Hi Tara, and many thanks for venturing to share in this forum! We are all here wanting to do our best to try to help if we may and if we can.
By way of introduction, I am Mark56, a post op permanently installed SCS unit of Boston Scientific manufacture. My implant surgery occurred 29 June, a mere two and a half weeks ago, and thus far I feel grateful to have the benefit of this miraculous device. Having felt it important to share the path of diagnosis to Trial followed by permanent implant and recovery, I started a thread in the SCS/Pain Pump subforum you can find here:
The SCS subforum with all of its many contributions is found here:
One reason for chiming in is my particualar path leading to implant surgery bears some resemblance to yours. This I offer, because I want to help you feel embraced by us as a whole. We each bring a perspective to pain management forged by our walk through life, whether by disease, trauma, or other cause. Pain is pain. It isolates as you know so well. It invades every corner of your being because, well...... it is THERE. We as a group will gladly respond as your needs come to mind and as you post, so feel welcome to post whenever your heart cries out for those who experience these phenomena to come alongside. Length of post is NO BARRIER to entry here. If you feel the need to pour out your thoughts and feelings at length please feel no embarassment. If a post is brief..... OK too.
It is wonderful to learn your husband is there alongside to aid and give comfort knowing you have needs and being able to lend affection, support, hugs..... when needed. I feel SO BLESSED to have the aid and comfort of my life partner, my wife, my soulmate, my best friend. God gave me a most wonderful blessing when 37 years ago HE brought us together, and we are together for life! My wreck now almost 5 1/2 years ago took away from me a wonderful VERY high paying career in law. Our family knew many blessings because of that career which came to an abrupt halt due to my overwhelming gut wrenching pain of the back, legs, arms, hands, and head due to my injuries. I am a veteran of the operating room now, gosh I want to forget.... 27 times. We have striven to put Humpty Dumpty together again, and I think, I hope, I pray, that these many procedures capped by the SCS implant surgery has done just that.
You are SO YOUNG and have so much before you! Sure, the docs are seemingly confused by what is going one, but my situation seemed beset with such issues as well. Docs arguing over my care. One, a friend, stetched our friendship to the point of, well...... dimishment, his choice, not mine, because of arguments with his brethren.
Among my injuries from the wreck was a concussion. Part of my memory dissappeared. Vanished. I was sent for neurologic scrutiny even as you are now being recommended just to make sure everything was OK. They wanted to be sure I had no bleeds. There were none, a fact proven by a series of tests and MRI rides through the tube. That allayed concern from a brain injury perspective although the headaches I endured for MANY weeks after the wreck seemed at first to be the major concern. This may be the reason you have been asked to see a neurologist. I only write of this because my experience showed a reason for the tests.
Regarding the loss of sensation in your lower limbs that issue should be a great concern to your docs. It has been to mine. More tests, more MRI screens, more time. In my situation, it turned out I have permanent injury to the nerves which serve my legs. The stuff of which SCS will NOT address for me. I am numb below the knee in the left leg and in my right foot. I, too, have a wheel chair which I use for long length excursions, a cane for the other times because I am not sensate in my feet. The ground is down there, but my feet do not register it.
The nerve pain which threatened to drive me to the brink of insanity [oh, I don't know, but the concept fits] is due to the permanent injury to my nerves below L6/S1, chronic radicular neuropathic pain, the kind which BURNS and SPASMS without my God sent Boston Scientific unit. I am thrilled so far with my results and am trying to be the obedient patient, allowing the paddles to scar in through healing to a more solid placement.
You present much by way of thought provoking "has my unit been injured" question that I should think your docs and manufacturer rep would want to be certain of your situtation without a brush off as you fear. You and your husband can push together trying to make sure all of your issues are addressed. I know my wife has accompanied me to all of my doctor appointments, in part because I might not remember all, and in part to be an advocate for me if I am missing something. It has been a good solution for us as we worked bit by bit, moment by agonizing moment through this horrific pain profile I presented.
If there is anything I can offer by way of thought on questions you have due to our commonality of issues and situation, I will be happy to chime in. In the meantime, I will definitely pray for you and your family as your situation begs for help far beyond any I can possibly provide.
Oh, and Tara, this is an example of it's OK to write what you need to regardless of the length,
Here for you as you wish,
Praying,
z,
Mark55
