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Urgent Need: Any option for post-fusion patients?

AnonymousUserAAnonymousUser Posts: 49,671
edited 06/11/2012 - 8:36 AM in Back Surgery and Neck Surgery
I am creating this posting, with the hope that it may fall into the view of someone willing to help or advise me with a potentially critical situation I am facing. I will do my best to keep this brief, but I realize that some level of detail is needed, to try and determine if there are any options or help available to me.

In November of 2003, (at age 38) I was diagnosed with acute and rapid degeneration of the cervical spine (Spondylosis was the assumed driver behind the generation, but this was never officially diagnosed. It seemed a moot point at the there were no forms of treatment available for any form of spinal arthritis at the time) and quite a few neurosurgeons refused to see me, even on a consultative basis, based on information in the MRI reports. I was considered to be too high-risk due to the extensive damage in my cervical spine.

By the time I was able to find a surgeon that was willing to see me on a consultative basis, I had already done my due diligence and decided to try to hold out for artificial disc replacement, for which single-level replacements were just beginning to happen in the field. Although I was considered a perfect candidate for artificial replacement, clinical trials were being limited to single level replacements only. I was advised that, if I was willing and able to put up with the pain issues associated with my degeneration, it was acceptable to try to wait (although in his opinion it wouldn’t be long before I would present with symptoms that would render me unable to function normally). After several bad falls within a few months time, I was indeed, left without options.

In March, 2004 I underwent a tri-level cervical discectomy with full fusion (C 2-5), performed by one of the neurosurgeons handling 2 of the 3 artificial disc replacement trials at the time, and confirmed that given my age etc., I would have been a perfect candidate for replacement, but it was not being allowed at the time and given the results of nerve conduction studies along with the MRI’s I was in immediate danger of permanent paralysis so the procedure was performed a few days later.

While he felt that diskectomy with full fusion on levels 1-6 would be appropriate in most cases, we opted to do only the 3 levels, in the hope that alternative options would open up for me later. The procedure was far more difficult than they anticipated, but all parties involved were stunned at how quickly and how well I recovered, including getting back all previously lost neuro-function and full reversal of all neuropathy.

I’m fast approaching 6 years out, but a few days ago, acute and extremely rapidly progressing neuropathy began to occur. In less than about 10 days, I’ve nearly 100% of the feeling, and partial loss in function of my left hand (pinky and ring finger, and sporadically my middle finger and palm), and I am noticing some losses in the outside of my arm as well. I already have pretty extreme loss in motor skills, especially fine motor skills, in my left hand. I’m honestly floored at how rapidly this is progressing, and I’m seriously questioning if the drivers behind this are structural, or potentially inflammatory in nature, as I’m not aware that structural issues to evolve this rapidly (barring major injury).

This sudden onset really makes no sense to me, as there are no indicators or neck pain that would lead me to believe this could be a structural issue in play. I recovered with less than a 7% loss in range and motion, and still maintain that currently, in my neck and there is no site pain at all. It’s my understanding that this type of neuropathy and paralysis can become permanent, once it presents, if not dealt with quickly.

As you might imagine, I am extremely terrified, given I no longer have insurance since my divorce last November and am completely uninsurable in the private sector. For other reasons, I am also completely ineligible for any assistance on either a State or Federal level.

Given my circumstances, my best guess would be that a clinical trial, or potentially working as a patient for neurosurgical training, are likely my only two options. Even the costs associated with basic diagnostics to determine causation are out of reach for me financially at this time.

I realize the potential severity of this situation, and while I realize I’m likely grasping at straws here, I really hope this letter falls into the hands of someone that can either help me or advise me on how to try to go about getting some help with this before it becomes something that is irreversible. I think that current diagnostics are a basic requirement in even being considered for any clinical trials, and unless something has changed, prior fusion patients are not even considered for clinical trials. I do have all of my original MRI’s and films, both pre and post surgically, but that’s about it.

If anyone is willing and able to help and/or help me find some direction here, it would be appreciated more than words can say! I’ve always been a fighter, and potentially ending up a quadriplegic simply isn’t an option for me if I can help it. I’m open to all suggestions, and please feel free to call me or E-mail me, at the contact information listed above.

I do greatly value your time, attention, and any assistance you can offer me!


  • Have you considered approaching any of the university hospitals? Have you considered contacting the neurosurgeon who did your previous surgery and explaining to him you situation? Sometimes surgeons that do unique cases, will move mountains to do follow ups.

    Sorry I don't know of any definitive places to suggest. I hope you are able to find someone who can lend assistance or advise you.

  • Both of C's suggestions are very good. I would get in touch with your original surgeon. If nothing else, perhaps he can advise you of options that might be available.

    You could try contacted the NIH or look on their website for clinical trials, but I think you are right about probably being ineligible due to your prior surgery. I think your best bet is to try to work with your surgeon. Perhaps there is a county health office that might be able to help.

    I am so sorry you are having these problems and that they are coming on so quickly. I am not that familiar with cervical issues, so can't be of much help.
  • I am only going to tell you what happened to me and hope that you dont mistake it for what is wrong with you. There's a chance it's the same thing but only a doctor can confirm everything I tell you :)

    I had a fusion January 2006 and January 2009 some symptoms came back but they were a different feeling. I had a c4 to c6 fusion with a corportectomy at C5. What happens after a fusion in some cases is the area above the fusion and below it are stressed out and causes other problems. One of my problems was a bone spur and scar tissue at C3/C4. it caused some of the same signs i had before my fusion. I ended up having a posterior Laminectomy/foriumectomy at C3/C4 in June 2009.
    2005-ACDF with Corpectomy at C3-C-5.
    2006-L4-L5 diskectomy.
    2009-Cervical laminectomy at C3.
    Steroid injections series x 4.
  • What a pickle you are in! I have two thoughts: go back to your original surgeon and explain to him or her whats going on. MRIs are very expensive. Going to a "free clinic" might not get you the caliber of doc you would want. Would it be possible, after consulting with your surgeon to go to the ER at the hospital where he works. The ER must take you (I think). Maybe run this idea past your surgeon. Best of luck to you. Welcome to Spine Health. Susan
  • Hi,

    I thank all 3 of you for your postings to me. Yes, I'm finding out that my options are few to none, and adding discouragement and hoplessness to the mix certainly isn't helping any.

    The problem with trying to get help from my original surgeon lies in the fact that he's in CA, and I am now in South FL, but I did try anyway. After making, what seemed to be, and endless amount of calls, I was able to find an imaging center that will do a basic MRI series with contrast on my cervical spine at a price I can mange to swing (they have cash-pay prices), I just have to find a Dr. to write the script for them. My old surgeons office said that he will review the MRI's and reports, and see if there are any options for me in the event that this is failure and not a severe fracture. But they also felt that my options are likely few to none.

    In the meantime, I'm doing what I can, so let's hope!

    Thanks Again!
  • I was going to suggest your state's high risk pool, but Florida is one of the few states not accepting new enrollees - that is aweful! Please do see someone as soon as possible, I agree a state teaching university might be the best way to go!
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