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Post spinal fusion. Debilitating pain from age 15-26 no end in sight

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Nnicky15
Nnicky15

Hello my name is Nicky. I am a 26 year old male in Massachusetts and I was born with an extra bone in my spine that was simply removed at age 5. At age 15 I had a growth spurt and started experience sharp pain in my upper back for every waking hour. The doctor at children's hospital did a spinal fusion from T1 to L1. After recovery from that surgery the upper back pain worsoned. Got more sharp and more easily aggrivated. They removed the rods years later in hopes that it would help alleviate the pain but no change. The progression of the pain getting worse has only continued. Most opioid medication did not help. The only ones that did we're morphine and dilodid. For whatever reasons the others had no impact on the pain. I've also been on several neuropathic pain medicines and those just drove me closer to suicide so those were stopped. I've been on a few different muscle relaxers as well. Baclophen being the most recent, they never particularly helped but they gave me incredible nausea. After years it seemed like certain medications were just causing harm so now I am only on morphine and medical marijuana. They help but not very much. Without the medication the pain is ranked 9/10 and then an hour aftery medicine it goes to an 8 to a 7 and then back up to 8 as the day progresses. Anyways I've been in this situation for a long time. I was a child when this started and now I'm all grown up and I'm still in the same place I was. Mostly isolated in my room. I'm starting to get to a low point where the isolation plus the pain is driving me more and more mad. I was never able to attend high school or collage, I never got a licence or was able to work, I'm not able to sit or stand still using a computer, and now I'm at the point in my life where I want to have career and family goals but I'm stuck here. I wake up every day loudly screaming and I think it's only a matter of time before someone calls the police for the noise. I'm hopeful that someone reading this may have been through the same thing and came out of the other side better. My hopes is that this post will enlighten me to new treatment options.

0 likes, 3 replies

3 Replies

  • allaroundanne
    allaroundanne Nnicky15

    Posted

    Wow, you poor thing, you may not want to talk to me, but full disclosure, I am yet another doctor- retired though.  I did pain management and anesthesia, but I have also seen the other side of all this, I had to retire in my early 40's because of chronic pain and I now have 2 spinal cord stimulators and am being treated for the worst pain syndrome there is to treat CRPS, in my right ankle.  So, that's my "credentials" so to speak. I want to say that what was lacking for you was a care team approach, no one seemed to be in charge of everything, you just got sent here and there where each doc did what he/she thought right with no one conferring among themselves.  Putting rods in and out are two HUGE surgeries and neither should have been undertaken without a lot of thought, it seems like with you they just figured, oh heck let's try it.  That really wasn't fair to you, it's like you were a giant guinea pig, let's try this and see if it works.

    I'd like to try to go back to the beginning and see if I can trace this through and figure out what was the real problem.  Do you know what was the extra bone in your spine? Did they remove that bone or another? Was the bone removed from your thoracic area where all your pain seems to be?  Has anyone mentioned curvature of your spine?  Having an extra bone and then problems after a growth spurt leads me to believe your spine didn't grow straight like it is supposed to and that is what lead to all the rods and screws.  It might have been better to have you wearing a body brace for a few years to straighten out instead of major surgery, but what's done is done.  But see if you can find that out.

    You have missed out on an awful lot of the important parts of life, Nick.  I think it is going to be very hard on you to just jump back in at 26 when you retreated at 15.  You are going to need a lot of support in this endeavor of yours, once you tackle the pain part.  Have you thought at all about talking with a therapist about this-- it is really like you got stuck in a time capsule as a teenager and missed all the growing pains, and are now in a man's body but have no idea how you got there.  Think about it.

    As for other treatment options, first on your list is get yourself into a good pain clinic, of course I favor one run by an anesthesiologist/pain clinic specialist.  Let them have a look at you, get current studies on your back. Tell them about all your experiences with various medications. But, sometimes a fresh set of eyes on a problem really does wonders. Currently spinal cord stimulators are all the rage, however I don't see them being put in very much for pain in the upper back, it is mostly low back and legs.  I have one for my neck and that is one of their newer applications.  They may want to do a trial on you, that is a week long, they insert leads through a small hole in your back, much like they do to a lady in labor.  They leave these leads in place, threaded up into your upper back where it hurts and they then connect the leads to the generator box that hangs on a belt that you wear.  They will try different programs of electrical stimulation that are so high frequency you can't feel them, but hopefully it will lessen your pain.  If your pain is reduced by at least 50% they will consider it a win and ask you if you want to put it in permanently.  The other option I can see for you since the morphine works for you is a drug pump that would deliver the drug directly into the space  leading to your brain. This allows the doctor to give you much less drug, you to have much less side effects and usually the drug works better on your pain.  Once again they thread a catheter into you, attach it to the drug pump and then bury the drug pump under the skin of your buttock, above where you would sit on it. Believe me you don't notice it at all.

    HTH

    Lynn ( welcome to the group)

    • Nnicky15
      Nnicky15 allaroundanne

      Posted

      Hello I'm sorry it took me a bit of time to respond. Im not really able to respond to emails all that often and I wanted to give you a thoughtful reply and answer your questions and also thank you. The extra bone was at the top of my spine,I in my head/neck areea. They removed the extra one through my neck and head. They had to do the fusion because the spine was curving into my lungs. They used a brace when I was much younger buy it had no effect. I've been to many therapists. Most of them weren't able to help me all that much. Others didn't think I needed that type of help. Right now I have one who comes to me once a week. He's helped with some logistical matters but mentally I just feel like I'm getting worse. The people in my life did what they knew and I know it was wrong but that doesn't change that it happened. I didn't have any support. When it became obvious that the school wasn't going to make the accommodations I needed to attend regularly I was just left at home while the rest of the world works. Right now my pain clinic is right in Haverhill where I live. After I struck out at the major Boston hospitals I went local. The doctor here is really nice but the options he would have suggested have already been attempted and the ones that haven't been attempted he either thinks I'm too young for or that they wouldn't provide any improvement. I haven't been going to him long. I have a monthly appointment with him and I've seen him maybe 4 times now. Ill bring up the pumps and the stimulators again. He thought I was too young for a pump and that the stimulators wouldn't be effective because of how much scar tissue was there in addition to the location of the pain. My previous pain clinic said they were getting the process started to have a trial started, but 8 months past and I started going to a new doctor. I had an MRI that was supposed to be before the stimulator but I was in the machine for 5minutes and had to get out because I can no longer lay flat on my back if I'm awake. It just becomes too painful in my back and even my chest. I have to schedule another one either way but I need to find a way where I'm not setting up to fail again. So I'll try bringing it up on my next appointment. But I think if I'm gonna get either of those I may have to go to another another doctor. He seemed pretty firmly against it last time but I still think it's worth a shot

    • Nnicky15
      Nnicky15 allaroundanne

      Posted

      Hello I was hoping to hear back from you. Things have been very difficult and I'm trying to come up with a plan moving forward.

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