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!