Hi Tara, another SCS stim user here
 

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:

http://neurotalk.psychcentral.com/thread117854.html

The SCS subforum with all of its many contributions is found here:

http://neurotalk.psychcentral.com/forum118.html

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,:smileypray:
:hug:z,
Mark55 :)

Hi Tara:

Just wanted to welcome you to Neurotalks.
You are a very brave young woman. You've been through a lot.

Good for you that you are continuing your education. I hope you fulfill all your dreams and that you someday adopt.

You'll be great.
Best of luck and I wish you more pain free days.
melody

Leesa, thank you for your reply and sharing your story:)! I did go back to see my stim guy on Tuesday. I discussed all my concerns with him but he was unable to reprogram me again and told me that there is nothing he can do on his end for right now and that the reason they want me to see the neurologist was because they think the issues with my right leg (numbness/pain not covered by my stim anymore) is a separate issue. He explained it a lot more clearly than my doctor and told me after I see the neuro who hopefully can give me some help or figure out the numbness cause then I can go back to my stim guy and we can go from there. He also assured me that no one would take out my stim unless I said so, which made me feel a lot better! We also saw my doctor on the way out and he told her what was going on she told me that since the leads have not moved very much that they cannot fix anything or do another surgery right now. So, I guess I have to be patient til I see the neuro and I am back on my walker so I don't fall anymore and cause more problems to my stim!

[/QUOTE]I am so sorry about all your pain you are having to endure while trying to go to college. I admire you for getting into education.

I was an elementary teacher for 25 years....and a reading specialist for the last 12. It is a great field to be in. I specialized in K-2 and loved it.

I wish I had an answer for you, but see you have been given some good links! Hope you stay around with us here at NT. I would love to get to know you better! :hug:[/QUOTE]

Thank you so much for your reply Friend2U :)! I think my drive in wanting to help children is what keeps me going in college despite all the pain ;) I just did my first teaching demonstration last week and it went really good! I was very nervous but it turned out to be a lot of fun! I was so happy that the kids actually learned something from me and it was neat to see that even a short time with them can make an impact. I would love to work with kids from 1st grade probably up to third grade (at the highest) . Thank you for sharing your story with me!

Thank you very much for your reply and for the congratulations! I am so thankful for my husband because he has been with me through most of this and has been to the doctor appts, many hospital stays and test appts and he never gets mad or upset with me because I am sick or in pain! I am especially thankful because I used to be in an extremely abusive marriage so I figured I would never find a man that would treat me well until I met him :) I appreciate your support and making me feel so welcome!

Tina, Thank you so much for sharing your story and replying to my message! I am so sorry about your accident and I am really sorry that you were injured from it! I hope that the stim has helped you though and that your pain is doing better! My accident was in winter and I was on my way to school. I was rear ended by a school bus and then two other cars hit me while I was waiting on the ambulance. I am still scared to drive and have trouble being a passenger at times. I am also still going through a law suit over it which makes things even harder.

In September, I fell outside of the hospital (I was there to get my aortic aneurysm checked on). I did not hit my head when I fell tho. I ended up with a sprained ankle and my legs were all bruised up and swollen I also scraped up my arm pretty good. After that fall I started having more problems with my stim and also I ended up falling some other times which I think added to my stim having problems. When I saw my stim guy on Tuesday he did say that the leads had moved just not enough for them to fix them or do surgery. He and my doctor want me to get checked out by the neuro because they think there is a separate issue going on with my leg that is causing the numbness and extra pain so I have to get it checked out. At least he explained it better to me and was way nicer than my doctor was about it! For the time being I am back on my walker (so I don't have anymore falls). Thank you for the advice and the warm welcome :)

Mark56, Wow! Thank you so much for sharing your experiences with me! I am so sorry for your accident and the injuries that happened to you! I am so glad though that you found relief in the stim or I guess its called (SCS?)on here. I also have a Boston Scientific perm. implant (not the paddle leads yet the other ones) but I had a Medtronic for my temp implant though. I understand how you feel about going through lots of tests and surgeries because I started having health problems in my teens and have had many different surgeries and things removed or in the case of the stim added on ;) I did see the stim guy again and he said my leads have not moved enough for a surgery and that I have to see the neuro. And actually after reading your story about the numbness it probably is a good idea for me to see the neuro because he might be able to figure out what is going on and help. Thank you for the warm welcome and listening to my concerns and offering advice!