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Spina Bifida and Sciatica - The quest for help!

Started by Zhao Yun on 07/18/2016 1:20pm

Greetings everyone,

I am new to this community as I was only recently aware such a community existed. I hope to learn as much as possible and get as much feedback as I can through the community. To get started, I would like to provide you with as much history as I can recall. Thank you in advance for reading this as I am sure it will be long.

I was born with Spina Bifida Occulta (Occulta just means they missed it during birth exam) and lived with it, mostly pain free, until I was 17-18 years old. During this time, I was in my peak physical condition and enjoyed martial arts and many other physical activities. Unfortunately, these were all taken away from me as I grew older. I spent most of my life learning and mastering computer technology and had spent my last year of high school already working for AOL, DirectPC & Pegasus satellite communications at a call center. At age 19, my father asked me to leave my current home in GA to take over the family carnival business, in which he would assist me in learning the trade. I was rather hesitant because of the back pain, but thought I could handle it without any problems. For the most part, I was right. While working with him, we were doing maintenance on a bus in which I picked up an extremely heavy alternator, which brought me to my first realization, something is very wrong with my back. The pain never went away and gradually got worse. Without insurance or even a local doctor that I could see regularly (we were always moving to different locations to setup the equipment), I didn't seek any imaging or treatments. I ended up returning to my home town as the pain in my lower back began causing issues with the workload that was required. At age 20, I finally got a job that had decent insurance and I was working for a magazine company that required strenuous physical labor. With continuing back pain, I finally went to a regular family physician to find out the cause of the issue. Upon taking an X-Ray, the doctor confirmed I had Spina Bifida Occulta. After seeing the image of my L-4 & L-5 vertebra, it finally made sense as to why I was in so much pain. He started me on some light medications: Ultram and Naproxin, neither of which really helped at all. I went to a pain management doctor who prescribed Vicodin, which seemed to help a little, but not that great. Still, it was better than nothing. He also recommended physical therapy, in which I gladly attended, but it made little to no difference (I was in peak physical condition and very trim). When I went back and told him about this, he said that I wasn't seeing a physical therapist that he knew and that he would write me another script of Vicodin, but to also go to a physical therapist (one of his friends) that he knew of. We also had a conversation at the same time in which he explained to a young 21 year old that by the time I was in my late 30s to mid 40s, I would likely not be walking. This made me very angry and during this anger I told him to keep his medication and that I would never be back. If only I knew then what I know now... What angered me even more is that on the last bill, the services mentioned were drug dependence consulting, in which no conversation ever occurred of that nature, nor was it an issue. I only wanted relief from the pain. I later went to one of our major hospitals to see a Family Physician, who also put me back on prescription medication (Vicodin) and again, was sent to physical therapy, which had the same useless results. At this time I was around age 23 and had changed jobs to a less physical one working retail. I heard from a friend of my mother that there is a great Chiropractic group that could really help me. So, I gave it a shot and they were right! It got me off the medication entirely and I lived several years mostly pain free and medication free. At age 25-26, the pain started back again. So, I went back to the chiropractor as well as the doctor at one of our major hospitals, in which I was put back on the Vicodin as the chiropractor wasn't as much help this time (not sure what changed as I was seeing the exact same chiropractor that got me fixed the first time). I also went to a pain management clinic that tried several different treatments with various medications: Neurontin, Lyrica, Neproxin, Ultram, Tramadol, Soma, Percoset, and steroid injections (which really hurt and had no benefit). None of the medications seemed to help remove the pain, only dull it a bit. I also went to a physical therapist in the pain management office that was able to help me get my legs working again as they had started to hurt quite a lot (especially when a storm was coming through or temperatures would change rapidly). After months of therapy, I finally got to where I could walk again, but still experienced quite a lot of pain in my lower back. The doctor at the main hospital took over the medications of the pain management and kept me on Vicodin for many years as well as trying acupuncture, spinal injections, etc (none of which helped really). I ended up having to go to a few indigent care centers a few years later as I lost my job due to a downsizing in the company. The same medications were prescribed though. Once I got my new job (about 5 years ago now) I returned to the main hospital family medicine clinic as well as went to the chiropractor again due to increasing problems with trigger point muscle knots around the area (several injections had been tried in them, but none of them helped). I also tried targeted neural blocking injections, of which I am still uncertain which was worse, the cost or the amount of pain they caused as well as no relief from the pain. Last year, I am not even sure what happened, I don't recall lifting anything heavy (I work in an office now behind a computer desk) and I haven't been able to engage in any strenuous physical activities, but my legs began to hurt like crazy. I could no longer feel my right leg (occasionally it would switch to my left or both legs) and would constantly fall, several times down the stairs, as I could only feel pain in my leg. I lost a lot of sensation as well and could literally punch my leg without feeling anything as there was only pain. Not even the pressure on it seemed to register. So, I went to see a neurologist that did an MRI, which showed the spina bifida occulta (also spondylosis) but was advised that surgery was not needed. My family doctor (whom recommended me to the neurologist) prescribed several pain medications of greater strength (Percoset, time released morphine, zanaflex, etc) but these only seemed to help my back and nothing helped my legs. I spent that entire year also with the chiropractors working on me (even the owner of the practice couldn't get me past this problem with pain) and I was constantly running short on pain medications, especially when it would storm. I was forced on short term disability through my company as I couldn't sit up for more than 30-60 minutes at a time without extreme pain, which forced me to lay on my back. I went in for a same day visit because of a medication shortage due to these problems and met the head of pediatrics whom was working in the clinic that day. She said to advise my doctor to try a Fentanyl patch as I may greatly benefit from it. So, I repeated her recommendation to my doctor and he agreed. Roughly an hour after putting on the patch, the pain in my legs went from a 10 to a 5, so he increased the dose gradually to 100mg patch, along with 10mg instant release percoset (no tylenol) 4 times a day for my back, which dropped the pain to a 1-3, this I could definitely live with and had no issues whatsoever with it! I was truly amazed. I only wish the patch alone would help with my back pain. He also requested I see another specialist for spine surgery (in which he tried to push surgery on me every chance he got), so I drove 3 hours to Emory Spine center, spoke with a specialist and provided the MRI results as well as received an X-Ray there. She advised me that I do not need any surgery and that if the patch was working, to stay on it, but also recommended a Thoracic MRI as I had complaints of problems in my upper spine as well that had been hurting for quite some time. So I got the Thoracic MRI done, which showed T7-T8 with a herniated disc as well as L4-L5 with a herniated disc and degenerative vertebra/disc (which was noted as "normal"). During my time at the hospital and especially during divorce and a surgery to have my appendix removed, the bills got so high that I can no longer afford to pay them, so I am unable to even get an appointment to get my medication. I am now on the search again for a doctor that can assist me with getting the medication so that I can continue walking. The only problem is, I have until 8/1/16 to find a doctor that is willing to prescribe it. I went to a pain specialist center where I live and spoke with an Anesthesiologist, whom advised me that he would never prescribe Fentanyl out of surgery and only wanted to repeat the injections that had caused me great pain as well as no relief. So, I have reached a dilemma, trying to find a doctor that will work with me and actually listen (and look at the history of this problem) to help me get out of this mess. I call it the great doctor hunt as I have to try (while still on short term disability and severely reduced income) to find a doctor that will be able to help me.
If you have any recommendations or advice, please help me! I am at a point in which I do not know what to do and do not want to lose my legs as well as go through the horrible psychiatric issues that are associated with loosing your legs at a young age. Thank you very much for reading this and for having a community to help support those like myself, whom have to battle this all their lives.

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