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Revision Surgery Done

Hello everyone:

Fair Warning: this might be a long, winding confused mess of a post!

I am about a week out from my revision surgery to address two broken rods and non fusion issues. It's really been such an emotional and physical roller coaster.... I am torn between the knowledge that not every spine fuses to plan possibly resulting in rod fracture and the certainty that this is not the norm and maybe my surgeon made a simple mistake. Either not enough bone added in the first place or perhaps not enough sanding of the bone to make the new stuff fuse. Either way it really doesn't matter, does it? I mean I'm here and the reason may not be important.  I'm just kinda pissed off! Normally my logical side wins out, and I remind myself that this does indeed happen. Do I somehow think it shouldn't be me? I assume because I'm healthy and follow the rules, I will be the quickest recovery on earth. Come on!  So, "woah is me" baloney aside, I may just want to vent. And let's face it...this is the place, am I right!?!? (High fives all around).

Both rods broke within 13 months of the initial surgery (July 2017).  Did I expect this? Not at all. But, I do understand from my research, that sometimes a non fusion occurs. Because the non fused part of the spine is acting like a joint, the constant bending can cause the rods to break. Oh and they aren't titanium like I've been telling anyone who will listen...they are cobalt and chrome. My surgeon said titanium would have broken before cobalt. O.K. Got it. Since July, I have only had communication with one of the Physician's assistants. Every fear I expressed (if the rod is broken is there a possibility I am not fused? can I break the second rod?) was met with assurances that my fears were unfounded, when in fact my concerns were appropriate. My frustration has been with a situation that has not allowed contact with my surgeon. I was finally able to speak with my surgeon in mid September, on a Thursday. During our conversation he did a fairly good job of explaining the situation and said he could perform an urgent surgery the following Monday or Tuesday. So, no warning basically. He ordered a nuclear medicine bone scan which involved injection of a radioactive isotope into my veins, followed by a 3 hour delay and then a scan.  The scan highlighted areas of the spine that were still healing or trying to heal. Basically both rods were broken at locations of non fusion. This just wasn't apparent from the CT scan. The surgery was scheduled for Monday and although we had discussed what my surgeon was most likely going to do, that changed somewhat once I was on the table. Basically, I had a swath of bone that didn't fuse, which involved both sides of the spine. So he added bulkier rods on the left to bridge one break and replaced part of a rod on the right with a beefier rod while removing the pelvic screws on that side to relieve any tension. I look like Frankenstein's Monster. I mean at least I had symmetry before!

Although the pain was substantially less this go-around, the side effects were so much worse! I honestly didn't feel like I was going to make it for a day or so there! Blood pressure and oxygen very low, blood loss high. I was passing out, vomiting, and not breathing well. I think the Dilaudid just slowed my system down too much. Oh and I simply couldn't pee! I spent a couple of days hobbling around the hospital wearing two gowns (one a cape), a blanket, and bright red hospital socks, with a catheter bag (nay box!) hanging from my walker! Awesomely good times.

I still spent five days in the hospital and I'm fairly weak and slow but hopeful. I briefly had some sort of an epiphany almost a spiritual awakening if you will. I got home and realized that as long as I could pee, life was not worth stressing over! And I've tried to hold onto that feeling but oh, it's fading fast!

So, my real question to every lovely soul here is: how do I avoid feeling that all of this could have been avoided? I am angry that I have to pay for a revision surgery. I have had to deal with regular recovery pain, failed fusion pain, broken rod pain, new nerve pain and now drat...another surgery's worth of pain! My life has been thrown into reverse. I know, I know, I should just be thankful that I can pee...who said that???!!! But in my off moments, I am angry. Parenting suffers, work suffers, etc. And I'm just kind of oddly traumatized by the whole thing.

Simply writing this has helped me see the bigger picture so thanks for putting up with me....life really is good and I have to make an effort to find as many silver linings as possible. I will remain optimistic until I can't.

So good to kvetch..

Noreen


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Comments

  • hvillshhvills Suzhou, ChinaPosts: 971
    edited 09/30/2018 - 3:56 AM

    Noreen

    You can pee... that's fantastic... let's throw a party!!!   Seriously when you are feeling down just remind yourself it could be a LOT worse.  I know that's easy to say and hard to do when you are down... but look at the magnitude of your surgery... a 15 level fusion... out of the thousands of people here on this forum there probably isn't more than a handful that have had such an extensive fusion surgery.  We live in a time when the things doctors can do is truly amazing... even if they aren't perfect...  but just think what your life would be like 75 or 100  years ago... such a surgery wasn't even possible... and the best you could have hoped for was the rest of your life spent in a wheelchair.    Focus your energy on healing right... so you won't have to endure another surgery.  Take the BLT rules VERY seriously... as this could have been a contributor to your broken hardware.  Hopefully you talked to your doctor about taking some form of a bisphosphonate to help with your bone fusion process... as well as the things NOT to do like taking NSAIDS, smoking, etc...   So now if you've read my muttering this far it's probably time to go pee... and cheer out loud... life is good... I can pee!!!  

    Harry - 65 year old male...
    PLIF L4-L5-S1 due to disc degeneration... May 23, 2013
    PLIF L5-S1 due to failed fusion and broken screw... Jan 19, 2015
    Microdiscectomy, decompression L3-L4 due to herniated disc... Jan 19, 2015
  • BitzicatBBitzicat PhoenixPosts: 74

    Harry, I noticed you had a failed fusion and looks like when they did the revision they only did L5S1.  What symptoms were you having that made you undergo surgery again?  I had the same surgery  and now have L5S1 not fused but they are saying it will be OK like that because the hardware is solid.  My nerves are compressed also, so I am still numb after two years.  There is still constant pain at the hardware site and I don’t know if that is from the non union or something else.

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  • Thank you Harry! I’ve heard nothing about bio phosphonates. The other things, yes. I’m also wearing a brace when I feel the support helps me think about my movements. I do move around a lot but try to kneel or squat. 


  • hvillshhvills Suzhou, ChinaPosts: 971

    Bitzcat...

    My scaitic pain down my right leg  became intolerable so they went in and did a do over on the L5-S1 fusion.  I'm surprised by your doctors comments as the hardware is NOT designed to support your spine for a long period of time... only until you are fused.  I would think at some point your hardware will fail.  If your nerves are still compressed and you are still in pain I don't see how your doctor can justify not doing anything... after two years... seems very strange???   Maybe you should get a second opinion...

    Harry - 65 year old male...
    PLIF L4-L5-S1 due to disc degeneration... May 23, 2013
    PLIF L5-S1 due to failed fusion and broken screw... Jan 19, 2015
    Microdiscectomy, decompression L3-L4 due to herniated disc... Jan 19, 2015
  • first of all gratz on making it through another surgery, and being able to pee..that important!! next to feel anger is normal..if you didn't feel it I would wonder about you..you are having a normal reaction to an abnormal situation. I found this poem for my friend when she was fighting canser..it was call the pitty pot. I tried to find it for ya but was unable.but mostly what it says is its ok to sit on the pitty pot now and then, it really good for ya to sit there and get it all out. then when your done and you get off, you seem to have more energy to go back to fighting through recovery..so don't beat yourself up.  when we don't think our doctor has giving us the best possible out come it is so easy to go sit on that pitty pot..it normal..i have been there..more then one trip there too I might add..lol..just don't hang out there!

    its good to get it out and I am happy you feel good to vent here. sending you hugs!! hang in there

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  • WLLadyWLLady Ontario CanadaPosts: 1,486

    YAY you are through!!!!!  and being angry is perfectly normal.  okay, i had 1 surgery so far and i caught myself in the "why me?!!!!" thing too for a while, but then i thought about what it *could* be like.....a wheelchair.....crippled....no walking....losing a lot of things that i love....like looking after my horses, and doing things for and with my husband, and driving, and hunting and walking in the woods....and farming....so that helps me keep my perspective.  although i am still terrified about breaking a bar....sigh.  so i'm a scientist and i couldn't help but notice after my surgery how much calcium i craved....like worse than pregnancy cravings....i mean i could eat yogurt all day long, and i took calcium supplements because my body physically could not stop craving anything with calcium.  and if i eat cheese, milk or too much yogurt, well, the stomach revolts, so it was calcium and vit D supplements for easily 6 months!  finally those cravings went away....but i still think it was my body just screaming for calcium.  you may want to talk to your doctor (PCP or surgeon) about maybe taking supplements just in case your body doesn't lay bone as fast as someone else.....

    and no blting!  period!  my surgeon put the fear of him into me....LOL.  "please don't wreck my work!" so i religiously didn't BLT at ALL!  i had to really remind myself and work hard not to....but the xrays seemed to say i was fused at 6 months. and for sure now at almost 2 years i can tell my spine is way more stable on the levels that were fused.  it's right above it now that i have to be careful....

    so glad you can pee.....that's really really important!  hang in there.  yes, please vent.  that's what we are here for!  and also try to keep perspective.....you are walking.  okay, you need a walker.  okay.  whatever.  small steps to getting rid of it.  and then small steps to physio. then small steps to getting strong....it's all small steps.....

    gentle hugs from here too!  hang in there....and be patient!  oh, my bars are titanium with chrome...and i didn't set off the metal detectors in the airport!  amazing. 

    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. 

  • Thanks guys! I As a sober person, I do recall the Pity pot concept being thrown around by my sponsor many years ago. I used to think feeling sorry for myself was just plain wrong but now i think it's part of the game. I'm allowed to wallow for a minute or two and then, yes I remind myself it could have been way worse. Mostly I'm tired off the adjustments. I have a physical job sometimes and it's really hard not to bend. It's also hard to ask for help. But I recall so many off you questioning the bending at all. Like you,I followed the no BLT religiously for 3 months. But i was under the impression that bending (as shown by my PT) was fine. Now I think that was a mistake.

    This time around, I'm taking it more seriously and wearing the brace. Also, Kathy mentioned the D and Calcium, that is what the PA suggested today. Again, I have to wonder why this wasn't suggested the first go around. I still have some nerve pain and don't hold out too much hope that all will feel normal ever.

    Thanks again for the support, I'm always going to find the silver lining, just my nature. Today? I don't see much!!!

    N

  • hi Noreen have not heard for a spell, are you still healing ok..did it work this time?..hang in there.I was just thinking about you!

  • Hi xrobynx!! Thanks for the thoughts....I am pretty much pain free which is surprising since I've been in pain for so long. I think this is the first in over two years that I haven't had to take anything more than tylenol. So in that respect the surgery has been quite successful. The recovery itself is surprisingly slow going. I'm still very weak and my husband reminds me that I was also weak after the last surgery, but this one just seems like it should be an easier recovery. I know you said yours was only about a month of pain and yes, I can see that at a month now I really don't have pain. However, I must take life so much slower!  I mean the world won't end as long as I can pee!!!! I do worry about not fusing yet again, since it does happen. Wearing the brace religiously and using my grabber more often. Husband helping out more than normal which has me eternally grateful. If I don't fuse this time, I'll never fuse. Don't think I can handle another surgery. One thing I noticed on my recent blood work was a very low lymphocyte white blood cell count; wish I knew what this meant, but I've yet to hear from my Dr. So fingers crossed that my energy level improves because I'm a 55 year old moving like a much older gal!

    Noreen

  • hang in there try some bone broth, some taste better then others..i'll keep you in my prayers

    robyn

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