- CASE FILE
Bertolottis Syndrome,Post Laminectomy Syndrome, Peripheral Neuropathy & more
ABOUT THIS CASE FILE
Three years ago, at 49 years old, I injured my lower back at work. Due to insurance, I could not see a specialist immediately. I had to do PT first, which made the problem worse. I was then allowed to see a neurosurgeon. After X-rays, MRIs, his plan was to have me get injections for as long as I could, surgery was inevitable. The 1 injection I had also made things worse. My pain was horrible and I couldn't stand up straight or move in any direction much. The day I scheduled my 2 level fusion was the same day my Neurosurgeon explained that I had Bertolottis Syndrome. I had no idea what this was but he said I was born with it and that its and extra vertebrae, which is deformed, but doesn't know whether to be part of my spine or part of my sacrum. I figured he knew what he was talking about as he came highly recommended by my primary doctor of 25 years. I had the surgery in Sept 2016. Recovery was miserable as I cannot take pain meds . Within the first week post-surgery I noticed numbness in my legs and feet. My big toenails were black. Yes, I was scared. They eventually turned back to normal but the neuropathy was still there. Now its 2019 ( 3 years post-op ). I still have peripheral neuropathy but many other problems now too! My EMG will show the neuropathy but now I have Thoracic buldges, Cervical problems ( facet injections for that ) and Neuropathy in my arm and hands. Recently diagnosed with Lupus, RA & Sjogren's Syndrome. I can't live like this. Its been 3 years now and my body is going downhill. I feel like a guinea pig and all my Neurosurgeon can say is that now I need my neck fused. When does this end? My thoracic buldges cause rib pain from my back all the way around to my front and my sternum. I feel like I can't breathe sometimes and my chest hurts. I also get migraines now. My mobility is still gone. I've gained 40 lbs that I've never had to carry before. I'm scared and my quality of life seems to be over. I am now a part of a social media group for Bertolottis Syndrome USA and I've learned a lot. I am questioning the knowledge of Bertolottis with my surgeon because it seems no one knows what this is and how to go about fixing it. The only name that comes up is a Dr. Jenkins in New York but I am unable to see him. My surgeon told me this is an anomaly, rare and congenital...possibly genetic. I am adopted so I have no idea if anyone else in my biological family has it. Please help! I am in pain 24/7. I finally received the Spinal Cord Stimulator, based on only 20 % in trial. It was implanted April 2019. It has been re-programmed 3 times already and nothing is helping. I might get 20% relief for a couple hours but thats it. It does NOT help my neuropathy. I'm at a loss and don't feel much like living this way. I can't believe the lack of knowledge on this. If you had me on your show you would not just be helping me, you would be helping a couple hundred people. The doctors are fusing and resecting without knowledge of the Bertolottis or the mechanics of it. I'm lopsided and lean forward. Pain all day! I'm honestly and sincerely begging for your help. The doctors need to know about this more and learn before they take even 1 more persons life away. Thank you!