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When to MUSC pain clinic biggest hospital in Charleston SC and the doc said that there is nothing that he could do. He even said that if he knew that it was me coming that he would have informed me ahead of time not to come. I wasn't charged. Even as my head was shaved with lidocaine patches covering my left side face, head, neck and chin, skin burning on fire, left ear inflamed super red, muscle spasticity (spasms locked my left arm in place, can't move my head at all, neck burning and chronically painful, left haND swollen and blue, tears rolling down my face and much more he told me that it was a mistake to have craniovertebral instability fusion, and not to even think about getting a infusion pump. More trauma he said. I expect no answers here as my condition is above the means of the best care around here. He made it clear that you are MOST LIKELY going to suffer from all of this the rest of your life. No med were offered because he didn't feel that what he could suggest wouldn't work. This is beyond CRPS type 1, which is chronic and spreading, I have too many diagnoses at one time and they all are clicking on all cylinders. Right now I'm anxiously trembling and shifting around on only my right side laying on the couch. Pray I can edure because my mind is going to very dark places. I want this to end. NOW!!!!!!! ROCKY IS KNOCKED OUT FOR GOOD. SCREW THIS!!!!!

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5 Replies

  • Posted

    I am confused, did you have this fusion surgery against their recommendation or are you seeing them for the first time and they think the surgery was a mistake?  I didn't think anyone was not a candidate for an infusion pump.  My feeling is your entire encounter was one big dump, he made sure he did nothing that would make them beholden to you and have to see you again.  Saying you have "too many diagnoses at one time" is his way of saying he thinks you are nuts. But even then, he should have referred you to a psychiatrist involved with the pain department, which I am sure they have. He just gave you the boot, which is a terrible and unlawful  thing to do to someone.  You were obviously suffering and he thinks he's off the hook by not charging you.  It doesn't work that way.  He abandoned a patient which is against the Hippocratic oath.  I am sorry that happened, Rocky.  You saw the worst medicine has to offer. I know what an effort that must have been to get there and back home.  Perhaps seeing a local PM doc might be better than going to the "mighty" institution.  I know that my local PM docs are awesome.  I also know that when I recently went into kidney failure for no good reason, I went up to Mayo Clinic, I couldn't get the anointed ones to ever call me back after my appointment and testing for a result. So, I made an appointment with a respected local kidney doctor, had to repeat all the same tests I had up at Mayo because they wouldn't release theirs, and finally got my answer at home.  So much for "The Mayo".  I won't be going back there again.


    • Posted

      Interesting, I thought about the Mayo Clinic all day Friday and if they could help me. I had the surgery upon the Chief Neurosurgeon's recommendation. I specifically asked him this question, " I know that you can't feel what I'm feeling but if you were me would you have the Craniovertebral fusion? (Of course it's for Craniovertebral Instability). He thought for a few or more moments and directly looked me in the eyes and said, "Yes, but I would not be able to perform surgeries anymore. I'd have to give lectures for the rest of my career." Lynn, my muscle spasticity in my neck is way worse than before the surgery. I cannot move my head at all. It severely hurts just keeping it still and worsens if I nudge it in any direction. The nerve pain in my left side of my head, neck, back of head, left shoulder, left arm and hand is unbelievably painful and it's getting worse rapidly. All of this is inflamed RED and it moving into my right side as well. My inner left ear aches so bad and feels like tiny critters are crawling around inside of it, nerve disfunction I'm sure. I'm standing here at this moment burning up alive. I'm in a constant flare now. At least 2 weeks or more. Each day it's getting worse. I seriously feel like something went wrong and of course I had an MRI and a CT scan ordered by him say that the surgery was a success. The pain management doctor and the neurosurgeon is passing the buck telling me and giving me something in writing to have my pain managed at the VA hospital. I have ano appointment with my nurse practioner (primary care) on the 23rd of May. I can expect for him to say that MUSC needs to manage this. I'm almost out of the 3 meds that was given to me by the neurosurgeon. I've been divided them in 1/2 just to get by. They are really not so effective anyway. I cannot tolerate Neurotin that well and they suggest increasing the dose. Yes, I know for sure that they are blowing me off. I know that you and all patients with CRPS suffer beyond belief. I feel it myself. I had CRPS for 2 years in my left arm and shoulder then by His recommendation he cut the back of my head and neck to implant a device to stabilize my head. Now I feel that was a mistake even though he showed me images saying my ligaments and tendons in my skull connected to my C-1 vertebra were damaged and stretched beyond repair and that they would never heal. This past week up to right now and counting, my symptoms are rapidly getting worse. I'm frozen still in chronic pain and muscle spasticity including in my left arm. So what to do. I cannot even focus on anything. Physically nothing at all. I still can only stay on my couch only on my right side. That's been over 2 yrs now, no kidding. This is more than terrible, it's extremely cruel. My even bigger fear is that it will completely spread to my right side and I will have no way to lay. My Trigeminal Neuralgia is much worse as well as the Occipital Neuralgia. Oh and my chin and jaw line,,,, WOW! I've got to find help or I'm not going to handle this. I'm exhausted from trying and so frozen in pain to where I can't even or travel. Standing is very hard because of this. Well, I've gotta stop typing and go lay down again. I know that I spend 23 hours each day on my right side on my couch. Getting my head in the right position really sucks. A constant battle. Everything has to be aligned straight. Thought about even writing THE DOCTORS TV SHOW. Bet that would get me nowhere.


    • Posted

      Oh by the way, it is helping telling all of this so maybe I can print it off and present it to someone who can help. I hope.
  • Posted

    I think your one ace in the hole here is that you are a vet.  And I think you are right that you just haven't told your story yet to the right person so that you get proper care. People get very upset when they hear about vets being mistreated, it just takes getting the story out. If you don't mind a bit of publicity, you could probably find yourself a caring doctor willing to take on your case.  I was doing some research today on the after effects of your surgery and some oral surgery papers noted that your teeth don't hit right after the surgery. Doing this repeatedly will cause a lot of craniofacial pain syndromes according to this paper, so it makes perfect sense that after your surgery your already sensitized nerves in your face and head went haywire.  The malocclusion of your jaw alone caused a lot of pain. Perhaps a doctor you might want to see would be an oral surgeon or orthodontist to check on how your jaw is working and if it is responsible for some of this. 

    Anyway, you need to use you situation as a very sick vet, who needs help but is getting the boot from doctors, and somehow find a reporter to publicize this. You write so well, I am sure if you just sent something in to your local paper they might send someone over to talk to you.

  • Posted

    I was doing my usual morning routine of watching Fox and Friends and a disabled vet who lost both his legs, Johnny Joey Jones, who is a frequent guest was on.  He just had a very bad experience with the VA and was now using his platform of Fox news to report it. He's been getting the run around by his doctors regarding getting him a new primary care doctor who would take over prescribing his opioid pain medications. They made him wait for 5 hours at the VA and then told him to go to the ER to get his opioids refilled. Of course, the ER docs refuse to refill opioid prescriptions. So, he went on national TV today to report all about his 5 hour wait, the rude reception he received at the VA, the lies he was told about how to get his narcotics refilled, how he isn't getting a new primary care doctor any time soon, etc.  They ate his story up-- imagine how your story would go over?

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