me I can't, if the surgery can wait long enough I will push it off for one last great summer, living out a virtual bucket lost of things that I may never be able to do again. I also plan to use the time to do lots of pre-op therapy to give myself the best odds.

All that being said, I've come here more to find others who have been through similar procedures and see what hurdles I really have coming; and which hurdles are more like brick walls.

I want to believe that I will once again fish hard for fish so big people think they are sea monsters. I want to believe that one day I will again ride on the shiny fire truck, crawl through a door into a house filled with flame to save life and property. Most of all I want to believe that I will be able to be an active Dad, coaching sports or throwing a lacrosse ball with my son, even just picking him up and twirling him in the air or going for a bike ride.
At the same time I am not so naive as to think I really will be anywhere near the same afterwards. I am not so naive as to believe it when the doctors can't answer the questions about what life will be like after the surgery or to hear "everyone is different" one more time. I feel like there may be dreams I need to let go of so that I can have realistic goals that I can reach, things that I need to say goodbye to now, to do one last time.

I'm also here to learn how to deal with the reality of a debilitating surgery like this. To find a way to stop thinking it's the end of my life. Sent days I feel like I would rather them say you have 6 months to live rather than the unknown of life after surgery. I want to take advantage of the time I have left but anxiety and depression have me frozen like a deer in headlights.

So that's my story, if you even read this far...

Hopefully I can find some solace and understanding with the help.of others here.
BR


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Comments

  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Great first post.  While I don't know much about the kyphosis surgury, I am familiar with thoracic issues.  My best advice is to get a second opinion ( maybe at a large teaching hospital or highly regarded thoracic spine surgeon) and don't let anyone operate on that area unless they have done it many times.  With thoracic spine surgury I met surgeons who were to scared to do it and others who revolutionized the procedures for less recovery time, real top of class guys, and the difference is staggering.  Good luck with everything and I hope you get to still do all the things you hope for
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • SooveritSooverit Finger Lakes region of NYPosts: 460
    Hi livetofish,

    Man, oh, man! My first thought was how on earth are you managing to be so active with all that going on? Good for you for insisting on living the life you want all this time, instead of surrendering to the pain  (as I pretty much have).

    I, too, am possibly facing surgery. I am a stay at home mom of a two year old. I used to be incredibly active. I'm from Alaska, and used to a life of hiking, kayaking, camping, backpacking, biking, etc. Yoga has been a passion for years. I dreamt of sharing these things with my son. I'm not sure it will be like that...ever :( and I'm just gobsmacked at that reality!

    You made me think of my dad. He was a hunting and fishing guide in Alaska. It was his life, his passion. He had pain that eventually made it too difficult to climb into the mountains with gear. When he finally went to the doctor, he had metastatic cancer throughout his body. He put up a good fight. He ended up in the hospital needing a surgery to scrape tumors off his spine. After, they said he would likely be paralyzed. My brother shared that he said if he couldn't climb mountains and hunt anymore, do not keep him alive. So, we made a choice to remove life support. Geez, sorry for a depressing story. Just saying, he was so passionate about those things that he didn't want a life without them. :(

    You will find many here who know all too well about the depression and anxiety, and a loss of many things they love. But also there is a lot of hope and stories of healing here, too! 

    Welcome, and so sorry you are going through this. 

    Best of luck to you!
    Sara :) 
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  • Hello, BR.
    WOW.  Despite your condition, you're still able to do so many things!!!  Outside of the firefighting, you sound like my husband--loves to fish, and is also in the process of remodeling our home (he's a carpenter--you know we're always the LAST house to get worked on...LOL!!)

    I know you will find many individuals here who are facing the uncertainties of the "before and after" in terms of having spinal surgery.  You'll also find many people who have faced this challenge, are working through it, and are also working VERY hard to get back what they can physically, and accept the losses of what they cannot.  As I'm sure you can understand, the losses are arguably the hardest part for most of us to deal with psychologically. 

    I'm sure as heck not going to pat you on the head and tell you "everyone's different...you never know what's possible...the sun'll come out tomorrow...etc".  I didn't like it when doctors blew smoke up my keester and tried to tell me everything was going to be ok.  I wanted honesty, and it seems like that's what you would like, as well.

    The honest thing is that there are no guarantees with surgery, but it sounds like you're in for a world of trouble if you don't have it done.  Nerve damage can exact its debt in many ways besides paralysis.  Think loss of bowel control.  Think loss of bladder control.  Think about swinging your child around only to have a leg give out and you BOTH end up injured.  Think about being up on a ladder working on your home, and both legs give out--would that result in paraplegia or quadriplegia?  Nerve damage can rob you all at once, or it can steal your life in inches.  

    Sometimes, and BELIEVE YOU ME I know it is hard, you kind of have to reframe things in your head to focus on the things that the surgery will give to you, not take away from you.  Up to now, you've probably dodged a LOT of "bullets" that could've done serious physical damage to you--but you are just fine in terms of still being able to walk, fish, firefight, work on your home, etc.  This is your "before".  The "after" is the unknown--and all the frightening thoughts that come along with that are enough to bring even the strongest person to his or her knees.  I think (and just my humble opinion, of course!!) one of the things that might help you to work on this reframing is to consider not just the "before" and "after", but the "during". 

    What I mean by the "during" is your surgery and subsequent recovery.  Just as you've devoted yourself to the service of others with your firefighting, it is now time to devote that energy to yourself.  YOU are the "home project", so to speak--and by the tone of your post, once you've committed to something, you see it through regardless of the outcome (hey, you don't always get the big fish, right?).  Personally, I'm a research geek, so I looked into all kinds of ways to aid my recovery in both traditional and non-traditional ways.  But that's me.  Your approach will be different, but I'm guessing you will do whatever it takes to make the "during" become the most positive "after" that it can be. 

    I have gained so much from being a member here on Spine-Health, and it's my wish for you that you experience the same compassion, education, and camaraderie as I have.  Please click on the following link for some helpful information to get you started.
    Welcome to Spine-Health
    Take care, and keep us updated, ok?
    Kimmy72, Spine-health Moderator
    Firm believer in PMA!
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Soooverit,  can I just say i respect your families decision so much.  I read a doctor said the other day about medical costs, we are keeping people alive longer but that does not neccessarily mean they are living.  I find your choice beautifully compassionate in a brutal situation .
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Thanks everyone for the warm welcome. I am going to the best hospital in the area and have checked with some people I know that are in the ortho field and all agree that I am in the best place. Plus the surgeon did a small fusion on my mom with good success.
    I know it's an uphill battle but many things in my life have been, not the least of all doing what I love even though it hurts some times. The tough part is the unknown, I feel like I can work hard, prepare myself beforehand and bust my hump in recovery, but I also know that there may be a top end to what I can do even after all that.
    Yesterday I drove past a fishing pier on the bay where I took my son when he was less than a month old, and promised him we'd be back there one day fishing together. I completely lost it, sobbed for nearly a half hour. That's one of the things that hurts most right now, the things I always thought I would do some day, the vague promises of what the future would bring. 
    Trying to balance those thoughts and the hurt that accompanies them with the positive belief that I'll be different and I'll overcome as I always have. Like an elephant on the head of a pin...
    Thanks
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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Livetofishnj, I am guessing you live in NJ?  All I can say is I was going to best in my area ( smaller city) , but they couldn't hold candle to best in the world.  That's why I traveled to consult , thoracic surgury is a beast.  But if you feel comfortable in the hands you are in then that's a big plus.  Good luck.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Yes, NJ. It is good because there are numerous really good hospitals with some of the best doctors in New York, and up.and down the coast. From Boston to Baltimore there are top surgeons so I am lucky in the respect. Still going to get a second opinion but do really trust the doc I am with. 
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    Yes there are some of the best out there. Glad to hear you are in good hands.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Nothing is promised
    You ..

    FIGHT.

    for every last good in your life.
    Those storms are on the horizon
    They
    Are not here yet
    You
    Are not defeated yet
    Your warming up, loosen up and get your mind in the fighting place.

    Your boy?
    You want to know something?
    He will look up to you no matter what.
    Playing catch
    Kicking a ball

    Is NOTHING
    to what greatest of gifts your going to give him.

    His Humanity.

    Each and everyday..he will see you do the best you can..to be the best you can
    And he will walk in your footsteps,
    And he will be worthy

    Because you will have taught him strength
    Courage,honor..humility.
    His eyes will see the example you make in your struggles
    And he will know how to overcome anything Life will throw at him.

    There are always two clouds in a storm
    What it looks like in the dim and hazy distance
    And what it is.

    Your strength will be a force to be reckoned with
    His force..which will be partly yours..will be greater for what you will suffer.

    You will not fail
    You may fall
    But you will always get up
    And so will he.

    That...is Character.
    William Garza
    Spine-Health Mod
    erator

    Welcome to Spine-Health

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